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TySTRAVAGANZA

10/13/08 (by Mom)

So, two and a half months have passed since the last entry. Things are better. Not because there has been any change in Ty (there has not), but rather because of the change in the way we're dealing with his poor choices.

I'll start by telling you about the class we made Ty take. I first saw a story in the newspaper back in April about an ex-felon who now does "Reality Check" classes (think "Scared Straight") for kids in trouble. This gentleman tells it like it is in prison (and he was there for 12 years, so he should know!). He doesn't leave ANYthing out. I clipped the article, but didn't pursue it because as with all things Ty, we knew it wouldn't make any difference in the choices Ty makes (and it cost $300!). Well, after the arrest, I decided that Ty really SHOULD know more about what's in store for him if he continues down this path. I took him to the bank, had him withdraw $300 from HIS savings account, and signed him up.

Next it was on to the meeting 8/18 with Ty's PO (that's "Probation Officer" for those fortunate folks who've never had a reason to know the lingo). I prepared all of the pertinent paperwork, but because the meeting time conflicted with the girls' school dismissal time, Steve took Ty. Well, apparently the PO convinced Steve that should this go to trial, the consequences the juvie judge would assign would not be very significant. He suggested that we agree to allow him to recommend Ty for the P.A.Y Program (Prosecution Alternatives for Youths).


We showed up in the juvie judges courtroom on 8/19 and were made to watch the juvenile detainees (wrist-waist-ankle-shackled, no less) have their judgments dispensed. We were then directed out to the hallway to have Ty screened for the P.A.Y Program.

Next we met with the State Attorney's office on 9/23. Ty's case worker assigned sanctions (consequences) of: 3-hour law information class, 50 hours community service at home, two 500- word essays about "integrity" and "trustworthiness", two letters of apology (to the victim and Ty's parents), attend school, curfew, and house rules. Yeh, if these are more severe than what the judge would have assigned, I'm thinking she (the judge) might have mandated that he...I don't know...eat ice cream?!

I refuse to be involved with any of the sanctions. Ty knows what he has to do, when the deadlines are, and the consequences of not completing the sanctions (he will be prosecuted). Poor Steve has decided to take it upon himself to be on Ty all the time to meet the deadlines of the sanctions. In fact, the writing assignments (which he had to be on Ty about even doing in the first place) are due tomorrow. Ty just finished them this evening. Guess what Steve will be doing to get them to the State Attorney in time tomorrow. All I can say is that Ty is LUCKY to have his dad in the picture, because I would NOT be driving these papers out to the courthouse tomorrow. Ty would suffer the consequences of having to be prosecuted in court.

Basically, if Ty completes the sanctions, he will not be further prosecuted. This means that he will ALWAYS have to answer "yes" to the question of whether or not he's ever been arrested, yes to whether or not he's ever been charged in a felony, but he would answer "no" to whether or not he was convicted.

Ty is still on room arrest (at least until all sanctions are completed...and probably longer since he is still getting into trouble daily for disobeying). He just turned 15 last week. I told him there are only 3 more years we are required to take care of him. I told him he could be on room arrest for the entire 3 years if he chooses to continue making bad choices.

I told him I can do it without batting an eyelash.

I asked him if he thought he could.

Think

about

it,

Ty!

07/27/08 (by Mom)

Ty came home this past Monday afternoon after 5 nights in-patient.

The first two days were ok...he was following rules, acting respectfully, doing chores and working off consequences.

Then the real Ty came back.

Yesterday was awful and we were ready to take the nice arresting officer up on his offer (the day Ty was arrested) to come back and charge Ty with "pre-trial release misconduct" (or something like that). We didn't, however, wish to ruin the weekend for the girls, so what we ended up doing instead was we put Ty in his bedroom, set all of the house alarms (doors/windows, plus a motion sensor facing his bedroom door), and we went out for lunch and then (after coming home to check on Ty), we took the girls to the movies TOGETHER :) How nice! The whole time we were gone Ty was expected to do writing assignments. And what, you might ask, would have happened had Ty disobeyed and left his room? Well, the alarm would go off, the alarm monitoring company would call me, and we would tell them to send an officer out and arrest Ty for breaking and entering. Ty knew we were serious, so he didn't try anything... this time!

Anyhow, this past week Ty finished the consequences (with much whining) for the woman he stole from (apology note, apology in person and $100 in supermarket gift cards...from Ty's own savings account... I made him run, roundtrip about 3 or 4 miles, to the supermarket FIVE times, each time buying a $20 gift card).

I'm tired of wasting "family" time watching him work off (hard labor) other consequences (and I'm tired of nagging Ty to get it done), so I'm hitting him in the pocketbook... withdrawing money from his own savings account to "pay me off". So the only other consequences he's still working off are laps he's swimming. If he ever gets those completed (AND there are no more lying/cheating/stealing/etc. incidents <yeah, right!>), then he'll be off restriction.

What

a

ridiculous

way

to live

!

07-19-08 (again, by Mom)

So, Ty is still in-patient...

and while we have no idea yet the financial toll of this hospitalization...

it has been a priceless gift for the rest of us.

We've spent the entire time just focusing on our marriage and our girls,

making fun memories,

being

happy.

07-16-08 (by Mom)

Ty has been charged with "occupied burglary" (a felony of the 2nd degree; murder is a felony of the 1st degree). Yes, that's right.

Our son is a felon!

So, he apparently sneaks out of our yard (again) unsupervised and without permission.

He walks into our 80-y-o next-door neighbor's open garage.

Opens up her freezer and steals...........

(Are you ready for this?!) a bag of frozen hot dog buns.

Mind you, not because he was hungry, he says... but because he

"thought he could get away with it".

Soooo, our (did I mention that she's 80 years old and that she lives right next door?!) neighbor catches him, says, "Hey! What are you doing?!", to which Ty replies "Sorry!", hands the bag to her, and runs out of her garage and onto our screened porch.

He never tells me any of this.

At dinner time our doorbell rings, and a shaking, crying (EIGHTY-YEAR-OLD WOMAN WHO LIVES NEXT DOOR!) is standing there, apologizing to ME for having to inform me that my son is a criminal.

We call our (by now, nearly good friends) at the Sheriff's Office. They come to our home. Again.

They fingerprint Ty.

They photograph Ty.

They handcuff Ty.

They put him in the back of the cruiser to do paperwork.

He's remanded to our custody and given a court date of August 19.

The officer recommends we get a Court Order of Exparte to have Ty involuntarily committed to the local psychiatric hospital for a thorough evaluation.

Steve obtained the judges signature today, and they just came to escort Ty to the hospital.

I

Can't

Believe

This

Is

My

Life

!

07/08/08 (by Mom)

GOING WAY OUT ON A LIMB POSTING THIS...BUT HERE GOES:

NOTE FOR ANYONE WITH CHILDREN ALREADY IN THE HOME AND CONSIDERING OLDER CHILD ADOPTION: Having younger girls in the home (not biologically related to Ty) I would NOT adopt another older child. I know what you may be thinking... each child is different... every child deserves a family...but consider that no matter what you're told up front, you have absolutely no idea what horrors a child may have already experienced in his short life, and how that will affect his psyche, you, and the others living in your home. You also have no way of knowing whether or not that child truly wants to be adopted, and if he truly understands what changes it would bring. We've found in the last several months that Ty was sexually molested in Taiwan. We've found that the kids (biological and foster) in that home would watch porn on TV when the parents were sleeping and/or out. We've found that Ty was physically abused, even tortured in that home. He witnessed the same abuses against another foster child in that home. The foster kids were treated as second class citizens...not allowed the same basic privileges as the biological children... like... they weren't allowed to use the shower/tub; they weren't allowed to sit at the family table for meals; they weren't allowed beds or even mats in the bedrooms, but had to sleep on the floor in the TV room; they weren't given gifts on special occasions (even though the biological children were gifted elaborately) and didn't even know when their birthdays were. Ty ran away from his foster home at least once. Ty choked another child either to passing out or nearly passing out, scaring the child sufficiently that he never returned to school. Ty killed little critters with his own two hands (lizards and such).

The consequence of all this is severe RAD (Reactive Attachment Disorder), which manifests itself in very ugly ways. For instance, Ty steals. Every chance he gets. He lies. Every chance he gets. He cheats. Every chance he gets. He forges my name. He disobeys. Every chance he gets. He once was caught with my stolen laptop in his room,logged on late at night looking at porn. He steals my undergarments and his sisters' panties to masturbate with. Ugh. He tries to keep secrets with one of his sisters (in an effort to "groom" her to keep other, more sinister secrets... in my opinion). He can't be trusted. We've had to tell his little sisters EVERYTHING in an effort to try to keep them safe, and we've had to make ours a NO SECRETS home. We've had to lock everything up since day one with him. In recent months we've had to install video monitors throughout the house in order to know where he is and what he's doing at all times. We've had to install a security alarm system that tells us if he comes out his bedroom door at night. He has run away twice so far....most recently yesterday. He was gone, roaming the neighborhood, unsupervised, for 15 hours. He showed back up hungry and too scared to sleep outside. After talking with him for an hour and a half, I felt Ty still didn't "get it" and was just saying what I wanted to hear to get back into the house. I made him sleep on the back porch. I spoke with him again this morning. After signing a behavior contract with me (again), he had the audacity to spouted off "Now just stop asking me questions!!"... so again, not ready to come back in. I made him stay outside until 10:30 tonight (a full 24 hours after he returned from running away). I then took pity on him (or the mosquitos!), let him in, told him to go to bed, and I'm sure we'll be back to the same old Ty tomorrow.

As is common with RAD, Ty never accepts responsibility for his actions. It's always someone else's fault. When he is busted and can't lie anymore to make us think differently, he'll then tell us everything he thinks we want to hear about how he's going to do better. Ty has said on at least two occasions (and his actions say it daily) that his "only goal in life is to destroy this family". What do you do with a kid who lives his life with this as his only goal? As is also common with RAD, Ty is VERY charming, social, smart, and funny outside the home. No one who sees him socially could ever imagine the horrors we live with daily. He's also incredibly gifted artistically. Let's see... there's been a cartoon he illustrated (at his Christian school!) in which the main character killed someone and then lied/schemed to get out of trouble...oh, and I've also found his handiwork in pornographic drawings, very explicit, of women in very degrading positions...which he's left lying about for me (his mom!) to find, so he says. Also common with RAD is the fact that nothing works with Ty... reward systems mean nothing (and he cheats his way through them)... consequences mean nothing (there aren't any that are distasteful enough to stop the bad behavior ...even writing many, many, many thousands of times things like "I will tell the truth" or "I will be in possession of only those things I've earned or have permission to have"; writing essays on how his actions affect others; physical exercise consequences...like hundreds of push-ups, after each one saying "I will tell the truth"; Hard Labor like lugging bags of mulch back and forth across the yard hour after hour after hour... he steals with his hands, he labors with his hands; coming clean to his victims and making restitution; swimming laps...he says he hates to swim and hates cold water, yet he obviously doesn't hate it enough to stop the unwanted behaviors.) Ty simply feels entitled. We've seen two different child psychologists (one specializing in sexual abuse victims) over a two-year period. He's been on medication for two years to try to help with impulse control (and has seen a pediatric psychiatrist regularly for that medication management). The only thing that has truly improved in the four years Ty has been home with us is his ability to deceive (he's better at hiding things... like I just found a bunch of stolen stuff hidden in the hem of the drapes I just made for his room; better at lying). We've called law enforcement officers and had case numbers assigned for some of the issues (only to be told there's basically nothing they can do short of Ty committing armed robbery or felony battery or an equally offensive act). Ty has to want to change. We can't "make him" change. We've looked into Residential Treatment Centers and in-patient hospital facilities...all of which would likely bankrupt us... and we would do in a heartbeat if we thought it would help...but since Ty doesn't want to change, it would all be for naught.

Ty's actions affect every single person in our home and extended families far beyond the obvious ways. For instance, unless we pay for a babysitter for Ty, we can't do things as a family. To take the girls to a movie, one or the other of us goes while the other parent stays home to deal with Ty (we're not going to 'reward' his behavior and take him to the movies). We can't go out to eat or to theme parks or anything else very often as a family due to the high cost of paying a babysitter to stay with Ty. It affects whether or not we have friends over or visit at others' homes. We will never allow Ty to go to friends' homes unaccompanied by us (he'd steal and do who knows what else). It affects business relationships (like with our kids' private school... because Ty steals from them, cheats, forges my name, and lies, yet the school doesn't hold him accountable, even at our urging). It affects our finances greatly... all of the psychiatric care, medication, babysitters, private education (his grades stink and the only reason we still pay for Ty to go to private school is because he'd be in SO much more trouble in public school). It feels like our only option is to wait for Ty to turn 18, lock the doors, and let him officially enter the criminal justice system on his own. Sad. As with many other parents of RAD kids, I feel hopeless. I foresee a life of homelessness, crime, loneliness, institutional stints, and jail for our son.

02-28-08 (Mom's words for Ty)

I am 14. I have lived with my forever family for nearly 4 years, having spent the first 10 years in foster care in Taiwan. I have serious medical issues and a long history of abuse in prior placements. I have a sense of entitlement and have stated on several occasions that my "only goal in life is to destroy this family".

Yet my family loves me and wants to see me get better. They want the same things for me that they want for my sisters... for us to be happy and healthy, do our best job always, and be contributing (not draining) members of society.

Yet I choose to be deceitful on a daily basis. I lie, cheat, steal, forge, plagiarize, and blatantly disobey. I have no regard nor respect for other people, their property, nor myself. I choose not to participate in an appropriate way within my family. I choose not to differentiate between right and wrong, although it's clear that I understand that *others* differentiate between the two (because I hide things I know others would find inappropriate -- yet I still do them). I say and do and take what I want, when I want, because I can. Consequences mean nothing to me. I don't care who I hurt along the way. Nothing is ever my fault. I will tell you what you want to hear to get you to shut up. I will apologize, tears in eyes, and turn around and do the misdeed again, over and over. I can not be trusted what-so-ever, and if there's ever a question of my guilt, assume I'm guilty. When caught I will look you in the eye, proclaim my innocence vehemently, and deny my guilt even in the presence of clear, undeniable proof.

My parents have set clear rules from the very beginning. They are probably the most boringly, consistent people on Earth. They say what they mean and mean what they say. Consequences have ranged from "natural consequences" (like writing apology notes to other adults and making financial reparations) to monotonous (like writing thousands of times "I will do the right thing") to physical (push-ups/sit-ups/jumping jacks, each time saying "I will do the right thing" or "I will tell the truth"). I haven't had electronic privileges (games, movies, TV, computer) for most of my time in America. When I've won privileges back I immediately get them removed again (like the day I received my computer privileges back I stole the computer from a closed cabinet in my dad's home office and was on-line unsupervised into the wee hours of the morning downloading pictures of women in bras and underwear and hiding them in a perhaps aptly named folder named "science"). I've had my room COMPLETELY emptied twice and had to earn back my bed and even clean underwear. My parents have turned me in to teachers for cheating, plagiarizing, and forging my mom's name. When teachers haven't held me accountable, my mom has by making me re-write papers and re-do assignments (ten-fold). She's made me read books about people who have turned their lives around. She has even threatened to sit in class with me for behavior issues, and I've actually made her follow through with that threat *MORE THAN ONCE*! I got busted by my mom for downloading info from a website called cheatcodes.com ON THE SCHOOL COMPUTER! I've had to quit extra-curricular activities I supposedly love (like violin) because it's easier to lie about practicing than to actually do it. I've been medicated and seeing a psychologist for two years and a psychiatrist for half a year, yet there has been no improvement in my behavior. I am never, ever allowed to be unsupervised. Sadly I will never, ever be allowed to be unsupervised for as long as I live in my home.

My mom is afraid. She is afraid for my well-being. She is afraid for my future. She is afraid for the safety of my sisters. She has even been afraid for her own safety. She has felt the need to lock the knives up on more than one occassion. She sleeps with a knife in her bed. I have written to her that I intended for *her* to find explicit, degrading-to-women, sexual drawings I've made and left out. I've stolen my sister's underwear and my mom's bras and underwear to masturbate. I've drawn inappropriate pictures of guns and death for a comic strip circulating throughout my (private!) school and claimed ignorance. I called a school friend a bitch shortly after arriving in the US (for which my mom made me apologize in person and writing to my friend AND to her mom, and I had to do something nice for that friend on a regular basis for half a year...things like sending her flowers I picked from our yard, making things for her, buying things for her, and writing nice notes to her). About the time that consequence was over, I called my own mom the same thing but immediately denied it (I told her I said Witch with a "W", but she didn't believe me for some reason!). For the next week I had to wash my own mouth out with soap each and every time before I spoke to my mom (to remind me to speak cleanly to her). I've run away for 14 hours at a time and had the police looking for me. I've written to my mom that I want to end my time on Earth, yet I say all the right things to the psychs to make them think I don't mean it. I've claimed to kill small critters (lizards, etc.) in Taiwan and I claim to have once choked a classmate in Taiwan so severely that he never returned to school. I claim to have run away from my foster family several times, watched porn on numerous occasions while being supervised by the foster parents' biological children, snuck out, covered up for my foster siblings, etc.

I am smart. I am creative. I'm a great artist. I am funny. I am well-liked by my friends. I have a home. I have a forever family with a strong love for Jesus AND for me. I attend the best school. I have the best medical care. I can even say I have a stem cell donor! I have been given every opportunity for a normal, beautiful life.

It's

all

meaningless

to

me.

COPIED OVER FROM TY'S CARINGBRIDGE SITE (so all paragraphs are run together, unfortunately):

Father's Day 2007 Welcome! Thank you for checking in with us for an update on our son. Thirteen-year-old Ty has a very rare, inherited, chromosomal breakage disorder called Fanconi Anemia type A (FA-A)

THANK YOU STEM CELL DONOR!

MEDICAL HISTORY (and ***SURGICAL HISTORY):

Abnormal labs 1996

***Orchiopexy for undescended testicles 1996

Fanconi Anemia, Aplastic Anemia 1999

Long term androgens 1999-2005

Long term steroids 2003-2004

Transfusion-dependent (RBCs and Platelets) 2004-2005

MDS (myelodysplastic syndrome, pre-leukemia) 01/2005

***Central line placement 06/2005

TBI (Total Body Irradiation 450) 06/2005

Chemotherapy (Cytoxan 1.3, Fludarabine) 06/2005

Stem Cell Transplant 6/22/2005 (allogeneic MUD 8/10 match)

AIN (autoimmune neutropenia) 6/2005 - 6/2006

***Baard mediport placement, removal of central line CMV (cytomegalovirus reactivation) 8/2005

Lymphadenopathy 10/2005 - 2007

***Excision of Spitz Nevus (pre-melanoma), ***plus removal of Baard mediport 6/2006

VZV (varicella zoster virus) 6/2006

***Re-excision of Spitz Nevus, ***plus excision of two more nevi in close proximity to first, ***plus sentinel lymph node biopsy ***plus umbilical hernia repair 9/2006

Journal Wednesday, July 11, 2007 I know, I know, ANOTHER 2 months since my last update. In this crazy FA world, you know that's a good thing (if things were going downhill I'd be posting a lot more often, right?). Ty is doing fine medically. Behaviorally there has been no improvement. In fact, after getting busted for something really bad, Ty ran away yesterday. The police were called, missing person report filed. He showed back up late last night and after agreeing to some things was allowed back in. We will be seeking serious therapy for him for the issue that came up yesterday (which embarrassed him into running away). Enough said about that! On to brighter things... we're home with our newest little girl, LeLe! She is a doll baby. Sweet, funny, smart, cute and somewhat OCD (she'll fit right in around here, right?!). She could not be an easier child (seriously). I guess I'm batting 50-50 with 2 easy and 2 more challenging children. So far we've had LeLe to the pediatrician, the geneticist, lab, xray, and echo places (heart murmur combined with midline anomalies always prompts echo). She's begun her vaccinations. She's scheduled with the ophthalmologist soon, and she's having some genetic tests run at the lab. The geneticist diagnosed her a little more severely than we thought, but it's really all just semantics (folks in the medical world can't agree on how to diagnose these kids... so they basically do it by symptoms, which are all lumped under one big syndrome "Goldenhar"... there is a wide range of symptoms, and LeLe is at the lesser end, although not as "less" as we thought originally). Our ped spoke with the local craniofacial team and was told that LeLe's condition is beyond their scope, so we're being referred elsewhere (Miami, Jacksonville, Tampa, etc.)... just need to find a team that comes highly recommended by others, as this will be another long-term relationship. Drive-wise, it'll be at least a 3-hour trip each way, so that doesn't help narrow things down at all. We're all ears if anyone has any recommendations for Florida craniofacial teams. Zoe and CeCe spent three weeks at school camps and had a blast! They loved MAD camp and had a big show the day we were to return from China with LeLe. Steve and I missed it but my sweet sister filmed it for us. Too cute. They then had a week of cheer camp and balloon/magic camp All told, balloon camp was their hands-down favorite. Today was Zoe's bday. She's now eight! It was a great day. We went bowling with extended family and had a blast. Zoe accidentally dropped her whole cake (on the bowling alley floor - ICK!), necessitating a quick run to the grocery store to purchase a pre-made cake for her. No big deal and no tears, thankfully. We got back from China on June 15th, the packers came June 21st, and the movers came on the 22nd! We are still not totally unpacked (and may never be!). Poor LeLe... one week in a Nanchang hotel, one week in a Guangzhou hotel, one week in (our previous address) "hotel", she must be wondering why we've slept in this "new hotel" so many nights! I'll upload some new pictures. Hope all you dads out there had a great Father's Day (it was 2 days after we got home from China... what better Father's Day gift for Steve, right?!) Hugs for all our FA-mily and other friends and family. Love, Karen

Wednesday, May 16, 2007 I know, I know... PITIFUL! It's been two months since I last updated and I have no excuse! I just haven't made the time to update. Well, here goes nothing... I'll try to work my way backwards. Mother's Day was fabulous. I was showered with schoolmade and homemade goodies (cards, place mat, flowers, pink and purple bead necklace, clay bear and clay sea turtle, banner, poster, etc.) from the girls. From Ty I got a ,"Happy Mother's Day". :) (He's thirteen and apparently way too cool these days to make something for his poor mama.) Steve had his surgery two Friday's ago. This has been a tough, tough recovery, but it's going much better now that all the tubes are out. He goes for another follow-up tomorrow, and he's hoping to get his driving privileges reinstated (something about me driving like a bat outta...) The pathology results were good (although somewhat surprising). They got it all (prostate cancer) with the Davinci Robotics Nerve-Sparing Surgery. However, the cancer was actually in both lobes and was 10-20 percent of the whole prostate (rather than what we were told after biopsy, that it was only on one side and only a very few cells). My biggest concern is that there was only a 1mm cancer-free margin on one part... I need to get more info on that tomorrow so I can be as happy as his surgeon is . We celebrated Ty's third year with us on May 3rd. Well, I'm not sure if "celebrated" is really the right verb to use here. You be the judge... I noticed a week before that the outlet protector in his room was out of the outlet. Now, you might be wondering why I'd notice this. Well, Ty is on restriction from any and all electronic equipment (for very good reason), and I'm fairly certain he's never taken it upon himself to vacuum his own carpet... so I knew right away that something much more fun that a vacuum cord was being plugged into his wall after hours. Well, May 2nd I found out (by quickly opening the door to his bedroom long after he should have been asleep) as Ty quickly threw his pillow onto something beside the bed (then told me it was "nothing" when asked what he was doing). What I found was a laptop (taken without permission from a cabinet in another part of the house). He's been getting online unsupervised for at least a week...which helps explain why he's been having trouble getting up on time every morning, too. Needless to say, this didn't go over well with me. This has been the most difficult three years of my life. I am really beginning to understand that *this is it*. This is all we have to look forward to with Ty. He either will not or can not make better choices. He still (after three years) gets busted every single day for some form of deceitfulness... and if you think I'm exaggerating here, I can only say that I wish I was. I hold onto hope that he is in control of his actions (so that someday we'll see better), but the truth is, I'm leaning more towards him just not having that little guy in there that tells him it's wrong and that he SHOULD NOT DO IT. The more I read the more I understand that a lot of these moral issues are truly set by about age 3... and it's really unfortunate for Ty (and for my entire family) that the lessons Ty learned early in life will haunt him forever. But, Steve and I continue to do better at just letting it be Ty who suffers the consequences for his actions rather than the whole family being penalized. So, we get my family to babysit him while we go have fun with the girls. While we realize it's not often enough, we do it as often as is possible. While I've always tried to be creative with consequences, lately I've just taken to writing out something each time he gets into trouble, which he then has to spend all of his time copying (and I mean ALL OF HIS TIME, over and over and over) as a consequence. I always try to include how much we love him, what he did wrong, how he could have handled things differently, how the outcome would have been different, how truth leads to trust, how this is all in his hands, how he is the only one who can change his behavior, etc. If the past 3 (or 13.5) years are any indication, none of it will make any difference in his actions. But, at least I know exactly what he's doing at all times... he's being held accountable (which is important for my girls to see)... AND I know he HATES all this writing (although obviously not enough to stop making the choices that get him more writing). And as I like to point out to Ty when he's complaining about his hand hurting, if he really hated it, he'd make the changes necessary to not earn him that consequence. Zoe just had her first piano recital. She did SUCH a great job and she's still loving lessons. There are only 4 more school days left. Next week she has her dance rehearsal and recital. Then she'll be doing three weeks of school camps beginning in June (music, art, drama, cheer, magic). CeCe is graduating from Kindergarten Friday. Gosh! This has been a great year for her. She has the same schedule as Zoe does through June. Ty was signed up for lots of fun school camps, too, but he lost that privilege with this latest internet sneaking thing. He knows that as long as I can't trust him, he will have NO unsupervised-by-mom privileges whatsoever. I've been volunteering at the school a lot. I love being so close to the kids. I'm going to miss my workmates this summer, that's for sure! We should be hearing (hopefully this week) about Travel Approval from China. I hope to be in China getting LeLe no later than the second week of June. COME ON TRAVEL APPROVAL! Well, this has taken on novel proportions already, so I'll stop there. I won't even promise to try to update more regularly... I know how I am! I hope all you moms had a wonderful Mother's Day. Please keep all the FA children in your thoughts and prayers, as well as the families missing their angels... ~Karen

Tuesday, March 13, 2007 Whew! With the help of CaringBridge, we finally got rid of the nasty SPAM problem in Ty's guestbook. Unfortunately, we now need to password protect the site. A very big *thank you* to the family who let us know about the problem. Ty visited Sloan-Kettering again in February with Steve. Things went very well and Ty now only needs to go every 6 months (rather than every 4 months). He received more vaccinations and was given the OK to get the rest in Florida. He saw the surgeon, the ENT, the endocrinologist, and of course the transplant team. We were asked to get a skin doctor in Florida. We're slowly eliminating NY doctors in favor of Florida docs. Ty's behavior: well, it's still a daily struggle with deceitfulness. Just two Sundays ago we stopped Ty's adderal, as we've seen absolutely no improvement since he went on it 7 months ago. Then on Friday I got an email from one of his teachers asking me *what happened?!*. She said Ty is acting out horribly... disrespectful, running in halls, out of seat, hurrying through work just to get it done, and even wrote on someone's uniform. Soooo, back on the medication and this week he's back to his *old self* in school, according to the teachers. Guess the meds were doing something after all! That, or maybe it was the very real threat of me babysitting Ty each and every day in each and every class *laughing*. Ty's grades have taken a nose-dive this term. He just developed this attitude of "it doesn't interest me so I didn't do it". Also, he was getting busted by us (me and Steve) so much, and turned in to his teachers for cheating, and finally referred to guidance. (Maybe this also accounts for the lower grades, as now the teachers are watching him like a hawk.) Unfortunately, the school consistently chooses NOT to hold Ty accountable in any way. So that still falls to us. For instance, on the paper he recently plagiarized, he had to write a whole new paper for me (no punishment at school even though it's considered a Level II offense, punishable by all sorts of things including a zero on the paper and suspension from school). He also forged my name on a paper he was required to turn back in to his teacher, to which I made him write, "My name is Ty P.... and that is the only signature I will ever sign" about 99 billion times. I also found out that he was doing the illustrations for a comic strip that a fellow student wrote and intended to sell for $1 a piece at school. Unfortunately, the material was totally inappropriate (guns). I turned him in for that, too, since it was to be distributed at school. His punishment for that (by me) was to write his own comic strip and illustrate it, but the topic had to be the Virtue of the Month at school... Love and Kindness. He did a good job. He is an awesome artist. I really hope he uses that for *good* some day :) No news on when we'll be able to bring LeLe home from China. We just received an update, though, and she seems to be growing and learning and doing well. CeCe is still dancing, twirling and singing through life. Just today the Kindergarteners did their International show at school, singing in Japanese and other languages. Each child chose a country and dressed in appropriate costume. CeCe dressed in Vietnamese clothing given to us by my m-i-l (who is Vietnamese). Zoe is doing really well in school and has tons of *best friends* :) She began piano lessons last month and she's loving that. She went on her first real field trip Friday to the Orlando Science Center. I chaperoned (one of MANY parents... so many there were only about 2-3 children per adult). It was so much fun! Steve is doing well. Still no treatment decisions. He purchased a new (bigger) office/warehouse and has been terribly busy directing all that (new wood floors, new walls, new paint, etc.). He also hired some new people (bookeeper and a salesman). They moved in Wednesday and are still trying to get organized. We also purchased a new house (we needed just one more bedroom!). The market here is SO soft, though, so while it was a great deal... it's going to be more difficult for us to sell the home we're in now. No hurry, though, as there's lots to do at the new house before we can move in... new wood floors, new paint, alarm system, etc. I've been busy volunteering at the school just about daily. Also, my sister, Donna, got married Saturday (CONGRATULATIONS!!) so there's been lots of excitement, preparation and celebration around all that. And finally, just having my house ready to *show* at the drop of a dime has kept me incredibly busy. Oh, and I'm heading to NY later this month for a seminar about atresia/microtia (something LeLe has). Donna is going with me. We're looking forward to the trip, even though it's just an over-nighter. I guess that's about all there is to report. Thanks so much for checking in. My computer is dead again (new one to arrive any day now). I've been using the kids' computer, but it has none of my contacts, none of my bookmarked webpages, etc. So if I've been outta touch, please know it's not because I want to be. Hopefully all my old settings will be restored onto the new computer and I'll be back in the loop. I feel s-t-r-a-n-d-e-d. ~Karen (for Steve, Ty, Zoe, CeCe, and LeLe)

Wednesday, November 22, 2006 HHi and thanks for stopping in. I know it's been awhile since I last posted. Thankfully, nothing has been going on medically with Ty since his last trip to NY to remove melanoma cells (they got it all!). He's immunocompetent for the first time in many years. Dr. Boulad said no more bone marrow aspirations EVER (unless labs indicate a need)! Dr. Boulad also said we could miss our December appointment (due to some medical issues with someone else in our family). Our next trip to NY will be in March, when we'll see a whole slew of specialists. Ty continues to have difficulty telling the truth. He began seeing a pediatric psych a couple months ago and was diagnosed with ADD (surprisingly!) for his memory and concentration difficulties. He was started on meds and we are nearing the end of the second month (at a higher dose than the first month). He'll have the doseage upped again next week. Ty says he sees a difference in his memory/ concentration. I'm not sure WE do yet, but he's probably not yet at a viable dose for his weight. We have noticed an improvement in the deceitfulness issues, but a big part of that is due to us not giving him ANY chances to lie. It's working for now. Once we get many weeks under our belts of him having success with truthfulness, then we'll go back to being able to ask him questions which, hopefully, he'll be able to answer truthfully. Ty is a great kid... smart, funny, silly, athletic, kind... he just lived the first 9.5 years of his life without a moral compass being instilled. I was just SO relieved to hear the psych say that she believes Ty does indeed seem to have a conscience... because, how can you 'teach' someone to have a conscience at the age Ty is? Whew! Ty's loving school. His interims came home last Friday with mostly A's (a low B and a low C in some language classes... to be expected since English is his second language). He's on the "I" team at school, which is a team of students who make sure there is no bullying going on. His current enrichment wheel is art (one of his favorite classes). They've thrown some pottery, drawn, made papier mache masks, and are currently weaving. He also loves PE. He's among the fastest runners for track and he's learning how to play basketball. His favorite class is science. Right now they're studying geology and are doing experiments putting acid on rocks. He has lots of friends and he loves his teachers. He seems really happy these days. In October, Ty celebrated his 13th birthday with an Auburn Football party. I only wish the teen years were gonna be half as fun as that party! Zoe's thriving in second grade. She's a great student, sweet, responsible, helpful and kind. She's gaining more confidence in math :) and loves writing, reading and art. She's so polite and quiet, although she's definitely exerting her 'power' as the older sister to CeCe with a real bossy streak. CeCe's LOVING Kindergarten. She tells all of her teachers, all of Ty's and Zoe's teachers, as well as all the older helper-kids she sees that she loves them and that they are her FAVORITE person EVER. She still sings and dances and twirls through life at top speed and top decibels. She's funny and silly and lovey-dovey. Steve has some medical issues for which he's knee-deep in making treatment decisions. More on all that another time. He got his braces off today (these were braces to realign his jaws, not to straighten his teeth). He's very excited. And we have some big news to share... we're adopting again. To find out more about our beautiful new daughter, follow along on our webpage http://www.lasttags.com/stevekaren.htm Thanks for stopping in. Happy Thanksgiving!! ...remembering all of our FAmilies missing their FAngels ...congratulating the Atkinsons for completing the NYC Marathon raising money for FA via their KATA organization - AWESOME! ~Karen

Thursday, October 5, 2006 7:23 PM Hi everyone. Thanks for stopping in. Well, we have now entered the realm of teen-dom. Ty's birthday party was fun (Auburn football theme) and I hope to get some pictures up soon. Medically things are going very well for Ty. Otherwise things STINK (behaviorally), and they're probably about to get a lot worse. We've made some decisions for our family which may or may not have an impact on Ty's choices, but will definitely have an impact of the happiness of the rest of the family. We'll keep you posted. Ty was recently evaluated by a pediatric psych. He was diagnosed with ADD and was started on some medication. He tested low in memory and concentration. He tested average in most other areas. Academically he tested at about the middle of eighth grade math (he's repeating 6th grade this year), but only the end of third grade language. Nothing was a big surprise for us...that's about where we thought he'd be. This doctor seems to think that Ty's behavioral issues will improve once he's been on the medication for awhile, as the medication will give him some successes in school-related things which will supposedly convey to behavior (daily lying and deceitfulness in general, and not doing his best job nor what's expected of him). I'm not buying it, although I do agree that Ty definitely has memory and concentration issues, so even if the medicine only helps with that, it's a start. The doctor doesn't know if the memory and concentration difficulties are a result of chemo/radiation/FA/history in Taiwan and/or just the way he's wired. About LeLe... we got some sad news from China... apparently they're no longer expediting referrals of special needs children... so the wait is now as long as it is for the traditional 'healthy' child program (14-16 months). We've submitted a medical conditions checklist to our agency's Waiting Child Program (8 month wait) and we're checking out other options now as well (like the possibility of adopting from Taiwan again, even though Steve's age is a problem there). We'll keep you posted. Lots more to share, but unable to at this time due to upcoming adoption. Please keep us in your prayers... you'll be in ours as well. Please also pray for T's family as they endure the first of many birthdays without him this month. They're fundraising in the name of their organization (KATA foundation) and have several family members running in the NYC marathon in November to raise this money. Please help support FARF's research donations by writing a check to KATA. Contact me for more info if you're interested. Thanks again for stopping in. Love, Karen

Wednesday, September 20, 2006 6:30p.m. I heard from Dr. Kayton this afternoon. He says the path report is in and there are no dysplastic cells (no cancer)! The re-excised tissue from the first mole came back all clear (so they got it all the first time). The two new moles and the lymph node all had melanin cells, but none were dysplastic. Dr. Kayton just re-emphasized the need for twice yearly skin checks (by him), and hyper-vigilence since we now know Ty has a proclivity for this type of cancer (melanoma). Thanks for all your emails and well-wishes. What a stressful time this has been for more reasons than this alone. More in another month or so... ~Karen

Monday, September 11, 2006 4:20 PM Hi and thanks for checking in. Ty is still uncomfortable, slow-moving, hunched over, guarded...but says he's a little bit better today than previous days. We spent a few hours at MSKCC getting another round of vaccinations. Took awhile because 1) it's a Monday, 2) there were no orders, and 3) the new gal that checked us in forgot to keep trying to get in touch with the person who puts the orders in. *whistling and rolling my eyes* I will say that I LOVE MSKCC....the facility, the staff, everything. I forgot to post on Friday that Linda (who is an O.R. patient advocate) actually goes into the operating rooms and finds out what's going on with "her families' loved ones" and then comes out and reports to each family on a regular basis...like every hour or two. What an AWESOME service to offer families! We've never encountered this at any other facility. And I can't say enough about the 9th floor pediatrics group. There are professional child life specialists, clowns, musicians, etc. all over the place, not to mention a state of the art facility that is colorful and cheerful and full of smiles, life, and folks who always call Ty by name. I can't imagine having to spend the last two years dealing with our dreary, icky cancer facility in Orlando. And other departments at MSKCC are awesome as well... we rarely have to wait more than a few minutes (literally) to be seen in radiology, cardiology, etc. Now, Nuclear Medicine and MRI aren't so prompt, but luckily those aren't areas we go to routinely. And as for paperwork...these folks have it DOWN! Since the first day we arrived at MSKCC 2 years ago where we had admissions forms to complete, the only other paperwork we've EVER had to fill out had to do with authorizations for big procedures like surgeries, chemo, radiation and transplant. (I believe Florida must be extraordinarily paper-happy, because it seems like nearly everytime we walk into an office, there are forms to be updated, or re-done, or whatever....even though we see those doctors every month or more often.) Ty also saw the oncology ophthalmologist today. Dr. Heinemann spent all of about 3-4 minutes with Ty. Ty's vision is fine. The doctor said there is a slight lens change due to radiation... we'll just watch it (ie watch Ty for symptoms like light sensitivity and vision changes) Tomorrow we see the surgeon one last time, and then we're done seeing doctors this go'round. We'll be home Wednesday night. YAY! One funny to tell. I woke up before 2 and just couldn't go back to sleep. So I finally got showered and dressed around 3:30a.m. Ty also got up and we decided to go to our usual 'Three Star Diner' for oatmeal. Now, we're usually there around 6:00 or so... and *ahem* surrounded by a much different crowd than we found ourselves this morning! I always knew this restaurant was open 24 hours, knew they had a counter/bar you could eat at, knew they also served beers. DIDN'T know it was a 'bar' per se. So, there were 4 "gentlemen" and 3 "ladies" (notice the quotation marks, esp around the 'ladies'!) We had to shovel food in and high-tail it outta there before my son got a lewd and lascivious lesson in procreation! It honestly took this small town gal a good 10 minutes of glaring at one 'couple' before I realized it was US who shouldn't be there, not them! (It's a bar, after all! And you wonder why I don't drink *laughing*) Ty and I went out for Indian food at about 3:00 and if you can believe this, he's crashed in bed already at 4:45. Thinking about all the families affected by 9-11... ~Karen

Friday, September 8, 2006 10:52 p.m. Hi everyone. Thanks for checking in on Ty. We arrived in NY Wednesday night, late. Our flight was delayed due to weather, but only by about a half hour. We made it to the not-so-new-but-very-much-improved RMH around midnight and we're in room 512 there. We spent about 7 hours yesterday at MSKCC. We had labs, EKG, bone age films, and vaccinations done. We saw Dr. Boulad, Dr. Sklar (endocrinologist), and Dr. Kayton (surgeon for pre-op). Dr. Sklar's staff went over all of Ty's hormone levels. They will be monitoring everything endocrine very closely every year. They said, like the BMT team will never discharge us, neither will the Endocrine team. There are lots of "late effects" of chemo, radiation and prior meds (long-term androgens and steroids) to watch for. Ty's hormone levels are low, but not low enough yet to warrant replacement therapy. :) We arrived before 6:30 this morning for Ty's surgery. There were big delays in Nuclear Medicine, so we lost our (second procedure of the day) OR room. Ty didn't end up going to the OR until 3:45...spent that first half hour with anaesthesiology... and the surgery got underway at 4:15. Ty was out by about 7p.m. He had an umbilical hernia repair, sentinel lymph node biopsy (explained below), re-excision of the original lesion, and excision of two additional lesions in the same area of the leg. We should get pathology results in about 7-10 days. Five sutured areas altogether, so Ty's uncomfortable. We're in room 917a at MSKCC, but hope to go back to RMH Saturday morning. In Nuclear Medicine they did what's called lymph node mapping. They first inject 4 needles-worth of a radioactive dye directly into the original lesion site (now scar tissue), then they take images of the dye traveling through the body. Luckily, in Ty's case, there was one clearly defined, brightly-lit, sentinel node and it happened to be in the groin. Once ty got to the OR, Dr. Kayton was able to use additional machinery to locate that exact node and remove it. Dr. Kayton discussed treatment options with us, but we're all hoping nothing else will be needed, other than removal of what's already been removed. We were told by the BMT team that Ty may now see an adult dentist every 6 months in FL (vs NY). Most other specialists still need to be seen at MSKCC (as they're experts in cancers in their fields, and cancers are common in FA). Also, labs will now be once a month. We need to come back to see Dr. Boulad in December, but as long as peripheral labs continue to show 100 percent donor cells, there will no longer be need for bone marrow aspirations. Yippee!!! Dr. Boulad confirmed that Ty's FA is type A...for some reason we never received this info from Dr. Auerbach's office. Ummm, let's see, we need to see the head/neck guy (Dr. Singh) in NY every 6 months to 1 year (we'll see him for the first time in Dec or Mar). We need to see the endocrinologist again in 6 months. We'll see the ophthalmologist here next week. Ty's finally asleep. He was without food for about 27 hours due to the delays, so he was really looking forward to dinner...THEN he found out he could only have liquids. Poor guy!! :( He ate it without complaining, though. My computer's hard drive died (I'm on my kids' computer, which I brought to NY). I haven't backed anything up since before Ty went to transplant. The local repair place was unable to retrieve info from the drive so I sent it off to a data recovery company. I'll be just sick if I lose all my transplant pictures and others I've taken since then. I know I was too busy to back anything up the last year...now I'm wondering just what it was I was so busy doing! All this to say that I have NO email addresses nor websites for anyone. Ugh :( Also, I can't send emails from NY for some reason, but I can receive them. I do still have access to MSN Messenger, so feel free to drop in and chat. Otherwise, if you want to hear from me by email, it'll have to wait until we return to FL next week. I do have my cellphone with me as well. Steve and I are about done with all the paperwork we have to do to adopt our next child. Now we're waiting on others' parts to get done. We're all so excited. Her name will be Lena (after my aunt) and we'll call her LeLe. Probably about 6 months before we get her referral. Thanks again for checking in and for all the thoughts and prayers. It means so much. Love, Karen OLD HEADING: Welcome! Thank you for checking in with us for an update on our son. Ty has a very rare inherited anemia called Fanconi Anemia, which progressed to bone marrow failure (aplastic anemia), MDS (myelodysplastic syndrome - "pre-leukemia"), and transfusion-dependency (PRBCs and platelets). We arrived Sunday, June 5, 2005 in NYC and then-11-y-o Ty was transplanted (allogeneic peripheral blood stem cell transplant) on Wednesday, June 22, 2005 at 5:42PM at Memorial Sloan-Kettering Cancer Center. Ty's donor was an 8/10, 28-y-o unrelated male. We arrived back home in Florida on November 23, 2005. THANK YOU DONOR! *We now know who our donor is!* Post-transplant we've dealt with various viral reactivations (CMV, VZV) which are extremely dangerous in immunocompromised patients. Also, Ty developed an autoimmune neutropenia (his WBCs, particularly his neutrophils, or ANC, never recovered) which the doctors say is very unusual, but they believe will correct on its own over time. Now we continue to be hypervigilent about infectious exposures as well as cancer prevention and early detection (FA patients, transplanted or not, are at extremely high risk for developing certain head/neck, reproductive and other solid tumor cancers much younger than in the general population, typically beginning in their early twenties; this is because FA is a chromosome breakage disorder).

Tuesday, August 1, 2006 8p.m. UPDATE: Just heard again from Dr. Kayton (surgeon at MSKCC). He had some more info about the 'atypical spitz tumor / pre-melanoma' and the surgery. Main thing is that he's going to be taking at least 1cm from all sides of the existing incision... which will make a sizeable wound. He also said that he's really unsure about exactly where the sentinel lymph node will be... and how many nodes might need to be removed... he said there could be some sizeable wounds from those also. Therefore, he wants Ty to stay a week rather than the 4 days he originally told us, mostly due to the discomfort Ty is likely to have. He reassured me that we're in excellent hands at MSKCC, as this type of tumor is so rare in children but that of all the cancer facilities, MSKCC probably has the most experience dealing with it. Since I had him on the phone anyhow, I told him that the scarred area where they removed this mole seems to be growing another mole. He said he's not too surprised by that, since one margin was only clear by 0.1 mm. That's exactly why they're re-excising a much larger area. (I forgot to mention that there are also two other small moles a couple centimeters from that spot. We don't know how long they've been there... I guess we were so focused in on the big one... we're watching these two closely now). I also told him that a couple months before we returned home from transplant, Ty developed numerous swollen lymph in his groin, axilla, and neck areas (without injury nor known infection) ...many of which are still swollen and/or hard about 8 months later. (I was so shocked by his original call that I didn't think to mention this lymph issue... but after researching this type of tumor further, I see that the atypical cells quickly go to the lymph... just want him to have all the info.) He said that he doubts this is related to the tumor, but that while he has Ty under, he'll go ahead and remove some of the enlarged/hard lymph to have them sent for pathology. So, I guess I feel better, although I was admittedly a bit surprised to hear from him again.

Monday, July 31, 2006 6:30p.m. Hi everyone. Thanks for stopping in. I actually updated last night, but there was a problem uploading to Caringbridge so I lost everything I typed :( We returned from Maine Saturday afternoon and MY did it feel great to sleep in our own beds. The kids all had a blast at Camp Sunshine. Ty loved the kayaking, rock climbing, archery, challenge course, etc. His least favorite thing was probably being in the talent show (he did the Chinese yo-yo)...he was nervous but he did a super job, as did all the kids who performed. We especially loved Hope's "a tootie ta, a tootie ta, a tootie ta ta" song and Collin's Huck Finn skit... Collin is meant to be on stage! Zoe's favorite part was making friends with Jordan. CeCe's favorite was "Miss Margarita", one of the 70 or so incredible volunteers who took such great care of all the kids. (These volunteers come from all over, and many of them come back every year just for the FA camp.) I loved seeing old friends, meeting new ones, and sitting in on all the classes. I was also incredibly happy to see folks like Jeanne, the Redekops, the Levines, Ralf, the Williamses and others who recently lost children to this awful disease. As much as I hate FA, I can't imagine not knowing all of you in our FAmily. Steve esp. loved getting together with his brother's family at their Maine cabin and when they drove over to Camp Sunshine for a morning. Trevor, Kyle, Susan and Kevin ~ we love you guys! After Camp Sunshine we headed to the Acadia National Forest area (Bar Harbor area) for two nights in a cabin on the bay. Beautiful area and lots of fun and s'mores (of course!) I've been dealing with ear infections (one right before we got on the plane to go to Maine... for which I received antibiotic drops; the other right before we got on the plane to return to FL). I went to see my doctor today and besides another raging ear infection, I also burst my eardrum. Silly me, I used the same antibiotic drops (before the return flight) I had from my other ear infection, only to find out that with my eardrum being burst, only certain eardrops can be used due to the close proximity to my brain! Well, at least now I have an excuse should I put my foot in my mouth, which seems to be a pretty common posture for me these days!! :) CeCe funny: When our plane landed in Orlando we loaded up the car and headed to Chili's for dinner. The gal that seated us was missing a front tooth, to which CeCe (in her commonly heard VERY LOUD VOICE) says, "No fair! Everyone's lost a tooth but meeeeeeee!!" (I sure coulda used that 'eardrops near the brain danger' excuse for that one!) *lauging a bit now* Ty's scheduled for doctor's visits (Dr. Kayton - preop; Dr. Sklar - ped endocrinologist; Dr. Boulad - transplant guy) in NY on September 7th, with surgery set for the 8th (larger excision of pre-melanoma area and sentinal lymph node biopsy). Well, that's about all that's going on here. I'm going to try to upload some new pictures tonight. Chelsea earned her angel wings this past week. Please pray for her family as they maneuver the next days, weeks, months without their sweet baby. Also, please remember 3-y-o Nina who has a brain tumor and only a couple short months to live at most. Her family is strong and finding creative ways of coping, but it's heart-wrenching. FA is horrible. Please help us find a cure. For those who ask what you can do to help, please go to www.fanconi.org and make a donation. This organization has an extremely low overhead... around 5 percent (almost unheard of in the non-profit world!)... with 95 percent going directly to research. Because of donations raised by FA families, 12 FA genes have already been identified, along with very direct links to certain cancer genes, including the breast cancer gene (BRCA). Thank you. Love, Karen

Monday, July 10, 2006 10am Well, it's either feast or famine the way I post. I like it better when it's famine! So, I just heard from Dr. Kayton, the surgeon at MSKCC who removed the mole from the back of Ty's leg. He called to discuss in further detail the pathology report that Dr. Boulad told us was 'pre-melanoma'. Dr. Kayton says the tumor is extremely rare, and that even at MSKCC where they see a LOT of moles, they've only seen about 30 of these in the last 10 years. He said Ty's tumor, unfortunately did have atypical cells (moderate; not mild yet not severe numbers). He said that they've seen enough of these atypical cells spread and invade the lymph (causing lymph cancers) that they treat them pretty aggressively. He said that Ty needs to come back to MSKCC (sooner than his already-scheduled September appointments) to have a re-excision done. He said that while he did get clear margins on what he already removed, the superior margin was just barely clear at 0.1 mm. Because MSKCC removes so many moles each year and most are not cancerous, they typically only remove with a 1mm margin on all sides (which is what they did with Ty). He said regardless of how close the clear margin was to the tumor, they would still go back in and re-excise for the type of tumor Ty has. He also said that because cancer cells from these tumors tend to spread to and invade the lymph they are also going to do a sentinel node biopsy with radioactive dye. The sentinel lymph node is the first lymph node ("gland") to receive lymphatic drainage from a tumor. It stands sentinel over the tumor, so to speak. The surgery will take approximately 1.5 hours and we'll be required to be there for about 4 days. *scary thought for the day* Before we came home from NY you may remember that Ty had a number of swollen lymph nodes which began in his groin, then spread to his armpits and neck. There was no good explanation for any of this (no injury, no signs of infection, etc.). I hate all this. CeCe's case of chicken pox doesn't seem very bad and with benadryl, oatmeal and baking soda baths, and caladryl she's not too uncomfortable. Zoe got a kitty for her 7th birthday (tomorrow). Zoe is so good about being responsible and taking care of herself everyday without being reminded of anything. She's been asking for a pet for about a year. Our other two cats are still sick with a very contagious infection, and have been in isolation for months. This was a good move for our family. The new kitty's name is Chloe and she's sweet, cuddly, cute and playful. She fell asleep on me last night just purrrrrrrring :) ~Karen

Saturday, July 8, 2006 5am UPDATE Reporting from Chicken Pox Central: CeCe now has chicken pox.

Thursday, July 6, 2006 5pm Good news: Ty's last shingles/chicken pox sores crusted over (nice visual, right?!) last Friday so he's no longer contagious, he finished up his IV acyclovir and he's feeling great! Potentially bad news: The girls had their titers checked to make sure they're immune to VZV (they got chicken pox vaccinations a long time ago). Zoe's came back fine. CeCe's did not. We were told she needs to come in for a booster vax. Don't yet know how this translates to us going to Camp Sunshine (except we know she can't go if she gets the booster right now). I need to sit down with a calendar to figure out latest that she could break out (having been exposed to Ty during his contagion) and then I'll call Doc Andy at Camp Sunshine to discuss everything. Well, let's see... I know the incubation period is usually 10-21 days... he was no longer contagious beginning 7/1, so 21 days later would be 7/22. Camp begins on 7/21 I think...not looking good... Good news: Ty got the stitches from his mole removal taken out and it's healed nicely. Bad news: Dr. B called today to say that the pathology on that mole came back as a "spitz nevus" (pre-melanoma). Dr. B said the margins were all clear on the piece they removed, but to be safe they want Ty to come back to NY to have their specialists do a slightly larger excision. Dr. B said they have a lot of expertise dealing with these spitz nevi at MSKCC so that's why he wants it done there instead of here (translated to podunka-ville Florida, apparently :) Good news: Ty's bma still shows 100 percent donor cells; PFTs, ECHO and most labs were normal. His ANC is 1.3 (and he hasn't had a G-CSF shot in 4 weeks!). Bad news but not unexpected: some of Ty's hormone levels are low (testosterone, etc) but we already have an appointment to deal with this (in September in NY with the onc/endocrinologist). I believe they think this is from Ty having received total body irradiation, but to be honest I didn't ask Dr. B. I'm hoping Ty won't reactivate VZV again from the stress the surgery has on his body (the mole removal site is where the shingles/chicken pox started this time, making it look like a contact dermatitis and prolonging the time to proper diagnosis). VZV in immunocompetent people is no problem. VZV in immunocompromised people is very serious business. Good news: Ty feels great, looks great and isn't too bummed about needing more surgery. Please pray for Robbie's family... he earned his angel wings last week... heart-breaking... Please continue to pray for T's family... T went through transplant with Ty and earned his angel wings in February... the second child this family's lost to FA... it's just heart-wrenching. I hate FA. Please remember all the families with empty arms and all the families in all treatment stages of this horrible disease. Thank you for stopping in. Love, Karen and family

Thursday, June 29, 2006 9:00 AM WE KNOW WHO OUR DONOR IS! What an awesome thing!! We've had a correspondence from him and his wife already, along with glorious pictures of their wedding, honeymoon and second wedding in China. This is what we've been waiting for all year long. What a great 1-year transplant anniversary present for my entire family. Thank you DONOR! Love, Karen and family

Friday, June 23, 2006 9am Ty's beginning to feel better already. The itching is greatly reduced (no benadryl this morning), he's not complaining about much pain, he says the sores are smaller, and his temp is going down. He's had a total of 4 doses of oral acyclovir (800mg each) and a total of 3 doses of IV acyclovir (300mg each). He's only getting IV currently, and that will continue for a total of 5 days (and then re-assess). Regarding Camp Sunshine: I spoke with Doc Andy (from Camp)last night and he says that he's hoping Ty's VZV is fully resolved by then, in which case he could go to Camp. He said the girls, on the other hand, probably need to be tested to check that they're immune to VZV (from the vaccinations they got when they were younger). If they are, then they're ok to go. If not, then they'd be considered 'exposed' and probably not ok to go. I can't tell you how surprised I am to hear that any of us might be able to go. The way the paperwork for Camp is worded, if you're exposed to the vaccine or the virus within 6 weeks of Camp, you can't go (at least, that's my understanding of what I read). As for Steve and me, we both had chicken pox when we were little (waaaaaaay back before the vaccination was available), so we're ok to go, too, apparently. YAY! Zoe and CeCe have their first dive meet tomorrow morning down in Sebastian. They're very excited. Ty's in isolation (at home) so it'll just be the girls and I going to the meet (Steve will stay home with Ty). I'll try to get some pictures, although my camera's not much good at long distances. My girls will compete in the 1 meter springboard. I understand this pool has a 3 meter board as well. Hopefully the coach will have time to let them try a dive off that board just for fun :) (Zoe began springboard dive lessons on May 15th. CeCe began June 15. So they're both really new at this. I'm surprised they're even invited to compete so soon, but it'll be good for them :) They're each doing 3 dives. Well, thanks for checking in on us. Please remember T's family as their broken hearts struggle to mend. Please remember Robbie's family as they're saying their last goodbyes to him. Please remember Nicholas and his family as his daily struggles with FA seem so unfair. Please remember Will as his counts have dropped again. And of course, please remember all the other FA families in all stages of this nasty disease. We need a cure! To donate, please go to www.fanconi.org. Pennies count when lives are at stake! Thank you. ~Karen

Wednesday, June 22, 2006 11:17 pm UPDATE DAY 365: It's been exactly ONE YEAR since Ty's transplant, so we celebrated by spending last night in the ER. And, well, it's official. It's VZV. Ty's now on IV acyclovir 400mg three times daily. We're awaiting the home health nurse and the IV acyclovir to arrive. Ty's very, very itchy and in some pain...but we're both thrilled not to be doing this in-patient. THANK YOU Dr. Foley!!

UPDATE Wednesday, June 2, 2006 at 12 noon : Well, over the weekend when the dressings were removed Ty found some itchy bumps near the mole-removal site right thigh and some more on his right buttock a couple inches below his BMA site. This 'rash' has spread to all over the back of his right leg (plus some misc spots on scalp, face, neck, arms and left leg) and now looks like fluid-filled vesicles. We went today for STAT labs and cultures to find out if it's shingles, chicken pox (again), or something else. Ty's been started on 4,000mg per day of oral acyclovir until results are in. Then he'll be switched to IV meds (if positive for varicella/zoster). This isn't looking good for Camp Sunshine. :(

Friday, June 16, 2006 7:30 a.m Hi everyone. Well, it's been nearly one year since Ty's transplant and he (and Steve) just returned from NY. Dr. B says NO MORE RESTRICTIONS (no more mask, no more neutropenic diet, no more avoiding pets, etc) and NO MORE G-CSF. Ty is on Cloud 9. He still has autoimmune neutropenia, but now that the port is out, they're just gonna let his ANC fall where it may. They think Ty's immune system is strong enough to deal with whatever infections come his way. *fingers crossed* (Incidentally, his last two ANCs have been high enough not to need G-CSF anyhow.) They removed his port, removed a large mole that appeared on the back of Ty's leg, and did his bone marrow aspiration. He's sore! They also did echo, PFTs, labs, vaccinations. And he saw the dentist for a cleaning. There were no more cavities and he's now allowed to use floss. We can reduce lab appointments to once every two weeks and doctor visits to once every month. We go back to NY in September and at that time, in addition to the usual stuff with Dr. B, Ty will be seeing the endocrinologist and some other specialists. Ty's still getting tutored twice a week at Holy Trinity. He wants to play violin and baseball... baseball signups aren't until November/December, so we'll try to get violin lessons lined up in the mean time. The girls both made the dive team (1 meter springboard). They both love it and it's SO much fun to watch. Their dance class got cancelled this summer due to not enough children signing up. They'll resume in the fall. All three kids went to summer camp last week and this week. Ty did mind gym and science (loves the science); CeCe did 'making books come to life' and music/movement; Zoe did cheerleading and dance. Today's the last day and there's a cheerleading and dance show this afternoon. Hope everyone has a GREAT summer. Looking forward to seeing many of you at Camp Sunshine in July. I'm really excited that we're nearing the time when we can find out who our donor is. What an emotional day that will be! Please pray for everyone having to deal with this FA madness and please also remember each and every family with empty arms. Love, Karen (& Steve, Ty, Zoe and CeCe) ~Karen

Monday, April 24, 2006 5:00 p.m. UPDATED: Dr. Boulad just called and said that all the labs looked good and Ty can come off the acyclovir, the folic acid and the pentamidine! Yay! **********************************

Thursday, April 20, 2006 7:06 AM Hi everyone. Thanks for checking in on Ty. Here's what's up :) Counts 4/18/06 WBC 3.9 RBC 4.64 Hgb 15.4 Plates 227 ANC 1.86 We had another 6 week follow-up in NY on April 10th. Everything went well and we don't need to go back until June. Ty's been feeling fine. His skin continues to be a problem, but it's being controlled fairly well with topical steroids. The only other problem he's experiencing right now is 'double vision' which began suddenly on 4/5/06. The opthalmologist said he sees no problems with the eye itself and an MRI was essentially negative (only showing thickening of the ethmoid). Dr. Boulad said he's not concerned (in light of the normal exams). It could be a side effect of medication, but that may be fixed here shortly (see below). The local pediatric hem/onc wants Ty to see a neurologist if the double vision continues for another week. Thankfully, the double vision seems to be coming and going (and has been mostly gone the last two days). Ty's 'autoimmune neutropenia (AIN)' continues so he is still getting G-CSF about once a week. At our one-year-post-transplant appointment in June they plan to remove Ty's port. The port is the first place an infection is likely to settle. Once the port is out, we're going to try to stop the G-CSF and see where Ty's ANC bottoms out... and see if his body is able to remain infection-free without the shot. If so, we'll discontinue the shot. If not, we'll continue it. Dr. B says AIN usually corrects itself, but may take years. Also, once all of Ty's immune studies come back (from the April 10th visit to NY), and assuming they're as good or better than they were last time, Dr. B is going to discontinue the folic acid, pentamidine nebs and acyclovir! That will leave only the G-CSF, multivitamins and topical steroids!! :) Dr. B did say that about 20-25 percent of kids reactivate shingles once coming off the acyclovir. He said shingles in these kids often presents itself as severe pain, with vesicles showing up many days later. He said kids have actually been worked up for acute appendicitis and such, only to find out days later it's really 'just shingles'. So, we'll be on the lookout for shingles pain. If it appears, Ty's to go back on acyclovir for two weeks, then discontinue again. I think that's about all to report medically. Ty's 2nd Gotcha Day is coming up (May 3)... that means it's the 2nd anniversary of when we 'got him' from Taiwan. It's amazing all that he's been through and how far he's come in these last two years. Thank you to our donor! I can't wait for the day we get to meet you and your wife in person. Please continue to pray for T's family as they struggle toward a new 'normal' having now lost two of their children to FA. Heartwrenching. I'm so proud of all three of my children who remember Ty's friend and his family at every meal and nighttime prayer. They always pray that "T is having a fun day in Heaven and that God is helping T's family". Karen

Saturday, March 25, 2006 4:30 PM Hi everyone. Thank you for so faithfully checking in on Ty. He's doing about the same. The only medical issues continue to be a rash on his face and a weekly need for G-CSF to boost his neutrophil count. As of this past Tuesday, Ty is back on Hospital/Homebound. He's doing all the same work his classmates are doing....Ty's just doing his at home under my watchful eye. A teacher will continue to come to the house a couple times a week to work with Ty (max 5 hours per week allowed, but doubt it will ever be that much) and to administer tests and so forth. The reason he's not in school now is because it's just not worth it. Ty's having to get G-CSF every week in order to get his neutrophil count high enough to stave off infection. This causes his liver enzymes to be 4 times what they should be. His local doctor thinks it could also be contributing to his body not producing enough neutrophils (ANC too low so body is working double time, then with G-CSF the ANC goes too high so body slows way down... just a vicious cycle.) With Ty being out of school we should be able to go much longer without getting the G, and this will hopefully encourage Ty's body to produce sufficient numbers on its own. Besides, Ty was spending all of his time socializing at school, getting F's, hiding F's and lying about all of it. If he were behaving and getting decent grades, I probably wouldn't have pulled him. But all things considered, it's just not worth it. Anyhow, the first two days Ty was home he accomplished more assignments than the total number of graded papers he brought home from school in the last 4-5 weeks. So it's definitely the right decision. As for next school year, Ty has two options (and being schooled at home isn't one of them). He can either do well enough to not get kicked out of Holy Trinity (where all three kids are going to go) OR he will go to a military academy locally. We will be taking a little tour of the military academy soon so that Ty knows just what his options really are. I've also lined up a pediatric psych to evaluate Ty. He's extremely smart, funny and sweet and we love him to death, but there's something in his head that doesn't connect the wrongness of lying (and other similar behaviors), and the need not to do it. Ty obviously knows that "I" think it's wrong to lie, but I'm not sure that "he" gets that it really is wrong. Lord knows I've been consistent with the way I deal with it, but it's been nearly two years since he joined our family and he still doesn't get it. I hope this doctor can help us get to the root of the problem and offer suggestions for fixing it. Soooo, that's what's going on here. Please pray for Ty as he is grieving the loss of his good friend, T, who was transplanted a couple weeks before Ty and who never got to go back home after transplant. We all are grieving. My little girls pray everyday that T is 'having fun in heaven' and Ty prays that T's family is 'being taken care of' by God. The number of folks at T's service a couple weeks ago was staggering...around 1,000! And the eulogies given by family friends and T's good buddies were awesome...evoking tears and laughter alike. The slideshow in the church was fantastic, as was the music (including the Star Wars Theme at the very beginning!). Three of Ty's and T's nurses and one of T's nursing assistants also flew out for the services... very touching. We will never forget T and his family will always be a part of ours... Please also pray for other FA families in treatment, FA kids doing well, and families with empty arms. MANY thanks to our precious donor for the extra time you've given us! Love, Karen and family

Saturday, February 4, 2006 9:27 AM CST Hi everyone. I'm sorry for not updating sooner. Things are so busy and there's so little time to get online. I still check websites, but barely have enough time to keep up with that, never mind updating about us. I'm not even going to promise to try to do better at this point, but please know that if anything major happens, I will post about it. Ty's doing well health-wise. He continues to need G-CSF for low ANC. He continues to have rashes (pretty consistently on his face and behind his ears, requiring topical steroids; elsewhere periodically still as well). Lymph nodes are still swollen, but with decent counts there's no concern. Ty gets blood drawn from his port just once a week now. He sees the local pediatrician once a week (plus whenever other issues arrise). He sees the semi-local hem/onc (in Orlando) once a month. And he sees Dr. Boulad in NY every 6 weeks. Right now Ty has conjunctivis and is on drops for that. He went to the ped yesterday to get his eyes cultured to make sure it's "just pink eye". Should hear something this weekend if it's anything else. (I'd never really even heard of getting eyes cultured to be honest!) Behavior and school-wise, not so good. No point in going on about it now, just suffice it to say that I've removed everything from Ty's room except for his bed; I've sat in his classes at school all day long to babysit (with the very real threat that I will yank him out of school and homeschool him again if needbe!); and I've removed nearly every privilege except breathing! Hmph. I'm just glad he's HERE to be testing us :) The girls are doing very well. It's SO GOOD to be home! We're making lots of changes inside our home. For those of you who've been following along, we've decided to sell the property we wanted to build on and stay in this home awhile longer. We may also possibly buy a vacation home somewhere in the mountains. The property we have is across from my sister's home, but she's moved out of the neighborhood, so now there's no real reason to build there. Besides, we own one of the last remaining lots in that neighborhood. We recently found out that the last single lot sold for $300 thousand. We paid $75 K maybe 2 years ago, so it seems like a good time to sell. Back to the changes in our existing home... we're having walnut flooring put in the master bed and bath (we had the same flooring put in most of the rest of the house when we first moved in. They're close to being done. Then everything inside the house needs to be painted. It's been the same pale yellow since it was built and owned by the previous owner. I'm ordering new seating for the toy room and living room (we never really buy NEW anything... seems I'm always going to consignment shops, 'junk' shops, antique shops, or dumpster-diving for our things <*laughing*>. It'll be nice having some new things that I didn't have to 'fix-up' in order to use :) We already purchased a new bed for Steve and me and new twin beds for Ty. They're very low platform beds (think 'minimalist/Asian') and I LOVE them. It took me 12 years to find something we both loved, but by-golly it was worth the wait! I already found the seating I want. I've been measuring and imagining which pieces would work well and am about ready to go place that order this week. The seating is called "slide show" because it's designed like this: each piece has a big platform/box onto which the other pieces fit. It is 34" deep, and all the pieces are some multiple or factor of 34 so that everything is interchangeable. For example, the chair has a 17" x 34" table and and 34" x 34" seat cushion; the ottoman has two 17" x 34" cushions. The tables can be exchanged for the cushions making the chair bigger with no table, and the ottoman becomes half-ottoman/half-table. The couches and loveseats work the same way. The seating can be all on one side with a big square 34" table at one end... or the seating can be in the middle with a 17" table on each end... or the seating can be on the ends with the table in the middle... or the tables can be removed and replaced with the cushions from the ottoman... well, you get the picture. Anyhow, I love the idea of the versatility and I love the very streamlined (minimalist) lines of the pieces :) I can't wait, but unfortunately will HAVE to, as it takes about 3 months for this stuff to arrive. I've ordered new lighting for the bathrooms. The "Hollywood Make-Up Lights" we have now were never to my taste! I've found barstools we like for the kitchen counter area. I'm looking for new faucets. And someday there are more significant changes I'd like to make to the kitchen, but only if we're going to be here long enough to warrant it. So as you can see, I'll probably be busy with the house for a very, very, very long time. But I like having these projects. I heard from Holy Trinity, the school Zoe went to before Ty arrived. They now have openings for all three kids for next school year. I'm excited that my three will be leaving public school for smaller classes, zero-tolerance policies, and higher expectations. This particular school has INCREDIBLE statistics when it comes to it's graduates being accepted into Ivy League schools... and actually GOING to college. (We had to pull Zoe out of Holy Trinity when Ty arrived in the U.S. because, being a private school, there were just no resources to deal with Ty's language issues.) Ummm, let's see... I think that's about all there is to report. Thanks for checking in. A BIG THANK YOU to our DONOR for everything he did for our family. Please pray for all those in treatment, all those doing well with FA, and for the families with empty arms. ~Karen (and Steve, Ty, Zoe and CeCe)

Tuesday, November 29, 2005 9 AM Hi everyone. We arrived home last Wednesday evening thanks to the awesome folks at Angel Flight East, Angel Flight SouthEast and CairFlight. We managed to really surprise the girls... it was a GREAT night! It feels SO GOOD to be home. Ty's doing fine health-wise and settling-in-wise. Everyone else in the house has colds, so it's a sea of yellow masks (and of course ritualistic-bordering-on-obsessive-hand-washing!) :) We miss our friends at RMH. We'll see ya'll again December 26th. I'm sure the holiday parties at RMH are already in full swing. We watched the Macy's Thanksgiving Day Parade on TV and thought about ya'll seeing it in person there in NYC. Hope you all had a wonderful Thanksgiving. We sure did. I just received the discharge plan for Ty via email from Dr. Boulad. I need to read it more thoroughly, but it looks like Dr. Boulad changed his mind and is letting Ty go back to school now rather than waiting until cold/flu season is over in March. We see his local doctor tomorrow, so I'll discuss with him to be sure, as Ty's ANC is consistently low enough to require G-CSF still. The rash is still resolving and the lymph nodes are all about the same. I'll post his labs later when I have them in front of me. Taylor~ Ty says everyday that he misses you SO MUCH. Hope you're doing great! Much love, Karen

Monday, November 21, 2005 11:32 PM We are going/coming home Wednesday!

Saturday, November 19, 2005 10:30AM EVENING UPDATE: Ty has a rash. It's only on his legs. It itches and it burns. Day 150 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Discharged MSKCC 7/15/05 Admitted MSKCC 9/22/05 Discharged MSKCC 9/24/04 Leaving NYC 11/22/05 or 11/23/05 (THIS IS A SURPRISE FOR MY GIRLS...please do NOT give it away!) COUNTS 11/17/05 and/ 11/14/05 and (normal) WBC 5.3 / 2.1 (4-11) (got G-CSF on 11/14) HGB 13.0 / 13.4 (13-17) Platelets 125 / 158 (160-400) ANC 2.7 / 0.5 (1.5-8.8) (got G-CSF on 11/14) CD4 158 Well, as you can see, Ty's counts went down again. Even so, Dr. B said we can go home after next Monday's appointment. We're both very excited to be going home finally, but I can tell you I'm still concerned. Here's a recap: The first 4 months post transplant were (with the exception of CMV and one hospitalization for the flu) mostly uneventful. If Dr. B had said a month ago we could go home, I would have been thrilled and had no concerns. But in the last 5 or more weeks we've had: 1) a staph aureus infection 2) a rash 3) swollen lymph 4) falling counts The good news is that we've found no NEW swollen lymph since midweek last week, although all of the previous swellings are still there. The rash is resolved. We presume the staph aureus is resolved, as it was treated (and the only symptom Ty ever had was blood in his sputum which came from his nasal sinus area...and that has cleared). The unnerving news is that (along with still having all these swollen lymph) his counts continue to fall even though there are no obvious signs of infection. Dr. B is sure that this is all just Ty's new healthier body's way of fighting some little bug he has going on, but this lymph thing has been going on for a month now I think, and the counts for the last week or so. I'm most concerned that either 1) Dr. B is right and there's an infection brewing and we'll get home and end up in a FL hospital, where they know hardly anything about dealing with post-transplant FA kids or 2) There's something more ominous brewing and we'll get home and end up in a FL hospital, where they know hardly anything about dealing with post-transplant FA kids Anyhow, we have one more appointment before coming home. We'll see Dr. B on Monday, have labs drawn, receive a precise list of do's and don'ts, and get any final issues squared away. I'm going to ask him for 'trends' lists of all counts in the last couple months, 'trends' lists of all CMV and EBV, and any other recent lab, xray and bone marrow reports I've not gotten written reports on, including the ferritin they drew this week (**note to Karen: which could be important in diagnosing Hemophagocytic Lymphohistiocytosis - HLH) (***another note to Karen: and anything else that might be important in diagnosing Post Transplant Lymphoproliferative Disorder - PTLD.) I hope Dr. B is right. And I hope if he is right that whatever bug it is reveals itself this weekend before we leave NYC. I'd much rather get stuck up here for a longer period of time, than chance going home and dealing with stuff there. After all, we came to NYC for a reason...MSKCC is one of only three facilities in the entire US that deals with FA transplant kids. The hardest part about leaving NYC is that our 'comfort zone' of having people right on top of Ty's medical situation at all times will be gone. Easily the second hardest part of leaving is that our friends, Taylor and Jeanne, will not be leaving before us even though their journey began a couple weeks earlier than ours. Please pray that Taylor's GVHD is brought under control and that the dangerous steroids he's on can be tapered and discontinued and that they can be on their way home to Colorado SOON. Jeanne, I'm going to miss you two so much! I couldn't even imagine having made this journey without you here. I honestly wish it was YOU going home first, as it should be. We'll miss (and worry about) all the friends we've made here at RMH. We are scheduled to return to NYC on Monday, December 26 for appointments beginning Tuesday the 27th. Please pray that the transitions we're about to make go smoothly and that Ty's counts and lymph nodes improve on their own. Please pray for all the FA and cancer kids in treatment, as well as for all the families with empty arms. Thanks for checking in so faithfully. Again, please don't let word get back to my girls... it's a surprise. Karen

Monday, November 14, 2005 5:30PM Day 145 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Discharged MSKCC 7/15/05 Admitted MSKCC 9/22/05 Discharged MSKCC 9/24/04 COUNTS 11/14/05 WBC 2.1 (4-11) HGB 13.4 (13-17) Platelets 158 (160-400) ANC .5 (1.5-8.8) CD4 158 We finished up at Clinic today around 2:00 and then had to wait around a bit for my flu shot. We got back to RMH around 4:15 and we're winding down for the day. It's been QUITE a roller coaster ride today. Dr. Boulad asked when we wanted to go home. I said, "Tomorrow." He said, "How about next Tuesday?" YAY! So I called Steve, Donna, Mom, Dad and Miss Anita to tell them the good news and to ask them to KEEP IT A SECRET FROM THE GIRLS... not to even suggest to them there is a secret, because I want to totally surprise them. Unfortunately, a little while later Dr. B stuck his head into our room on the PDH (we were there for the 6 hour IVIG infusion) and said Ty's numbers were too low this time. SO, everything's on hold. Ty will have more labs done on Thursday. And by Friday all the labs he had done today will be back. So Dr. B will let us know what's going on Friday. Of course, by then, it'll be too late to book Angel Flights home, so looks like the earliest we might make it home would be the weekend after Thanksgiving... IF they can get any pilots for that time of year and if we get the OK to go home that soon. Regarding bone marrow done a month ago, they're still missing an important part of the test (the donor/host cells, to make sure he's still 100 percent donor cells). Lab says they never got it. SO, Dr. B ordered some sort of blood test that will give him a good idea of the status. I think that's the test he's wanting to see Friday before telling us whether we can go home. I didn't mention the lymph nodes in the exam room today. But when Dr. B came to tell us Ty's labs were too low to go home, I did ask him again if he's concerned about that part. He said, "No. And neither are any of the other doctors here." So. Fortunately there are no new swellings since the supraclavicular one showed up last week. I think we're up to about 10 or 11 since that first one showed up in his groin. If none of the 4 transplant doctors here is concerned, then why should I be? Ty's science project is coming along nicely and his board looks GREAT! He got some really interesting results doing this experiment...results that could actually impact him. Interesting! (For those who don't know, his project this year is "How Does Cancer Affect the pH of Spit?". Of course, it's a 12-y-o science experiment, but interesting results, really.) That's about all from this end. Again, please DO NOT SAY ANYTHING TO THE GIRLS about us possibly coming home before Christmas. It's a surprise :) Thanks. Thank you also for checking in on us and for keeping Ty and all the FA (and cancer) kids in your prayers. We lost another long-timer here...Valasiki. I know her family would really appreciate your prayers. Karen

Monday, November 7, 2005 11PM Day 138 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Discharged MSKCC 7/15/05 Admitted MSKCC 9/22/05 Discharged MSKCC 9/24/04 COUNTS 11/7/05 WBC 2.7 (4-11) HGB 12.9 (13-17) Platelets 189 (160-400) ANC 1.2 (1.5-8.8) CD4 is 158 (it was 185 when last checked, so it's gone down some; this isn't of any concern to Dr. B). Chest film from last week was apparently fine. Dr. B and Heidi examined all of Ty's swollen lymph nodes (about the same), torso rash (resolving) and foot rash (gone). We were on the schedule for IVIG and pentamidine today, but when they re-counted the weeks turns out this is the wrong week for IVIG. So, Ty had school this morning and we're just hanging out in the PDH until 3:00's pentamidine. I asked Dr. B (since he says he's not concerned about the CD4 going down and since he says he doesn't think there's anything big going on with the swollen lymph and rashes) if that means we can loosen up on restrictions. I thought I was calling his bluff, but after some consideration he surprised me by saying, "Yes." So, Ty now only has to wear a mask in crowds (and only b/c it's cold and flu season) or when someone around him is sick. He can eat some food periodically from restaurants, although not necessarily IN restaurants (due to crowds...so we could order in....when he's not on restriction). We can go to stores that aren't busy (like the bookstore at off-peak hours) periodically. Because Ty's CMV antigen came back 'positive' meaning his body should be able to handle the CMV on its own, the Ganciclovir has now been officially discontinued. They re-started Ty on a prophylactic antiviral called Acyclovir 200mg which he'll take three times a day. Ty's CD4 is low, but coming off the Ganciclovir and Cytogam should allow it to increase on it's own, so they're holding off on giving the G-CSF. Ty tends to run a fever if his ANC is lower than 1.2. Hopefully his body will kick in some extra cells quickly :) There are no bone marrow results in yet (still!) so Dr. B is calling to find out what the hold-up is. And finally, they want Ty to see the dentist due to some gum issues (he's still not allowed to floss due to infection-control). I just remembered that there should be a sign-up sheet for flu-shots for family members here at MSKCC (it was supposed to go up Nov 3), so I'm going to go ask about that now. That's about all the news from here. Steve's feeling nearly back to 100 percent :) A big thank you to Mom for helping out so much. Also, things with Zoe seem to be settling down. We're trying really hard to get the webcam up and running everyday (rather than 'just' talking on the phone). I think it helps all of us to stay better connected. As always, thank you for checking on Ty and for continuing to pray for him and all the other families dealing with FA.

Saturday, November 5, 2005 4:07 PM CST MISTAKE: Well, this morning when Ty went down to get the IV Ganciclovir out of the medication refrigerator, he said, "There are only two left." I explained that that's because they are going to try to switch him to the oral kind of Ganciclovir this week. Well, tonight I went down to get the IV for tomorrow morning (since the medicine room isn't open when we get up) and there were NONE in there. The front desk says that they may have gotten thrown out while cleaning out the refrigerators. WHAT?! They were properly labeled and not expired, are VERY expensive and WE STILL LIVE HERE! Besides that, they're CYTOTOXIC (extremely dangerous) and I'm sure all they did with them was put them in a trash can. Not good. Day 136 Post Transplant Tonight Ty has an itchy rash again behind his ears PLUS on the bottoms of his feet (he didn't have the pityriasis on his hands, feet nor privates before). His feet are bright red. He's continuing to use the Lidex as directed, adding it now to his feet as well. The swollen lymph are status quo. Actually, Ty thinks some of them might be a bit smaller (like the biggest one under his jaw) but nearly all of them are now rock hard, like pebbles, instead of just swollen feeling like before. Don't know what that means, just documenting it. We'll see Dr. B at Clinic on Monday. Hopefully all of the test results will be in by then (and be negative for anything important). Not much else to report. Just hoping/praying symptoms are gone when we awaken tomorrow :) I'm ready to go home. I got to see/chat with my girls on webcam today (a couple different times). I've really missed seeing them online. Unfortunately, the service here at RMH (even out in the hall where I go) is splotchy at best, so we get bumped off often, but I think I just need to do it everyday, pain as it is, so the girls have a more tangible connection to me/us (and us to them). Zoe is doing an AMAZING job reading to me when we're online. Big words like 'important' and 'different' just flow right out of her 6-y-o mouth without so much as a hesitation. I love it. And CeCe 'read' "Brown Bear Brown Bear What Do You See?" to me today. Too cute! Poor Steve now has the GI bug that the girls had. He's miserable. Mom went over today to tend to the girls so Steve could rest a bit, even though Mom's not feeling great herself (may be coming down with the same GI bug as well?). Poor 'guys'. Well, that's all for today except to say that the weather here was actually WARM today. Nice :) ~Karen

Friday, November 4, 2005 3PM Day 135 Post Transplant Well, thankfully everything today is about the same as last night...no new swollen lymph nodes and no new symptoms. And actually, the 2cm one under his jaw doesn't seem to be as big, although it's hard to really determine it's size since it's hard to feel it's edges (it's more flat rather than the usual round). I plan to do NO more reading about any of this online. It's enough to drive anyone crazy. Now, I'm just praying all the symptoms go away on their own over the weekend. I heard nothing from the hospital while we were there for school all morning, so I presume labs/xrays from yesterday are all OK so far. They'll call if anything is amiss I'm sure. Dr. Boulad stuck his head in the waiting room today to ask if Ty and I are ok (more like a psycho-social question than a medical question), so I just said, "Yes." Boy, am I ready to get out of here. Have I said that before? Zoe is exhibiting some very out-of-character behaviors at home. For those of you who know her, you wouldn't even believe it if I told you the things that have happened over the last week! She's got Miss Anita and Mema and of course her teacher, Mrs. Olsen, and her dad all taking good care of her and watching out for things...but I need to get home, esp. if Ty's numbers are good and these lymph nodes will go back to normal. It's time... This is so not good for the family. Ty got his report card today and did pretty well. Sixth grade is much harder than fifth grade, but his teacher was really decent and fair in his grading. It's really amazing when I think back to 1.5 years ago when he first arrived in the US and only knew about 5 words in English. He's come a LOOOOOOOOOOoooooonnnnnnnnnnnnnnnGGGGGGGGG way, baby! Much of the stuff Ty can improve upon for next grading period revolves around doing his best work the first time 'round, which he's working on :) CeCe's back to school today after a brief bug of some sort and Zoe's home from school today. Hopefully she'll start feeling better over the weekend. Poor punkins. It was another beautiful day in NYC. Perfect weather all week long (put the coats away again last week; just needing lightweight jackets this week). I dropped our laundry off across the street again so I wouldn't be stuck waiting for machines here all weekend. I'm glad we can afford to do that pretty often. Speaking of money, seems our health insurance company is denying ALL claims lately. Many, many tens of thousands of dollars...probably nearing 100,000 if not there already. It's so frustrating dealing with all this in the midst of this medical stuff, esp. since we have authorizations for everything! Anyhow, it's too difficult and time-consuming to weed through all this and to be on the phone constantly with the insurance company pleading for help, so Steve has found an attorney to handle things. Not to sue, just to figure out what the problem is (sometimes it takes an attorney and his 'title' to get answers that we 'little people' can't get on our own). Steve can't even get the insurance company to tell us why they're denying the claims other than 'not covered'. What does that mean?! We literally had 'carte blanch' before coming here "for transplant and all inpatient and outpatient services related to transplant through January 2006". We knew we'd have parts we'd have to pay, but this amount was not part of the deal, for sure. And you probably couldn't even GUESS how much we pay for insurance per month! Hopefully Steve and the attorney can get it figured out. One more stress in all of this. I know these emails have been pretty negative lately. Again, much of this is for my own records as much as to let you know where we are in the process. Where we are is 'sick and tired of being in the procss' :) *smiling* That said, I'm glad we still have Ty to 'be in the process with', as if we were home already it would only mean bad things. Please say extra prayers for Ty to lose the swelling in the lymph nodes, for Zoe and CeCe as they struggle with such a huge disruption in their lives having Mommy and Ty away from home for so long, and for all the caregivers who are holding things together for us while I'm away. Also, please remember Taylor who is back at RMH and looking great, although dealing with GVHD now; A. who is still struggling with lots of serious viruses; Brian who's been discharged again after serious GI bleeds and is feeling much better; Jordan who continues to do well OUT of the hospital; Devin and Erin who are in and out of the hospital recently for fevers; Kailee (adopted from China) who finally has a match and has begun chemo/radiation prior to her Dec 7th transplant (second one); John, Ryan and Robbie all getting ready to head to transplant; and all the families struggling in different stages of FA. Jeanne heard from Oscar's mom, Eva, the other night. They're back in Ireland and doing ok (as ok as they can be). And finally, Bailey who lives here at RMH is not doing well. Her dad was called back to town this week and Bailey was transferred from MSKCC to the PICU at the hospital across from MSKCC. I know her family would appreciate your prayers. It's rough.

Thursday, November 3, 2005 3:15 PM Day 134 Post Transplant Hi everyone. Well, we arrived at the hospital at 7:30 am and we just arrived back at RMH. Dr. Prokop examined Ty today and ordered lots of tests (blood, chest x-ray, urine, nasal and throat swabs). We got tired of waiting around and figured that they'd call if anything was amiss. Dr. Boulad stuck his head in earlier today to give me some labs on Ty (from Oct 24). One is the CD4 showing 185 which he told me about Monday. Another was Ty's CMV antigen showing 'positive' (YAY!) meaning that his immune system is good enough now that if he were to get hit with CMV again, his body is strong enough to fight it on its own to keep it dormant (like yours and mine would do). They'll start discontinuing/switching CMV meds on Monday. (Incidentally, found out Cytogam isn't even being made any longer anyhow... that they'll just treat CMV with the 'regular IVIG' they give everyone, just higher doses of it for CMV. I'm glad his CMV is under control enough to come off the Cytogam so we don't have to wonder if the 'regular IVIG' is 'covering' the CMV or not.) Dr. Boulad also gave me the Phytohemagglutinin-P results which are withing normal limits (which means Ty's overall T-cell function is GOOD). All this to show me that he doesn't think that Ty could possibly have EBV or PTLD. As for the swollen lymph in the groin (which are the concerning ones since no obvious infection and no injury to that area), Dr. B doesn't know why they're swollen. Neither does Dr. Prokop. Dr. B says that because Ty has/had the viral pityriasis rash recently, it could be something as simple as that. (Which I agree with for the swollen nodes in the neck and maybe for the ones in the armpits, but not for the groin.) So, we'll just await the results of all the testing today and reassess at Monday's Clinic visit. For about a week Ty's had that reddish/brown lower eyelid area that he usually gets when he's sick (and that he had for months before tranplant). He just doesn't look right. Also, Ty just found a 4th swollen lymph node in his groin and he's complaining about 'hurting' in his right hip area (same kind of hurting that he's been having in his rib cage area). It left just 2 or 3 minutes after it started. Also, there is a much-larger-than-before swollen lymph under Ty's jaw (right mandible area about 2cm ) where it's normal on the left side. Odd. Hopefully we'll just awaken tomorrow or the next day and the concerns will be all gone. ***PLEASE DO NOT MENTION ANY OF THE FOLLOWING TO MY GIRLS! I want it to be a surprise whenever it really happens, and I surely don't want to get their hopes up for nothing. Dr. Boulad did say that with Ty's numbers looking so good and IF everything comes up normal on all the testing they're doing this week, then 'we need to think about getting ya'll back home'. I asked if he meant by Christmas and he said 'at least'. I asked if he meant by Thanksgiving and he said 'possible'. Hm. I'm really torn about this. Ty's had a really smooth (relatively speaking!) process throughout transplant... with the only real hitches being the big one (CMV) and a minor hospitalization for a flu virus. Now all of the sudden he's had a rash of things: 1) the rash, 2) the staph aureus infection, 3) the swollen lymph, 4) the generalized discomfort (buns, thighs, chest, hip...all of short duration, off and on, and only a '2' on a scale of 1-10) and 5) not 'looking quite right' (although he feels GOOD most of the time!) and they're talking about letting him go home. I'll believe it when I see it. The worst part is that we'd be leaving Jeanne and Taylor here 'alone'. But again, there are a bunch of "if"s and I'm not even letting myself think that far ahead right now... not until this lymph node issue goes away. Well, that's all I have for now. I'll update when there's more to report. Again, please don't mention even the possibility of coming home to Zoe and CeCe. Thank you! Hope you all have a great weekend. Love, Karen

Wednesday, November 2, 2005 2:30 PM ***UPDATE 4:00*** well, we got almost all the way to the hospital when Monika called back to say they'd see us first thing in the morning (too late to do any rush labs tonight; docs are all still in a meeting; she did talk to 'the attending', and he said 'tomorrow' ... I want to see one of the BMT specialists about this anyhow, not an 'attending'). So, we'll go in early tomorrow morning, before school and hopefully see Dr. B himself or Dr. O'Reilly. My stomach is in knots. ***UPDATE 3:00*** on further examination, Ty has numerous swollen lymph (another in groin on opposite side and some in armpits). No fever and no obvious signs of infection. We have a call into Dr. B's office and I think we'll walk on over now. Day 133 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Discharged MSKCC 7/15/05 Admitted MSKCC 9/22/05 Discharged MSKCC 9/24/04 COUNTS 10/12/05 (NORMAL RANGE) WBC 3.7 (4-11) Hgb 11.8 (13-17) (last transfused 7/15) platelets 158 (160-400) (last transfused 6/30) ANC 2.2 (1.5-8.8) (last G-CSF 9/30) Hi everyone. Thanks for checking in. Looks like Ty has developed a second swollen lymph node in his groin. We'll have it looked at tomorrow. There still appears to be no 'injury' nor any 'infection' to account for the swelling. He also still has swollen lymph in his neck. The pityriasis rash continues to resolve. I've been doing a lot of research the last few days and have been comparing Ty's and another FA'er's progress along the way. This other FA'er who was transplanted in MN also developed a painful, swollen groin lymph node at about Day 125 (Ty's developed on his Day 128). Like Ty's, this other FA'er's lymph node remained swollen although the pain disappeared. This other FA'er's CMV also re-awakened at about Day 31 (Ty's re-awakened at about Day 40). Both the other FA'er's and Ty's EBV tests have been negative, however the other FA'er's became positive AFTER they did a biopsy on the groin lymph node (doctors think that maybe doing the surgery 'stirred things up' a bit and allowed the EBV to rear its ugly head). This other FA'er also has a rash. This other FA'er was diagnosed with PTLD at Day 147. Ty has not been diagnosed but is at Day 133 now. Just interesting parallels. I REALLY hope Ty's swollen lymph nodes go away on their own and don't follow the course of this other FA'ers, leading to PTLD and then to GVHD. The rash Ty has is called Pityriasis and is thought to be from the Human Herpesvirus 7 (HHV7... or HHV6 in some cases). Many non-immunocompromised people have these viruses laying dormant, and only when immunocompromised do the viruses rear their heads and cause problems. PTLD (or post-transplant lymphoproliferative disorders) is a form of cancer and is obviously very serious. It is usually caused by EBV (Epstein Bar Virus), but not always. It is thought to occur in the presence of virus-virus interactions (like between CMV, EBV, HHV6, HHV7, etc). It usually manifests as a swollen lymph node in the groin or elsewhere, not related to trauma or obvious infection. Keeping our fingers crossed it's just a fluke or an infection or something easy. I'll keep you posted. Karen

Monday, October 31, 2005 3:30 PM Day 131 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Discharged MSKCC 7/15/05 Admitted MSKCC 9/22/05 Discharged MSKCC 9/24/04 COUNTS 10/12/05 (NORMAL RANGE) WBC 3.7 (4-11) Hgb 11.8 (13-17) (last transfused 7/15) platelets 158 (160-400) (last transfused 6/30) ANC 2.2 (1.5-8.8) (last G-CSF 9/30) Are you ready for this?! Ty's CD4 is 185 (one hundred eighty-five)!!! Those stinkers didn't even tell me they drew another CD4 (we weren't due until November). Dr. Boulad also said that it's very unlikely with a CD4 of 185 that the swollen lymph nodes would be from EBV or the like... so :) less worry while awaiting those results. Also, the rash is nearly gone from Ty's limbs...and is still resolving from his torso. Dr. Boulad says the more it lightens up, the more it does look like 'pityriasis'. He also said he's seeing more and more of that particular rash post-transplant, which leads him to believe it may be related somehow to a virus (not one of the 'bad viruses'...just a virus). We spent the morning at Clinic where they were having a Halloween party for the kids. I made the executive decision that Ty could participate in the whole shebang... restaurant pizza, cupcakes, the crowd at the magic show, the crowd going trick-or-treating throughout radiation therapy, radiology, the day hospital, IV room and exam room area. The nurses all asked last week if we'd be here for the Halloween party and they know he's not supposed to be in crowds, so I took that to mean it's ok. To be clear, I assumed. Yes, you heard me right... as I had ample opportunity to ask Dr. B and chose not to. The whole thing doesn't really make much sense anyhow... I mean, we're not supposed to ride in cabs, not supposed to be in crowds (including at RMH)... yet when we go to the day hospital every week for IVs, we rarely have an actual room to ourselves which means we're assigned 'a chair' right where everyone walks by and where other kids are sitting who are also assigned a chair. But when we're not getting IVs we're supposed to be in the post transplant waiting room as opposed to the game room or the main waiting area. No sense at all... I DID ask Dr. B if it was ok for us to go visit Taylor in-patient (only because he crossed our paths when we were headed over there). At first he said, "No, he's going to be discharged soon." But upon pressing him and Dr. B going to check for sure we found out Taylor wouldn't be discharged until Tuesday (or Wednesday according to Jeanne). After reminding him of the importance of Halloween to kids, he acquiessed, "just in and out". Taylor is Darth Tater (or Darth Vader as he'd probably rather be called) and his mom and sister are 'prisoners of MSKCC room 930'. Pictures to follow. We later saw Taylor out and about over in the PDH too (someone on the in-patient side decided there was no way any germs could get into his mask). Those rascally prisoners are always looking to escape!! Well, hope you have a ghoulish and safe Halloween. Send pictures to us via email if you get a chance. We really appreciate all the prayers and guestbook entries. If you happen to see my girls, please give them big 'ol huggies from me. I miss them so much, especially at a time like this when families are trick-or-treating and making fun memories *together*. Love, Karen

Friday, October 28, 2005 9:15 PM ***UPDATE: Ty has a swollen, painful lymph gland in his groin (and some residual swollen glands in his neck from staph aureus infection). We went to Clinic to have the groin gland checked this afternoon and they decided to draw another EBV. This hospital checks EBV and CMV everytime we're seen (last done Monday), so I don't think they think that's what it is... but in light of the recent parainfluenza and staph aureus infections plus the rash... they don't know what's going on with Ty. More when we know more.

Thursday, October 27, 2005 11 PM Day 127 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Discharged MSKCC 7/15/05 Admitted MSKCC 9/22/05 Discharged MSKCC 9/24/04 COUNTS 10/12/05 (NORMAL RANGE) WBC 3.7 (4-11) Hgb 11.8 (13-17) (last transfused 7/15) platelets 158 (160-400) (last transfused 6/30) ANC 2.2 (1.5-8.8) (last G-CSF 9/30) Very quick update: Staph aureus: Ty completed the antibiotics. No more blood in sputum. No other URI symptoms. Rash: seems better on arms and face, worse on torso and legs. Still on steroid cream twice daily and benadryl as needed for the itchiness. They still don't know what it is, but Dr. B says it might be pityriasis. I'm not convinced, but if that IS what it is, then Ty may have it for 4-6 weeks or longer. We're just hoping it's not GVHD. Mema (my mom) came for a week-long visit... and Poppy (my dad) has come twice on the train from CT where he's visiting his dad. It's been a good week. Mema's stayed with Ty a couple times (and has offered to do it everyday) so I can get out. I've gone out to eat twice for lunch, seen two movies, done lots of walking and even some shopping. Mema's done lots of homework with Ty and they got out for a short walk to find a school a couple days ago. (Ty had asked me one day why there were no schools in NYC. There are, they just look different from our schools in FL.) I just finished reading my third Tracy Chevalier book. I like her writing. I also just finished another Francine Rivers book. I like her work a lot too. I'm very excited to say that this week we received a note back from our donor :) It was very touching and he and his wife are very open to staying in touch and meeting in person once the one-year hold is lifted. Thanks for stopping in. I'm going to try to put new pictures up this weekend. Hope your weekend is safe and fun. Things around RMH here are pretty exciting with Halloween right around the corner... parties every night, kids dressed in costumes, fun decorations... Karen

Friday, October 21, 2005 8pm UPDATE #2: Heard from Ann at Dr. B's office that the sputum we sent in on Tuesday came back showing staph aureus. Ty's now on antibiotics for that. (He has had post nasal drip and has been sneezing for some time. We had taken in two previous sputums containing blood, which they dipped for blood but never sent for cultures.) Fortunately, the only URI symptom Ty has currently is that he's still sneezing. No more blood. No more post nasal drip. If he was otherwise symptomatic he'd be going in for more tests and who knows what else. He feels very toasty, but no fever. Praying there's no hospital admission.

Friday, October 21, 2005 11:30am UPDATE #1: Dr. B says rashes post-transplant are one of four things: GVHD, allergic reaction to medication or environment, viral, or *don't know*. Guess where Ty's falls.... *don't know*. Dr. B says it's definitely not GVHD ~ not red enough, it's not hive'y enough to be allergy and we've introduced nothing new to his system, it's not the typical viral rash, so... They're treating it with a steroid cream twice daily and we'll reassess on Monday. Interestingly, Ty is the third patient on our floor at RMH to presently have an all-over rash. Doubt it's anything communicable, but it's interesting none-the-less. More next week...

Friday, October 21, 2005 6:30am Day 121 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Discharged MSKCC 7/15/05 Admitted MSKCC 9/22/05 Discharged MSKCC 9/24/04 COUNTS 10/12/05 (NORMAL RANGE) WBC 3.7 (4-11) Hgb 11.8 (13-17) (last transfused 7/15) platelets 158 (160-400) (last transfused 6/30) ANC 2.2 (1.5-8.8) (last G-CSF 9/30) Hi everyone. Thanks for stopping by. Couple of things to report on: For about a week solid Ty has had an itchy rash behind his ears. This has come and gone several times over the last month. I've been treating it with hydrocotisone cream several times a day since last Friday. Dr. B looked at it earlier this week and said, "Hm. Maybe it's from the straps of his mask." A few days ago a few non-itchy bumps arose on Ty's forehead at the hair line. I thought *Hm. My 'baby' is turning into a teenager* so I explained to him how his body is changing and suggested he start washing his face more often. Yesterday he awakened and his forehead was covered and he had some on his cheeks. I thought *Hm. I don't remember acne happening quite that fast when I was a kid.* Dr. B looked at him yesterday and said, "Just keep putting the hydrocortisone cream on it." I said, "Hm." Today Ty awakened and his entire body (except privates) is covered in itchy bumps. I thought *HM! Better buy more hydrocortisone cream!* During Ty's last hospitalization he had a bright red rash on the palms of his hands and soles of his feet. I was very concerned as this is one of the early signs of GVHD of the skin, but it became less and less apparent the week after discharge (and is totally resolved now), so I figured it must have just been from something they were giving him IV. Then, a few nights ago when I looked up 'rash behind ears transplant' online, I found out that that is another early sign of GVHD of the skin. Now that Ty has the itchy rash all over his body, I'm very concerned. We'll see what they say at Clinic today. I *knew* we weren't really down to Clinic just once a week yet! Ty's diarrhea is better right now. Never cultures anything out, but never goes away for good either. No temp (thank goodness!). No other medical issues I can think of. I can't post new lab values, as I forgot to ask for a copy when we saw the doctor Monday. Everything was about the same number-wise, though. Behavior: Three, count them THREE times this week Ty's gotten in big trouble. He's really testing. I just keep telling him he is 'stuck with us', that we're 'not sending him back to Taiwan or anywhere else', and that it's his choice whether he makes good decisions and is off restriction and has a happy life...or whether he makes bad choices and is on restriction and unhappy about it. School: School is a bit better. I'm setting time-goals for Ty every day, and 2 days this week Ty has had free time left for play (and he will today too as he's almost done already with my assignments!)... and that's better than the entire time combined since school started. Ty wants to manage his own time, but he's simply not able to at this point, and I think the trade-off (ME managing, but Ty having free time at the end of the day) is worth it to him. Also Ty's teacher, Ross, is taking more and more responsibility for making Ty accountable to him for some subjects (namely journaling and math), so the effort Ty puts into those subjects is much more than when he's doing it 'for me'. Ty is extremely smart. I hate that this whole medical situation throws a wrench into everything. At home I think he'd be excelling this year in school. But here, with all the medical issues (daily stuff plus the effects of chemo and radiation), the living situation (living away from home/family in a tiny, single room with just his mom for 4 months already), the no-contact situation (can't be in groups of people), etc. it's just plain hard (on everyone). Something cute: Ty has started saying, "I LIKE you Mommy." (We've always said we love each other, but this 'like thing' is new .) Well, I never thought I'd say this, but, "I've got to get out of this hallway. It's too HOT!" (The hallway is the only place I can get wireless, and it's usually FREEZING here... but now the heat is turned on in the RMH.) Thankfully we have windows in our room that open about 4 inches, so it's a nice temperature in there. Hope you're having a great week and hope your weekend is even better. I'm excited that my mom and dad are coming for a visit soon and my mom will be staying for about a week I think. *Gettin' out the scrabble board.* I also hope to get out to the West End store in Brooklyn while she's here with Ty. Steve and I found a West End bed we liked online and ordered it. It's shipped, but neither of us has ever seen it in person. I didn't even realize the store was right here. They used to sell some bedside tables I liked, too. Maybe they'll have something that will work. I've been having lots of fun working on the house plans the architect drew up (making changes). Hope to get the floor plan finalized soon so that the architect can start working on the elevation and so we can start building soon. The builder said that with the shortage of laborers AND supplies, it would take 9 months rather than the usual 4-5 months to build. Please pray for folks who will be affected by this next hurricane. My family is preparing and our neighbors already have their storm shutters up. Please also pray for all the FAmilies struggling with this disease and it's treatments and it's losses. Love, Karen

Thursday, October 13, 2005 11:30 PM Day 113 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Discharged MSKCC 7/15/05 Admitted MSKCC 9/22/05 Discharged MSKCC 9/24/04 COUNTS 10/12/05 (NORMAL RANGE) WBC 3.7 (4-11) Hgb 11.8 (13-17) (last transfused 7/15) platelets 158 (160-400) (last transfused 6/30) ANC 2.2 (1.5-8.8) (last G-CSF 9/30) Thanks so much for stopping by. Happily, we've not much to report medically. Everything is fine. Counts are still about the same. Disappointingly, Ty's CD4 was 32 at last count. It must be 200 before we can leave. Yesterday Dr. B showed me a new chart he's put together showing that most FA patients transplanted by him, even those whose CD4 count was still around 50 at 3 or 4 months, made it to the 200 mark by about 6, 7 or 8 months months post-transplant. Unfortunately I couldn't get Dr. B to print the report so I could study it more carefully, as 'it's not been published yet'. But at least there's an end in sight...even if it's not by Christmas. Ty goes tomorrow for his bone marrow aspiration. If his CMV remains negative we will go to once every OTHER week on the Cytogam IV med he gets weekly now at the hospital and may be able to switch the IV ganciclovir he gets daily at home to an oral med. YAY! The redness on Ty's palms and feet still comes and goes, but is mostly gone now. He's had some blood in his sputum since last Friday, so we're dropping a sample of that off tomorrow. Seems to me to be some post-nasal stuff hanging on from the flu he had awhile back. School is going better for Ty. His teacher, Ross, and I are really working on very specific, written rules for Ty to follow for certain subjects. For example, for math Ty must 1) organize his work and write neatly, 2) circle his answer, 3) show all of his work, 4) check his answers on paper, etc. We're also working on taking Ty's language skills to the next level. For example, in his daily journal for school he must now 1) write a title, 2) make a list of everything he wants to talk about, 3) number his list in a logical order, 4) write a rough draft 5) correct spelling, tense, plural, punctuation, capitalization and missing words and 6) write a final draft. I'm done with hearing 'I forgot' or 'I didn't know'... so now it's in writing. Also, we're really working on 'how' to study and on being responsible for his own work. Tonight I wrote a very specific schedule for Ty for tomorrow. We want Ty to have free time each day, but only once has he been able to accomplish this (and that was when I wrote time limits for each subject). Hopefully Ty can stay on task and get things done in a timely manner (and correctly the first time). We're both tired of working all day long, every day, on schoolwork. It's not healthy and it's depressing. We're also working on getting Ty a tutor. As much as I want it to work with me being his primary teacher, it just seems that he's not performing as well for me as he might for someone other than his mom (with whom he's stuck in a tiny room 24/7... it's just not natural!). And finally, we're working with the RMH 'house doctor' now. I met with him last week after a particularly rough time my sister was witness to, and Ty met with him this week. Ty had already told me that if I took him to a counselor/psych, he wouldn't say a word to the good doctor. So, I didn't tell Ty this was a doctor. Instead we set it up that he'd be a 'chess buddy' and whatever chatting happened to come of it...GREAT. It went well and all of us are looking forward to the next 'game'. My sister, Donna, was here last week. It was SO MUCH FUN. We talked, played Scrabble and Upwords, ate, went to the theater to see "Hairspray", walked in the rain, worked on Halloween accessories, etc. I really owe Taylor's mom, Jeanne, BIG for keeping Ty so I could get out on Saturday. It was the first time in the 4.5 months I've been here that I've gotten out without kids to do something fun. THANK YOU JEANNE!! I miss you so much, Donna. Thank you for leaving your family to come up to visit. Thank you for bringing Ty his 'old man' costume. Thanks for buying accessory supplies for the girls' costumes. Thanks for the 'girl time'. I love you. Monday was Steve's and my wedding anniversary. This was a difficult one, being separated. He and I will make up for it, though, next year. We plan to run away together for a week or so once all this transplant stuff is behind us. I love you, Steve! I'm so proud of you for all you're doing on the homefront. Today was Taylor's 18th birthday. HAPPY BIRTHDAY TAYLOR! We can't wait for your Bingo party tomorrow night. We miss everyone. A very big thank you to my mom and Miss Anita (who are taking great care of my girls). We couldn't do any of this without you! Love, Karen

Sunday, October 2, 2005 7:17 PM CDT Day 102 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Discharged MSKCC 7/15/05 Admitted MSKCC 9/22/05 Discharged MSKCC 9/24/04 Hello everyone. Thanks for stopping by. Well, Friday's Clinic visit (in Urgent Care) went slowly, but well. We arrived before 7am and were discharged at 2pm. Ty got his Cytogam, labs and G-CSF and we saw ARNP Heidi. We found out Ty's CD4 count is only 32 at the 90-day mark (it was 30 at the 60-day mark). Don't really know what this will mean for going home. I asked Heidi, "So, doesn't look like we'll be going home for Christmas, then, does it?" (CD4 has to be 200) Heidi sort of grimmaced and shrugged and said, "Maybe Dr. B will let you go home for a weekend." Ummm, NO!! I mean, I don't know. I think that would be harder, knowing I had to COME BACK for a couple months longer, than just staying up here. We'll see, though. Also found out that Ty's parainfluenza swabs from Wednesday came back negative. That means that 5 days later (that's tomorrow) Ty will be allowed back up on the PDH (Pediatric Day Hospital). Unless we need to, though, we won't go to Clinic until Wednesday. Ty's diarrhea continues off and on (mostly on). They cultured it again (long story short: they lost the specimen again...UGH.) and we're assuming (yes, I said that word!) that no news is good news :) The 90-day bmb/bma was cancelled due to Ty not being able to go to the PDH on Friday. Hopefully we'll be rescheduled for next week. Steve, the girls and the surprise (Ty's best friend, Nathan) arrived Thursday evening. We had a GREAT weekend. Friday afternoon we got a 'private' tour of the Empire State Building (the guy in charge of security took us in otherwise-empty elevators up and down, so that Ty could participate; the observation deck wasn't very busy... and it's outside, so we figured it was ok for Ty). The view was spectacular (perfect weather). It was a good time. Saturday we had Ty's 12th birthday party. That was a blast!. Ty wanted a SpongeBob theme (keep in mind he never really had birthday parties before coming to the US.... except for his 10th birthday, which was celebrated in Taiwan with friends (you made him feel so special!! Thank you Melita!!) So we had SB music, SB decorations, a rousing game of Krabby's Don't Spill a Drop Krab Walk Race, beach pail cake, and of course presents :) And I just found out from that a friend in Canada was able to find the two elusive Traditional Chinese books in China Town (The Hobbit and one of the Lord of the Rings)... Ty is going to be SO excited to have more reading material...thanks Lorne! Sadly, while writing thank you notes today, it became apparent that Ty's written Chinese is floundering (a patient a couple doors down sent him a gift certificate and wrote in Chinese... so I asked Ty to add some Chinese to his thank you... he couldn't. I hate that he's losing this... I guess there's just so much new stuff going in and not enough practice with the old stuff...). But he can still read it and can still speak and understand Taiwanese and Mandarin. Our company left this morning. I am SO SAD to see them go, but know they'll be back for Thanksgiving. I got all the sheets and towels done and the room 'sterilized' (haha) after they left. My sister, Donna, will be arriving later this week. I am SO excited... I'm really looking forward to both adult time and girl/sister time with her :) Here at RMH we have new phones and new cable boxes. They're working on wireless internet service within the next week or so, as well as renovation all the rooms by year's end. Funny (sort of) story... We don't have many of the 'old' usual channels on the new cable box, like ESPN, TLC, Discovery, etc... but we all got an eyeful of porn on one of the lower stations the other evening! Great. That's about all. I'll try to put some pictures up in a bit (after I dump them from my camera)...YES I got it back from the repair shop... the delay came because they shipped it to my home address rather than to the NYC address. Please remember all the FA families in your prayers. Love, Karen

Monday, September 26, 2005 11PM Day 96 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Discharged MSKCC 7/15/05 Admitted MSKCC 9/22/05 Discharged MSKCC 9/24/04 Hi everyone. Thank you for checking in on Ty. He was discharged Saturday afternoon. He's feeling better each day. (He has parainfluenza virus.) He can't go back to Clinic until he tests negative for this virus, so we'll be going to Urgent Care for treatments. Don't know what this will do to his scheduled Pentamadine treatment and bma/bmb this week. Also don't know what we'll be doing about school. (Ty's teacher was out Friday and today anyhow... he's sick too... so hopefully we'll figure something out with him tomorrow.) Ty has diarrhea again (this is becoming chronic). His hands and feet are still intermittently very red. Hoping these are not signs of early skin and gut GVHD. Other than that, not much to report medically. Steve and the girls are coming Thursday night. Unfortunately, the girls have been sick and Steve feels like he's coming down with it. Everyone will just have to wear masks and be even better about hand-washing. I'm not about to cancel this trip! This will be the third time I've seen my girls since leaving FL June 5th. Ty's so excited about his birthday this weekend... and miracle of miracles he's not lost the privilege of having a birthday yet (you read that right... I've actually threatened to CANCEL his birthday... the whole shebang: party, presents, surprise and even turning 12!). He's been a real stinker lately (mostly about school work... I'm actually thinking about moving him back to 5th grade... more on that some other time though; but also about other things). Come on, Ty... only 4 more days to behave before your birthday... you can do this!! :) He actually got sent to bed at 4PM today, no dinner, homework not completed... I was just done with it! Thankfully, most of his behavior is normal for 12-year-olds... I'm sure my expectations need to be adjusted some, but his expectations of himself need to be adjusted wildly. Ah well, at least he's here with us to be having these issues, right? He's still not lost his sense of humor, that's for sure. And he's been talking a lot about our trip to Taiwan next year and going back to Camp Sushine next summer. This is great because it really means he's looking to the future (which is easy to lose sight of in a place like this). Steve's and my anniversary is coming up soon. It's hard to really celebrate when we won't even be in the same state. Steve's been after me for years to go on a trip with him. I think this will be the year for that (but not until after I'm home with Ty meaning 2006 sometime). He wants to go to England (has wanted to take me there for years). I'm really torn about it... it's hard to leave... esp after being away so long and depending on others to take care of my girls for so long... but I'm really looking forward to this time away with him, whenever it happens. Well, I think I'll turn in early tonight. Thanks again for stopping in to check on us. Please pray for Jordan in MN who continues to baffle doctors. Please pray for A. who returned home from MN recently and is battling some serious viruses. Please pray for Brian who's developed some skin GVHD. And of course our good friend, Taylor, who is in for pseudomonas in his line. Also, an extra prayer for my friend, Carrie. I wish I could be there... Love, Karen

Thursday, September 22, 2005 10:30 pm ******FINAL UPDATE FOR TODAY: Looks like Ty has Parainfluenza virus (PIV), a very common respiratory illness which usually runs its own course, but which sometimes requires treatment with Ribavirin, esp if it turns into pneumonia (Ribavirin is usually a treatment for RSV). Ty will remain on antibiotics for now to be sure there is no bacterial pneumonia associated with his viral infection. Ty has had three reactions today to (probably) Vancomycin... hives all over his head and neck, plus the red 'tomato head'. Unfortunately, there aren't too many substitutes for Vancomycin, so they pretty much have to continue with the drug even if there are reactions to it... they just slow it down, give more benadryl and watch him. He's also on Cipro IV. Once the cultures grow out, they'll adjust the antibiotics as needed. His temp reached 103.3 today, and in addition to tylenol, Ty was made to 'wear' ice packs to help cool him down. He went through 4 of them before his fever finally broke (he was one hot potato!). Thanks for checking in. Interesting aside: in my research online tonight I found some studies on CMV status in BMT recipients. Seems there is much evidence to support that if the recipient is positive, then he/she should receive transplant from a positive donor to reduce the risk of CMV waking up. Interesting! Now I'm curious about whether or not our donor was positive. Not that it much matters, as we didn't have a slew of donors to choose from. G'night!

Thursday, September 22, 2005 11 am ******UPDATE: What was that I was just saying about liking it being so boring? Well, we're being admitted. Ty says he just was missing Taylor so much (**smile**). Ty started with URI symptoms Tuesday. Over the last couple days it's worsened and today he has a 103 temp, nausea and diarrhea on top of the head cold symptoms. They think it's viral, but to be safe they're admitting. They drew and swabbed cultures and then started some vancomycin (which gave Ty hives on his scalp and neck). They treated that with benadryl which relieved the itchiness, but he still has hives and his face is pretty swollen. They've also given him tylenol and he has ice packs on him to get the temp down (it's gone up from 101.2 to 103.something since arriving at the hospital). They just hung the second antibiotic (Cipro). We're awaiting a bed on the inpatient side (we're in a bed on the outpatient side right now). Last night Ty's needle got ripped out of his port. It caused a scratch which bled quite a bit, but is otherwise fine. (The tubing somehow got stuck on an outdoor chair and when he stood up, the whole thing yanked out. The port seems to be working fine today after being re-accessed, thank goodness! You'll notice I had to add the security measures back in. I'm sorry for the inconvenience, but it's necessary since he's being admitted and I want to be able to talk about anything without being concerned about staff reading the site.

Tuesday, September 20, 2005 11 PM Day 90 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Discharged MSKCC 7/15/05 COUNTS 9/20/05 (NORMAL RANGE) WBC 4.2 (4-11) Hgb 13.0 (13-17) (last transfused 7/15) platelets 157 (160-400) (last transfused 6/30) ANC 2.7 (1.5-8.8) (last G-CSF 8/8, 8/25, 8/29, 9/16??) Sorry for the delay in posting. Everything here has been fine... pretty boring, which is the way we like it. At Clinic today Ty received his monthly IVIG. We'll go back on Thursday for his weekly IV Cytogam. Next Wednesday Ty will have his twice monthly Pentamidine (tent) and then on Friday he'll have his 90-day bone marrow biopsy/aspirations and his weekly Cytogam. So much for being 'once a week' now (haha). Ty has the sniffles, runny nose, and he's sneezing. Because it's just starting and b/c there is no fever, they're just watching it between now and Thursday when we go back. Fingers crossed it doesn't turn into anything he needs to be admitted for. He feels fine. Last week Ty rode in a Ferrari. What an awesome experience for him! He can't stop talking about his new favorite car :) Because Ty is post transplant and all of the immuno-compromised precautions are still in place, he/we really don't get to participate in much of anything here at the RMH. This was a special treat arranged for Ty by Mike's mom, Judy (THANK YOU JUDY!). Mike loves Ferraris and someone arranged for him to get a ride... well, when the second car pulled up out front, Judy asked if Ty could go along and he hasn't stopped smiling since. I'd like to post some new pictures, however my camera quit working. Thankfully I had filled out the online registration for the camera, as that got us a free 3-month extension on the warranty. We just barely made it, but it's in the shop now. Hope to get it back in a couple weeks. Those of you who know me know I'm feeling NAKED without a camera. Thankfully we have Ty's camera. Unfortunately, the cord to trasfer images from camera to computer is in Melbourne. So, once I get my camera back I'll be able to load some new pictures onto this site. This past weekend Ty and I rode on a water taxi (THANKS JEANNE for the free tickets). It was nice just being out in the 'fresh' air (that's sort of an oxymoron in the City). We rode on the upper, outside deck the whole route and back again. It was fun! I've been having lots of fun spending money on eBay (for Ty's birthday mostly, although I also found some costumes for my girls since I won't be home to make anything for Halloween). The birthday surprise is still on (nope, still can't post about it because we want it to stay a surprise!) This past Friday Ty began classes with his new teacher, Ross, at MSKCC. We have to be there everyday by 8:30 am, but it's worth it not to have the teacher he would have been assigned here at RMH (picture: wet-noodle-les miserable-hates-her-job-stuck-in-a-rut teacher). Ross is young and energetic and happy and seems to really like kids AND his job. Ty likes him and responds well to whatever Ross asks him to do. Unlike the other teacher, Ross is happy to use Sherwood's curriculum and materials. He's really working with me to supplement what we're doing at 'home' at RMH, rather than just assigning work for the sake of it. Anyhow, it's one-on-one and lasts about an hour and a half. At RMH we start school work by 5 or 6am and go until we're done. Up to this point that has meant literally all day. But last night I made a 'goal' sheet for Ty, showing that if he does his best work the first time 'round (mean Mommy makes him do more work if he does poorly the first time), then he has plenty of free time in the afternoon. **beep,beep,beep BREAK THROUGH beep, beep, beep** He finished up at about 2PM and had the rest of the day to play. Internet access here at RMH has been nearly impossible the last few days. I was down in the lobby tonight trying to get online (unsuccessfully) when in walked Nancy Cincotta (Social Worker) and her husband, Andy, (M.D.) and son, AJ from Camp Sunshine. They live here in the City, but this is the first time I've seen them since last year's Camp. They are arranging for a bus to take RMH families to Camp Sunshine the weekend of October 1st. What a blast that will be for whomever can go. I really wish we could go. That's the weekend of Ty's birthday. Even so, he can't be in crowds and can't eat food provided by other people (esp. cafeteria style!), so Camp isn't an options for us this year. Please pray for Taylor. He was admitted for a line infection last night. I stopped in to see him today and he's feeling fine, just stuck there until the antibiotics kick in. Please also remember Jordan in MN. You may recall that he and Ty were transplanted on the same day. Ty was released from the hospital July 15th. Jordan has been in the hospital for all but about 2 or 3 days since he began chemo/radiation the week before his 6/22 transplant. Brian is doing really well 50 days post transplant (MN). Devin left MN for home and is doing well. Erin is home and doing well. A. is home, but I haven't seen any updates since she left MN. Nathan is home from MN and doing well. Great news, hm?! Gosh, I think that about does it for now. I had no idea when I sat down tonight what I'd be writing...it really has been so 'boring' with nothing to really report on. Guess I should write more often so as not to fill a books-worth in one sitting. We miss you and love you all. Thanks for checking in. Love, Karen

Friday, September 9, 2005 10 AM Day 79 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Discharged MSKCC 7/15/05 COUNTS 9/9/05 (NORMAL RANGE) WBC 3.8 (4-11) Hgb 13.2 (13-17) (last transfused 7/15) platelets 211 (160-400) (last transfused 6/30) ANC 1.7 (1.5-8.8) (last G-CSF 8/8, 8/25, 8/29) No G-CSF today! And no more Clinic visits until Wednesday! Yay!! Counts are good and ANC is holding steady at 1.7 the last couple times. Looks like we're now officially down to weekly visits to Clinic :) :) :) So, at Clinic next Wednesday Ty will get his once-a-week Cytogam, his twice-a-month Pentamidine, possibly his once-a-month IVIG, labs drawn, check-up and port re-accessed. At home he continues to get IV Ganciclovir 150 mg once daily, plus folic acid and multi-vitamins by mouth. As for checking the CMV, they will do it every time we go to Clinic (so, just once a week if we don't need to go in more often for G-CSF or other things). That's about all the medical stuff to report on. I made a decision last night, after another particularly rough day of school work. I can't allow myself to be emotionally involved in Ty's grades. It has to HIS responsibility, HIS best effort, and HIS success or failure. I explained to him again this morning that laziness is unacceptable, that he must always do his best, but that if he is unable/unwilling to do the work, I will move him back to 5th grade. If he is unable/unwilling to do the work, I will move him back to 4th grade and so on (while his friends are all advancing). This is not a punishment, but simply a solution to the problem. I personally think he can do this work. I think 6th grade is where he needs to be. But I might be wrong (NO, say it "ain't" so!!) So we shall see over the next week or so. On a nice note, I received an email from Brittany's Hope Foundation (they're a wonderful organization founded to raise money to help with adoption costs of seriously ill kids; they paid all of Ty's Taiwan adoption fees). A few weeks ago they decided to plan an art auction to raise money to aid in joining more sick children with 'forever families'. They asked all of the kids they've helped bring to the US to submit artwork. Ty free-handed a beautiful horseshoe crab and we were just informed that his piece was one of only 6 chosen to be framed and sold at auction. He and I are both so excited and proud! Please continue to hold all the kids at transplant in your thoughts and prayers: Jordan, who like Ty is also 79 days post transplant, has not yet been discharged from the hospital in Minnesota; Taylor has some leukoplakia on his tongue which is of some concern and must be removed before heading home; Brian is doing extremely well; Fatma, in addition to the troublesome spots on her brain, has as-yet-undiagnosed white spots all over her skin, along with some eye problems; Erin and Nathan are both home and doing well; A. is home but no updates since getting there last month; Devin is doing fine. Also, please remember the families in other stages of this horrible disease, FA. Thank you for stopping in. We're continuing to pray for all the families affected by this last big hurricane. Also, hoping and praying that our area of Florida is spared any major hurricanes this season. Love, Karen

Friday, September 9, 2005 7AM ANC on Tuesday was still good, so no G-CSF again. We have to go back to Clinic today to get some G-CSF before the weekend (if we need it), then hopefully won't need to return to Clinic until next Thursday. I'll post counts later today. Thanks for checking in! Day 79 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Discharged MSKCC 7/15/05 COUNTS 8/22/05 (NORMAL) WBC 5.4 (4-11) Hgb 12.6 (13-17) (last transfused 7/15) platelets 218 (160-400) (last transfused 6/30) ANC 3.2 (1.5-8.8) (last G-CSF 8/8, 8/25, 8/29)

Thursday, September 1, 2005 2 PM UPDATE 9/5/05: Counts at Clinic yesterday were good. No G-CSF. We have to go back to Clinic tomorrow (Tuesday). Steve and the girls left for Florida this morning. I'm so glad they came for the weekend. We didn't do too much other than Central Park, but it was nice. I really just miss hugging them and loving on them so much. They'll be back for Ty's birthday next month.

Thursday, September 1, 2005 2 PM Day 71 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Discharged MSKCC 7/15/05 COUNTS 8/22/05 (NORMAL) WBC 5.4 (4-11) Hgb 12.6 (13-17) (last transfused 7/15) platelets 218 (160-400) (last transfused 6/30) ANC 3.2 (1.5-8.8) (last G-CSF 8/8, 8/25, 8/29) News from last Friday: CMV PCR is NEGATIVE again! :) We will see what his numbers are today (next week) and if still negative we may be able to decrease our Clinic visits and IV Cytogam to once a week! CD4 count is still really, really low (not unexpected, but disappointing none-the-less). Because Monday is a holiday, and because Ty's been needing G-CSF for low ANC every few days the last couple times but doesn't need it today, they want him to come in on Sunday (through Urgent Care) to get counts done. If he needs G-CSF then they'll give it and we don't have to come in until Wed (Tuesday will be crazy after being closed Monday). If he doesn't need G-CSF we will have to come Tuesday (they're thinking that surely by then we'd need it). So I'm hoping we need it/get it Sunday and only have to come once next week for IV Cytogam. I love having my computer here at the hospital (great DSL connection). I spent the day looking online for things for Ty's birthday party (surprisingly he chose SpongeBob, probably because I HATE SpongeBob **haha**!). Found some things on eBay and on Oriental Trading I might try to get. Also going to contact the bookstore in Canada where my cousin found some Chinese books for Ty... poor guy is out of reading material (after reading everything 2 or 3 or more times). We have a surprise planned for Ty, but I can't post about it on here since too many potential secret-blowers read the site **you know who you are**! We're done with labs, IV, exam... just awaiting Respiratory Therapy to come give Ty his twice monthly Pentamidine treatment. Then we're back to RMH to await the arrival of Steve and MY GIRLS! Thanks for stopping by to check on Ty. We really appreciate the continued prayers, emails and guestbook entries. Please remember the other FA families in your prayers. There are so many needs. Happy Labor Day weekend everyone! Karen

Monday, August 29, 2005 11:30 PM **HELP: Someone sent Ty a box of "Street Magic". It first went to the hospital. Rather than saving it for us here in NY, it got forwarded on home to FL. Steve received it at home maybe 2 weeks ago. Unfortunately, there's no card, packing list, invoice... nothing to let us know who this is from. Please let us know if you sent this. **ALSO, other than Frances (the books you sent were also forwarded home to FL from the hospital this week) and Donna's WW friend (who sent some things we were never able to track down at the hospital), if you've sent a package and not received a thank you note from us, please let me know... I have a feeling that since these three packages got so waylaid, there may be more floating around out there that we know nothing about. Thanks! Ya'll have been so incredibly sweet to us. We honestly don't need or want for anything more than your prayers and friendship. Day 68 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Discharged MSKCC 7/15/05 COUNTS 8/22/05 (NORMAL) WBC 3.1 (4-11) Hgb 13.0 (13-17) (last transfused 7/15) platelets 219 (160-400) (last transfused 6/30!) ANC 1.3 (1.5-8.8) (last G-CSF 8/8, 8/25, 8/29) More good news today: Friday's CMV antigenemia was again "0". We're still awaiting Friday's CMV PCR (the more sensitive test), EBV and CD4 counts. Today we got the go-ahead to reduce the IV Ganciclovir we give at 'home' for the CMV to 150mg once a day (down from twice a day). They call this a maintenance dose. When I asked if that was 7 days a week or 5 (we were on 75mg 5 days a week previously) I was told '7' (as the lesser amount was a 'preventative dose'). We were also told to d/c the potassium tomorrow and eat an extra banana everyday. That leaves Ty on only folic acid and mulitivitamins by mouth (exactly what he was on just prior to transplant)! Hip hip hooray!! We still must go twice weekly to the PDH for IV Cytogam (for CMV) and twice monthly for the pentamidine. Ty's weight is exactly the same as it was Friday. I'm very surprised by this. He's eating so much less than usual, I thought for sure that his weight would be down again. He IS drinking the protein/fat/calorie drinks 3 times a day still. I think some of the appetite issues have to do with the fact that his (our) activity is so decreased here (of course, then you'd think MY appetite would be down too...haha). Ah well, as long as he's not still losing. We were very disappointed today to discover that the August 29th Mars-being-closest-to-Earth thing posted all over the internet recently was wrong. However, it's been so cloudy/overcast here that we're glad we'll have a chance to see a brighter than usual Mars in October instead. The reports on the internet were also wrong about it being the closest... as that happened in 2003 and won't happen again until long after we're all gone. Taylor's mom, Jeanne, lent me another good book. It's called "THR3E" by Ted Dekker. I'm only 1/3 of the way through it but I like it. It's a mystery/thriller, which isn't usually my thing, so I'm a bit surprised at how much I like it. That's 5 for 5 from Jeanne! Keep 'em coming :) Yesterday we had a nice visit from our friends, Lori, Jim, Ava and Ralph. Lori, Jim and Ava live in FL and are up visiting Lori's dad, Ralph, who lives in NJ. Lori also happens to be my hairdresser and BOY was I glad to see her wielding the tools of her trade! Thanks Lori! Ty had fun playing chess with Ralph. I can't believe how tall Ava's gotten. Last night Jeanne and I had fun chatting and cutting up fruit for a big RMH dinner. RMH also gave away lots of gifts (adult things). It was fun. Jeanne and I both picked out purple wool wraps. We each got a Melissa Ethridge CD. I also got some herbal tea and Jeanne got a pretty woven hat. The boys were in my room watching a movie, eating veggie corn dogs (they still can't be in crowds). Over the weekend Toys R Us came in with tons of new toys for the kids. Ty didn't want anything (probably didn't want to write another thank you!) but I thought that was so sweet of Toys R Us. I tell you, they're a BIG contributor here. And the NYC Toys R Us is apparently like a theme park with rides and all inside! I will never feel bad about spending money at this chain again now that I've seen what they do charitably for RMH kids. Let's see...oh, I have pink eye. Unfortunately, in adults it's usually viral (and still very contagious). However, I was able to get some antibiotic drops this afternoon in case it is bacterial. You may ask how on EARTH I got this infection. I have no bloody idea. I can't possibly wash my hands any more than I already do. I am nearly germ-ophobic since first contemplating transplant. I've not been in direct contact with any kids (except Ava yesterday afternoon). I awakened this morning with one of my eyes stuck together and the other with lots of sleepies... and both itchy. Without thinking twice I wiped my eyes to get the gunk out. Later I put make-up on, again, thinking nothing of the early morning eye stuff (now the make-up is all contaminated and has to be thrown out). Later I had three people tell me at Clinic that my eyes were really red. I finally looked at my eyes in the mirror and then found Dr. B who wrote me a script. I should know within about 24 hours if the drops are helping (and therefore whether it's bacterial or viral). Really hope Ty doesn't get this. Gosh, I'll stop here. This has gotten too long. Thanks for checking in. Love, Karen

Thursday, August 25, 2005 10 PM **UPDATE: Day 64 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Discharged MSKCC 7/15/05 COUNTS 8/22/05 (NORMAL) WBC 3.1 (4-11) (last G-CSF 8/8) Hgb 12.5 (13-17) (last transfused 7/15) platelets 207 (160-400) (last transfused 6/30!) ANC 1.3 (1.5-8.8) (last G-CSF 8/8) Weight 30.8 (down .5 from Monday) Don't know what's up with the decreased appetite. All in all he's down now only about 6 pounds from his pre-transplant weight, though. Monday's CMV was "0" again; checking PCR today. Meds: Discontinue prilosec; decrease KCl to once daily. That leaves Ty on just three oral meds: KCl, Vitamin, Folic Acid! (the latter two he was on prior to transplant) Ty's also still on Ganciclovir IV 150mg twice daily 7 days a week and Cytogam IVIG 5 grams twice weekly (both for CMV). And twice a month he still gets Pentamidine (inhaler in the tent to prevent opportunistic infections of the lungs). Due to the low ANC today, Ty got a shot of "G" (G-CSF). Not that his ANC was horribly low, but they know if they don't boost it up, come the weekend Ty will be running a fever and end up getting re-admitted...and nobody wants that. Ty still has a couple of skin areas that are being watched (his back has lots of tiny bumps still... not sure I'd actually call it a 'rash'...and it's not itchy or anything; also, that round spot on his abdomen doesn't look too different after being on the topical steroid cream for a week now. Maybe Monday they'll want to switch that to a topical anti-fungal?) That's about all. Thanks for checking back in! We miss ya'll oodles.

Wednesday, August 24, 2005 9:47 PM Day 63 Post Transplant: What a fun evening we had at the NBC Experience Store. Jenney is a marketing and advertising gal for NBC and is the liason for this program (and our tour guide). The program is called Forest's Fun Night and is named in honor of Forest Reents, who sadly died about a year ago. The story is that a year and a half ago an NBC executive left his cellphone in a cab. The driver tracked him down to return the phone and the very appreciative NBC exec asked if there was anything he could do for the driver. The driver immediately thought of the little boy she had driven recently and asked if there was any way to get Forest into NBC for a tour. And that is how it all started. Now, similar 'experiences' are in the works here in NYC, such as American Girl and Build-A-Bear... things that may be a little more age-appropriate and fun for the younger kids. Here's what we did tonight. A car service picked us up from RMH. It was Ty and me, plus Taylor, Jeanne and Whitney Atkinson. The car they sent only seated 4, so we had to wait for a second car to arrive and then we were off. At NBC we were given free run of the candy store (beware Daddy, Dr. B, Zoe and CeCe... there were some Fear Factor'ish goodies brought home with you all in mind!) We also got to 'do the weather' with Al Roker pre-recorded and brought home a video tape of that. Unfortunately, the equipment that makes it look like you're in a picture with (ie Al Roker, Conan O'Brien, Jay Leno, etc) was broken. We were able to take lots of pictures throughout the facility, though, and we were given pictures of us in front of the candy-filled NBC Peacock. We were offered ice cream and then wisked down to the 'show store' where the kids got to pick out goodies. Ty picked out a 2006 Olympic Torino (Italy) ski cap and a Fear Factor "Got Worms" t-shirt (free!) I tell you, after being pretty much cooped up in RMH and MSKCC for the last 2.5 months, this was like going to Disney World for Ty. You should have seen the smiles on that boy's face. I'm so glad the Atkinsons went with us. That made it much more fun for me. I was afraid it wouldn't be too much fun for Ty and me alone, as we're not big TV watchers (and in fact Ty has never even seen an NBC show, other than news). It turned out to be a good time, and would have been even if there had only been the candy store! I also wanted to mention that MSKCC Child Life is AWESOME. Besides Forest's Fun Night at NBC, they also keep up with all the kids, and as restrictions are lightened, they arrange for lots of fun outings... baseball games, museums, etc. Of course, we can't participate in these things yet, but it's something to really look forward to. While I'm on a roll here, I also want to mention at least SOME of what RMH does for its families. A few nights ago they had a 3-piece orchestra come in (violin, cello and piano). It was AWESOME! (Ty and Taylor were in our room watching a movie, so I snuck down there for the last half of it.) They frequently have BBQs and water play parties, movies (sometimes even first run movies!) and popcorn, trips for the kids to Central Park, and trips for the older kids to the movie theater (of course, we can't participate in these things yet, but more to look forward to). There have been Tai'chi, knitting, music and other instructors on a regular basis. RMH oftentimes gets food and gifts for the residents (donated, purchased, whatever)...for instance, Toys R Us donated enough stuffed toy dogs and bears so that every child in the house received at least one. There are often free Yankees or Sox tickets available, along with theater tickets. It is truly amazing what RMH and its staff and volunteers do for us each and every day. On top of all that they do for the residents, RMH is in the midst of a 1.5 million dollar renovation, after which it will be put on the market. Seems they purchased another property about 5 blocks on the other side of MSKCC (currently a parking garage, as I understand it). Construction will be completed on that in probably 5 years or so people are guessing, at which time families will have a brand new facility to stay in. (For anyone who's stayed at this RMH, you can really appreciate the need for renovations to this facility. Already completed is the dining room (new carpeting, tables, chairs, benches). Also, the third floor terrace has new furniture and a butterfly garden, making it a wonderful retreat from the chaos within the house :) They're swithing to dual stackable washers/dryers in each laundry room and are considering making them coin-operated. Unfortunately, the new stackable on our floor is not large capacity nor is it commercial grade, but we've been without for so many weeks we're not complaining :) Well, that's about enough from me. We go to Clinic tomorrow and I'll update sometime soon. Love, Karen

Wednesday, August 24, 2005 11:30 AM UPDATE: We saw Dr. B Monday and he said that we'd leave things as they are for this week (IVIG 3 x week), and if CMV numbers remain "0" then we can consider going back to twice weekly next week. So we showed up bright and early this morning for IVIG Cytogam, only to find out that they already changed us to twice weekly. So we didn't have to stay today. We will have to go in tomorrow, though. I know I heard Dr. B correctly, because I said, "Ok, we'll see you Wednesday". To which he replied that he wouldn't be there Wednesday, so we'd see Dr. Prockop. Ah well. They'll get it worked out. Tonight we (along with the Atkinsons) will do Forest's Fun Night at the NBC Experience Store. More on that later (as I don't honestly know what to expect). A car service is picking us up at 6:45. Have a great afternoon!

Monday, August 22, 2005 1 PM Day 61 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Discharged MSKCC 7/15/05 COUNTS 8/22/05 (NORMAL) WBC 3.8 (4-11) (last G-CSF 8/8) Hgb 12.4 (13-17) (last transfused 7/15) platelets 221 (160-400) (last transfused 6/30!) ANC 2.0 (1.5-8.8) (last G-CSF 8/8) Weight 31.3 (down .2 from last Wednesday) CMV Antigenemia from Friday "0". No recent PCR (more sensitive test). We're not in a bed today (Monday's are so busy in the PDH...Pediatric Day Hospital). Instead, we're in the 'recliner' room. We arrived around 11, had a fingerstick, saw the Nurse Practitioner, just moments ago got hooked up to the Cytogam 5g IV (it runs in over a few hours), and now we're waiting to see Dr. Boulad. I'll post more once we see Dr. B. Hope you're all having a great Monday! Karen

Sunday, August 21, 2005 5:30PM Day 60 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Discharged MSKCC 7/15/05 COUNTS 8/19/05 (NORMAL) WBC 4.1 (4-11) (last G-CSF 8/8) Hgb 11.5 (13-17) (last transfused 7/15) platelets 176 (160-400) (last transfused 6/30!) ANC 2.5 (1.5-8.8) (last G-CSF 8/8) Hi everyone. Not too much to report these days (that's good!). Monday's CMV Antigenemia was back to "0". No word yet on Wednesday's or Friday's. Don't know when they'll do another CMV PCR (more sensitive CMV test). So, they'll continue to check Ty's CMV status M, W, F for now and leave Ty on both the ganciclovir IV twice daily at home and the cytogam (IVIG) loading (higher) dose of 5gm 3x week. Ty's EBV (Epstein Barr Virus), which they check twice weekly, continues to be "0". Wednesday was the last of the twice weekly loading doses of pentamidine (nebulizer in a tent to help prevent opportunistic infections of the lungs). Now he'll get that just twice a month, with next dose on or around the 31st. No weight check (good thing, as Ty's appetite isn't so hot right now). Nothing else to report from Clinic. Next Clinic visit is tomorrow. Ty and I have spent the last week (including the weekend)doing school work (review). I'm not sure if it's because Ty's overloaded on learning new things since coming to America...or if it's because of the chemo/radiation...but there is SO much that he didn't retain. Hopefully he'll pick it back up quickly. We're awaiting the arrival of textbooks, workbooks and lesson plans from his new teacher at Sherwood. Ty's REALLY looking forward to journaling everyday (NOT!) :) I'm really looking forward to him not asking me what we can do every minute (haha). Hopefully we'll get the go-ahead this week to put a webcam in Ty's classroom. He should be able to join his classmates in March or so, and it would be nice for Ty if he were academically in the same place as the other students come then. Not much else going on here. We sure miss ya'll, but we're not complaining (too loudly). We're happy for Ty's progress (esp in light of the fact that there are so many other families here who've been struggling for YEARS... some five, six, seven right here at RMH... most from other countries, all dealing with failed transplants, recurring cancers, GVHD, etc. None of them ever thinking they'd be here longer than 3 or 6 months. We are so lucky. And we're very lucky that RMH even exists in the first place. I can't imagine the added stress of having to pay thousands of dollars a month for lodging just to be within the requisite 10 miles of MSKCC. Please remember all the FA families in your prayers. If you happen to see my girls, my husband, my sisters, my parents or my grandparents... please give them some big ol' hugs and kisses from me. I love them oodles! Karen

Wednesday, August 17, 2005 1PM Day 56 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Discharged MSKCC 7/15/05 COUNTS 8/15/05 (NORMAL) WBC 3.1 (4-11) (last G-CSF 8/8) Hgb 11.5 (13-17) (last transfused 7/15) platelets 187 (160-400) (last transfused 6/30!) ANC 1.7 (1.5-8.8) (last G-CSF 8/8) COUNTS 8/17/05 (NORMAL) WBC 3.2 (4-11) (last G-CSF 8/8) Hgb 11.4 (13-17) (last transfused 7/15) platelets 179 (160-400) (last transfused 6/30!) ANC 1.7 (1.5-8.8) (last G-CSF 8/8) We're at Clinic now, so this post will include both Monday's visit and today's. Ty went to clinic Monday afternoon and was the only kid they saw that day that GAINED weight over the weekend (they were beginning to wonder if the change in weather had something to do with all the losses in other kids :) He was 31.something... (31.8 I think). Today his weight is back down to 30.8 (of course, he's not had lunch yet, which makes a difference). Dr. Boulad returned from his 3 week vacation looking well rested and happy. We're glad he's back (although all the doctors... Small, Kernan and Prockop have been wonderful). Dr. B was only unofficially there (getting brought up to speed on all the patients) and stopped in to see us twice that day. He was the bearer of somewhat disappointing news that Ty's CMV antigenemia from Friday is back up to "2". Dr. Kernan (who was getting ready to go on her 3 week vacation and looking forward to being done with all the extra covering she'd been doing) said that depending on Monday's numbers, we may be starting a third med to fight the CMV (he's already on ganciclovir 150mg IV twice daily at home, cytogam 5g IV 3 times a week at the hospital; the third drug to try would be foscaret; the fourth and most toxic drug to try would be cidofovir). Depending on the patient, the symptoms and the numbers, any combination of drugs or only one may be used. We are still awaiting Monday's CMV antigenemia results to determine the best course of action for this week. Monday, Ty only got 2.5g of cytogam rather than the usual 5g, but this was just an oversight by someone who hadn't seen his most recent (increased) numbers; the usual induction for higher dose cytogam is 2 weeks, then most people go down to a lesser dose. Today Ty will get the 5gm of course. Ty's had a skin irritation on his abdomen for quite some time. Dr. Prockop thought it was probably just Ty's sensitivity to adhesives and it looked about the size/shape of an EKG patch. She's had us putting lotion on it. Because it's not decreasing and actually looks a little worse, they're going to treat it as an eczema with some cortisone cream. If that doesn't work, they'll treat it as a fungal infection with an antifungal cream. (Diagnosis by process of elimination :) Ty got the pentamidine Monday and he'll get it again today. I put a picture of him in the pentamidine tent on the photo page. That's about all. I'll update again with today's counts and Monday's CMV numbers once they're in. Oh, and Ty turned in another 24 urine for creatinine clearance today (they have to be especially careful with kidney/liver function on these toxic meds). We're thinking about all the families at Camp Sunshine... hope you're having a BLAST! Please remember all the FA families in various stages of this disease. Karen

Friday, August 12, 2005 7:30 PM Day 51 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Discharged MSKCC 7/15/05 COUNTS 8/10/05 (NORMAL) WBC 3.2 (4-11) (last G-CSF 8/8) Hgb 11.5 (13-17) (last transfused 7/15) platelets 157 (160-400) (last transfused 6/30!) ANC 1.8 (1.5-8.8) (last G-CSF 8/8) OK, no more pity party. Today was a better (albeit LONG) day. We arrived at clinic around 8:45 and left around 3:30. As you can see, Ty's WBCs and ANC went down drastically from Wednesday's-after-G-CSF-counts (but this is expected from the CMV and the CMV treatments). He'll probably need some more G on Monday. We received the final results today on the 7/27 bma and everything looks good (100 percent donor cells and nothing unexpected). Ty's weight is 30.8 kg today (about the same as last time). Ty's CMV PCR test from the 8th came back at 3800 (the same exact number is was on the 3rd) so we'll continue same CMV meds. Ty had his cytogam this morning, fingerstick, labs, office visit and pentamidine this afternoon. He was a trooper through that yucky-tasting pentamidine again. All day today we worked on Ty's science project for school ("How do gender, cancer, chemo, radiation and transplant affect the pH of saliva?") It is amazing what all Ty got done! We even stopped in a drugstore on the way to Clinic this morning searching for the pH tape/strips, but no luck. Maybe we'll find some this weekend. For those 6th graders who read the story about the Frindle in Mrs. Mahl's class last year, you'll appreciate this new mantra of mine, "LOOK IT UP IN THE DICTIONARY!" :) I forgot to mention the other day that we actually used the laundry service across the street from RMH and it was great! The washing machine on our floor has been out of order for about 7 weeks now. We are allowed to use the machines on other floors, but it's a big hassle (an all day affair since we have to wait for a machine to free up, then sit up there while our loads are going) plus it upsets the people on those floors who need to do their own laundry. So, for $25 we had an entire large duffle bag of clothes done, plus all the linens from 3 beds, plus towels. I'm not sure we'll be able to do that again, but it was definitely worth it this time :) Between yesterday and today I've chatted with lots of friends (thank you Carol, Carrie, Tonya, Anita, Kim and of course my sweet sister, Donna! And Mom, I'm getting ready to call you back in a bit! Sorry...) You all really brightened things around here. I've really enjoyed the emails and guestbook entries as well. Love to you all. Karen

Wednesday, August 10, 2005 10:30 PM Day 49 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Discharged MSKCC 7/15/05 COUNTS 8/10/05 (NORMAL) WBC 8.5 (4-11) (last G-CSF 8/8) Hgb 10.8 (13-17) (last transfused 7/15) platelets 150 (160-400) (last transfused 6/30!) ANC 6.8 (1.5-8.8) (last G-CSF 8/8) Hi everyone! Well, if we had chosen MN or OH to have Ty's transplant, tomorrow would have marked our half-way point away from home. As it is, tomorrow will be about 130 days from home for us. I'm still glad we chose NYC. Got some good news today at Clinic. Ty's CMV antigenemia is "0" again. Now we await the CMV PCR which detects smaller quantities than the antigenemia test is able to. We are praying for a "0" there, too. Catherine (ARNP) said that we should know Friday whether or not we can go down on the cytogam dose. Ty received his first dose of pentamidine today (the drug that helps prevent PCP). I took a picture of Ty in the tent, but it's not on the computer yet. He did GREAT. They say this stuff tastes AWFUL (it's a nebulizer/inhaler) and that most people have a really rough time getting through the 20 minute treatment without taking breaks, drinking juice, etc. Ty just DID it. No breaks. No complaining. I don't know how he did it, but I'm so proud of him. Ty's weight today was up again. I think it was 31.2 kg. Awesome! Ty's attitude is totally back to normal (good normal) today. I wish I could say the same for mine! I'm still upset with him, and on top of all that, I'm a bit down about being here. On the verge of tears the last two days actually. I'm SO thankful for Jeanne and some of the other moms here, but I really miss my old life. I'm not complaining. Just stating facts. It's not always hard being here. I mean, I've been able to read about 20 books in these last 2 months here. The only places I have to be involve Clinic appointments. But (of course!) I'd trade it all in a heartbeat just for the *yawn* life I'm used to in Florida (with 3 healthy kids). Ty says that he's made the decision that he's not going to lie (and a couple other things) anymore. I had explained to him that lack of conscience isn't something I'm equipped to deal with, and that maybe we'll need to get him some help (which he was totally opposed to...apparently he 'got some help' for other things in Taiwan and it didn't go too well). He told me that he knows lying is wrong, it gets him into trouble. I tried to really explain that it's not wrong BECAUSE he gets in trouble. It's wrong period. And SO he gets in trouble. Since I found out the 'help' issue wasn't something he'd be happy about (and I did explain that it wasn't a punishment, that everyone needs help sometimes), I also told him that next time he threatens (or DOES) running away, hurting himself or others, etc. that I would also feel the need to get him help. So, that's where things stand now, and like I said, he's totally back to normal today. I don't honestly believe at this point that it's a lack of conscience, BTW. I just think that he's done it so long to 'survive' (in Taiwan) that it's more or less a habit for him. It's definitely something that he has to control (I can't control it for him). (Also, they weren't big lies, it's just the principle of it.) And the other big part of this is that he's just plain stubborn, which gets him into more trouble than if he had just stopped with the lie. So, that's my update. For those of you who don't already know, this journal is as much for my own records as it is to keep you abreast of Ty's status... that's one reason there's so much non-medical stuff included. Also, some of this is included for those FA families who are heading to transplant... just so you know that there are ups and downs at least for some of us. I love reading the really positive updates that so many families consistently write, and I wish all of mine were positive, but it's just not the case all the time. Please remember all the FA families struggling in various stages of treatment and transplant... and please remember all the empty, aching arms. Love, Karen

Tuesday, August 9, 2005 5:30 PM Day 48 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Discharged MSKCC 7/15/05 COUNTS 8/5/05 (NORMAL) WBC 4.4 (4-11) (last G-CSF 7/8!) Hgb 10.6 (13-17) (last transfused 7/15) platelets 146 (160-400) (last transfused 6/30!) ANC 3.3 (1.5-8.8) COUNTS 8/8/05 (NORMAL) WBC 2.3 (4-11) (last G-CSF 7/8!) Hgb 10.7 (13-17) (last transfused 7/15) platelets 148 (160-400) (last transfused 6/30!) ANC 1.4 (1.5-8.8) Thanks for checking in on Ty. Ty is feeling great in spite of the CMV. As you can see from the counts, just as predicted, Ty's ANC is taking a nose dive (this is due to both the CMV and the treatment for the CMV). Dr. Kernan said she could wait for it to get a little lower before giving a dose of G-CSF, but that would only cause a temperature, then admission, and all that goes with that, so she chose to go ahead and give him the G yesterday. Ty also got his second dose of cytogan yesterday (again, no reactions given the pre-meds). Some good news is that the 3 extra spiro-tein shakes Ty's drinking each day (along with his three BIG meals a day) are adding some weight finally. Ty went from 29.9 kg Friday, to 30.8 kg yesterday! WooHoo. Also, his kidney function and liver function studies are better. We have no CMV numbers to report. Apparently the blood they took Friday couldn't be run due to difficulties with the machinery. They drew more yesterday, and it takes a couple days to get results back. We're praying for any number less than 5 on Fridays. As for yesterdays, we'll be seeing different kinds of numbers ("in the thousands") because they ordered the CMV PCR test, rather than the CMV antigenemia test they've been doing. The PCR is much more sensitive and specific, and is a good test to run even when the the antigenemia number reaches "0", as it can detect smaller quantities of the virus apparently. Today Ty saw the ophthalmologist, Dr. Heinemann. He was VERY quick, literally in and out. He did a quick chart-reading vision test and then looked in Ty's eye with the magnifier thingie and a light). He told us that retinitis occurs very infrequently in CMV, that Ty will notice visual disturbances (ie blurriness or spots) should it occur, and that he will leave it up to peds as to how often to have Ty reevaluated (he didn't seem to think monthly would be necessary). We return to clinic tomorrow afternoon and Friday for more cytogan and our first two doses of pentamidine (the antiprotozoan for PCP, a common opportunistic infection that takes advantage of immunocompromised folks). Ty earned himself another 5 days of restriction (sorry Taylor, Nathan and Ashlyn). We've been having some real issues the last few days and last night it even went into "Why couldn't my (bio) mom in Taiwan keep me?!" and other related issues. (Hang on all you FAC'ers, your turn is coming if it's not already here!!) Well, that's about all there is to report. Thanks again for checking in. Please continue to pray for all the FA families undergoing treatment or transplant, and for all the empty arms and aching hearts. Love, Karen

Saturday, August 6, 2005 4 PM Day 45 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Discharged MSKCC 7/15/05 Hi everyone. GREAT NEWS ~ Ty's preliminary bma results show 100 percent donor cells! That's all we know so far...awaiting further results next week (ie cellularity, etc) We went to Clinic yesterday for Ty's first IV infusion of cytogan. They do the loading doses very slowly, over several hours, and with premedications (IV benadryl, tylenol). Ty managed fine with no reactions. While at the hospital my cousin Stuart arrived from MA (he works at the National Archives, is a GREAT guy, and AVAILABLE *hint hint*) I really enjoyed his visit yesterday. He called just now and is on his way back over to RMH. Ty went to Central Park with Taylor and his mom about an hour ago. It's quite a hike from here (esp considering Ty gets really winded and tired just walking the 5 short blocks to Clinic). I hope he does ok. I wanted to mention that Ty's friend, Ashlyn, just cut 12 inches off her long beautiful hair to donate to Locks of Love (for wigs for kids undergoing cancer treatments). I am so proud to know this sweet, generous young lady! Our schedule looks like this next week (so far): M Clinic (labs, IV cytogan, exam) T ophthalmologist W Clinic (labs, IV cytogan, begin pentamidine) TH F Clinic (labs, IV cytogan, pentamidine) Pentamidine is a nebulizer/inhaler medication that they do under a tent (because it is so toxic!) and it is apparently to prevent some of the opportunistic infections like PCP which are so threatening to immunocompromised kids. I didn't bring Ty's counts down to the lobby with me, but they're lower than they had been. Apparently both the CMV and the treatment for CMV cause further immunosuppression. They said they'll just treat each low number as they need to (ie procrit for RBCs, G-CSF for WBCs, platelets for platelets and PRBCs for Hgb). Oh, and the creatnine clearance 12 hour urine Ty did was perfectly normal! Yay. They'll of course keep track of both kidney and liver function as we progress through these toxic treatments. That's about all here. Please continue to pray for all the kids undergoing treatments and transplants, and for all the families with empty arms and aching hearts. (Emily could use your prayers esp, as she was just found to have EBV; Jordan is still an inpatient and he was transplated the same day as Ty; Brian is dealing with more mouth sores...he's only about 1 week post transplant; Devin's family is still grieving the loss of Devin's older brother) Love, Karen

Thursday, August 4, 2005 6 PM Day 43 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Discharged MSKCC 7/15/05 COUNTS: NOW (NORMAL) WBC 2.7 (4-11) (last G-CSF 7/8!) Hgb 11.4 (13-17) (last transfused 7/15) platelets 141 (160-400) (last transfused 6/30!) ANC 1.7 (1.5-8.8) Thanks for checking in on Ty. So we went to Clinic yesterday, had labs and got 150mg IV ganciclovir (Ty's dose was quadrupled from 75 mg once a day M-F to 150 mg twice a day, 7 days a week to try to keep the CMV at bay... for those FA folks wondering how this would translate for your child, it's 5 mg/kg twice a day). I gave Ty another 150 mg IV last night and again this morning then went for CMV labs this morning and his number is even higher. SO, the plan is to add every other day IV cytogan at Clinic beginning tomorrow at 10am. It takes a few hours to infuse, so we'll be spending a lot of time at Clinic for awhile. (Also, since we're going to 7 days a week on the ganciclovir, we will d/c the weekend acyclovir.) Also, they want Ty to start seeing the MSKCC ophthalmologist at least once a month, as apparently CMV can cause eye problems and they want to watch closely in order to catch it early, should it happen. His first appointment will be Tuesday at 3:45pm. We're being worked in at the bottom of the already full schedule, so it won't be a short wait I'm sure. I'm off to do more CMV research now so I understand better what we're dealing with. Please continue to pray for Ty. Also, please remember all the other FA families in treatment (Nicholas, Maria, and others), in transplant ("A.", Nathan, Erin, Apryl, Jordan, Devin, Taylor and Brian), and in varying stages of dealing with this difficult disease (there are only about 1,000 FA patients worldwide I read yesterday). Please also pray for my girls, that they have an easy transition back to being home without their Mommy and that they transition easily into their new classes at school next week. Much love and gratitude for all you've done for us. Your words and prayers are priceless. Love, Karen PS Here's more info on CMV http://www.cdc.gov/ncidod/diseases/cmv.htm

Tuesday, August 2, 2005 9 PM Day 41 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Discharged MSKCC 7/15/05 COUNTS: NOW (NORMAL) WBC 4.0 (4-11) (last G-CSF 7/8!) Hgb 11.3 (13-17) (last transfused 7/15) platelets 124 (160-400) (last transfused 6/30!) ANC 3.1 (1.5-8.8) Whew! Today was a hard day as my girls and Steve left for home. I can't tell you how good their visit did me. We did absolutely nothing extraordinary while they were here, just spent time as a family. When I put them in a cab this morning Zoe, CeCe and Mommy were all crying, even though we made it lickety splickety, short and sweet. They arrived home around dinner time and called to say hi and goodnight. They'll hopefully come back over Labor Day (two months was SERIOUSLY too long to go without being able to love on them!). Ty went to Clinic yesterday. Counts are good and are posted above. His thrush is clearing nicely and he has gone from three to two of the troches a day. Still no news on his bma/bmb done last Wed. Hopefully we'll get results this week. I did hear from Clinic today with some not-so-great news. Seems Ty's CMV is rearing its ugly head (he was positive for this before transplant, and it's one of the big scares associated with him going to transplant in the first place b/c in a severely immunocompromised system, it can be catastrophic if not controlled; many people are positive for this virus, but in a healthy person, CMV is mainly dormant). We have to go in tomorrow for labs, high dose ganciclovir (this is the IV med we give every M-F at RMH). He will also have to repeat a creatnine clearance, as his kidney function numbers have been elevated, and higher doses of ganciclovir will aggravate that even further. We should find out Thursday what higher dose of gancilovir Ty will have to be on at RMH. Please pray that the CMV is easily brought back under control with the use of higher doses of ganciclovir. Additionally, Ty continues to lose weight (even though he's back to eating nearly the amount he was prior to transplant PLUS extra calories/fat/protein in the form of soy drinks and soy ice cream, etc). They're testing his stool to make sure there's nothing going on in his GI tract (although since about a week or two after discharge he's had no more diarrhea, so I'd be surprised if anything is growing). I know that GVHD can show up in the stool as C-Diff. I'm not sure exactly what else they'd be looking for, other than the obvious ova and parasites and such. And, because of the elevated kidney function labs, Ty either has to drink more water (in addition to forcing down all the extra calories which take up valuable tummy space) or he may need to go back on IV fluids here at RMH. I think that might be a good option, although Ty is opposed to it. The only real inconvenience for him is getting up in the middle of the night to pee and having to lug the IV backpack. Another reason to keep things flowing in that department is to prevent hemorrhagic cystitis, which is fairly common, but ugly, in post transplant kids. So, that's about all the news from here. Now that the girls are gone and I can leave the room at night to head to the lobby (the only place I get internet service in RMH anymore), I should be able to get back to updating every couple days. Please remember all the FA kids in your prayers. I haven't checked any website since my girls arrived, but I know Brian Kuell should have been transplanted by now in MN. I also know that Nathan got home from transplant, and "A." should be home by now too. Devin's brother's funeral was supposed to be last weekend, and I know they were still awaiting word on Devin's bmb/bma done last week. Last I read Jordan was still having quite a struggle. Last I read Erin and Apryl were still doing fabulously. Taylor here in NY is doing great (thanks to everyone for your prayers for him when he was readmitted recently). I hope to start writing our 'Dear Donor' letter this week. I'll let you know how that's going. It's difficult even thinking about it. How do you say 'thank you' to someone who gave so much for a little boy he didn't even know?! So much in the way of stem cells, so much hope for the future... Oh, and YES, Ty's restriction started today. The terms (at this point anyhow) are: He may play with Taylor, but with nothing that requires batteries or electricity (including the phone; NOT including the webcam for family). He has to be in bed by 7:30. He has to do everything he's supposed to do, withOUT being reminded and without whining, or else he'll get harsher and longer restriction. AND he has to help out more (without being asked and without whining). I'll let you know how it goes *ugh*. (Who am I really punishing here?!) Lots of hugs for my girls!! I love you a bushel and a peck... and I miss you oodles and poodles!! How do you suppose... Love, Karen/Mommy

Thursday, July 28, 2005 11 PM PS Forgot to add that Ty was started on some troches for some thrush. Day 36 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Discharged MSKCC 7/15/05 COUNTS: NOW (NORMAL) WBC 3.4 (4-11) (last G-CSF 7/8!) Hgb 11.1 (13-17) (last transfused 7/15) platelets 124 (160-400) (last transfused 6/30!) ANC 2.8 (1.5-8.8) My girls are here! My girls are here! And I am just enjoying the heck out of them. We're not doing anything newsworthy, just spending family time together :) Thank you Steve :) :) (They arrived here yesterday around dinner time, and they depart on Wednesday.) Oh, and they brought GORGEOUS weather with them. We've been outside on the terrace almost constantly since they arrived. Ty had his procedures at MSKCC yesterday (bmb/bma and mediport placement). Everything went well. He's VERY sore, and moving slowly and gingerly, but a couple doses of pain medicine last night and one dose of regular tylenol today was all it took to make it bearable. Ty ended up vomiting apple juice after anesthesia (they make you pee and drink and they'd LIKE for you to eat before you're let go). He finally managed to keep a few sips of water down and they let him go. Today he complained of nausea, too. I gave him a dose of vistaril and that fixed it. This time they went in his pelvic bone from the front (it was the same surgeon who did his port placement, and I'm assuming they did it on the front just because he was already on his back for the other). Other than being a little surprised at the location, Ty doesn't seem to be moving any more slowly (or quickly) than when they do it on the back side. Hope to have some results next week. The surgeon removed the temporary triple-lumen CVC from Ty's left subclavian area and put the mediport in the right subclavian area. It will be 'accessed' (needle left in place) until Ty no longer needs nightly ganciclovir IV. The needle can stay in for a week at a time, then a new one will be put in (infection control). For those who don't know, the mediport is a smallish, in this case single port which is put in his chest and threaded into the vein. It's all under the skin, with just a (pretty noticeable on him b/c he's so skinny) bump that sticks up. That 'bump' has a smaller area which is where the needle can be placed (for blood draws, meds, transfusions, etc). We can use EMLA cream to numb things before accessing him most times. Once the needle is no longer needed everyday and is removed, then there will be few restrictions for Ty as far as the port goes (he can swim, bathe, shower, etc). A funny thing happened on the way to the hospital (ok, not so funny **grin**). Ty got caught in a lie. He's going to be on restriction for the week beginning immediately when Steve and the girls leave. Neither of us is happy about this (believe ME, it's as much a punishment for me as for him!). For those of you who don't know us really well, lying is totally unacceptable behavior in our home and it's the rule that a violation will get you a mouth-washing PLUS loss of privileges. Unfortunately, with mouth sore issues, I don't feel I can make Ty wash his mouth out right now. I'm really surprised this is even an issue again for him. Both of my girls learned after just two episodes each that lying is much worse than telling the awful truth of something. I guess Ty hasn't learned that lesson yet :( So here's what happened. He's not supposed to be in contact with people or things that people are in contact with, so everytime he touches (ie) a door handle, phone, etc. he has to wash his hands. It's HIS responsibility to be totally dressed everyday, which includes sunblock, hat, mask and carrying alcohol hand sanitizer in addition to the obvious things dressing includes. This is no new rule, by the way. He's been required to do all of this except the mask for probably 10 months now. Well, he opened the door and I reminded him to wash his hands. He said ok. A few minutes later (when I realized I never heard the click of his bottle) I asked if washed his hands and he said YES. A few minutes later I asked him for some alcohol for myself and found out he didn't bring it, found out he lied about doing it. Really troubling to me. We ended up having (ANOTHER) really big talk about trust issues, increased privileges as he matures, etc. and (like the times before) he seems to really understand. Only time will tell. Good news is, it's been quite awhile since he's been in trouble for anything, so... Hopefully this was just a temporary loss of sanity!! Well, not much else to report. Thank you for checking in on us. I'm so sorry I didn't post yesterday after the procedures. I have absolutely NO internet service in my room anymore... only on the first floor of RMH... and it's just not possible to leave my room every night, esp with the girls in there :) I'll try to do better, though. I have new photos to post...hopefully tomorrow. Please continue to pray for all the FA families, wherever they may be in this process. It's so hard. Love, Karen

Monday, July 25, 2005 11 PM Day 33 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Discharged MSKCC 7/15/05 COUNTS: NOW LAST NL WBC 3.1 3.2 4-11 (last G-CSF 7/8!) Hgb 12.1 12.2 13-17 (last transfused 7/15) platelets 120 102 160-400 (last transfused 6/30!) ANC 2.4 2.3 1.5-8.8 All good news :) Today's clinic visit went very well. Counts are good. Ty is officially off IV fluids. Only IV med now is the ganciclovir, which Ty gets M-F for the next several months. The only other change was the addition of Acyclovir (anti-viral) on Saturdays and Sundays only (200 mg po tid). We also met the surgeon today. He was nice enough to see us today rather than make us come in tomorrow for pre-op stuff. It made our morning stretch to lunch time, but it was worth it (freeing us up all day tomorrow). Wednesday Ty is first on the schedule at 6:15 am for bmb/bma and mediport placement. Should be outta there by lunchtime at the latest (famous last words??). Some more good news is that Taylor is out of the hospital and feeling better! We saw him and his mom for a little bit at dinner. His mom was on a roll (getting answers she liked at Taylor's clinic visit today) so she asked the ARNP Ann about us renting a car and traveling a bit. Ann said it sounded like a fine idea :) So... SOON hopefully. And the best news of all is that there are less than 2 days now before I get to hold my girls again. I was actually crying last night thinking about how happy I am that they're coming, and how sad I'll be saying goodbye to them next week. It's so tempting to just keep them here with me. My biggest reservation would be the WHAT IF Ty had to be readmitted. What on Earth could I do with my girls... so... (Another reservation is the whole school change thing...) I've had time to read some books since arriving in NYC. About 14 to give you an idea. The last 4 have been borrowed from Jeanne. I particularly liked "The Last Sin Eater" by Francine Rivers (I think that's her name). The author was a secular writer and then became a Christian. Two others by Francine Rivers were novelas (a series of 5) about how 5 women changed the world forever... one was Bathsheba. Another was Rahab. (I think I'll hunt down the other three to read, one of which I know is Ruth...don't remember the other two off the top of my head). The previous two books I read were by Nicholas Sparks. I thought I might like his work, since his writings are similar to Jodi Picoult's, but I didn't care for his books at all. The first 8 or so were Jodi Picoult books. The best of hers, I thought, was the first I read (My Sister's Keeper)...but it could be b/c it involved a transplant (hmm). I can't believe I've been able to read so much here. I guess all that time Ty was sleeping (due to chemo and TBI and meds) was really fruitful for me. I use to read a LOT when I was single... and less when I was married... and MUCH less once I became a mom. I'm really glad for this time with Ty and books and myself in some ways, although I'd give it all up in an instant for life back to 'normal' :) Ty has been doing some serious reading up here as well. His best friend Nathan gave him the Chronicles of Narnia (but in English it's definitely something I have to read to him). Steve loved the stories so much when he was a kid, that I decided to ask my cousin Chris and his wife Linda (when they asked what Ty might want) to try to find the stories in Traditional Chinese. They DID! And Ty is on his last one. Thank you C&L! My friend, Carrie, found a Lord of the Rings book in Traditional Chinese on eBay and it arrived today... what a treat and just in time! Thank you! I loved the pictures of the infamous Naked-Four from the 'no-sleepover' too :) Thanks :) Steve said he and the girls are having great fun at Uncle Kevin and Aunt Susan's cabin in Maine. He also said he's exhausted and needs a vacation from the vacation. I have to laugh here. I always say that a vacation is never a vacation for the mom... and now that he has all the responsibility he understands! Poor Daddy.... Ty finally opened the five boxes of gifts that he received recently, and we spent the entire weekend writing thank you notes! Thanks to everyone for all the presents. You've really touched my heart (and Ty's writer's cramp will eventually dissipate *smile*). A friend/neighbor sent Ty a Star Wars Light Saber which gets calibrated to and shows up on the TV screen. It is awesome and Ty can't wait to get Taylor over tomorrow to have a go at it. I'm going to have to get one for my nephew Adam... I think he'll LOVE it. Thanks, Penne!! Cher, mom of a classmate of Zoe's, not only did a bone marrow / blood drive in honor of Ty, she also designed T-shirts for the event, took lots of pictures, and helped her co-worker/friend Joan make a really touching quilt, signed by all the folks she works with and who got on that donor bus and GAVE. Thanks Cher! No telling how many lives you helped save by getting so many folks registered with the NMDP!! My Savannah friend, Carrie, sent a box of super cool games, including some I've never played like Skip-Bo and mencala! It'll be fun learning these with Ty, although I've found that I have to do this first thing in the morning... my brain is just too tired later in the day to figure out (and remember) new rules to a new game. We've received so many thoughtful things... and we really appreciate everything. Especially your continued prayers and well-wishes, guestbook entries and emails, phone calls and visits. Thanks for checking in. (Maybe I should update more frequently so the entries won't be so long :) Love, Karen Friday, July 22 noon UPDATE Please remember Taylor in your prayers. He was readmitted last night for abdominal pain and fever. Thank you!

Thursday, July 21, 2005 11:30 PM Day 29 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Discharged MSKCC 7/15/05 COUNTS: NOW LAST NL WBC 3.2 4.3 4-11 (last G-CSF 7/8!) Hgb 12.2 12.0 13-17 (last transfused 7/15) platelets 102 145 160-400 (last transfused 6/30!) ANC 2.3 3.2 1.5-8.8 We went to clinic and saw Dr. Boulad's ARNP Ann this morning. Everything is still going perfectly. See counts above. We spent from 8 AM to around 3:30 or 4 PM at the hospital because Ty had to receive his first dose of IVIg, which they infuse over 4-5 hours after pre-medicating with benadryl and tylenol. His immunoglobulin count was 660 (which is above the 600 baseline they require in order not to give the IVIg, however because Ty is CMV positive they always give at least 2 doses...if I understood correctly). He'll receive his next dose in one month. Beginning tomorrow we will start tapering the Tacrolimus (an anti-rejection drug) over a month. We were told to be especially vigilant noting ANY changes and letting MSKCC know right away, day or night, weekday or weekend. They are reducing Ty's IV fluids to 500cc's every night, and we will not give any IVF Sunday night. If Ty's labs (electrolytes and kidney functions) are ok Monday (having missed the fluids that previous night) then we will probably stop the IVF altogether. Ty is feeling better each day, gaining strength, having fewer and fewer symptoms, eating and drinking more, etc. He's had fun playing with Taylor since back at RMH (video games, HP Uno, etc.). Ty's also been very busy reading. I think he's on about the last one or two books of The Chronicles of Narnia by C.S. Lewis (in Mandarin). He loves them (THANK YOU CHRIS AND LINDA!!) I am SO looking forward to seeing/hugging/loving on my girls next Wednesday the 27th. They will be here until the 2nd! :) :) :) On the 27th Ty is scheduled to have his port placed and his bmb/bma. Nice and loopy... just like his sisters like him! (haha) Well, that's about all that's going on here. Oh, except Jeanne and the kids and I are planning to make a break from here one day SOON... rent a car and maybe take the Fiaschiettis' up on touring West Point or maybe just drive until we find something. I'm not sure if we're going to run it by Dr. B yet or not. He's actually leaving for a 3 week vacation on Sunday, so maybe that will be a good time to ask someone else :) Oh, and a funny story about Jeanne (sorry Jeanne, I've been waiting for you to post this on your website, but you're taking too long!). We are both on the 3rd floor and our windows overlook a terrace. Well, Jeanne gets better ISP on the terrace, so she can often be seen literally hanging out her window. She balances her laptop on the planter. Well, while working on her computer she noticed a bunch of weeds in the planter and proceeded to pull them, leaving only the three flower bunches down the center of the planter. Wouldn't you know, we're sitting out there the day she did that, telling me she's about to go weed all the other planters, when out comes the local "butterfly farmer" who is looking over all his butterfly bushes! Five minutes later and his butterfly garden would have been in the bottom of a hefty trash sack! (LOL) I'm going to try to post some pictures tonight, although the internet service here is horrible and I keep getting bumped. Thanks for checking in. We appreciate you all so much! Love, Karen

Monday, July 18, 2005 2PM 7/19/05 10:41AM UPDATE: Tragically, Devin's brother, Matthew, did not make it through the night. PLEASE pray for this family. Day 26 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Discharged MSKCC 7/15/05 Hi everyone. Thanks for stopping by. Yesterday was a quiet day with nothing much to report (YAY!) We went to Clinic this morning and had labs and saw Dr. Boulad. Things couldn't have gone better. COUNTS: WBC 4.3 (last G-CSF 7/8!) (NL 4-11) Hgb 12.0 (last transfused 7/15) (NL 13-17) platelets 145 (last transfused 6/30!) (NL 160-400) ANC 3.2 (1.5-8.8) We are stopping the Kytril to see if Ty can do without it (that's the nausea med). He's not had any nausea since returning to RMH. We are decreasing the IV fluids from 1000cc to 800cc, still over 10 hours, though, so it doesn't interfere more than necessary with sleep. If Ty can increase his PO fluids by a couple more cups a day, then they'll be able to do away with the IVF all together. Ty will have his port (or whatever they decide on) placed 7/27, and will have his bma/bmb done same day. Here are the answers to some questions I had: 1) Because Ty was CMV positive prior to transplant, and b/c we don't want the CMV reactivated in his immunocompromised state, should we receive only CMV negative blood products? No. Many studies have been done in the last couple years showing that it's only important for CMV negative immunocompromised people to receive CMV negative blood. Additionally, MSKCC as well as many other facilities use WBC filters. CMV is carried in WBCs, so the thinking is that if WBCs are being filtered out, then CMV will not get in. All blood products will, however, still need to be irradiated (and probably washed, too, due to severity of reactions he has to blood products). 2) How often is the CMV antigenemia being tested (to determine if Ty's CMV has been reactivated)? Twice weekly. (This is so important, b/c CMV is an EXTREMELY dangerous foe to immunocompromised kids... and b/c Ty is CMV positive, that means the virus will always be in his body...hopefully only in a dormant state) 3) What is Ty's CD4 count? Zero "0". MSKCC won't even begin testing until 2 months post transplant, as past experience has shown them that counts remain zero or low up until around that time. The CD4 count tells your doctor how strong your immune system is and helps predict the risk of complications and debilitating infections. 4) What about IVIG? They are sending lab today to determine need. IVIg (IV Immunoglobulin) therapy strengthens the immune system by replacing the deficient immunoglobulins and provides temporary protection from potentially harmful viruses and bacteria. We met a lovely family from Ireland today at Clinic. They've quite a story. Their little boy, Oscar (7) was diagnosed 3 years ago with Fanconi Anemia. After 6 months of testing his blood sample to determine which type of FA he had, it was decided he did not after all have FA, but some other unidentifiable chromosomal abnormality, very similar to FA. Long story short, they used a similar transplant protocol as the FA transplant protocol, but it failed. They're looking at options now. To add to all of this, they had a baby here a few weeks ago. This baby has the same chromosomal abnormality as Oscar. Their 9-y-o does not. Please keep this family in your prayers as they struggle with decisions over the next weeks. They, like so many here, are FAR, FAR from home, making everything that much harder. I met the dad (name?) and Oscar. The mom's name is Eva. She was at the apartment with the other two children. (This family was very lucky to meet up with a woman who spends half the year in her native Ireland and so offered her NY home to this family. They recently moved out of RMH into this woman's Manhattan apartment.) I met another family a few days ago. They're here from Norway and have been for FIFTEEN months. Please remind me never to complain about 6 months. Also, Devin (transplanted in MN) and his family could use your prayers. While Devin is doing well, his mom was hospitalized for about a week or so and now his brother was involved in a MVA and is in a coma. Devin's dad had to leave Devin and mom in MN to head back home to deal with the injured brother. For all the sad transplant stories, there are just as many great stories, too. Please remember to give thanks. Ty and Taylor here in NYC are both doing great. Erin, Nathan and A are all doing fabulously in MN, and Jordan is doing a bit better each day (also in MN). Please remember Brian as he begins pre-transplant TBI and chemo in MN this week. And please remember all the FA families in all stages of this disease. Thank you all for you many kind words, thoughts, prayers and deeds. We are at a loss when we want to express just how deeply you've really touched us and how much you mean to us. Hugs for my girls. I love you both. Love, Karen/Mommy

Saturday, July 16, 2005 10:45 PM Day 24 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Discharged MSKCC 7/15/05 Today was good. Ty's eating much better and feeling much better in general. He still has diarrhea, but no pain, no vomiting and NO NAUSEA! He is cold all the time, so he's dressed for Winter (in Florida), but other than that everything is good. We did a very small walk together today... just a block out and back when it wasn't too busy on the street. I went to both of my regular groceries today while Ty stayed in the room (Matter of Health up near 77th on 1st, and a nice little 'regular' store on the corner of 74th and 1st). I did 4 loads of laundry today as well... which turned into an all day affair. The machine on our floor is still not working. Ty and I went to 8 floors before we found a washer we could use, and even at that I still had to remove someone's clothing from both the washer and dryer... but in all our 4 loads the owners of the other laundry never appeared, so good thing we didn't wait for them to remove their things from the machines. It's nice the RMH has machines though! It's been no problem at all with the meds and the IVs, although the 'horse pills' are about to kill Ty (so he says). The IV pump is a tiny little thing maybe 4" x 5" x 2" and the whole 1000cc fluid bag and pump fit nicely into a special backpack so we aren't tethered to the room (he has to be hooked up 10 hours a night for fluids and electrolytes). The one IV med he came home on is only M-F and only takes one hour at night to infuse (by gravity, not on the pump). Beginning tomorrow am there is a 24 hour urine (creatnine clearance) to be done. Our first clinic visit will be Monday at 8:15. We're to hold one of his PO meds (tacrolimus) that morning and take it with us as they need to do a trough level before he takes it. Oh, I forgot to tell this story yesterday. When we left the hospital to head to Cherry's Pharmacy for the compounded med (tacrolimus) that the hospital couldn't make for us, we walked by a bunch of trash and Ty says, and I quote, "DAMN! That smells so bad!". I of course said, "WHAT?!". To which he replied "That smells so bad!". To which I said, "No, I mean the other part. Repeat the whole thing you just said". Which he did. I stopped dead in my tracks and asked him what that means. He said he didn't know. I asked him where he heard it (thinking he'd say "school"), and after several "I don't know's" he finally fessed up and said, "Well Daddy says it sometimes!!" Daddy, are you reading this?! So, I told him it was something that he is not to say anymore. That it's not appropriate for him to say to his friends or to anyone else... that it's a 'bad word' and that even adults shouldn't say it. He looked totally astounded (that it was a bad word)... We were awakened this morning at 7:30AM (Yes, I said AWAKENED... we are usually up by 5:30am, but I told Ty that other than having to disconnect his IV meds at 5:30 this morning, we could sleep as late as we wanted.) HA HA. So, it was the home health nurse calling to make their second visit appointment (to which I replied that the nurse we had last night made us "independent" since I'm and RN and all set). He first called my cell, then he called the room phone, then when I didn't answer that he called again. Persistent little fellow. Anyhow, he seemed pretty relieved not to have to come into the City on a Saturday, so everyone was happy. I did ask him to please update the file so we don't get called again :) We've gotten to visit with Jeanne and Taylor at a couple meals since we've been back at RMH. It is SO nice chatting with another adult :) :) Jeanne is so sweet and I'm so glad she'll be here most of the time we are. Well, that's about all. I doubt I'll be posting every single day, especially as Ty's doing better and better... but I do plan to get on at least a few times a week for now (to post). I read the guestbook everyday though. Thanks for your many prayers and all your sweet correspondences. We have packages here in the room which Ty needs to open (and will be writing thank yous for this week, along with the thank yous we still need to get out from things received the last couple weeks in the hospital). Love, hugs and kisses. We miss ya'll. Karen

Friday, July 15, 2005 9 AM UPDATE 11:45PM: We left MSKCC around 5'ish this evening. Made a trip to Cherry's Pharmacy for one drug we couldn't get at the hospital. Then headed to RMH. Got here around 6PM to receive the shipment from the home health company. Home health nurse came (an hour late) around 7:30PM and only stayed about an hour and half. We then headed downstairs for dinner (only our second meal of the day...missed lunch b/c of discharge delays) with friends Jeanne and Taylor. Ty ate a lot of food (peas, frozen dinner Indian food and soymilk)! Got back to the room so Ty could take a quick bath, then off to bed for him about 15 minutes ago. We're pooped and are looking forward to sleeping in well past our usual 5-something AM time :) Although his IV pump will be beeping about 5:30 AM (ugh)...but hopefully we can both go back to sleep after unhooking him. More tomorrow. Sleep well... Day 23 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 COUNTS: WBC 2.9 (last G-CSF 7/8!) (NL 4-11) Hgb 7.7 (last transfused 6/29!) (NL 13-17) platelets 160 (last transfused 6/30!) (NL 160-400) ANC 1.9 (1.5-8.8) MEDS: Kytril 0.5mg PO bid = anti-nausea/vomiting Tacrolimus 2.6 mg PO bid = prevent rejection Erythromycin ointment 0.5 percent apply right eye bid = antibiotic for sty Folic acid 5mg PO qd = B vitamin to make new cells, ensuring proper DNA replication Prilosec 20mg PO qd = blocks stomach acid production Ganciclovir 75mg IV daily M-F only = helps keep CMV at bay Potassium Chloride 20 mEq PO bid (horse pills!) Pediatric Multi-vitamin 1 PO qd IV fluids and electrolytes IVIG every month ****************** PRNs: Vistaril 25 mg PO q6h PRN nausea Today: Well, Steve left for the airport about a half hour ago (they told him to arrive 2 hours early, and it takes a half hour to get to the airport). He's bringing BIG HUGS home for my girls. We're going to miss having Daddy here, but know the girls need him more right now. As you can see from Ty's counts, everything went down. He'll be receiving PRBCs this morning. They're ready now, so he was just pre-medicated (tylenol, benadryl, hydrocortisone). He'll likely receive G-CSF today or Monday at clinic. The prescriptions are down in pharmacy getting filled. The doctor already rounded (just to say hi) and we're expecting Grand Rounds later this morning for any final word on changes. Ty's eating better and better each day, so we're definitely done with TPN. Diarrhea is still a problem. I believe everyone still expects that as the antibiotics get out of his system, and as Ty's body gets used to having food in it again, the diarrhea should clear on it's own. Nausea is at a minimum. No fevers and no vomiting. We're good to go! We'll update as we know more. Enjoy your day and please remember FA folks in your prayers...it's hard sometimes no matter where in the 'journey' they are because there's always "worry" even when nothing is imminently wrong. Love, hugs and kisses. Thank you for all your prayers, well-wishes, cards, guestbook entries, phone calls, IM chats, etc. You guys are AWESOME!! Karen

Thursday, July 14, 2005 9 PM Day 22 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 COUNTS: WBC 4.4 (last G-CSF 7/8!) (NL 4-11) Hgb 8.7 (last transfused 6/29!) (NL 13-17) platelets 185 AWESOME! (last transfused 6/30!) (NL 160-400) ANC 3.1 (1.5-8.8) MEDS: Granisetron 0.5mg PO bid = anti-nausea/vomiting Tacrolimus 2.6 mg PO bid = prevent rejection Erythromycin ointment 0.5 percent apply right eye bid = antibiotic for sty Folic acid 5mg PO qd = B vitamin to make new cells, ensuring proper DNA replication Protonix/pantoprazole sodium 20mg PO qd = blocks stomach acid production Ganciclovir 75mg IV daily M-F only = helps keep CMV at bay D5W 1/2 NS Potassium Chloride = IV fluids and electrolytes Potassium Chloride 20 mEq PO bid (horse pills!) Pediatric Multi-vitamin 1 PO qd IVIG every month ****************** PRNs: Hydroxyzine 25 mg PO q6h PRN nausea Butt Paste (TID) = anal sores TODAY Today the docs discontinued Ty's pain meds. They also discontinued the TPN, lipids, mupirocin, and nystatin & sodium bicarb swishes. We eliminated two pumps from the IV pole! I got to practice dressing changes, flushes and cap changes for the CVC. We received a box of sterile dressing changes, a box of gloves, and a box of alcohol preps. Got a list of phone numbers to call in emergency. Read through the discharge booklets and spent about a half hour with a discharge planning nurse discussing all the DON'Ts (yes, there apparently ARE that many!). Just received the outpatient prescriptions (which we'll get filled at the hospital tomorrow). We anticipate being out of the hospital around dinner time tomorrow. Please keep your fingers crossed! Found out Dr. B is going on vacation for 3 weeks (but second-hand info, so don't know when). Also found out the lab test they did to determine cellularity percentages will take 3 weeks for results. I think that was a big waste of money, since he's going for a bone marrow biopsy and aspirations next week and we'll know those results about a week later. Ah well... Steve leaves us tomorrow to head back to my girls in Florida. He has been such a big help sleeping at the hospital the last two nights plus tonight so I can get some good rest at RMH, lugging loads of stuff to RMH for us so that I won't have too much to lug tomorrow while pushing Ty in the wheelchair (can't take a cab), visiting with me (nothing like adult conversation after a month of mostly KID chat!) and playing with Ty, of course... mostly Risk (of course!). He leaves us around 8 am tomorrow. We are going to miss him so much, but know he needs to go back. Thank you, Honey!! (And thank you Zoe, CeCe, Mema, Miss Anita and Aunt Donna for letting him come and for 'covering' him. :) We love and miss you all. Please remember all the FA families in varying stages of this disease. Also, please remember Ty as he maneuvers the next 18 months post transplant (please specifically pray against infection, graft vs host disease, CMV, and rejection of the graft; please also pray for continued improvement in all areas including stamina, appetite, diarrhea, nausea, and pain). Also, please say a word of thanks for our wonderful donor, without whom we would be where we were a month ago. Thank you for your cards (YANGCHUN family!) words of encouragement, well-wishes and prayers. They mean so much to us! Love, Karen

Wednesday, July 13, 2005 8PM Day 20 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 COUNTS: WBC 4.8 (last G-CSF 7/8!) (NL 4-11) Hgb 8.9 (last transfused 6/29!) (NL 13-17) platelets 173 AWESOME! (last transfused 6/30!) (NL 160-400) ANC 3.1 (1.5-8.8) MEDS: Granisetron 1mg tablet (0.5mg PO bid) = anti-nausea/vomiting Fentanyl (PCA pump/ rescue only) = pain med (DECREASING) Tacrolimus (1/2 IV, 1/2 PO) = prevent rejection (SWITCHING TO PO) Erythromycin ointment (0.5pply right eye bid) = antibiotic for sty Folic acid (5mg PO qd) = B vitamin to make new cells, ensuring proper DNA replication TPN & lipids = nutrition (CYCLING DOWN) Nystatin swish and swallow (10ml BID) = antifungal Sodium bicarb swish and spit (10ml TID) = oral care Protonix/pantoprazole sodium (20mg PO qd x 3o days 7/9/05)= blocks stomach acid production Ganciclovir = helps keep CMV at bay (M-F only, weekends off) Butt Paste (TID) = anal sores Mupirocin (TID) = antibiotic for anal sores D5W 1/2 NS Potassium Chloride = IV fluids and electrolytes Lots of PRN meds. TODAY: So, as you can probably see, the IV fluids, TPN, lipids, fentanyl and ganciclovir are the only remaining IV meds. We are keeping a food diary and if Ty's eating enough, the plan is to try to stop the TPN and lipids tomorrow. The fentanyl will also be stopped tomorrow. And hopefully the ganciclovir will be completely switched to PO tomorrow or Friday. Ty may or may not need continued IV fluids upon discharge. Ty had some nausea this morning (quickly relieved with added PRN meds), and diarrhea continues to be problematic. Ty's using very little pain medicine, he's had no fevers, no vomiting and he's been up all day long playing Risk, watching movies, eating(!), and coloring. Today's intake was better than yesterday's. The nutritionist tallied up calories and protein from yesterday (calories were 700-something; Ty needs around 1700, but she said that's 'optimal', not necessarily necessary for discharge thank goodness). Regardless, he can only eat as much as he can eat, and it seems he's eating incredibly well for having eaten almost nothing for the last 3 weeks. He'll eat a little more each day... Steve spent the afternoon running loads of stuff over to RMH for us. (When Ty is discharged, he's not allowed to go in a taxi or public transportation, which means I'll be pushing him in a wheelchair. I think we'll have it down to one small suitcase on wheels by discharge day, although admittedly this may be too optimistic). I must say, things have gone really smoothly with me and Ty being cooped up in a very tiny space together for so long, but yesterday and today my patience has begun to wane dramatically. Just saying'. I'm looking forward to our little-bigger-than-tiny-room at RMH for the next 5 months. DISCHARGE: Still looking at Friday. YIPPEE!! LAST NIGHT: I took advantage of Steve being here to head to RMH for a good night's sleep... in a BED (first time in a month!)... and to do some things that have been neglected for a month now (shave, color my hair, sleep in, watch some news on TV, etc.). It was no less than GREAT! I feel guilty, since Ty didn't want me to leave, but I'll be able to give him more if I feel better myself. Thank you, Steve :) And thanks for letting me go again tonight (wink). Well, that's about all there is to post from here. More tomorrow. Please continue to pray for Ty's ongoing healing as well as for all FA families in all stages of this disease. Also, please pray for my girls... that they'll understand the need for this separation and not feel neglected and resentful. Also, for Mema, Missy, Poppy, Miss Anita and Donna as they continue to share in the day-to-day care of the girls. Thank you for your many words of encouragement, well-wishes and prayers. They mean the world to us! Love, Karen

Tuesday, July 12, 2005 3 PM Day 20 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Counts: WBC 4.4 (last G-CSF 7/8!) (NL 4-11) Hgb 8.7 (last transfused 6/29!) (NL 13-17) platelets 145 AWESOME! (last transfused 6/30!) (NL 160-400) ANC 2.7 (1.5-8.8) Meds: meropenem = antibiotics ondansetron/zofran (CONTINUOUS) & vistaril (PRN) = anti-nausea/vomiting amphotericin B/Ambisome = antifungal (NOW QOD) tylenol, benadryl, methylprednisolone = pre-meds (PRN) fentanyl (PCA pump and continuous drip) = pain med (DECREASING) hydrocortisone cream = itchy rash (PRN) magic mouthwash = for mouth sore pain (PRN) phytonadione/Vit K = helps with clotting potassium acetate, magnesium sulfate, calcium gluconate = electrolyte replacements tacrolimus = prevent rejection erythromycin ointment = antibiotic for sty (BID) folic acid = B vitamin to make new cells, ensuring proper DNA replication (PO NOW) cyanocobalamin = vitamin B12 TPN & lipids = nutrition (CYCLING DOWN) nystatin swish and swallow = antifungal (BID) sodium bicarb swish and spit = oral care (TID) protonix/pantoprazole sodium = blocks stomach acid production (PO NOW) G-CSF = stimulates cell growth (PRN ONLY BASED ON COUNTS) bactroban ointment for CVC insertion site redness ganciclovir = helps keep CMV at bay (M-F only, weekends off) Butt Paste = anal sores (PRN) Med Changes: Discontinue continuous drip fentanyl; keep PCA patient rescue button. Discontinue ambisome. Discontinue meropenem (hopefully the diarrhea will improve!). Change tacrolimus (Q12H) to 1/2 IV and 1/2 PO. The tac level is low, but because of Ty's elevated liver function numbers and his kidney function numbers, they're going to leave it low in lieu of increasing the dose and increasing the liver/kidney effects. Add bactroban to rectal care regimen. Also, I notice other changes on the med sheet which they did not tell me about. I'll post updated meds tomorrow. Today: Well, you can hopefully see from all the med changes above that things are moving toward discharge (YAY!). The doctor today said the CTs were all normal. They just sent the nurse in to do a nasal swab for culture, just to make sure the continued sneezing isn't something that needs to be treated. Tomorrow they'll do an RFLP (Restriction Fragment Length Polymorphism) lab test to determine the percent of donor cells in ty's body. On day plus 28, plus 29 or plus 30 Ty will have a bone marrow biopsy to determine status of cellularity and other things. Before discharge Ty will have to go back to surgery to have another line put in (and the current CVC removed). We'll decide later which type of line (probably a 'port', which is an under-the-skin type of line, that gets accessed through the skin. The PRO is that Ty won't have this external contraption with all the tubes hanging down. The CON is that he will feel each needle poke, as they'll be going through the skin. If I remember correctly from my nursing days a million years ago, we should be able to leave a needle in place for periods of time (days) without having to poke each time. We'll see. The idea is that with Ty still needing so many things IV, they want a really good access, without going peripherally (as those poor arm veins have been used too much already). All that said, we might be discharged to RMH this weekend!!! I am tearing up just writing that. How awesome is that?! Now, we just need to pray and hope for no infections, no CMV, no GVHD, no rejection. Happy to leave on a good note today :) Love, hugs and kisses to my girls. I love you oodles. Please pray for all the kids in transplant and all the FA families in every stage of this disease. ~Karen Daddy arrived about noon today (YAY!). He was here a couple weeks ago, but it took him 10 minutes to get gowned/masked/gloved today (haha). We're so glad he's here.

Monday, July 11, 2005 11 PM Day 19 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Counts: WBC 6.3 (last G-CSF 7/8!) Hgb 9.5 (last transfused 6/29!) platelets 139 AWESOME! (last transfused 6/30!) ANC 4.4 Meds: Same Today: Ty felt better today. He was up all day long. He ate a little at all three meals. He had no nausea, no vomiting, and no fever. His only pain is rectal (there's a fissure there plus some sores). He still has diarrhea and is still sneezing. Because Ty has been fever-free for several days the doctors want to discontinue his final antibiotic. However, because he is still sneezing so much, the doctors decided to send him for a CT of the chest and sinuses first. So far the sinuses have come back fine (still awaiting chest results). Going to CT was Ty's first foray out of his room since being admitted. Pretty interesting... you know how strict they are on this unit regarding reverse isolation patients... well, there we sat in the hallway of the CT department, amongst probably 20 other people... many hacking/coughing all over the place. So if Ty wasn't sick going down there, he well could be now :( Ugh. Ty ate half a banana for breakfast, some rice and green beans for lunch, and 2/3 of a veggie burger for dinner PLUS 2 cups of juice/water today. Not a lot at each meal, but so much more than he's eaten in the last 3 weeks put together, probably. Awesome. They're really trying to get the TPN discontinued before discharge. Another couple days like this and we may be there. Ty, for those of you who don't know, can usually put away more food than his dad or I can eat... and he stays skinny (hmph!). He was around 73 pounds when we arrived, and he's down to 67 pounds today. Ty worked on his art project for the PDH again today. He played xBox, watched Animal Planet, played gameboy and finished one of the Mandarin Chronicles of Narnia that Chris and Linda sent. Oh, and of course he played Bingo... and won! Well, I've got to hit the hay. 5AM comes mighty early around here. Happy Birthday ZoZo!! I love you oodles and oodles and oodles. (Yes, CeCe, I love you too... oodles and oodles and oodles!) Please continue to pray for all the FA families in every stage of this disease. And please remember to thank God for the many blessings he's bestowed on us and on you :) Love, Mommy/Karen

Sunday, July 10, 2005 1PM UPDATE 8PM: Ty felt really crummy most of the day today. He needed extra nausea meds twice and he felt like he wasn't getting enough air. He finally fell asleep around 5 for an hour and awakened feeling a bit better. He only ate about 5 bites of dinner, plus about 5 ounces apple juice (and that's pretty much all today b/c of his poor tummy :( ******************************** ******************************** Day 18 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Counts: WBC 7.0 Hgb 9.4 (last transfused 6/29!) platelets 125 AWESOME! (last transfused 6/30!) ANC 5.1 Meds: Same Today: Today Ty is better than yesterday. He's sitting up on a stool watching Lord of the Rings. He was nauseated this morning, but that was fixed with vistaril. He still has diarrhea. He's still sneezing. No temp, no vomiting. The only pain he's having is the buttox pain. He feels like he has 'air in tummy'... hmmm, could it be the black beans he ate yesterday? So no more beans for awhile, even though it's what he's craving. I ordered him up a PB&J for lunch. Hopefully he can get at least some of that down (since they continue to decrease his TPN and he's now down to 67 pounds). That's about it on the medical front. Weekends around here are pretty boring... no Child Life Specialists work on the weekends, and the PDH (Pediatric Day Hospital, where they have awesome games/videos to lend out) is closed. We did find out yesterday that there will be no roaming the halls for Ty before discharge. Dr. B said they usually reserve that luxury for people here 40 days. Plus he said there are a couple of active cases of influenza on our floor, and he definitely doesn't want Ty walking by any of those rooms. So, looks like a good day for reading, playing board games, etc. Outside it's another dreary day. On a sunnier note, today is Zoe's Birthday Party Day! She will be SIX tomorrow, and you can only imagine how sad I am that I'm missing this very important day. Zoe is having a 'country' party, with lots of cowboy stuff and country music to dance by (where this came from I'm not sure, except that she likes the music I play in the car). She is SO excited. Hopefully we can join in some on the webcam. Steve is coming back to NYC on Tuesday. Ty and I are both really excited to see him and I'm especially looking forward to some adult conversation as well as some time away from the hospital alone. A big hello to Caroline & Kevin and Cindy & Russ, half-way around the world right now adopting their beautiful baby girls from China. Natalie & Ernest and Lisa & Jeff, you're almost there, too!! Please continue to pray for those transplanted within the last year (Clinton, Yasameen, Ty Sanders, Kailee, A.C., Nathan, Apryl, Erin, Devin, Taylor, Jordan, and of course, my Ty) Ann, notice Johnathan is OFF the list... he's one year post now... YAY!! Also, please continue to pray for all the FA families in all stages of this disease. Maria is home from Jacksonville now, but still receiving treatments for her second round of cancer...she could use your prayers and well-wishes especially. Love, hugs and kisses. We miss you all oodles. Love, Karen

Saturday, July 9, 2005 11:10 AM Day 17 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Counts: WBC 15.2 Hgb 9.1 (last transfused 6/29!) platelets 106 AWESOME! (last transfused 6/30!) ANC 12.7 Meds: vancomycin, meropenem = antibiotics ondansetron/zofran (CONTINUOUS), ativan (REGULARLY INFUSED) & vistaril (PRN) = anti-nausea/vomiting amphotericin B/Ambisome = antifungal tylenol, benadryl, methylprednisolone = pre-meds (PRN) fentanyl (PCA pump and continuous drip) = pain med (DECREASING) hydrocortisone cream = itchy rash (PRN) magic mouthwash = for mouth sore pain (PRN) phytonadione/Vit K = helps with clotting potassium acetate, magnesium sulfate, calcium gluconate = electrolyte replacements tacrolimus = prevent rejection erythromycin ointment = antibiotic for sty (BID) folic acid = B vitamin to make new cells, ensuring proper DNA replication (PO NOW) cyanocobalamin = vitamin B12 TPN & lipids = nutrition (CYCLING DOWN) nystatin swish and swallow = antifungal (BID) sodium bicarb swish and spit = oral care (TID) protonix/pantoprazole sodium = blocks stomach acid production G-CSF = stimulates cell growth (PRN ONLY BASED ON COUNTS) bactroban ointment for CVC insertion site redness ganciclovir = helps keep CMV at bay (M-F only, weekends off) Butt Paste = anal sores (PRN) Med Changes Change protonix to PO (by mouth). Discontinue ativan. Discontinue vancomycin. Continue decreasing fentanyl and TPN. Change ambisone to every other day. After getting showered and dressed at 5:00 A.M., Ty slept all morning again. He got up out of bed about 45 minutes ago to chat with Taiwan folks online, then sat in my lap awhile, and is now sitting up in a chair folding a paper airplane. He seems pretty sluggish and/or 'down' today. I counted about 7 sneezes throughout the wee hours of the morning. I hope he's not coming down with something. Also, he had an accident in bed. Not sure what's up with that, other than maybe he was so tired he slept through needing to go? Diarrhea is a little worse today. Only pain is anal "2" and only when he goes to the bathroom. No nausea, vomiting, fever. Nothing for breakfast, but he is drinking cranberry juice. He'll eat something for lunch I'm sure. More later if there is anything to post. Thanks for stopping in. We miss you and love you. Love, Karen

Friday, July 8, 2005 1PM UPDATE 9PM Ty's been sleeping since about 6:45, but was awake most of the day. He ate some dinner (YAY! half serving of rice and a few peas). We played one game of scrabble. He played Harry Potter xBox. I'm not at all sure I'm ready to have a pubertal boy, but here goes... he spent most of the day today asking me more questions along "those" lines (you might remember he and I had 'the talk' not long before we came to NY; then Daddy and he had 'the talk' a few days later). Well, ever since then, Ty hits me up with all his questions while being tucked in each night (well, to be fair, not just 'those' kinds of questions, but also about dying, about the long-term effects of chemo/radiation, and all sorts of heavy issues)... in an impressive effort (many times) to stall sleep-time. But today it was literally all day long. The questions ran the gamut from thoughtful to downright silly...but at least he's talking :) And I just want to say for all those moms out there who, like me, could never imagine even having a BOY....well, let me just say Ty is a cuddler. Much more so than my two girls even. He just likes to be held... since day one home with us he's been a lap-sitter. I was really concerned that touch would be a difficult obstacle for him to overcome, but it's been quite the opposite. I think he really missed that kind of touch in Taiwan. Well, g'night everyone! ******************************** ******************************** Day 16 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Counts: WBC 4.1 Hgb 9.1 (last transfused 6/29!) platelets 80 (last transfused 6/30!) ANC 1.9 Meds: vancomycin, amikacin, meropenem = antibiotics ondansetron/zofran, ativan & vistaril = anti-nausea/vomiting amphotericin B/Ambisome = antifungal tylenol, benadryl, methylprednisolone = pre-meds fentanyl (PCA pump and continuous drip) = pain med (DECREASING) hydrocortisone cream = itchy rash magic mouthwash = for mouth sore pain phytonadione/Vit K = helps with clotting potassium acetate, magnesium sulfate, calcium gluconate = electrolyte replacements tacrolimus = prevent rejection erythromycin ointment = antibiotic for sty folic acid = B vitamin to make new cells, ensuring proper DNA replication cyanocobalamin = vitamin B12 TPN & lipids = nutrition (CYCLING DOWN) nystatin swish and swallow = antifungal sodium bicarb swish and spit = added oral care Protonix/pantoprazole sodium = blocks stomach acid production G-CSF = stimulates cell growth (PRN ONLY BASED ON COUNTS) bactroban ointment for CVC insertion site redness ganciclovir = helps keep CMV at bay (M-F only, weekends off) Med Changes Continuing to decrease pain meds and TPN. Changing folic acid to PO (by mouth). Received G-CSF today. Discontinuing one of the antibiotics (amikacin) today. Begin "Butt Paste" (my kids would be mortified I said "butt" instead of "buns"... but that's actually the name of it!) for worsening anal sores (sorry if you're squeemish, but this is for our records, too). Ty is doing even better today. Throat pain is still a '2' (which is great since they continue to decrease the pain meds). There is also some lip sore pain '2' and bum sore pain '3'. Diarrhea is less watery (now mushy) and only twice so far today. No nausea, no vomiting, no fever. He's been awake all but about 1 hour since 5:30 this morning. So far this morning he's had about 8oz of apple juice plus water, and he's working on some cranberry juice now. He ate half an orange (not my choice with sores in the GI tract) for breakfast, and he just ate about 1/3 cup of pasta with marinara and veggies for lunch. Unbelievable! Last night Ty got to play his beloved BINGO over the phone with the Child Life Staff in the play room. And yes, he of course won another prize. Like Taylor we may have to consider renting a U-haul to get outta this place. So just now Dr. B said Ty is doing 'ok'. Very surprised I asked, "Not great?" He replied, "I don't like to jinx it! So I will just say he's doing ok " (big grin) :) More later if there's anything worth posting. Love to you all. We miss you oodles. A big hello to Caroline & Kevin and Cindy & Russ, half-way around the world right now adopting their beautiful baby girls from China. Natalie & Ernest and Lisa & Jeff, you're almost there, too!! Please continue to pray for those transplanted within the last year (Clinton, Yasameen, Ty Sanders, Kailee, A.C., Nathan, Apryl, Erin, Devin, Taylor, Jordan, and of course, my Ty) Ann, notice Johnathan is OFF the list... he's one year post now... YAY!! Also, please continue to pray for all the FA families in all stages of this disease. Maria is home from Jacksonville now, but still receiving treatments for her second round of cancer...she could use your prayers and well-wishes especially. Thank you. Love, Karen (& Ty)

Thursday, July 7, 2005 9 PM Day 15 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Counts: WBC 10.9 (got G-CSF since yesterday's counts) Hgb 9.7 (last transfused 6/29!) platelets 80 (last transfused 6/30!) ANC 9.0 (up from 5.5 yesterday) Meds: vancomycin, amikacin, meropenem = antibiotics ondansetron/zofran, ativan & vistaril = anti-nausea/vomiting amphotericin B/Ambisome = antifungal acyclovir = antiviral tylenol, benadryl, methylprednisolone = pre-meds fentanyl (PCA pump and continuous drip) = pain med hydrocortisone cream = itchy rash magic mouthwash = for mouth sore pain phytonadione/Vit K = helps with clotting potassium acetate, magnesium sulfate, calcium gluconate = electrolyte replacements tacrolimus = prevent rejection erythromycin ointment = antibiotic for sty folic acid = B vitamin to make new cells, ensuring proper DNA replication cyanocobalamin = vitamin B12 TPN & lipids = nutrition nystatin swish and swallow = antifungal sodium bicarb swish and spit = added oral care Protonix/pantoprazole sodium = blocks stomach acid production G-CSF as needed = stimulates cell growth bactroban ointment for CVC insertion site redness ganciclovir = helps keep CMV at bay Med Changes Decreasing pain med baseline and rescue Discontinuing acyclovir Cycling TPN Will begin discontinuing antibiotics in the next day or so Today Better, better, better. Ty was awake much of the day today. Even with decreased pain med, Ty was comfortable all day (throat pain is only at a '2'). No fevers, no nausea, no vomiting, less watery diarrhea. He ate half a banana for breakfast, and for lunch half a serving of rice and 1/3 serving of black beans! Nothing for dinner. He's drinking water and apple juice throughout the day. We're so proud of him! Ty started a 12-hour urine for creatine clearance at 5:30 tonight. Many of the drugs he's on and/or has been on are nephrotoxic, so they're just being vigilant. For all the folks who've emailed and asked what to expect from here on out: ~bone pain is common (from stem cells working so hard) ~more nausea and vomiting, esp since it's been so long without anything in the tummy, and Ty must begin taking meds by mouth in order to be discharged ~discharge is expected in another 10 days or so, if everything stays on schedule ~most kids are discharged here on TPN and ganciclovir (if CMV positive, like Ty) plus whatever oral meds he needs ~frequent blood monitoring, check-ups, G-CSF and transfusions as needed, bone marrow studies, etc. ~ganciclovir, while absolutely necessary, unfortunately has the adverse effects of lowering counts by immunosuppression... so we expect lower counts and continued need for G-CSF ~we must of course, remain ever vigilant about infection control and immediate ID of infections, graft rejection, and graft-vs-host disease ~FA kids, even though they're technically cured of the bone marrow failure and MDS, still are at an extremely high risk of certain cancers, so we must remain ever vigilant about prevention and early detection and treatment ~I'm sure I'm forgetting some things (maybe intentionally! :) Some very nice folks from Girard Studios have come around the last few days with a new art project which will grace the walls of the PDH (Pediatric Day Hospital where Dr. B works and we go to clinic everyday once we're discharged to RMH) for the next year or so. The project that's been hanging for the last year is multimedia, very dimensional wall plaques (the one that most sticks out in my mind is of a bridge painted on the right side, but coming literally right up off the plaque as it gets closer to the observer on the left side... hard to believe kids did these art projects!!) made by patients (and we noticed Dr. B's twin sons have projects hanging as well). This year Girard's is having kids do this: They have very large pieces of white craft paper, folded like a fan into about 4 large segments. Each child picks a topic and paints one panel. The paper is then folded so the next person can't see what was drawn, and that child is then directed to do the next step of the drawing. Then they unfold the whole piece, mount it dimensionally and voila! Ty was given the option to begin one with any topic. He chose to do the top panel with planets. Because Ty's in isolation and they can't bring the paper back in here once someone else works on their panel, Ty must totally complete his first (draw, paint, add 3D stuff, etc). Because it will be with Ty for so long anyways, they decided to have Ty do the bottom panel, too (the ocean). Two other children will be doing the 2 center panels. The volunteers showed us a small version they did. The topic was 'totem poles' and it turned out great. I can't wait to see the end result of this big project. Ty's doing a great job! Ty played X-box today and put together some Star Wars lego critters from A. Donna. I can't for the life of me figure out where the rest of the day went :) Hope you're all well. We miss you oodles. Thank you for your continued prayers, well-wishes, phone calls, emails, IMs, guestbook entries and visits. You all mean so much to us! Hugs to my ZoZe and CeCe! How do you suppose... Love, Mommy/Karen

Wednesday shmednesday July 6, 2005 10 PM Day 14 Post Transplant Arrived NYC 6/5/05 (ONE MONTH AGO) Admitted MSKCC 6/15/05 (THREE WEEKS AGO) Transplanted 6/22/05 (TWO WEEKS AGO) Counts: WBC 7.8 Hgb 9.7 (transfused 6/29) platelets 60 (transfused 6/30) ANC pending Meds: vancomycin, amikacin, meropenem = antibiotics ondansetron/zofran, ativan & vistaril = anti-nausea/vomiting amphotericin B/Ambisome = antifungal acyclovir = antiviral tylenol, benadryl, methylprednisolone = pre-meds fentanyl (PCA pump and continuous drip) = pain med hydrocortisone cream = itchy rash magic mouthwash = for mouth sore pain phytonadione/Vit K = helps with clotting potassium acetate, magnesium sulfate, calcium gluconate = electrolyte replacements tacrolimus = prevent rejection erythromycin ointment = antibiotic for sty folic acid = B vitamin to make new cells, ensuring proper DNA replication cyanocobalamin = vitamin B12 TPN & lipids = nutrition nystatin swish and swallow = antifungal sodium bicarb swish and spit = added oral care Protonix/pantoprazole sodium = blocks stomach acid production G-CSF as needed = stimulates cell growth bactroban ointment for CVC insertion site redness ganciclovir = helps keep CMV at bay Med Changes Decreasing pain med baseline and rescue Today Great day today. Ty's feeling better and better, sleeping less, less pain. Clowns visited today, as well as two Child Life Specialists who played with Ty (Risk and puzzle and magic stuff). To clear up any confusion about my journal yesterday, Ty does NOT have an active infection of CMV. He tested positive for it prior to tranplant, and since it can be deadly in immunocompromised kids, it is routine to start CMV-positive kids on ganciclovir to help prevent the CMV from rearing its ugly head (it remains in the body, even when not 'active'). Sorry for any confusion. We're hoping that today's booster of G-CSF will kick Ty's WBCs back up. Not much else to report today. Hope your day was great! ~Karen

Tuesday, July 5, 2005 8 PM Day 13 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Counts: WBC 22.1 Hgb 9.7 (transfused 6/29) platelets 63 (transfused 6/30) ANC 15.5 Meds: vancomycin, amikacin, meropenem = antibiotics ondansetron/zofran, ativan & vistaril = anti-nausea/vomiting amphotericin B/Ambisome = antifungal acyclovir = antiviral tylenol, benadryl, methylprednisolone = pre-meds fentanyl (PCA pump and continuous drip) = pain med hydrocortisone cream = itchy rash magic mouthwash = for mouth sore pain phytonadione/Vit K = helps with clotting potassium acetate, magnesium sulfate, calcium gluconate = electrolyte replacements tacrolimus = prevent rejection erythromycin ointment = antibiotic for sty folic acid = B vitamin to make new cells, ensuring proper DNA replication cyanocobalamin = vitamin B12 TPN & lipids = nutrition nystatin swish and swallow = antifungal sodium bicarb swish and spit = added oral care Protonix/pantoprazole sodium = blocks stomach acid production G-CSF stimulates cell growth (twice daily for 14 days) bactroban ointment for CVC insertion site redness Med Changes Dr. Boulad has stopped the G-CSF altogether. He plans to just give 'boosters' as needed. :) The team is starting Ty on ganciclovir to help keep CMV at bay (CMV is one of the many herpes viruses, like chicken pox, cold sores, etc.). Ty tested positive for a past infection of CMV prior to transplant...like other viruses, after the initial exposure, the virus may just lie dormant for years. The majority of people in this country have been exposed to CMV (and in a person with a healthy immune system, this usually presents no problem; however, in an immunocompromised patient, this could cause big problems). So, they will test twice weekly for the status of Ty's CMV and keep him on the ganciclovir for some time. Today marks the one month anniversary of our arrival in NYC. Ty continues to improve and we are so very thankful. He slept away most of the day. He's hitting the rescue button on the pain medicine dispenser (PCA) less and less. He even ate a few ounces of soup today. Wow! No nausea, no vomiting, less throat pain, less diarrhea. He's still running low BPs off and on (80s or 70s over 30s or 20s... although they can hear the diastolic all the way to 0). No fever yet today, but the night is still young (haha). We received 4 packages just now... it's going to be like Christmas in here again tomorrow morning when Ty awakens! I just wanted to take a moment to tell my husband how proud I am of you and how much I love you. You're doing it ALL at home... and doing it superbly! As much as I miss the girls, I know they're in great hands with you (and Anita, Mom and Donna). Please give them some extra loving from me... I'm missing them terribly. And then Taylor was D/Cd to RMH today. We couldn't be happier for him and his family, but it was sad to see them go (I really got choked up for purely selfish reasons). I'll miss chatting with Jeanne out in the halls, that's for sure! We'll see ya'll in a couple weeks. Please remember all the FA children and adults in all stages of this disease. ~ me

Monday, July 4, 2005 11:50 PM Day 12 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Counts: WBC 13.6 Hgb 9.3 (transfused 6/29) platelets 48 (transfused 6/30) ANC 9.9 Meds: vancomycin, amikacin, meropenem = antibiotics ondansetron/zofran, ativan & vistaril = anti-nausea/vomiting amphotericin B/Ambisome = antifungal acyclovir = antiviral tylenol, benadryl, methylprednisolone = pre-meds fentanyl (PCA pump and continuous drip) = pain med hydrocortisone cream = itchy rash magic mouthwash = for mouth sore pain phytonadione/Vit K = helps with clotting potassium acetate, magnesium sulfate, calcium gluconate = electrolyte replacements tacrolimus = prevent rejection erythromycin ointment = antibiotic for sty folic acid = B vitamin to make new cells, ensuring proper DNA replication cyanocobalamin = vitamin B12 TPN & lipids = nutrition nystatin swish and swallow = antifungal sodium bicarb swish and spit = added oral care Protonix/pantoprazole sodium = blocks stomach acid production G-CSF stimulates cell growth (twice daily for 14 days) bactroban ointment for CVC insertion site redness Today was an even better day yet! Ty's numbers continue to improve...even his platelets, which I understand are the last to 'come in' (unless someone told me an incorrect value yesterdsay or today...I'll have to doublecheck). Ty did get another fever today, so blood cultures were drawn and they will not be able to discontinue any of the antibiotics tomorrow as hoped. As you can see, Ty's WBCs are soaring! This is b/c of engraftment PLUS the help of G-CSF...so the dose of G-CSF has been reduced, but apparently will continue for a full 14 days from start-date. Ty continues to have low BPs off and on, so they're watching that carefully. Even though Ty's still rating his pain about the same over the last few days ("3 or 4"), he's using less pain medicine, which means a lower dose is managing well. No nausea, no vomiting, no pain other than throat pain, less sticky mucus (less sticky and less volume), less diarrhea. He's still taking no more than a few sips of water and his liquid tylenol by mouth each day, but that will improve as he feels better, has less pain, and taste returns. I hope you all had a fabulous and safe 4th of July. I watched NYC (Macy's) fireworks on TV tonight, and they were awesome (of course!)... I always compare fireworks to Disney's...and NYC actually won this one :) Mema stayed with Ty again today so I could get out for some fresh air. Ty and I have both loved having her here with us. We'll really be sad to say goodbye tomorrow morning. Please give my girls some extra loving from me. ~ Karen

Sunday, July 3, 2005 8 PM Day 11 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Counts: WBC 5.3 Hgb 9.2 (transfused 6/29) platelets 41 (transfused 6/30) ANC 3 Today: Doing the stem cell HAPPY dance AGAIN... we're engrafting! Meds: vancomycin, amikacin, meropenem = antibiotics ondansetron/zofran, ativan & vistaril = anti-nausea/vomiting amphotericin B/Ambisome = antifungal acyclovir = antiviral tylenol, benadryl, methylprednisolone = pre-meds fentanyl (PCA pump and continuous drip) = pain med hydrocortisone cream = itchy rash magic mouthwash = for mouth sore pain phytonadione/Vit K = helps with clotting potassium acetate, magnesium sulfate, calcium gluconate = electrolyte replacements tacrolimus = prevent rejection erythromycin ointment = antibiotic for sty folic acid = B vitamin to make new cells, ensuring proper DNA replication cyanocobalamin = vitamin B12 TPN & lipids = nutrition nystatin swish and swallow = antifungal sodium bicarb swish and spit = added oral care Protonix/pantoprazole sodium = blocks stomach acid production G-CSF stimulates cell growth (twice daily for 14 days) bactroban ointment for CVC insertion site redness Today was a better day. Ty slept the morning away again, but he was awake all afternoon and just now went to bed at 7:30. He had no nausea, no vomiting, less diarrhea, no fever, and the only pain he's really complaining about right now is the throat pain. At Grand Rounds today we were told not to be surprised if tomorrow's WBCs were 10 (10,000)... and that they may start tapering down on the G-CSF. (We've never seen a WBC even in the 3s in all of Ty's medical records from Taiwan.) This is good. Very, very good :) Also, if Ty can remain fever-free for a couple days, they will start removing some of the antibiotics. Yay! Ty managed to get down a couple small spoons of very mashed up bananas today. First food in days. I got out for a couple hours this afternoon while Mom was here with Ty. I found a bookstore (YAY! I've already been through about 5 books since Ty was admitted... as he's sleeping so much during the day) Not much else to report today (that's great, huh?!). Everyone seems happy with Ty's progress, so we're happy too. My girls are out celebrating July 4th. I miss them oodles, but they're coming to visit in August. YAY!! Steve's coming up by himself in a week or so for a few days. Mom's here until Tuesday morning. Culys are coming this summer sometime, too. Happy Independence Day everyone! ~ Karen

Saturday, July 2, 2005 11 AM Day 10 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Counts: WBC 2.4 AWESOME! Hgb 10.4 (transfused 6/29) platelets 64 (transfused 6/30) ANC 0 Today: Doing the stem cell HAPPY dance ... we're DEFINITELY engrafting! More later... just couldn't wait to share the good news! Update: More of the same today as the last few days. Fevers, low BPs, pain. Beginning this morning Ty was also having hallucinations. They continued, off and on, through this evening, and so the team changed his pain med from morphine to fentanyl tonight. Unfortunately, the morphine was off for about 1 hour while awaiting the fentanyl from the pharmacy, so Ty had a lot of catch-up to do to get comfortable again. He just nodded off. Ty was awake most of the day today except for about 3 hours this morning. He made an origami swan, an origami star, and he colored in his Star Wars coloring book. We also played Mexican Train Dominoes... it was fun! (Well, we didn't exactly play by the rules... none of us had ever heard of it nor seen it played, and it was just too late in the day to figure out the rules past about Number 3. So, we made it up as we went. I'll have to re-read the rules when I'm more awake (grin). We also played Connect Four and Harry Potter Uno. Ty also played HP xBox and watched a Beethoven (the dog) movie. Busy, busy. With all the sleeping Ty's been doing, I've already been through all 4 Jodi Picoult books I brought to NY! I'll be finding a book store tomorrow (while Mom's still in town to stay with Ty). I'm so glad Mom's here. She's great company for me, and Ty really loves having her here. Also, it's really nice to get out in the fresh air once in awhile. (Mom wouldn't mind if I went all day if I wanted to, I just prefer to stay near Ty...) Hope you're all doing well. My girls are having a sleep-over at Miss Carrie's and Emily's tonight... they're in seventh Heaven, I'm sure. Thank you Carrie! XoXoXoXoXoXoXoXoXoXo Karen

Friday, July 1, 2005 10PM Day 9 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Counts: WBC 0.3 WE'RE ON OUR WAY!! Hgb 9.7 (transfused 6/29) platelets 73 (transfused 6/30) ANC 0 Today: Doing the stem cell HAPPY dance ... we're engrafting! Meds: vancomycin, amikacin, meropenem = antibiotics ondansetron/zofran, ativan & vistaril = anti-nausea/vomiting amphotericin B/Ambisome = antifungal acyclovir = antiviral tylenol, benadryl, methylprednisolone = pre-meds morphine (PCA pump and continuous drip) = pain med hydrocortisone cream = itchy rash magic mouthwash = for mouth sore pain phytonadione/Vit K = helps with clotting potassium acetate, magnesium sulfate, calcium gluconate = electrolyte replacements tacrolimus = prevent rejection erythromycin ointment = antibiotic for sty folic acid = B vitamin to make new cells, ensuring proper DNA replication cyanocobalamin = vitamin B12 TPN & lipids = nutrition nystatin swish and swallow = antifungal sodium bicarb swish and spit = added oral care Protonix/pantoprazole sodium = blocks stomach acid production G-CSF stimulates cell growth (twice daily for 14 days) Changes: Continuing to increase the morphine for better pain management Bactroban ointment for CVC insertion site redness. Today: Continued diarrhea (not growing anything in cultures). Continued fevers throughout the day. Continued pain, but well controlled with increased morphine most of today. Vomiting (only once, mostly blood-tinged mucus-like stuff). No nausea today. Increasing sticky mucus in GI tract (mouth, esophagus, etc). Sores clear through the entire GI tract now. Ty slept half the day away. Not much else to report today... pretty much the same as yesterday. In fact, my days are all starting to run together. Dr. Boulad did say that today's increase in WBC from 0.1 yesterday, to 0.3 today is a VERY good sign. He said if he checked it again this evening, it would already be up around 1.1! I want to add how extremely PROUD we are of Ty. It is amazing what he's been through, and yet he rarely complains about anything. More often than not we can coax a smile out of him, and most days we get glimpses of the silly Ty we all know and love. He almost always has a magic trick or a scary/funny thing to do to the nurses and Dr. Boulad. They all are excited with anticipation when they finally get to our room during Grand Rounds each day, wondering what's in store for them. The best one yet is the very realistic fake tongue he uses, along with a 'bloody' paper towel to scare the dickens out of any new nurses that take him on (thanks Aunt Donna!). And about the hair loss... while this was the most concerning thing to Ty during the months leading up to transplant, it turns out to have been no issue what-so-ever. Ty really is the cutest thing with no hair (maybe in part because he is so 'tan' looking that he still looks very healthy bald). He said he might even keep it bald (only SMOOTHER once razors are allowed). While Ty is still asking some really hard questions, he's also starting to really talk more openly about the future... he wants to hold our kitty Brianna again; he wants to get a turtle; he's looking forward to his and my trip to Australia and Taiwan once cleared for travel in a year or so; he wants Nathan to come up to NYC; he wants his sisters to visit (not STAY, mind you, just visit); he wants to get home and cook; he wants to go back to Camp Sunshine in 2006; he wants to go back to school and see his friends. Happy Mommy :) Thanks to everyone for checking in on Ty. We so appreciate all the well-wishes and prayers. Missing my girls terribly... Love, Karen/Mommy

Thursday, June 30, 2005 11:45PM Day 8 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Counts: WBC 0.1 Hgb 9.9 (transfused 6/29) platelets 54 (transfused 6/28) ANC 0 Today: Doing the stem cell dance (while awaiting engraftment) Meds: vancomycin, amikacin, meropenem = antibiotics ondansetron/zofran, ativan & vistaril = anti-nausea/vomiting amphotericin B/Ambisome = antifungal acyclovir = antiviral tylenol, benadryl, methylprednisolone = pre-meds morphine (PCA pump and continuous drip) = pain med hydrocortisone cream = itchy rash magic mouthwash = for mouth sore pain phytonadione/Vit K = helps with clotting potassium acetate, magnesium sulfate, calcium gluconate = electrolyte replacements tacrolimus = prevent rejection erythromycin ointment = antibiotic for sty folic acid = B vitamin to make new cells, ensuring proper DNA replication cyanocobalamin = vitamin B12 TPN & lipids = nutrition nystatin swish and swallow = antifungal sodium bicarb swish and spit = added oral care Protonix/pantoprazole sodium = blocks stomach acid production G-CSF stimulates cell growth (twice daily for 14 days) Changes: Continuing to increase the morphine for better pain management Today: Platelet transfusion (b/c of blood in vomit). Continued diarrhea (not growing anything in cultures). Continued low blood pressure (80s over 30s) off and on, particularly at night. Continued hives off and on. Continued fevers throughout the day. Continued pain, but well controlled with increased morphine most of today (rated at about a 3 most of the day on a scale of 1-10, versus a 7 or 8 yesterday). Continued mucus, worse in throat today... Ty was a bit panicky this morning, stating he felt like something big was caught in his throat. He promptly vomited, then we got a hot pack for his neck and eventually felt much better. Minimal nausea today (YAY!) We had a good time with Mema again today. And with her here, and no big problems this morning with Ty, I took off for a couple hours. Just getting outside in the fresh air and walking did a world of good for my spirits. It was like Christmas around here today (thanks Penne!!). Ty made 3 fancy paper airplanes, gave one to Taylor, and has been flying the other two all over the room. Ty also won at Bingo again today. This time he chose an entire box of baseball cards as his prize. At the moment we're not allowed to drink the tap water in NYC (apparently there was some rain overflow, which adversely affected the drinking supply). Man am I thirsty! Well, the two docs on tonight along with our nurse, Cheryl, are coming into the room every hour now to double check Ty's vitals. The Fellow (doc in charge) said that this is the most critical time of recovery, so they would be extremely careful, checking Ty frequently while he's experiencing low BPs (I presume they're mostly concerned about septic shock with the low blood pressure, fever, etc. Ty's not gonna get much sleep tonight, I'm afraid. Well, that's about there is to report. Thank you for your continued prayers and well wishes. Love, Karen

Wednesday, June 29, 2005 10 PM Day 7 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Counts: WBC 0 Hgb 8.1 (transfused 6/27) platelets 99 (transfused 6/28) ANC 0 Today: Doing the stem cell dance (while awaiting engraftment) Meds: vancomycin, amikacin, meropenem = antibiotics ondansetron/zofran, ativan & vistaril = anti-nausea/vomiting caspofungin = antifungal acyclovir = antiviral tylenol, benadryl, methylprednisolone = pre-meds morphine (PCA pump and continuous drip) = pain med hydrocortisone cream = itchy rash magic mouthwash = for mouth sore pain phytonadione/Vit K = helps with clotting potassium acetate, magnesium sulfate, calcium gluconate = electrolyte replacements tacrolimus = prevent rejection erythromycin ointment = antibiotic for sty folic acid = B vitamin to make new cells, ensuring proper DNA replication cyanocobalamin = vitamin B12 TPN & lipids = nutrition nystatin swish and swallow = antifungal sodium bicarb swish and spit = added oral care Protonix/pantoprazole sodium = blocks stomach acid production G-CSF stimulates cell growth (twice daily for 14 days) Changes: Continuing to increase morphine in an effort to keep up with increasing pain. D/C caspofungin, replace with amphotericin B/Ambisome (continued fever and diarrhea, so changing to this antifungal... and yesterdays' switch of antibiotics... in case fungal or bacterial infection NOT covered by previous antifungal/antibiotic causing symptoms. No results back yet from most recent blood- and stool-cultures. Today: PRBC transfusion. (It's very common to need lots of PRBCs and platelets still at this stage of the transplant, plus high fevers eat up PRBCs, so while one transfusion lasted a full week, this last one lasted only two days; platelets are lasting between 3-4 days.) Fevers, hives, diarrhea, increasing pain, increasing sticky mucus in throat/mouth continue. Dr. B said only a few more days of feeling really, really badly before things start to look up. Still, though, most of the day Ty was up and at'em (YAY!). Little nausea today (double YAY!!) Mema was here with us today. She's feeling absolutely fine (thank goodness it seemed to just be the heat or exhaustion or something that made her tummy upset yesterday). After Mema left tonight, Ty decided to pull most of the rest of his hair out. Then I borrowed the Unit's hair clippers and shaved the rest of it. Ty looks AWESOME as a baldy. Even HE likes it. I told him I'd like to see him keep it this way even after all this, and he actually said "maybe"! It seems like I'm forgetting something. I'll try to post whatever it is later. I really want to post some pictures of Ty, but I need his permission first, so I'll have to wait until tomorrow. Thanks to everyone. You've been awesome! It'd be so difficult without YOU, your prayers and your kind words and thoughts. Thank you. ~Karen

Tuesday, June 28, 2005 9PM Day 6 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Counts: WBC 0 Hgb 9.3 (transfused 6/27) platelets 19 (transfused 6/24) ANC 0 Today: Doing the stem cell dance (while awaiting engraftment) Meds: vancomycin, amikacin, ciprofloxacin = antibiotics ondansetron/zofran, ativan & vistaril = anti-nausea/vomiting caspofungin = antifungal acyclovir = antiviral tylenol, benadryl, methylprednisolone = pre-meds morphine (PCA pump and continuous drip) = pain med hydrocortisone cream = itchy rash magic mouthwash = for mouth sore pain phytonadione/Vit K = helps with clotting potassium acetate, magnesium sulfate, calcium gluconate = electrolyte replacements tacrolimus = prevent rejection erythromycin ointment = antibiotic for sty folic acid = B vitamin to make new cells, ensuring proper DNA replication cyanocobalamin = vitamin B12 TPN & lipids = nutrition nystatin swish and swallow = antifungal sodium bicarb swish and spit = added oral care Protonix/pantoprazole sodium = blocks stomach acid production Changes: Continuing to increase morphine in an effort to keep up with increasing pain. Due to fever, discontinuing one antibiotic, ciprofloxacin and starting another, meropenem (still on a total of 3 antibiotics). Tomorrow: Tomorrow we will begin G-CSF via his CVC, twice daily for 14 days. Today: Ty's been having significantly more pain today ... going from a rating of "3" most previous days, to "7" today. The worst pain is in his abdomen, but it hurts from his throat down (surprisingly, not so much in his mouth). The staff is great about staying on top of the pain with pain meds. Ty also had quite a bit of nausea this morning, again relieved with ativan and vistoril. No vomiting. Diarrhea is back full force. They're culturing it again. Fevers are back since last night. They did blood cultures last night (I believe) and are doing more tonight (temp is 39.3 now). Ty's now using suction to help with the sticky, sticky secretions in his mouth. His hair continues to thin....no real bald areas yet, but it's coming. He received platelets this morning. My mom, Mema, arrived today. Yippee! :) Unfortunately, she felt a little under the weather this afternoon, so she headed over to RMH to get some rest and get cooled off. Hopefully it's nothing more than from the heat (we have to wear masks, gloves and gowns over all our clothing here in Ty's hospital room, so it is very warm), or something she ate. My mom, who HATES to fly, flew up here. I'm so proud of her, and thankful she came! Gee, could it be the stress of flying that did it to her?? Mema came bearing all sorts of beautiful, thoughtful artwork from my two girls at home. I've plastered the colorful papers all over our walls. Zoe and CeCe, you made Mommy and Ty feel SO SPECIAL. Thank you. I love you oodles and miss you poodles. I'm so happy that you call me on the computer webcam everyday. I love seeing you and talking with you and reading to you. I love listening to your bedtime prayers and your "How do you suppose?"s. I love passing winks back and forth, esp the kiss one. I love you. No YOU. NO YOU! :) Thanks for checking on us. We appreciate and miss all of you! Love, Karen For those interested in knowing why we added password security to this website, it's because I want to be able to write anything I fancy (even venting when I need to) and not feel responsible for someone's hurt feelings at MSKCC. (I was paid a visit by a 'patient rep' today, telling me that "staff reads your website"... yet she didn't address any of the concerns I'd posted about (the nurse problem we had one day, and the dirty family bathroom issue). It's easier to just block their access than to edit my thoughts and feelings.

Monday, June 27, 2005 3PM ***11PM UPDATE: Ty's had increasing nausea throughout the afternoon/evening, and his diarrhea has returned. Poor guy. Day 5 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Counts: WBC 0 Hgb 7.9 (transfused 6/20) platelets 28 (transfused 6/24) ANC 0 Today: Doing the stem cell dance (while awaiting engraftment) Meds: vancomycin, amikacin, ciprofloxacin = antibiotics ondansetron/zofran, ativan & vistaril = anti-nausea/vomiting caspofungin = antifungal acyclovir = antiviral tylenol, benadryl, methylprednisolone = pre-meds morphine (PCA pump and continuous drip) = pain med hydrocortisone cream = itchy rash magic mouthwash = for mouth sore pain phytonadione/Vit K = helps with clotting potassium acetate, magnesium sulfate, calcium gluconate = electrolyte replacements tacrolimus = prevent rejection erythromycin ointment = antibiotic for sty folic acid = B vitamin to make new cells, ensuring proper DNA replication cyanocobalamin = vitamin B12 TPN = nutrition nystatin swish and swallow = antifungal sodium bicarb swish and spit = added oral care Changes: Continuing to increase morphine drip and PCA for increasing pain. Adding Protonix/pantoprazole sodium which helps block the production of stomach acid (which is excruciating when your entire GI tract has sores from chemo/radiation/low WBCs). Still, the only med taken by mouth is tylenol. Today: Pretty much the same. Some nausea this morning, quickly relieved with more ativan. Increasing pain, quickly relieved with more morphine. Eating is more diminished due to pain and nausea. PRBCs going in now. Another Martial Arts guy came in today to work with Ty. Last week it was Misha. Maybe next week I'll find out this guy's name (haha). He was very good, and although Ty was reluctant at first, he really got into it and with the 'power breathing' and physical punching and yelling, he felt much better (less pain) afterwards :) There was someone doing the same thing with the little boy next door, so Ty and he were then trying to out-yell each other :) Tonight is Bingo. Ty is very excited at the prospect of winning another prize. Well, gamblers, pay up! Looks like Aunt Missy won the bet on when Ty's hair would first fall out in clumps (come to find out, she actually knew nothing of the bet, but our mom had picked the day out for her... the two of them will have to sort out what to do with all that moolah! Ty's hair has actually been falling out since the 20th... but I've just been brushing it off his pillow. This morning he was grabbing clumps and yanking it right out. Surprisingly (to me), the hair is actually a whole inch longer than what you see on the outside. (I never really pictured it being much more than about a quarter inch... likewhen you pull out a piece of your own hair and you see the 'root' on the 'end'. Hmmm. (Ty's fine with it so far... we were even taking pictures earlier. Our nurse, Nikki, said they have clippers in the unit when we're ready for those.) On MWFs all of Ty's lines get changed. If you take a look at all the meds he's on, you can imagine what an undertaking that really is! He also gets the dressing changed on his CVC a few times a week. His site looks pretty good. The sutures pull a bit as the lines get moved around, so now we're pinning his lines to his clothes to give his sewn-up skin a rest. Hopefully we'll remember to unpin them before he removes his shirt. Also, they've switched dressings to a less-irritating one, so the inflamed skin there can start to heal as well. We heard that Taylor will likely be discharged in another 10 days or so... around day 28. So that's our benchmark, apparently. (We're on day 5 right now... so maybe 3 more weeks inpatient :) Please remember all the FA families in your prayers. We are so thankful that things are progressing as expected with no surprises and that Ty's pain and nausea are being managed well. We're also thankful for all of YOU. ~ Karen

Sunday, June 26, 2005 10PM Day 4 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Counts: WBC 0 Hgb 8.4 (transfused 6/20) platelets 43 (transfused 6/24) ANC 0 Today: Doing the stem cell dance (while awaiting engraftment) Meds: vancomycin, amikacin, ciprofloxacin = antibiotics ondansetron/zofran, ativan & vistaril = anti-nausea/vomiting caspofungin = antifungal acyclovir = antiviral tylenol, benadryl, methylprednisolone = pre-meds morphine (PCA pump and continuous drip) = pain med hydrocortisone cream = itchy rash Magic Mouthwash = for mouth sore pain phytonadione/Vit K = helps with clotting potassium acetate, magnesium sulfate, calcium gluconate = additives tacrolimus = prevent rejection erythromycin ointment = antibiotic for sty folic acid = B vitamin to make new cells, ensuring proper DNA replication cyanocobalamin = vitamin B12 TPN Changes: adding Nystatin swish and swallow adding sodium bicarbonate swish and spit Today: We had a pretty good night. Few IV machine beeps. YAY! Everything is pretty much the same (and nothing unexpected). More pain, less nausea, no vomiting, less diarrhea, no fevers, appetite fair, sleeping the days away (which we're thankful for... it's what his body needs, apparently). We still haven't quite figured out why his sheets are DRENCHED every night/morning. he's getting so many fluids I suppose it could be urine, but there is a definite 'chemo smell' to his urine, and that smell's not on the sheets, nor any color. It's possible it could be IV fluid leaking, but why would it only be at night. So, it's most likely sweat, it's just weird that it could be SO MUCH, and only on the lower half of his body. Weird. We're really looking forward to Mema (my mom) arriving Tuesday. She's actually flying up here, although she hates to fly. Thanks, Mom! More tomorrow. Please remember all the FA kids in your prayers. So many are in transplant now (at other facilities). Taylor is doing great here at MSKCC. We're hoping to hear some discharge plans in the near future for him. Ty has at least a couple more weeks here in the hospital before he'll be released. Thanks for checking in on us and for your many kind words, thoughts and prayers. Very best wishes to our FAC group families who've recently received referrals and are headed to China to pick up their little girls. I'm so excited for you, remembering fully and relishing the emotions associated with going to get my three :) Love, hugs and kisses to my family and friends. ~Karen

Saturday, June 25, 2005 11PM Day 3 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Counts: WBC 0.1 Hgb 8.4 (transfused 6/20) platelets 68 (transfused 6/24) ANC 0 Today: Doing the stem cell dance (while awaiting engraftment) Meds: vancomycin, amikacin, ciprofloxacin = antibiotics ondansetron/zofran, ativan & vistaril = anti-nausea/vomiting caspofungin = antifungal acyclovir = antiviral tylenol, benadryl, methylprednisolone = pre-meds morphine (PCA pump and continuous drip) = pain med hydrocortisone cream = itchy rash Magic Mouthwash = for mouth sore pain phytonadione/Vit K = helps with clotting potassium acetate, magnesium sulfate, calcium gluconate = additives tacrolimus = prevent rejection erythromycin ointment = antibiotic for sty folic acid = B vitamin to make new cells, ensuring proper DNA replication cyanocobalamin = vitamin B12 Changes: TPN (Total Parenteral Nutrition) added Today: Nothing too different today. Day started out with nausea and pain... meds got that under control and Ty slept the day away again. No fever. Diarrhea still, but improved over yesterday. Ate pretty well today (2 oranges, orange juice... neither of which I'd be eating if I had sores throughout my entire GI tract... plus broccoli and spaghetti with marinara), but increasing pain from the sores in his gut and esophagus. Besides the GI sores/pain, chemo knocks out the taste buds pretty well, which further diminishes the desire to eat. Most kids are on TPN for quite a long while as I understand it. Aunt Donna left today. Ty and I are both really sad about that. But we're now looking forward to Mema (my mom) coming up next week for a visit. Please continue to include all the FA families in your prayers... FA is horrible to deal with, whether in the 'early stages' with the anticipation of what's to come, or in the more advanced stages of bone marrow failure/MDS/cancer/transfusion-dependency, or in the transplant stage with risk of GVHD, rejection, and infection (and still facing cancer, as the high risk of cancer does not diminish after transplant), or saying goodbye to a child when that time comes. We feel so fortunate and grateful to be right where we are (literally here at MSKCC, plus where we are in Ty's life, plus where we are in life, period). We appreciate the continued support... this would be so much harder without all of you. ~ Karen

Friday, June 24, 2005 11 PM Day 2 Post Transplant Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Counts: WBC 0.0 Hgb 9.2 (was transfused Monday) platelets 19 (was transfused Tuesday) ANC 0 Today: Doing the stem cell dance (while awaiting engraftment) Platelet transfusion Meds: vancomycin, amikacin, ciprofloxacin = antibiotics ondansetron/zofran, ativan & vistaril = anti-nausea/vomiting caspofungin = antifungal acyclovir = antiviral tylenol, benadryl, methylprednisolone = pre-meds morphine (PCA pump and continuous drip) = pain med hydrocortisone cream = itchy rash Magic Mouthwash = for mouth sore pain phytonadione/Vit K = helps with clotting potassium acetate, magnesium sulfate, calcium gluconate = additives tacrolimus = prevent rejection erythromycin ointment = antibiotic for sty folic acid = B vitamin to make new cells, ensuring proper DNA replication cyanocobalamin = vitamin B12 Changes: Increasing morphine for better pain management Increasing nausea meds for better management Starting TPN (Total Parenteral Nutrition... or nutrition via his central line) tomorrow Ty had a good day today (after a decent night and a not-so-good morning...nausea and pain). He slept away a good part of the day again, which is great... just what his body needs most right now. Ty also is experiencing discomfort in his hands and tonight in his leg. Best I can figure is maybe cramps. I asked his nurse about his electrolytes this moring. She said they were normal, but that she'd draw tonight's electrolytes early to see if maybe anything's changed (causing the cramps). We had a surprise visit today by US Olympic bobsledder, Chris Soule. What a treat! He and Ty had a photo taken together. Chris came bearing all sorts of goodies too... bobble-head bobsledders, photo album, poster, and his autograph. He won 7th in 2002, and he's going for GOLD in 2006. Also today a volunteer named Sarah came to play games with Ty/us. She's sweet, and it's really nice seeing different faces every now and again in here, ESPECIALLY for Ty, who isn't allowed to leave the confines of his hospital room :) This is a good time to mention how great the Child Life Specialists here are. To say they're awesome is an understatement. They know EVERY child's name. They come around everyday with calendars of what fun things are scheduled (of course, we can't participate unless we can do it from our room). They come around delivering movies of Ty's choice. The volunteers offer to come to the rooms of patients who are in isolation to play, talk, read, whatever... They come by just to say hi and see if we need/want anything {apparently they think we're joking when we ask them to get someone to clean the 'family restrooms' in the hall...haha. We've been in this room since the 15th...there are only 2 bathrooms on the unit for non-patients.... there are maybe 30 patient rooms... (ok, you do the math... at least one adult per room showering everyday in the one shower... and at least 5 bathroom trips per parent each day to the two potties... AND THE BATHROOM FLOORS HAVE ONLY BEEN CLEANED ONCE SINCE WE ARRIVED! This is surprising considering how they're really sticklers for cleanliness here in some ways.} It's interesting. The day nurses glove, mask and gown each and everytime they enter the room. The two night nurses we've had most often only put on masks. No consistency. Oh, and Ty played Bingo again yesterday and won another cool prize (we dial in from the bedside phone to the playroom to play... thanks to Taylor's mom getting the details all worked out for us isolation families :) My days are running together, so if I already mentioned this before, please forgive: we also had a visit this week from an awesome guitar-playing musician. He sang beautifully and even made up a really funny Star Wars song on the spot. And we were visited this week by a martial arts guy who worked with Ty, teaching him breathing techniques and other ways of getting out the darkness associated with pain, fright, etc. Awesome folks here. Apparently Ty will begin G-CSF on day 7. This will help stimulate white cell production. Dr. B finished up clinic this week and will begin his 3 week rotation here in the unit on Monday. We're looking forward to seeing him regularly again (although Dr. Small, along with the rest of the team, has taken great care of us). I bumped into Heidi (Dr. B's ARNP) in the hall today and got some questions answered... namely about discharge requirements: ~Ty must be fever-free for a few days ~engraftment (ANC above 1000 for a few days without, or with at least diminished need for G-CSF) ~taking all meds orally (the only med Ty takes orally right now is liquid tylenol) ~pain manageable without morphine (they will give him other pain meds) Well, 'nuff said for tonight. Overall things are better at this point than I imagined, and right on course for everything from the docs' perspectives. My sister, "Aunt Donna", spent another day playing scrabble, uno, and rummy here in the hospital room wtih us. I can't believe her week here is nearly up already. She'll be heading home tomorrow. It'll be hard to say goodbye to her. Please continue to send us letters/cards, emails, guestbook entries, etc. We may not respond any time soon, but we read each and every one of them. Your kind words, well-wishes and prayers are all so very much appreciated, and give us something to look forward to every day. Please remember us in your prayers, along with all FA families in all stages of this disease. If you happen to see my girls, please give them extra smooches and huggies from me and Ty. Love, Karen

Thursday, June 23, 2005 11 PM Day Plus 1 (I can't get the plus to work on this website) Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Counts: WBC 0 Hgb 9.0 (was transfused Monday) platelets 42K (was transfused Tuesday) ANC 0 Today: Doing the stem cell dance Meds: vancomycin, amikacin, ciprofloxacin = antibiotics ondansetron/zofran, ativan & vistoril = anti-nausea/vomiting caspofungin = antifungal acyclovir = antiviral tylenol, benadryl, methylprednisolone = pre-meds morphine (PCA pump and continuous drip) = pain med hydrocortisone cream = itchy rash Magic Mouthwash = for mouth sore pain phytonadione/Vit K = helps with clotting potassium acetate, magnesium sulfate, calcium gluconate = additives Tacrolima = prevent rejection erythromycin ointment = antibiotic for sty probably others I'm forgetting just now... and on yesterday's journal I mistyped "Vancomycin for nausea" when what I meant was "Vistoril"... thank you for catching that, Leigh! Med Changes: None I know of. Today Today started out rough with more pain and nausea (again). Things were eventually relieved with meds. Ty again slept a good bit of the day away, and is snoozing now, too. He vomited only a couple times today. No temps. Little diarrhea. More mucus in his mouth. Mouth sores ok. Ty was grouchy much of the time he was awake today (very unlike him), but I know we'll see some of his silliness back before long. Ami (Ah MEE) was our nurse again today. She's awesome! Dr. B stopped in today. He's sick, so he didn't come into the room (and that's why he didn't come to the unit at all yesterday). He told us Ty received 14 million stem cells, with very few T-cells. As a reference point, they like to get 5 to 10 million stem cells when doing PBSC transplants like Ty had. Our donor was even more generous with his stem cells than we could have hoped :) Donna and I played Scrabble much of the time Ty was sleeping. We played lots of fun ways (just to mix it up a bit). We played where we could only spell things 'phonetically'. We played where you had to be able to sing your word in a real song. We played where anything went... abbreviations, proper nouns, slang, etc. And we played by the rules. It was lots of fun and helped pass the time. I can't remember the last time Donna and I had this much uninterrupted time together (oh wait, yes I do... it was before either of us had children!) That's been the nicest part of her stay for me... the time together :) This evening around dinner time Ty played Jenga and Harry Potter Uno with a volunteer named Molly (in his room, of course). As it turns out, Molly is Dr. Small's 16-y-o daughter who's been a volunteer at this hospital for three years. Ty tried to con Molly by telling her that he didn't have to draw a new card in Uno if he couldn't play what was on the table... "cheater cheater punkin' eater" :) Ty ate a banana, a few crackers, some noodles with marinara, and a couple sips of juice today. No mention of TPN yet (nutrition-in-a-bag that would be run through his central line). He's had a lot of swelling off and on... so it's hard to know exactly what his weight is doing. I'm not sure what the determining factor is, but we understand that most transplant kids on this unit get TPN on about day 2 or 3. I think that's about it. Thank you all for your continued prayers and well wishes. We both feel so fortunate to have so many folks cheering us on and encouraging us each step of the way. ~ Karen

Wednesday, June 22, 2005 11PM Day 0 TRANSPLANT DAY! Arrived NYC 6/5/05 Admitted MSKCC 6/15/05 Transplanted 6/22/05 Counts: WBC 0 Hgb 10.3 (was transfused Monday) platelets 63K (was transfused Tuesday) ANC 0 Today: Unrelated Peripheral Blood Stem Cell Transplant (donor is a 28-year-old young man) Meds: vancomycin, amikacin, ciprofloxacin = antibiotics ondansetron/zofran, ativan & vistoril = anti-nausea/vomiting caspofungin = antifungal acyclovir = antiviral tylenol, benadryl, methylprednisolone = pre-meds morphine (switched to PCA pump...Ty pushes the button to dispense when he needs it for pain) hydrocortisone cream = itchy rash Magic Mouthwash = for mouth sore pain phytonadione/Vit K = helps with clotting potassium acetate, magnesium sulfate, calcium gluconate = additives Tacrolima = prevent rejection probably others I'm forgetting just now Med Changes: erythromycin for eye sty added 24 hour morphine drip (in addition to self-admin morphine) for pain added vancomycin every 6 hours (in addition to PRN) for nausea Today Ty had a bit of a rough night last night, and awakened again this morning in pain (this time nearer the tummy, but same type of pain as esophageal) and nauseated. The team started Ty on a continuous morphine drip and added more regularly schedule vancomycin, which has really helped keep these nuisances under control today. With all the added meds and other stresses on Ty's body, he ended up sleeping from about 9:30AM until about 5PM. At 5:42PM this evening, the team (Dr. Small, Nurse Ami "AhMEE", and Dr. Pal) began Ty's transplant (infusion of donor's PBSCs into Ty's central line). The donor cells were opaque white, T-cell depleted and all contained in one large syringe. It took all of about 5 minutes to complete. The doctors were light-hearted and joking with Ty. Ty was still groggy, but relaxed and cooperative. I, of course, cried. I was overwhelmed by the sheer gratitude and indebtedness I felt at that moment toward our donor...and the HOPE he's given us for Ty's future. What a selfless act of kindness. I'm so proud of Ty. He has taught us so much about what's really imporant in life. I simply cannot imagine a life other than the one we chose when we brought him into our family. My sister, Donna, of course, was with us helping make today extra special... we kept busy making party hats, blowing up balloons (Dad, I meant to say 'filling balloons with air' haha), serving up chocolate mint Soy Delicious (soy "ice cream"), and playing LOTS of cards... we both said we 'could play cards all day and never get tired of it'. I don't know about her, but I'm ready for more :) My mom, husband and two girls got to watch the transplant on the webcam (well, they mostly got to watch the back of Dr. Small's head... haha... the same view my camcorder recorded). Ty is resting comfortably now. Hope to have a quiet night, pain- and nausea-free. Thank you for all the prayers to this point. Please keep them coming for Ty, as the next couple weeks will be extremely tough. Love, hugs and kisses. We miss you all and we're looking toward the future... to the day we can be reunited. XOxoXOxoXOxoXOxoXOxoXOxo Love, Karen/Mommy

Tuesday, June 21, 2005 10:30 PM Day -1 (arrived NYC 6/5/05; admitted MSKCC 6/15/05; transplant scheduled 6/22/05... THAT'S TOMORROW!!) Counts: WBC 0.1 Hgb 9.1 (was transfused Monday) platelets 18K (was transfused Saturday) ANC 0 Today: REST, platelets Meds: vancomycin, amikacin, ciprofloxacin = antibiotics ondansetron/zofran, ativan & vistoril = anti-nausea/vomiting caspofungin = antifungal acyclovir = antiviral tylenol, benadryl, methylprednisolone = pre-meds morphine (switched to PCA pump...Ty pushes the button to dispense when he needs it for pain) hydrocortisone cream = itchy rash Magic Mouthwash = for mouth sore pain phytonadione/Vit K = helps with clotting potassium acetate, magnesium sulfate, calcium gluconate = additives probably others I'm forgetting just now Med Changes: Tacrolima (helps prevent body from rejecting donor cells)started Cefepime (antibiotic) D/Cd Today Today was an awesome day! Ty had no nausea until dinner time... and his medicine was given promptly so Ty didn't even vomit :) Also, he had very little pain today (only had to push his button a couple of times today for esophageal pain... the entire GI tract from the mouth to the bum becomes plagued with ulcers/mucositis after chemo/radiation). Ty was his 'old' silly self all day, playing tricks and wowing the staff with his newly discovered magic talent and whoopie cushion. I've been having so much fun with my sister (and of course, Ty probably wishes I'd leave NY and cool Aunt Donna could stay with him for the next 6 months!). Maybe I'll tell him to be careful what he wishes for (giggle). Tonight when I was tucking Ty in he had a lot of questions... about the long-term side effects of the chemo and radiation... and about him not being able to have children... and about dying... and about his hair falling out... and about what to expect tomorrow... and about 'what if' the transplant doesn't work (we'll try again)... and... So, the cells are being couriered tonight to NY (from where I do not know and they can't tell me). It will take MSKCC about 4 hours to test the cells and to T-cell delete. The "fellow" on tonight said his best guess for transplant tomorrow will be late afternoon. Please continue to pray for Ty's donor. Of course we also ask for prayers for Ty's transplant tomorrow... and for his engraftment, comfort, peace and health. Please pray for strength for me. And of course for wisdom and compassion for Ty's transplant team. Remember all the FA families dealing with losses, as well as those dealing with transplants, treatments or just biding time until a real cure for FA is found. We so appreciate all the guestbook entries, emails, phone calls and visits. Zoe and CeCe, I love you and miss you oodles and poodles. How do you suppose, out of ALL the kids in the world, I got lucky enough to get YOU?! No You. No YOU. Steve, I love you and miss you, too. XoXoXoXoXoXoXoXo Karen/Mommy

Monday, June 20, 2005 10:00 PM Day -2 (arrived NYC 6/5/05; admitted MSKCC 6/15/05; transplant scheduled 6/22/05) Todays Counts: WBC 0 Hgb 9.6 (was transfused after this lab done) platelets 27K (was transfused Saturday) ANC 0 Today: chemo chemo ATG (rabbit serum) Meds: vancomycin, amikacin, cefepime and ciprofloxacin = antibiotics ondansetron/zofran, ativan & vistoril = anti-nausea/vomiting caspofungin = antifungal acyclovir = antiviral fludaribine & cytoxan = chemotherapeutics ATG/anti-thymocite globulines = rabbit serum tylenol, benadryl, methylprednisolone = pre-meds probably others I'm forgetting just now New meds: morphine (esophageal pain) hydrocortisone cream (itchy rash probably from the ATG) they are talking about discontinuing one of the four antibiotics (to prevent kidney toxicity and so it will be more effective down the road should they need it again). Today was a GREAT day. Ellen (days) and Eileen (nights) were back on today. YAY! Ty had minimal nausea/vomiting this morning only; less diarrhea than previous days (they're culturing it for C-diff); today was the first day Ty asked for pain medicine for esophageal pain (morphine worked well); no chills/fever; and today was the LAST DAY OF CHEMOTHERAPY!! Tomorrow is a "rest day", and Dr. Small said she was even ordering "no homework" :) Tomorrow they will start Tacrolimus which will help keep his body from rejecting the transplant. Most of today Ty was (nearly) back to his silly old self. My sister, Donna, arrived this afternoon and really made Ty's day. She was a sight for some sore eyes around here! She came bearing gifts too (magic tricks and some cool things to scare the nurses and doctors with...and window paints. She's already painted a very cool Yoda and will paint more Star Wars stuff tmorrow). She's the coolest aunt and sister, and Ty and I are so glad she came up :P Please remember Ty and Ty's donor in your prayers as transplant day approaches. We anticipate some really rough weeks and months to come. Please also remember Maria (battling cancer again) and all the FA families in all stages of this rotten disease. Thank you Steve, Mom and Miss Anita for taking such good care of my girls!! I had the sweetest message on my cellphone last night from the girls... made me cry (but in a good way!) Today we received a package from my cousin, Stuart... thank you! It was like Christmas around here... you made Ty feel so special. Thank you also for my beautiful card. Also, Steve/Daddy , we received the books and drawing paper you sent up for Ty. He loves you man... (grin) XOXOXOXOXOXOXOXOXOXOXOXOXOXOXOX Karen

Saturday, June 18, 2005 10:01 PM Day -4 (arrived NYC 6/5/05; admitted MSKCC 6/15/05; transplant scheduled 6/22/05) Todays Counts: WBC 0.3 Hgb 8.7 platelets 24K ANC 0.2 WBCs and ANC are steadily decreasing as expected with TBI, chemo and ATG. Hi everyone. Well, after such a rough night again last night, the doctors that rounded today made some changes. First off, they are no longer giving the anti-viral med by mouth (switched to IV due to nausea and vomiting and fear of 'losing it'). Now, the only by mouth med is tylenol, and they found that if they give the childrens liquid, he's much less likely to throw it up and lose the benefit of it... so no more chewable/swallowable tylenol for now anyways. Also, they stopped the antihistamine they were using for nausea control (Vistoril) and are now giving him ativan. Plus he's still on the constant drip of Zofran for nausea. Lo and behold he spent all afternoon nausea-free! YAY!! He was actually closer to his 'old' self (silly, fun, smiling) than we've seen him in days :) Today was a repeat of yesterday (chemo, chemo, ATG) plus they added a transfusion of platelets. With all the pre-meds and constant re-dosing of same pre-meds throughout the day, Ty had no reactions (yet) today after chemo/ATG. WOW! Found out today that the blood cultures taken Wed as a result of fevers after Total Body Irradiation (TBI) were negative. They did more blood cultures last night for the fever he was running then. He will stay on the three antibiotic drips he was put on Wed, plus they added a fourth. Hopefully these newer cultures will also be negative. Appetite: Nothing to eat all day until dinner time when he ate a veggie burger and some sweet potato fries (oh, and a half cup of coke earlier in the day... I know, I know... even Ty said it, "We aren't supposed to drink soda". Just a special treat... and it was the first thing he's kept down in awhile :) Really enjoying Steve being here. We'll be sad to see him leave tomorrow afternoon. But we're really looking forward to Aunt Donna arriving Monday :) Thanks for checking in on Ty again today. The prayers, guestbook entries, IM chats and emails really brighten our days... thank you!! Taylor A. (our friend down the hall) got some good news today... he's engrafting! His WBC's were 1.1 and his ANC was up, too. Awesome!! Please continue to pray for Ty's donor. Also, Maria at Shands is undergoing chemo for her second bout of cancer (we're so proud of you, Maria!)... please continue to include her in your prayers. HAPPY FATHER's DAY tomorrow!! We love and miss you all. XOXOXOXOXOXOXOXOXOXOXOX Karen, Steve and Ty (missing my girls terribly...)

Friday, June 17, 2005 10:30 PM UPDATE: It's now 4:50AM Saturday. Ty's been up for a couple hours throwing up, fever, chills. They think it's still b/c of ATG Friday, and he's already on three antibiotics. But they're doing blood cultures to be sure. Poor guy.

Friday, June 17, 2005 10:30 PM Day -5 (arrived NYC 6/5/05; admitted MSKCC 6/15/05; transplant scheduled 6/22/05) Today Ty had chemo again (Fludarabine like yesterday, plus Cytoxan) and ATG (rabbit serum). The ATG was difficult. Ty ended up getting chills and fever, so they called in two docs to come check him over. They decided to stop the ATG for a bit, then restart at less than half the rate. In the meantime, they gave Ty demerol (which promptly made him vomit), more benadryl and more tylenol (which they had pre-medicated him with also) to help with the reaction. He just finished up the ATG (it was started around noon). He's thrown up a couple more times today, but he's learning not to be so stoic... and to ask for meds before it gets to the vomiting stage. His appetite stinks, although he did eat oatmeal and a banana for breakfast... and a couple fries for dinner (yeh, so not like me... but by the time his nausea was under control it was too late to order room service, so I went down to the nearly-closed cafeteria and that's the only thing that I thought might interest Ty. Dr. B stopped in today and said that he predicts 'engraftment' of the donor's cells (that's when the new stem cells placed in Ty's body start taking hold and making new cells) July 3 or 4, "day 11" or "day 12". If all goes as planned Ty may be discharged the following weekend to RMH. Of course, he'll likely be readmitted several times for fever/infection, etc. But we're looking forward to RMH none-the-less (Bill and Carol can you believe I just said that?!) Steve/Daddy made it up this afternoon for a weekend visit. What a sight for sore eyes he is. He stayed with Ty this afternoon so I could go to RMH and take care of some things. We had 5 big packages in the lobby there (and YES, they reminded me AGAIN not to fold the empty boxes up and put them down the trash chute, as that apparently caused quite a problem when we first arrived). The boxes contained some stuff from home that Steve sent up AND some storage cabinets/drawers I ordered online for the RMH room. I got the cabinets put together and loaded down with all the junk in our room. Then headed back to the hospital with more stuff for us to do here at MSKCC. It's been a couple days since I've been outside, and it was much cooler than it had been... very pleasant surprise! Thank you for praying for Ty's donor. Thank you also for praying for Maria (undergoing treatment at Shands for her second bout of cancer... between the esophagus and spine this time) and of course for all the FA families in all stages of this disease. Thanks to Mom, Miss Anita and Donna for taking care of my girls while Steve's away. We love you!! And miss you oodles! Donna, I'm really looking forward to seeing you (in person!) on Monday :) :) Thank you! Love, Karen, Steve and Ty

Thursday, June 16, 2005 8:00 PM Day -6 (arrived NYC 6/5/05; admitted MSKCC 6/15/05; transplant scheduled 6/22/05) Hi everyone. Ty had a better day today than night last night, with only a few bouts of nausea and no vomiting. His cheeks are a little puffy, and there is already mucus (plus Ty has had 2 mouth sores for a few days). No more fever (still on several antibiotics). Dr. Boulad came in tonight to say hi and to tell us not to scare the bejeebers out of him again with high fever. (But Taylor's mom had told me earlier today that Taylor ran a high fever after radiation too, and none since. Dr. Boulad said we're expressly forbidden to speak to one another ... giggle) Taylor, BTW, lost his hair last night at Day 7 / Day 8. All of you in on the wager for when Ty's first clump of hair will be lost will have to read the next paragraph and do the math yourselves to see how close you might be to winning! Of course, Ty has the ultimate say, really, since he could choose to leave his hair alone or to start tugging at it. I'm just not letting him anywhere near a calendar... I could really find some fun things to do with the $50!!) Chemo started this morning and we are officially at Day -6 There are 4 more days of chemo, 1 day of rest, then Wednesday, June 22 is Transplant Day, or Day 0. Dr. Small will be administering the stem cell transplant. She made a green (Ty's favorite color) cat (Ty's request, when she said she couldn't make Harry Potter or Star Wars) countdown calendar for Ty (which I'm hiding *joking*). Dr. Small along with a whole team of BMT docs rounded on Ty this morning... it was 3 or 4 women docs and 1 'token' male (HIS words, not mine). They're all really compassionate, thorough and honest and they all round on every patient together every morning (plus one comes in and does a check-up on Ty before the team rounds). I heard Dr. B's BMT rotation was coming up soon, but I forgot to ask when. Ty is now in reverse isolation. He may not leave his room, and everyone who enters his room must don mask, gloves and gown. Already he's eating much less than usual... just no appetite (and the fear of vomiting, I think). The dietician paid us a visit today and seems very willing to work with us and Food Services to make sure we get vegan/neutropenic foods while here (more than just the 3 items on the menu we can eat). She even said she'd make sure they got soymilk for Ty. That was really nice. We saw Dr. Boulad and one of his clinic staff, Miss Vicky on a taped piece on The Today Show this morning (it was about Prom night at MSKCC). We're going to try to plan our 1 year follow up to coincide next year. We would have gone this year if we had known ahead of time about it. It looked like a blast on TV! Thanks for checking up on us and for keeping Ty's donor in your prayers. All we know about him is he is 28 years old and passed all the hurdles he had to jump over for this transplant. Awesome! Also, please remember Maria, having port and feeding tube placed for chemo at Shands. And of course ALL the other FA families need and really appreciate your ongoing prayers. We miss you and appreciate all the emails, phone calls, IM chats and guestbook entries. It's making it so much easier. Love, Karen and Ty

Wednesday, June 15, 2005 10:07 PM UPDATE 12:45AM Ty has a fever, so they're doing blood cultures and starting three antibiotics. Whew! We made it to our room. We are in M937, although Dr. B told us not to unpack, as we'll be moving to a new room soon. We arrived at the hospital at about 7:15AM. Had labs, repeat PFTs (everything was ok), anti-nausea meds, then over 2.5 hours in radiation (when they say "20 minutes front and 20 minutes back", they don't count all the x-rays they do to make sure of proper position, plus the additional radiation of just the ribs). We got to the room at about 8:45 tonight and are finally settled in. We arrived to beautiful 'welcome' posters made by Taylor (he's a few doors down from us). THANK YOU Taylor and Jeanne... you really brightened our night!! Ty did great during radiation. They guys down there are great about keeping everyone informed of every little thing they're doing. Plus Ty got to watch movies, so he was happy. The nurses came in and awakened Ty just now to weigh him and get a height (for chemo which starts tomorrow morning) :( He started throwing up. So they added an additional anti-nausea med (he now has two: vistaril and ??). He just fell back to sleep. He's not in isolation yet. That will begin tomorrow after morning rounds we were told (so we can see all the doctors' faces just this once :) Well, my chair is folded down into a 'bed', I ate some dinner (nothing since this morning at 6:30 except half a bagel and some orange juice), and I'm about ready to fall over. So I'll say goodnight and update again hopefully tomorrow. Please remember Ty's donor in your prayers. Also, remember Taylor here at MSKCC and all the other kids at other institutions going through exactly what we are. And don't forget Maria (at Shands for treatment of more cancer). And finally, all the kids in all stages of FA. Love, Karen and Ty

Tuesday, June 14, 2005 2:00PM ANOTHER UPDATE 8:40PM Just heard from Dr. B again. Good news: "The donor is cleared". Hip Hip Hooraaaaay! UPDATE 5:15pm Just heard from Dr. B. After reviewing all of the tests (everything looks fine except the PFTs), he wants us there at 7:30AM for PRBC transfusion, then repeat PFTs. The tech apparently made a note, which Dr. B says he never even usually sees, which stated that Ty told her he's had increasing shortness of breath (SOB) with exertion... and Dr. B wants to be absolutely sure everything's ok before proceeding with transplant. I told him the SOB has gotten progressively worse since Ty joined us, and also that it's always better after PRBCs. Ty had the last PFT before they did his transfusion... and apparently they need good numbers on labs in order to get the appropriate PFT results. Just precautionary. I'm surprised Ty offered any info to the tech. He usually just says he's ok. I'm glad he did. NEW PHOTOS UPLOADED. Hello everyone. Thanks to everyone who has sent an email, made a guestbook entry, called, or chatted online with us since yesterday. No more pity party (for now, anyhow) :) I'm still missing my girls, but I woke up with a whole new attitude (now if only I could just get a whole new body to go with that!) :P Steve ~ I'm so proud of you and can't wait to see you Friday! Chris ~ really enjoyed catching up with you. Jeff ~ your email really touched my heart. Pat (who called all the way from China this morning) ~ Thank you! Kim (who's awfully busy at home with 16 kids but never fails to call and cheer me up) ~ You're awesome! Mom (who IMs and calls me everyday and is helping take care of my girls ~ Couldn't do it without you! Donna ~ You're my rock! Mimbo ~ You're such a great helper... I'm glad my girls are getting this time with you. Anita ~ I'm so glad my girls love you so much... thank you! Dad ~ we love you and miss your funnies (pull my finger?!) Adam, Lanie and Kevvy ~ Thank you for lending me your mom next week... we miss you so much! Leigh ~ you give me way too much credit (thank you!). Penne ~ I love hearing what's going on at home... thank you for some normalcy :) Zoe and CeCe ~ How do you suppose, out of all the kids in the world, I got lucky enough to get YOU? (no YOU, no YOU!) :) And big ol group hugs for our FA family and FAC family... thank you for your many kind words and continued prayers! Ty now has his (very patriotic ~ the lines are red, white and blue!) triple lumen CVC and he's feeling fine. He's sort of babying it, but he'll get used to it. Ty S. is in the room with us... they're, ummmmm, playing PS2! (surprise! Is there anything else?!) This is the last day they have to play, as Ty S. will be going home in about 2 weeks (while we're still at MSKCC). My Ty is sad about that. Tomorrow Ty will be admitted around 11AM and will begin radiation sometime after that. I'll be signing on from MSKCC starting tomorrow... for about a month or so, I think. Until tomorrow... Please remember Ty's donor in your prayers. Please pray for all the FA kids in all stages of this disease... and for all the empty arms... Remember, too, Maria as she's undergoing treatment in Shands for another cancer. Thank you. We appreciate, love and miss you all. ~ Karen and Ty

Monday, June 13, 2005 2:19 PM CDT Hi everyone. We just returned from MSKCC. Ty had labs done, received more platelets (they were already down to 21K after his last transfusion) in preparation for tomorrow's line placement (triple-lumen CVC under general), and saw Dr. B and his ARNP Ann for exam and to sign consents. This has been a very emotionally charged day for me, starting with the signing of the consents. Dr. B is wonderfully compassionate, and as soon as he realized I was teary he scooted Ty out to the gameroom and sat down to see if he could help put my mind at ease. We talked some more about the pros (Ty's good general health, all things considered, Dr. B's protocols, and the fact that 'it's time', etc) and cons (Ty is CMV positive, he was on long-term androgen therapy, less perfect match, etc). I know he'll take great care of Ty. It's still scary for me. I thought I'd remain really positive throughout this process, but I'm already faltering... And then there is the matter of my girls. I'm missing them terribly. I know they're very, very well taken care of, and I knew it would be hard... but it's excruciating. And then there is the matter of just being out of my element and 'alone'. I so admire all the families that have done this already and/or are doing it now. I feel weak and unprepared, even though we've been heading toward transplant the entire time Ty's been with us, which is only one year. Not nearly long enough. Even though professionally I'm an R.N., in this case I'm just a mom... and it's much, much harder on this end. So, tomorrow we have to be there at 10:30 for line placement (NPO after midnight) and more blood and another exam by Dr. B. Hopefully we'll also get the preliminaries back on Ty's bone marrow biopsies tomorrow as well. I believe we will be able to sleep at RMH tomorrow night. Then we'll be moving to MSKCC for radiation. I'll post address and phone another time. Please remember Ty's donor in your prayers. We know he had his physical and labs last week, and Dr. B hasn't heard anything back but presumes that 'no news is good news'. Please remember Taylor who had his transplant last week here at MSKCC and of course all the kids in all stages of this disease. Also, please remember Maria who is going to Shands this week for treatment for her second round of head/neck cancer. Thanks to everyone for staying in such wonderful touch. Heard from Uncle Stan today... he and Jeff are heading to Vancouver to visit Chris/Linda. He also has his 50-year high school reunion this year and a trip out to see his mom, Canonball Coke! They hope to come visit us sometime soon, too. ~Karen (and Ty)

Sunday, June 12, 2005 10:38 AM NEW PHOTOS ADDED Hello everyone! Well things are just fine here. Really enjoyed chatting last night with some of you (Zoe, CeCe, Steve, Mom and Dad, Donna, Kim) and yesterday (Carrie and Tonya). We miss ya'll so much. We've just been having a relaxing weekend at RMH. Yesterday I ended up doing about 6 loads of laundry (most of that was bedding that I purchased before we left FL, but didn't wash beforehand). Ty and I did math homework all morning yesterday, as we slacked all week. Ty S. and his brother Pierce came to our room in the afternoon and did boy stuff with my Ty (hand and armpit toots, whistling contests, Star Wars play fighting, pillow fighting, video games, boy-in-a-box and box-on-a-boy, etc). Last night everyone bet on (against the 'house') and watched horse raising on the big sreen in the dining room... Ty and I each won $1(thanks to a tip from Ty S.'s mom) because our horse (#9) came in first. You should have seen the excited kids in that room! A dollar can buy a few sodas in this place :) RMH then had a pizza party for everyone (we, of course, couldn't eat it, so we had left-overs) ... and then the teens went out to the movies (again, courtesy of RMH). I had no idea RMH did so much for their families! This morning Ty and I slept in, then went down for waffles, then went in search of some more health food stores we'd heard about. The closest one was closed, but didn't look like what we were needing. The other one, A Matter of Health (First Ave and 77th St), was a home run. These little local places look tiny, but it's deceiving what all they can cram in there. I found more of our usual buys at that tiny little store than I did at the huge Whole Foods store on Columbus we hit when we first arrived. And, they deliver :) AND it's not so intimidating a chore here :) Right now Ty is doing Turbo Twist Math (he thinks it's fun, but it's really homework! :) We have to be at MSKCC at 8:30 tomorrow morning. That's about all that's going on here. Again, for those who've asked, if you're thinking about sending something up for Ty, he'd love some more things to scare the hospital staff with (and make them laugh)... and he'd love things to decorate his hospital room with (Star Wars, Harry Potter, and Lord of the Rings posters; glow-in-dark stars, moons, planets to hang from the ceiling; window paints; maybe a poster-size picture of his friends; and of course, cards/letters are always a big hit :) Thanks for checking in on us. Please remember Ty's donor in your prayers. Also, all the kids in transplant, home from transplant, and home in Heaven. ~ Karen (and Ty)

Friday, June 10, 2005 1:42 PM CDT We're home from MSKCC. Everything went well with Ty's bone marrow aspiration and biopsies. We'll get some preliminaries on Monday, I'm sure. Oh, and on Ty's buns we wrote, "Don't hate me because I'm beautiful ~ BOHUNKUS". You should have heard the laughter coming from the O.R. :) We have to be at MSKCC Monday 8:30 (for what, I don't know... I think just for labs and to see Dr. B.) Tues is central line placement. Wed is admit and begin radiation. Thurs starts chemo. Still looks like donor gives on 21st and Ty's transplant should be on the 22nd or 23rd. We ran into Jeanne A. at clinic and she took us over to the BMT unit to see Taylor (we met them last year at Camp Sunshine). He looks great and his room is awesome, all decorated with Star Wars stuff :) Jeanne also gave me a mini tour of the unit (washer and dryer, pantry, bathrooms/showers, etc.) It really helps to know what to expect. Please remember Taylor in your prayers. His sister Alison and her hubby left today. His other sister, Whitney leaves tomorrow. This will be very hard on Taylor. Also, his dad leaves Wed. Thanks for all the well-wishes, phone calls, IMs, emails. We appreciate it ALL! We just received a big box of Popcorn Factory goodies from Terri. THANK YOU!! That was so sweet :) And, the box is the perfect size for a trash can (so it's one less thing I have to ask Steve to pack up and send to us :) For all of you who've been asking what you can send up for Ty, here are some suggestions: ~ more funny stuff to scare Dr. B and the nurses with (and make them laugh) ~ decorations for the hospital room (posters: Star Wars, Harry Potter, etc), things to hang from the ceiling (glow-in-dark stars and moons and such), window paint for hospital windows, maybe posters from friends/family. (Anything that's going into the hospital has to be new and/or washable/scrubable) ~ PARTY supplies for transplant day :) (maybe star wars?) Steve~ I have a small list of things I need for you to send up... most of them are at home. We miss ya'll terribly and love you oodles and poodles. ~ Karen and Ty

Thursday, June 9, 2005 6:10 PM Hi everyone. We're both fine. Missing ya'll terribly, though! So glad to have these webcams and cellphones :) We spent the morning at MSKCC getting blood products (no reactions this time with all the pre-meds!!) and labs. Back at RMH by about 1-something. Tomorrow Ty gets admitted for bone marrow biopsies and aspirates. We were originally told to be there at 7am, but had a message this evening that he's not scheduled until 12:30. NPO tonight. Made stir-fry vegetable rice and a celery/apple salad for dinner (and of course Ty S joined us... but he was looking forward to steak with his family tonight... not gonna find that in our kitchen :) The weather here is hot and muggy (just like home :) That's one really good thing about our 1/2 size room at RMH, it stays cooler than the bigger rooms we've had before. Ty's been having lots of fun with the mouse Mema gave him... scaring the hospital staff... now we just need to find some little mechanized thing we can put under the covers to REALLY get his victims going :) Not much else to report. Again, still working on fixing my email problem. I can read your emails, I just can't reply.... sorry! Big huggies to my girls. I miss you oodles and poodles! How do you suppose, out of ALL the kids in the world, I got lucky enough to get YOU?! Love, Karen (Mommy) and Ty

Wednesday, June 8, 2005 9:15 PM CDT Hi everyone. We spent the better part of the day at MSKCC doing echo, EKG, PFTs, CT scan, Dr. B appointment and dental appointment (Ty has two small cavities, but nothing that should be fixed before transplant). Everything went smoothly. We found out this afternoon that we do not get the day off tomorrow as originally planned... instead Ty has to go for more PRBCs... no biggie. Hopefully we'll be back at RMH around lunch sometime. Tonight we made black beans and rice, garlic rolls and edamames for dinner (again, our only real meal of the day!). Ty S. joined us again (he joined us last night for frozen dinner Indian food). He's a really good guy and my Ty's sure happy to have someone to hang with :) We got back to RMH today to some GORGEOUS flowers and some smiley face balloons from Ty's best friend, Nathan (and his mom - my friend, Kim and family) Thank you guys!! We tried to call you this evening, but realized you were probably at church. I still haven't figured out how to email yet. I was able to get onto the road runner webmail site, but couldn't get in to send any emails (ugh... maybe I'm too tired... maybe I'll get it to work tomorrow... maybe not) Chatted with Zoe, CeCe, Steve, Donna, Mom, Missy, and Carrie today online. Cathie (Steve's sister) called us on our cell... caught me all up to date on the newest arrivals in her family (two new grandbabies) and told me Rick will be in this area next week. Hope to hook up with him. Talked to Tonya for just a couple minutes on the cell before I lost her in the elevator... sorry Tonya, I'll call you back soon. Yesterday we had a surprise visit from Suzanne Lauck of Fanconi Anemia Research Fund... she's the patient coordinator and AWESOME in every sense of the word. She was in town for an FA conference. It was so nice to see a familiar face so soon after arriving :) That's about all for now. Thanks to everyone for EVERYTHING you're doing for us... we couldn't do it without you. And a special thanks to Cher Stanley (mom of Zoe's friend Kaden) who felt a special calling to help Ty and other kids awaiting transplant and has organized a bone marrow drive in Melbourne in honor of Ty. She's worked so hard to make this a huge success, right down to the advertising. She's awesome! Please keep Ty and his donor in your prayers. Also, please remember my girls as they search for a new (temporary) sense of normal under others' care while we're apart. And remember all those in our FA family in all stages of this difficult diagnosis. Thank you!

Monday, June 6, 2005 7:00 PM CDT ONE NEW PHOTO ADDED (last one on photo page... tattoo) Hello everyone. We're fine and dandy. Here's what we did today: At 6:50 AM we were out waiting for the RMH van we signed up for the previous night. Sign up times are from 7AM to 7PM. By about 7:10 we were wondering where the van was and someone told us that the driver doesn't arrive at work until 8AM. Ugh. Great start to our day. So, we ended up walking quickly to get to our appointment on time. It's only 5 blocks, but Ty is really short of breath, so we won't be doing that too much right now. Ty had a fingerstick CBC (showing he did indeed need PRBCs and platelets). They then did more labs... like 10 vials, including type and cross-match. We then went to see Dr. Boulad and Ann (his ARNP). They explained what would be happening over the next week and got the ball rolling making all the appointments. In the meantime, they tried to get the platelets going, but got delayed, so we had to hurry on to Ty's 11:00 appointment with Dr. Sue Wolden, in radiation therapy. There they x-ray'd him, CT scanned him, tattoo'd him and explained what would be happening next week for Total Body Irradation (TBI). They explained all the common side-effects like nausea and vomiting (but they pre-medicate for this to help), hair loss, weakness, salivary gland soreness, etc. The also explained some possible long-term problems, too, like thyroid issues (he would then need a synthetic thyroid replacement), cataract issues (could have lenses replaced), and of course, all guys getting TBI always have 100 percent sterility "guaranteed". We then went back to the day hospital for platelets and PRBCs. They premedicated this time with 34mg benadryl and 34mg hydrocortisone. Of course, the platelets were single donor and irradiated and there was NO problem this time. YAY! For the PRBCs they washed them this time (that's new for us... and apparently not common even at this hospital, as the nurse who brought them up said she was stopped by everyone asking what was up with the blood in the weird bag). Ty made it about half-way through the PRBCs and started having a reaction (just red splotchiness over his torso)... nothing serious compared to what happened with the last platelets he got in Melbourne, but they immediately stopped the transfusion, RE-medicated with the same pre-meds, then tried to start the transfusion back up. This time Ty got some hives on his face, so they decided to call it a night. Incidentally, while I was looking at Ty's back for reaction I noticed that the place where they tattoo'd him was NOT the place they had marked with a marker, so on our way out of the hospital tonight we made our way back to radiation and found a doctor working late. She measured and documented the difference in spots (about 8cm!) so that hopefully Ty won't have to go through all the stuff he went through today again later this week to correct the problem. Dr. Boulad didn't tell us not to, se we cheated and went out to eat tonight (Indian) :) Ty deserved it! Here's what the next several days look like: Tues: RMH day Wed: MSKCC - echo, EKG, PFTs, CT sinuses, clinic appointment, etc. Also appointment with the dentist. Thurs: RMH day Fri: Bone marrow aspirates and biopsies, clinic appointment, labs Mon: RMH day Tues: central line placement Wed: admit, TBI Thurs: fludarabine (chemo) Fri: fludarabine, cytoxin, ATG Sat: same Sun: same Mon: same Tues: start Tacrolimus?? PBSC collection from donor Wed or Thurs: T-cell depleted PBSCT for Ty "DAY 0" Well, more than you probably wanted to know but I guess I'm doing this for my records, too. Thanks to everyone for all the well-wishes, emails, guestbook entries, phone calls, and prayers. Leaving yesterday was very difficult, but we're fine and we're both ready to get on with things here :) Love to you all. Anyone who sees my girls please give them extra big hugs and extra lovin' from me. Love, Karen (and Ty)

Sunday, June 5, 2005 11:30 PM UPDATE Monday 8:30AM: We are at MSKCC for labs (have been here since 7AM). Awaiting word about transfusions. Already saw Dr. Boulad briefly in the waiting room. To help ward off reactions to blood products they will be premedicating with steroids. If Ty continues to have bad reactions, they will have to wash his cells. (I am using the computer at MSKCC. I can tell you at RMH I can read email, but for some reason can not send. I can access MSN Messenger from room.) More later Hi everyone. We arrived safe and sound. We're in room 301 at the Ronald McDonald House. We landed somewhere around 7:00 pm at Teterboro in NJ. Flights were all uneventful. Cair Flight and Angel Flight are awesome folks. Thank you!! We couldn't have done it without you! We even got to meet up with Michael P. again (he flew us on a previous mission)... it was really nice seeing a familiar face this go'round :) It took about an hour to arrive at RMH, another half-hour to get signed in, and we just finished cleaning the place from top to almost bottom (it's too late at night to vacuum) and showering. Ty's in bed. Goodbye's yesterday were extremely difficult for me. Thank you to all my family for coming (that includes Kim and Nathan... we think of ya'll as family too!) I missed everyone the whole way up here, all through the night, and I know it's going to get harder yet as the days tick by. Thank goodness for phones and computers! More another time... heading off to bed for 7AM ride into the hospital tomorrow. Love, Karen (& Ty)

Friday, June 3, 2005 10:09 PM CDT **UPDATE 6/4/05 2:11 PM Eastern: Just heard from our first pilot and he wants to be on the plane by 8:30... so we're leaving an hour earlier than scheduled. This will be the last entry before heading up to NY. We leave at 9:30 AM Sunday and don't get in to NJ until 7PM... then have to get transportation into the city. Not sure where we're staying Sunday night (RMH may not have a free room until Monday... but we're 4th on the list and they know folks are checking out... just don't know how many rooms will be freed up Sunday). Ty will have to go to Dr. B's first thing Monday morning for labs, platelets and PRBCs. He's past due, but they don't want to give them here again due to severity of Ty's reactions the last few transfusions. Also on Monday we'll be seen by the radiology doctor (prep & measurements for TBI scheduled the 16th). Other than that, not sure what all we're scheduled for this coming week. Ty's hanging in there. I know he feels crummy. He looks 'sick'. He's mopey b/c he doesn't want to go. But he's resigned and ready. The girls are hanging in there, too. Zoe is extremely fragile (crying alot, sleep walking/talking, etc.), but we have webcams set up so we can chat and see each other as often as possible. And of course, there are always phones calls and emails and snail mail. CeCe is her usual self, none-the-wiser about what's about to hit her. Reality is starting to set in for Steve. He'll do great, though. I'll really miss my partner, friend, love. I can't wait until your first trip up to visit :) Anita (friend, nanny) and Mema & Poppy (my mom and dad) are all 'scheduled' to take over during the daytime hours. Thank you SO much! There is no way we could have done this without you two. It's so hard leaving my girls, but I know they're in great, loving hands. Thank you to all our friends who've emailed, phoned, dropped by the last week. I am going to miss our playdates :) And to my sisters... gosh, I can't tell you how hard it will be being away from ya'll. I'm going to miss you terribly. Please drop by Pepa and Gramma's and love on them for me while I'm away... I hate that by the time we return from NY they'll have moved away. Please pray for Ty and for his donor. I'll post when we're settled in NY... Love, Karen

Tuesday, May 31, 2005 10:35 AM CDT Schedule so far: We're leaving Sunday, June 5th for NY (Angel Flights has more pilots available on the weekends, that's why we're leaving before the 7th as originally planned). We'll be at Ronald McDonald House (RMH) in NY through the 15th. Ty will be admitted to Memorial Sloan-Kettering Cancer Center (MSKCC) on the 16th to begin total body irradiation (TBI) and chemotherapy. The donor will donate on the 21st and the cells will be couriered to NY. Ty's transplant will be on or about the 23rd. The local doc decided not to do any more labs before we leave (unless Ty is very symptomatic). He wants Ty to be in NY before having any more transfusions due to severity of Ty's reactions to blood products now. I think the reality of all this is starting to hit Ty. He's mopey, which is very unlike him. And I think the reality of all this is starting to hit the girls... they're whiney and clingy (or is it ME that's whiney and clingy?!) And Steve, well he's frantic about being able to do the girls' hair (grin). I have a cold (or allergies or something). Steering clear of Ty so he doesn't get it too. Boxes are still packed, but again, not shipping them to NY until I feel more confident we're really going this time. Please remember our donor in your prayers. Also, all the families in transplant now or heading there this month (Nathan, A.C., Jordan, Ty S, Devin, Apryl, Brian, Taylor, Yasameen, Kailee, Clinton, Johnathan, and of course, my Ty...I'm so sorry if I missed anyone). Also, remember Jo and Nicholas struggling right now....and all the FA families in various stages of FA. UPDATE: I just heard back from our transplant coordinator, Sinda. She says we're still "on schedule". The donor goes for his physical on Friday (as you can see the timing isn't the greatest, since we leave two days later...hopefully we won't end up in NY without a donor). On the other hand, maybe NY is where we need to be to get Ty followed appropriately in the interim. Karen (for Steve, Ty, Zoe and CeCe)

Thursday, May 26, 2005 7:52 PM CDT Hi. Thanks for stopping by. We just spent 27 hours in the hospital for a bag of platelets. Ty is having increasingly bad reactions to platelets and prbc's. In addition to hives (much worse this time), Ty's face and hands were swollen, he was vomiting, chilling and developed a fever. After 200 mg of IV benadryl over several hours the hives eased up enough for Ty to crash. They did blood cultures and ran two bags of Rocephin. Ty still has hives, but we're medicating with benadryl at home. Found out right before we left the hospital that Ty's WBC count is 0.87! ANC 148! Hgb 8.0. Platelets 70K (after half a bag of platelets last night). RBCs 2.52. Our local doc is contacting Dr. B in NY tonight to find out what to do. Local doc said he's a little nervous, esp considering we're not leaving until June 6 which means we have a few more transfusions in front of us. They don't want to load Ty up on steroids like solucortef to manage the transfusion sensitivities due to immunocompromised status. Local doc did say that unless Ty is symptomatic, he's not even going to transfuse platelets again unless Ty's number is too low to be calculated on CBC (ie below 6000). His platelets were 9000, I believe, on Monday. Last we heard, Dr. B didn't want to start G-CSF prior to transplant if at all possible. I'm curious to see what we need to do about Ty's WBC and ANC numbers, if anything. So, that's it in a nutshell. Ty, Nathan and Steve did get to go to see Star Wars Wednesday morning (private viewing arranged by my friend Carrie... THANK YOU CARRIE!!). They all had a blast! Thank you, again, for your well wishes and continued prayers. Karen (for Steve, Ty, Zoe and CeCe)

Sunday, May 22, 2005 7:58 AM CDT UPDATE 5/23/05 Noon: We're going in on Wednesday for platelets and prbc's. That's all we know so far (platelets were down to 11K again; Hgb 7.6... but by Wed and with the dilutional factor of getting the platelets, he'll need prbc's by then too) ALSO, my friend, Carrie did the NICEST thing for Ty (THANK YOU!!)... it's still a surprise for Ty, but here it is: She contacted the local theater and got them to agree to do a private showing of Star Wars for Ty, Steve and Ty's friend Nathan on Wed morning!! Ty would otherwise have to wait until it came out on video probably to see it since it's the busiest film out. What an awesome surprise! Hi. Thanks for stopping by to check on Ty. We appreciate all the emails, guestbook entries, well wishes and prayers. I heard from Dr. B Friday night. We are going to transplant with our 8/10 unrelated donor in June. We have to be at RMH in NY by June 7, admitted to MSKCC June 16, PBSC collection June 21, and transplant I presume around the 22nd or 23rd. Third time's a charm, right? (grin) Our donor this time is a 28-year-old male. Dr. B said the donor has also agreed to give a bunch of extra blood during collection, in case we need it. That's all we know so far. Labs tomorrow morning. Will update later tomorrow. Please remember the families with empty arms, families in all stages of transplant, families with sick children and families doing well. Karen (for Steve, Ty, Zoe and CeCe)

Sunday, May 15, 2005 6:39 AM CDT UPDATE: NEW PHOTOS ADDED UPDATE: Ty's on the front page of the Florida Today newspaper. http://www.floridatoday.com/apps/pbcs.dll/article?AID=/20050516/NEWS01/505160326/1006 (there are some mistakes, but we're so happy for the publicity!) We're having a great weekend. Ty's best buddy, Nathan, is here with us. Puzzles, Harry Potter Uno, Star Wars, pillow fights, swimming, biking... and EATING. These boys can put it away now! Too funny. Hope to post pictures later today. Thanks for checking in. Thanks for all the prayers and well-wishes and guestbook entries :) Karen (for Steve, Ty, Zoe and CeCe)

Thursday, May 12, 2005 4:57 PM CDT Labs (5-11-05) WBC 2.0 RBC 2.94 (post prbc transfusion) Hgb 9.5 (post prbc transfusion) Platelets 12K :( ANC 140 :( Ty's going in tomorrow morning for more platelets. Unfortunately, the gal at the local blood bank told us wrong... they can NOT get blood back from Orlando (where they send it to be irradiated and test for all the viral/bacterial stuff) in 24 hours... they can't even get it back in 48 hours. It takes three days. Since platelets are only good for 5 days, and since Ty can't wait 3 days for platelets, 'direct donation' apparently isn't going to work for platelets. Thanks to whomever it was that donated 260 cc of platelets this week. We couldn't do it without you! My sister, Donna, is going to go donate prbc's for Ty for use soon... they last 42 days. I stopped at the blood bank in the hospital tonight (we were there for type and cross match for Ty). The woman there told me that they do NOT throw away prbc nor platelets if Ty can't use them and if they're still in date. All I have to do is call them, tell them we won't need them, and they'll use them for someone else. This is a big relief, as the local blood bank told me that if they're specified for Ty, they can NOT use them for anyone else (and would therefore be a waste of 3 hours for whomever donated). Hard to believe the incompetency. I spent over an hour on the phone with them last week, getting Ty set up in their computer system for direct donation, discussing time sensitivity issues... wasting the doctor's time filling out the forms...wasting my sister's time making appointments and so forth. Ugh. I emailed Dr. B. I'm waiting to hear what he wants to do (if anything) about the consistently bad ANC. Newspaper reporter came yesterday to do a story about Ty. Photographer came today. Hope to get more folks motivated to register with the NMDP.... and get the word out about FA. Please continue to hold up in prayer those folks who've lost their babies in the last year... sweet Coley, Abbey, Emily, Charlotte, Davaan, Matthew, Janelle, Lakshmi... to name just a precious few. Also, please remember the four adult FA'ers struggling with issues like cancer. And we can't forget the kids in transplant ... Johnathan, Apryl, Clinton, Ty S, Yasameen, Nathan, A, etc. They are truly heroes and warriors in this fight against FA. Please also remember Ty's donor and doctors. Thank you for checking in on Ty. He's in seventh Heaven since receiving an email from Ashlyn-with-the-long-brown-hair today ;) Karen (for Steve, Ty, Zoe and CeCe)

Sunday, May 8, 2005 2:34 PM CDT Happy Mother's Day! Mine has been especially nice... one I thought a couple months ago I'd not be here in Florida to enjoy with my entire family :) :) :) My day started with flowers and breakfast in bed, followed by a gift of books (because I love to read and will need something to help pass the time in NY), socks (because my husband has some irrational psychosis about me wearing his...HEY, if it's good enough for Dr. Phil and Robin, it's good enough for us! :), hand-made cards from each of my children (my absolute FAVORITE gifts!!), and a yummy Happy Mother's Day Genius cake ("genius" because I tell Ty everytime he asks me how I know something, that I'm a genius... a story's even been woven about how I had to take a test..."The Genius Test" and how I am the smartest woman in the world). There are definite advantages to English not being his first language (smirk). When Steve brought home the cake, it only helped to solidify this whole genius story, as how could the baker have known to write that unless it were really true?! Thursday and Friday were awesome days, too. Thursday was CeCe's preschool Mother's Day Tea (with singing, breakfast and hand-made presents... they even pinned on hand-made tissue paper flower corsages and walked us over a 'red carpet' to their classroom). Friday was Zoe's Kindergarten Mother's Day Tea (with singing, cake, and hand-made presents). The children practiced for weeks on these songs, and one song was even dedicated to our family ("What a Wonderful World"). Everything was just perfect. I was especially proud of Zoe who was hardly shy at all during the entire performance! Of course, CeCe is the exact opposite of shy :) I forgot to mention in my last journal that the same day we got news of the donor backing out, which was also Ty's Gotcha Day (one year anniversary of him joining our family), I also had 'the talk' with him. This was not planned for that day (May 3), but rather just sort of happened. The kids at school had seen the movie about changing bodies after Ty went homebound and Ty was curious about all that; plus he told me 5 times that morning that in Harry Potter 5, Harry kissed a girl; then the clincher was when Ty told me that he had a dream about Ashlyn-with-the-long-brown-hair the previous night. I never imagined that I'd be the one to give 'the talk' to a boy, but it went perfectly. Ty was not embarrassed in the least, and he asked lots of appropriate questions... and we're still talking about it several days later. Steve also chatted with him yesterday while they were out doing archery and shopping for Mother's Day stuff... just so Ty knows the communication lines are open there, too... if/when he's not comfortable asking mom. Please pray for all the families in all stages of FA, especially those with aching hearts and empty arms. Please also pray for Ty's donor. Thanks to those who've donated platelets and prbc's recently and a big thank you to my sister, Donna, who's offered to direct donate platelets twice a week for Ty... having a fixed donor base should help cut down on reactions to blood products. We couldn't do it without your help! Karen (for Steve, Ty, ZoZo and CeCe)

Tuesday, May 3, 2005 9:27 PM CDT Two tidbits... 1) We got the very disappointing news today from Dr. B that our donor backed out. They plan to proceed with our 8/10 backup donor. 2) Today is Ty's Gotcha Day (exactly one year ago today he joined our family). We are the luckiest family in the world. Please remember all the families in all stages of this FA 'stuff'.

Sunday, May 1, 2005 2:19 PM Eastern Hello everyone. Thanks for checking in with us for an upate on Ty. First of all, a very big "Thank YOU!" to the people who donated prbc's and platelets last week. We can't do this without YOU! We ended up in the ER yesterday after lunch. Nothing that we needed to be in the ER for, just no out-patient labs open around here on the weekends, and I felt like we needed a stat CBC/platelets. Ty did NOT want to go (he felt fine) and the girls and Steve did not want us to go, but Ty had petechiae all over his body and his gums were oozing blood. The whole way there and the whole time we awaited the lab results, I was fighting with myself. (It was very hard to even call Dr. F on the weekend, esp since Ty was in no obvious distress.) Remember, Dad, when I was around 11 and broke my arm... on the way to the ER you said that my "arm BETTER be broken" and you stopped off at the house on the way... I think just to give me time to decide if I thought I really needed to go to the hospital (GRIN). THAT's how I felt while waiting in the ER, and was actually relieved that the numbers ended up being low. I think I'm really starting to feel the stress of it all being squarely on my shoulders. It's all 'my call'... and the more Ty's condition declines, the more nervous I am having that kind of 'power'. I'm second-guessing every little decision I make for Ty. In some crazy way I'll be glad when we're up in NY and it's someone else's responsibility for awhile. :) Soooooo... Ty's platelets ended up being 9K yesterday (normal is 140K - 400K), so it's good we went. (Ty was typically in the 20K's while on his Rx, but since off Rx, platelets continue to go down. After transfusion last Thursday he went up to 60K (WOW), only to be back down to 30K Monday, and 9K Saturday.) Ty got platelets yesterday. When the transfusion was nearly all done, he broke out in hives... so now he needs IV benadryl prior to all transfusions. I'll spare you all the details, but we ended up staying the night and getting red cells today. Next labs will probably be Wednesday or Thursday. Dr. F is not 'on call' this coming weekend, so we need to try to get everything taken care of while he's 'on' this week. We have no news about transplant. That's about all the news from here. PLEASE remember Kailee Wells in your thoughts and prayers (her transplant failed and she has no better prospects for a donor). Please remember little Emily who was transplanted recently and had a very serious stroke last week. Please remember all the other kids in transplant (Nathan, Yasameen) as well as Nicholas who is transfusion-dependent. And please never forget the families with empty arms and aching hearts. FA stinks.

Sunday, April 24, 2005 8:30 AM Eastern Well, I just spent 20 minutes typing an update and lost it, so here goes again... We got a call from the hospital around 2:30 PM yesterday asking us to be there around 3:15. We were in our room by 3:30, IV site and Type and Cross Match (again) a couple hours later, change of staff at 7PM, prbc arrived at 8PM and were started at 30 cc's per hour, gradually increasing to 100 cc's per hour over the next 2 hours. Somewhere around that time I realized that the prbc bag looked like it still had the same amount as an hour before, so I turned on the light and found that the tubing going from the machine to Ty had just clear liquid in it (NS, hung in case of emergency). So the nurse comes in, fiddles with the machine, and voila' the blood starts going back into the tubing. Only problem is, a hospital rule says that a blood bag can only be hung for 4 hours and must then be thrown out... so she has to increase the rate to 150 cc's and hover the rest of the night. But she did it, we were out of there around Midnight and home by 12:30. Ty's still sleeping. Our friends, the Farleys, arrived home from Taiwan Friday with children #14, 15 and 16 (along with the two they took with them). Ty was SO happy his best friend, Nathan, was home. They talked for a few minutes on the phone yesterday. And I'm so happy they're home because I missed MY friend, Kim (the mom), so much. I got to talk with her for about 45 minutes! They had a good but difficult trip (gone one week), with lost tickets and passports, sick kids, etc. Welcome home guys!! Ty just woke up and he's feeling GOOD! He is really grossed out about getting someone else's blood, but I spent about an hour Friday showing him his lab values over the last six years (Excel spreadsheet) and the gradual decline to the current state (hastened by stopping the Anadrol to give Ty's liver a rest before transplant). I explained that most adults would have difficulty even getting out BED with a hemoglobin of 8, and that his was 6.6. He's been feeling progressively worse for so long that he's forgotten what it feels like to feel good. He's perky and got a big ol' smile on his face, despite the mouth sores. He wants to go bike riding today! :) :) :) Well, that's a great note to end on. Thanks for stopping by. Please remember to pray for FA kids in all stages of this awful disease and for the families with empty arms and aching hearts. Karen (with Steve, Ty, Zoe and CeCe)

Friday, April 22, 2005 7:50 AM CDT **UPDATE 5pm LABS WBC 1.9 (4.5 - 13.5) RBC 1.81 (4.00 - 5.20) Hgb 6.6 (11.5 - 15.5) Platelets 64K (140K - 400K) (TRANSFUSED yesterday with platelets) Ty will be admitted tomorrow for transfusion of prbc's. Ty's really dragging and has a mouthful of really bad sores... poor guy. I'm going to contact Dr. B about the mouth sores. Maybe he can do something to help. We've exhausted the ideas of the PCP, local hem/onc and head/neck doc. We finished up at the local hospital around 2:20 yesterday afternoon, just in time to meet my mom at CeCe's school (thank you Mom for picking Zoe up for me and meeting us). The transfusion went well. Ended up being just one bag of platelets as it was a 'single donor bag'. Apparently they have to infuse 4 times that much when it's 'multi donor bags'. So, we were out of there much earlier than the nurses originally told us :) The isolation room finally became available around 10am. The IV team took about 2 more hours to get up there. There was a change of nurses and of course discharge paperwork takes at least an hour to complete... so all in all it was not too bad. Ty had stat labs this morning. Once we hear those results we'll know better what we're doing tonight. (Ty's Hgb on Monday was 7.3. Transfusion protocol for rbc's is anything below 7.0. They did not want to do it all at once yesterday because of fluid volume issues... which became a moot point once we found out that he only needed 110 cc's (rather than 440 cc's), but we were ready to get outta there by afternoon, so it was just as well. Ty's feeling about the same and went back to school today (his last day before starting homebound again). He still has a mouthful of sores that are really bugging him, but otherwise ok. He got busted by me last night for something he knows he's not supposed to do (and then he lied about it before finally conceding). I added ANOTHER week of restriction onto his current 'term' (which was supposed to end Tuesday morning). He had been so long without getting into trouble, and now he's been on restriction for either 3 or 4 weeks in a row (once this new one is complete)... I'm not even sure any more. I think in some strange way feels he really needs the 'security' of knowing that we will follow through with punishment for bad behavior. It's like a security blanket or something. Maybe he's feeling insecure about whether we'll be with him through thick and thin, you know, all those adoption issues an 11-y-o might conceive in his imagination. I just don't know. I hate that this last month he's been home he's been on restriction... and I hate that I can't trust him to do the right thing right now. Too bad today is his last school day or I'd pull out the old threat that 'if I can't trust you to do the right thing at home, then I certainly can't trust you to do the right thing at school... so maybe I should just accompany you and hold your hand all day'! (haha) I'll post when I have more info. Thanks for stopping in. Please remember those struggling in transplant, those with empty arms and aching hearts, and those facing these very issues in the next few years. Unless a cure is found for FA, it's unfortunately something nearly every FAmily in our group will eventually face. Harsh. ~Karen (for Steve, Ty, Zoe and CeCe)

Wednesday, April 20, 2005 8:44 AM CDT Please pray for Emily Clark and her family. Emily is 47 days post transplant, engrafted, and experiencing severe Graft Versus Host Disease (GVHD), stage 4, which is the worst... and rarely seen at the transplant center she's in. Her body is ravaged and she struggling. And Nicholas... sweet Nicholas. Please pray for him and his family as they struggle with yet another round of infections. As I'm typing this update I heard back from both Dr. Boulad and Dr. Foley. Ty will be admitted tomorrow morning into an isolation room at our local hospital, for transfusion (platelets). He should be discharged tomorrow as well. Transfusion protocol is prbc for hemoglobin less than 7 and platelets for platelets less than 20. Dr. B spoke with Sinda Lee (our transplant coordinator at MSKCC). Looks like Ty will be admitted to MSKCC on May 19 (for chemo and radiation), with transplant on May 26. We are to arrive at RMH 1 week early. Ty is to finish this week of school and then start homebound again. Dr. B suggested waiting until we get results of the donor's testing (scheduled next Monday, April 25th) before we get moving on flight and lodging arrangements. That's all for now. ~Karen (For Steve, Ty, Zoe and CeCe)

Sunday, April 17, 2005 5:21 PM Eastern UPDATE LABS 4/18/05 WBC 2.0 (4.5 - 13.5) RBC 2.05 (4.00 - 5.2) Hgb 7.4 (11.5 - 15.5) **Plates 17K (140K - 400K) ANC 460 (1500 - 8000) **Awaiting instructions from Dr. B Thanks for checking in with us. Ty is fine. Feeling about the same. We've had a great week (one we wouldn't have had had the transplant gone when orginally scheduled :) Ty went back to school Wednesday (for two weeks or so). His class is in Zoo School for the next few weeks and Ty is having a BLAST there. He chose the Laughing Kookaburra to do a report on is having fun learning about this funny bird. Most of all he's just happy being back with his friends. Speaking of friends, we're really missing our friends the Farleys who are in Taiwan right now adopting the 3 siblings they met two years ago while there adopting Nathan. (This bring the grand total of children for them up to 16... yes, they are AWESOME people!) Which brings me to how we first found out about Ty. The Farley mom, Kim, who I knew as a child (she was an 'only' child, no less!) had heard about this little boy named Meng-Wei in Taiwan. She knew that Wei was sick and she also knew that another American couple had adopted him and then changed their minds. She and Frank decided to arrange a meeting with Wei while in Taiwan adopting their Nathan. Kim emailed me (and phoned me, and emailed me, and phoned me) about how much we needed to find a forever family for Wei. Well, I knew right away that he would be perfect for our family, but Steve had already decided we were 'done' adding to our family. So we set about emailing and calling everyone we knew, trying to find a home for Wei. My sister and her husband were even considering bringing this awesome kid into their family when Steve, out of the blue, agreed he'd perfect for our family. This really was a "God thing" for our family. Sooooo, back to the Farleys... Nathan and Ty are now the best of friends and Ty is really missing Nathan (and even a little envious that Nathan's back in Taiwan for a week). We hope tomorrow's reunion and "Gotcha Day" with the 3 siblings goes smoothly and we're praying for safe return to the US for them. We've been swimming every single day this week except Tuesday (which is our late night due to dance class for the girls). The weather the last few days has been windy and chilly, but the water is a warm 70-something and just perfect. Ty can't stay in the pool as long as he used to (tires more easily and gets short of breath) but his swimming and diving continue to improve dramatically and he's much more comfortable in the water now. (I'll spare you having to read past journals to find out that when Ty first joined our family I threw him in the pool TWICE (and had to rescue him twice) before I realized he really couldn't swim!! Steve returned from Hawaii yesterday. This was a business trip that we've known about for years and had planned on making it a family vacation as well. But with Ty's immune status and impending transplant we are no longer able to fly commercial airlines, so the trip was off for everyone but Steve. He brought home four beautiful leis and some other goodies.... so sweet. I'll try to post some pictures later. Thurday we celebrated Zoe's Gotcha Day (5th anniversary of when we 'got her' in China) with cake and watching old home movies of her first year with us. Had to break out the tissues... but what's new, right?! I can't believe she's nearly six already. Where does the time go?! Labs will be drawn tomorrow morning. I'll post results soon as I get them. Please remember all the FAmilies with empty arms tonight. And please pray for those really struggling... like Nicholas who is back in the hospital with another bad infection. And let's remember to be thankful for all the good things, too... like Will's good bone marrow biopsy report this week. And please pray for Ty's donor and his transplant team. ~Karen (for Steve, Ty, Zoe and CeCe)

Tuesday, April 12, 2005 11:55am Eastern ***UPDATED 9:00pm 4/12/05 Heard from Dr. B this evening. There's been a bit more of a delay but things are being ironed out. Donor will be going 4/25 for testing. We should know all results a couple weeks after that and hopefully we'll be given the go ahead to proceed. Ty may return to school for about 2 weeks and he's to stay off his anadrol and continue weekly labs.*** Ty's labs 04/11/2005 WBC 2.1 (4.5-13.5) RBC 2.03 (4.0-5.20) Hemoglobin 7.6 (11.5-15.5) Platelets 24K (140K-400K) ANC 483 (1500-8000) 2 plus anisocytosis, 3 plus macrocytosis, few large platelets noted Retic - 1.8?R> Karen (for Steve, Ty, Zoe and CeCe)

Monday, April 4, 2005 7:47 PM CDT VERY QUICK UPDATE Hi everyone. I just heard from Dr. Boulad and got some answers. He says we're going to transplant ASAP (donor is only temporarily unavailable)... probably in the next few weeks. He wants Ty to remain off the anadrol, continue with weekly labs, and stay out of school (as influenza is still going around). More when I know more... ~Karen, Steve, Ty, Zoe and CeCe

Friday, April 1, 2005 12:34 AM CST And no, this is not an April Fool's Day joke... Well, I just got off the phone with our transplant coordinator, Sinda Lee. It seems we will not be going to transplant until probably May, as the donor is currently "unavailable". She says Dr. B. sent me an email about it a few days ago, but there are no emails in either my SPAM filter nor in Outlook since his correspondence of March 20. She said she forwarded a copy of the email on to me while I was talking to her, but it has yet to come across. Disappointing to say the least. I've spent the last month arranging (and HIRING... she starts Monday)childcare for my two little ones, stocking up on supplies here at home, buying and packing (groceries, cleaning supplies, paper products, etc) for the 6 month stay in NY, delegating tasks to my friends and family, etc. Also, Ty's last dose of anadrol was March 8 and he's been out of school for two weeks. Sheesh. More when I know more... Karen

Wednesday, March 23, 2005 10:00 PM ET Ty became a Christian tonight! Funny, nearly a year of living with us and it was a constant 'dance' between sharing our family's beliefs and respecting ten years of Buddhist teachings Ty grew up with. It almost seemed like coming from US it was like we were taking yet another familiar thing away from him. But last night I think he felt more empowered and able to decide for himself. It's amazing it took just one night with his best friend, Nathan (in a Baptist church), Nathan's dad, a great teacher named Suzanne (and myself) in the room for it all to change for Ty. I'm sure there is still some ambivalence for Ty, but he asked LOTS of questions about the prayers we pray every night (rosary) and other aspects of spirituality in general on the car ride home. Just thought I'd share the good news. Karen (for Steve, Ty, ZoZo and CeCe)

Monday, March 21, 2005 1:00 PM CST Hello everyone. Well, not too much to report here. Ty's doing well and he and I both have managed to elude the crud that's going on all around us. That's what happens when you have a crazy mom running around with soap, hand sanitizer, masks and antimicrobial cleaners. Even so, CeCe was sick recently for a week with a very high fever, cough, aches. Then Steve got back from China last weekend with a sore throat, aches and jet-lag. Now Zoe awakened this morning with a fever, cough and aches all over. So, Ty and I are bound to get it (UGH!!) which would likely preclude me from being with Ty during chemo/radiation/transplant :( Sheesh :( Ty got to hang out with his best friend, Nathan, all weekend (sorry Kim, that means your family will probably be passing it around next!) They had a blast doing armpit noises, knee noises, archery, old bullet-hunting, pillow fights, dirty sock fights, cooking, and of course video games. Oh, and we went to see ROBOTS at the movie theater. Ty was in seventh heaven and did NOT want to drop Nathan off at home yesterday. Hopefully the boys can see each other again Wednesday night at Nathan's church. Nathan's dad teaches Nathan's church class on Wed nights, but he's going to just take the two boys off by themselves to do some 'private teaching' so to speak... since Ty shouldn't be in groups of people right before transplant. Ty came to us Buddhist (last May...so he spent his first 10 years of life Buddhist). I bought him a Chinese/English version of the Holy Bible, and he loves reading the stories in there. But to him, they're just good stories. I grew up Southern Baptist, then went to Catholic Mass for the second decade of my life, and in my third decade (to present) go to Episcopal church with my husband. It's a very difficult situation (mostly in my own head probably), since Ty's belief's are as deeply rooted in Buddhism as our family's are in Christianity. And while it's not fair to try to make him believe something very different now, I'd be lying if I said I didn't want him to believe what we believe. But, you know how peer pressure can be a good thing sometimes... so I'm hoping and praying.... We were planning to go back to Maggie Valley area for a mini-vacation before transplant (during Spring Break starting this coming Saturday). Not sure how that's gonna work out with Zoe being sick now and who knows who else will have it by then. I spoke to Miss Anita again today and it looks like she is committed to helping out with the girls full-time while I'm away. Thank you! I hope this works out as beautifully as I think it will, so that my mom and sister can remain 'Mema' and 'Aunt Donna' instead of having to be rule-enforcers, vegetable-feeders, and other mean things like us mommies have to be sometimes :) I am so thankful to everyone who's offered to help. We couldn't do it without you! And my girls absolutely LOVE Miss Anita and it's obviously mutual :) Now we just have to agree on a fee (she said she'd do it for free and she probably WOULD... but I wouldn't do that to her :) Ty's getting labs done weekly now. Last counts (Fri 3/18): WBC 2.7 (normal 2.5 - 13.5) RBC 2.24 (4.00 - 5.20) Hgb 8.2 (11.5 - 15.5) Platelets 39,000 (140,000-400,000) ANC 702 (above 1000) Retic 3.9 (0.5 - 2.5) COMMENTS: 2 aniso, 3 macro, 2 poikilo, 1 teardrop, nucleated RBCs are high at 1/100 WBC Ty's last dose of anadrol was on March 8 (giving his liver a rest before transplant). Ty's last day of school was last Friday. He's bummed and missing his friends already. I started shopping for our long stay at RMH in NYC. Still have lots to buy (and pack and ship). Also have to shop for our vacation food (we are vegan so have to pretty much take all our meals). Lots to get done this week! Well, that was longer than I thought it would be! Guess there was stuff to report after all... Thanks for reading all the way to the end. Please continue to pray for all the FA families in all stages of this dreadful FA. Karen (for Steve, Ty, Zoe and CeCe)

Tuesday, March 8, 2005 4:25 PM ET Hi everyone. Thanks for checking in. I heard from Dr. B today. Seems the donor will be available in April for transplant. Ty and I will head to NY the first week of April. He'll be admitted the second (or third) week for chemo and radiation. And he'll be transplanted the third (or fourth) week of April. Ty is to stop the anadrol (today was last dose) to give his liver a rest before transplant. Ty's last day of school will probably be March 18th. The five of us are hoping to do something fun during Spring Break (last week of March, just before we head to NY)... something that doesn't involve crowds :) Please remember all the FA families in all stages of this journey. Thanks again for checking in on Ty. Karen (for Steve, Ty, ZoZo and CeCe)

Friday, March 4, 2005 5:50 AM CST Well, we're still waiting to hear from Dr. Boulad. Don't have a clue what's up. We thought we would hear from him Tuesday night . I've emailed/called twice to remind them I need to hear from him. When we last spoke to Dr. Boulad we were told Ty could go to school Monday and Tuesday and he'd let us know Tuesday about stopping school pre-transplant. I didn't think Ty would be in school after Tuesday, and with all the stuff going around, I'm nervous about him being there. I got called 9am Tuesday, his first day back after our NY trip because we got stuck in SC overnight Sunday due to bad weather, saying I had to come pick him up because he was vomiting. Come to find out they had the kids running track in PE, Ty stopped to rest, threw up once. He never felt bad, never had a fever, never threw up again... so thankfully it was nothing. But there is some bad GI bug going around and Ty had been the second person to the clinic that morning having vomited. Ty and Zoe are feeling ok. CeCe awakened today with a 103.9 temp~ poor baby... she's just feeling PUNY. Here we go again... Ty and I need to stay HEALTHY before transplant. I am SO AFRAID that I'm going to get sick and then won't be allowed to stay with Ty for transplant. Please pray that Ty and I don't get it this time 'round. I should have bought stock in Purell hand sanitizer as we go through buckets around here! Steve leaves tomorrow morning for China for a week. Worst possible time for him to go, but he has to. We'll miss him, esp since it's one of our last weeks home before transplant.

Friday, February 25, 2005 9:43 AM CST ****UPDATE (Saturday 10 A.M.): Heard from Dr. B last night. He says Ty's bone marrow is extremely hypocellular (as opposed to 'perfectly normal' as reported by our local hem/onc in December... perhaps you remember his comments that this could be our 'Christmas miracle'?!) Also got a little bit of bad news, albeit not totally unexpected (since as you may recall Ty's November bone marrow cytogenetics showed a change from 'normal cytogenetics' to 'inversion of all Y chromosomes'; any change is likely a harbinger of bad things to come... just a matter of 'when'). Anyhow, it seems some of the cells have now progressed to MDS (myelodysplastic syndrome, or pre-leukemia). It's probably 5 percent less of the cells, though, so it's still early, but confirmation that transplant now is definitely the thing to do. Dr. B says we can come home tomorrow (Sunday)and Ty can go back to school Monday and Tuesday. Dr. B will call us Tuesday with more finalized results of pathology findings (these are just pre-liminary results he called me with last night) and we'll know the results of the cytogenetics later in the week. We'll set a date for transplant once we know the final path results and Dr. B will decide Tuesday whether or not Ty can continue with school. He did say that since Ty's liver enzymes are so elevated, he will have to discontinue his anadrol before transplant to give his liver a rest. We'll know more about that later in the week as well. That's about all for now. Angel Flight is picking us up from Teterboro/Signature in NJ tomorrow morning at 9 A.M. and flying us to ??? somewhere. I know we have one lay-over in Savannah but don't have any more information than that. Hi everyone. Thanks for checking in. Well, it seems it depends on the person you ask around here, but I've been allowed to plug my own laptop into the ethernet connection in the computer room twice. On two different occassions I've been told it's not allowed. It makes no sense. They have a computer room with about 16 computers. Usually only 1 or 2 other people in here at any given time. You'd think they'd RATHER you use your own computer so that you don't download JUNK onto theirs, yet there is a sign on the computer room door reading 'no laptops allowed'. A really nice worker last night told me that they are installing ethernet connections in all the rooms, that the first couple floors already have them, and that all rooms should have them in probably another month or so. So, hopefully getting online on my laptop (with webcam capabilities) will not be an issue when we're back up here next month 'doing hard time', as the folks in transplant call it . So yesterday morning we found out that all testing done to this point is as expected with some exceptions (ie Ty's liver enzymes being more elevated than usual; also found out he has scoliosis, but not of concern for transplant; also verified last August's finding that Ty is CMV-positive which is of concern for transplant... but they'll just have to be hypervigilent in staying on top of any lung infections caused by this). Spent yesterday having bone marrow aspirations and biopsies (and waking up from anaesthesia). Ty is still sore today, but it's not keeping him from playing in the SNOW! We expected a call yesterday from Dr. Boulad with the pathology results (after he had time to look at the biopsies), but never heard. That means we still don't know for sure if we can come home this weekend. I did hear from the pilot last night who is flying our first leg home and looks like we're set to leave out of Tetering in NJ on Sunday morning at 9am (once cleared by Dr. B). Hopefully Dr. B will call soon with results, ok to go home and decision on whether or not Ty can return to school between now and transplant. So, the plan now is that our transplant coordinators will contact our donor for couseling, coordination of timing of transplant, and start of medication to make him/her produce more stem cells. Let the games begin :) So, it SNOWED last night and I had one happy and excited boy on my hands (his first snow!). We got out in it last night and made snow angels, had snowball fights and built a hideously inadequate tiny little snowman (yes, we took some pictures, but I'm not allowed to hook my laptop up in here to upload one right now). When we awakened this morning there were about 6 inches of snow so out we romped onto one of the terraces before anyone else was even up to see how beautiful it was. We built a somewhat less hideous and larger snowman before going back inside to shower, dress and head out for breakfast. Oh, and last night we finally met up with 'the other Ty from Florida', who coincidentally is in the room right next door to ours. He is an awesome guy. We hung out with him in the gameroom for a couple hours. So, signing off until I have more news to report. Thanks for checking in. Thanks for all the prayers and emails and well-wishes and phone calls. (I can read emails on these computers, but I can't respond for some reason... they just bounce back to me). Love you all, Karen (and Ty)

Wednesday, February 23, 2005 5:46 PM CST Hi everyone. Thanks for checking in on Ty. We arrived last night thanks to Cair Flight and Angel Flights. Things couldn't have gone smoother. We are so grateful to all the pilots who took time away from their families and lives to help us out. You guys rock! We got to see something really fun between our first and second flights... one of the Glacier Girls taking off (and then buzzing us again)! This is one of many planes that was buried deep in the ice for a long time. It was recovered, refurbished, and rather than being stuck in some museum it's back in the air. Pretty wild! We just arrived back at RMH after a very long day of pre-transplant testing: chest x-rays, echo, PFTs, CTs, blood work, mouth cultures, doctors visit, etc. We ate breakfast at 7am and then nothing again until dinner just now (at another local Indian restaurant...no, we're not supposed to be eating out, but...). Ty was NPO all day for the CTs, and then there was a mix-up, post-poning the CTs by a couple hours, so... needless to say, we were about starved come dinner time! As usual MSKCC is wonderful. If you have to go through something like this, it couldn't be nicer. Their facility has a huge play room with video games, movies, toys, books, games, computers, etc. Tomorrow we have more testing much of the day (bone marrow aspirates and biopsies...NPO again, poor boy) and then we go back to see Dr. Boulad again for all the results of everything to date. We should find out the transplant time frame, protocols and everything else we need/want to know then. Then they will contact our donor to make all the necessary arrangements with him/her. We're holding our breath about whether or not Ty can return to school between now and transplant, pending all these test results. He sure wants to. Sorry I've not been good about being in touch. Cell phones aren't supposed to be on in the telemetry and testing areas of the hospital (pretty much everywhere), and while there apparently are ethernet hookups in oncology, we never know how long we'll be waiting in any one place, so it's not worked out to get all hooked up to chat. Maybe tomorrow will be different. Doubtful. (I'm on an RMH computer now... no ethernet available in RMH rooms... just sloooooooooow dial-up. MSKCC gave us some free tickets to some museums, so maybe we'll get to do something like that while we're here this trip. We drove by Central Park coming in to town last night and saw the big art display that was featured in Smithsonian magazine (I believe that's the mag Steve showed me). Hopefully we'll get to walk around the Park while here this trip. Also, if Ty's up to it, I'd like to try to get a helicopter ride around the Statue of Liberty. We tried last time, but he was too uncomfortable the day after testing to make it. Dr. B asked us to avoid everyone at RMH as there are some viruses going around (RSV, etc). Ty is still a bit sick, so he's been wearing a mask constantly. He's in the gameroom, but he's the only one right now. So, that's it in a nutshell. Until next time... Karen (and Ty) in NYC

Sunday, February 20, 2005 7:54 AM CST Well, we're winding down (or up?) for our trip to NY for pre-transplant testing. I have not heard back from Cair Flight yet with finalized flight plans, so I'm a wee bit nervous about all that. They've been working on this trip since before the 8th, but hopefully it will all come together. We are supposed to leave Tuesday the 22nd at 8am from Melbourne airport. I've purchased stuff to take with us, as the RMH in NY does not have the nicest/cleanest rooms (but the rooms are definitely a great price and we're so thankful that we get to stay there again!!). I bought some mattress covers, some mattress pads, sheets, pillow covers, pillow protectors and pillow cases. I plan to just leave most of this stuff there and send more up next time we go (in a couple weeks for transplant). We can only take two carry-ons on these tiny planes, so it'll be tight (since I also need to take computer, camera, etc... not to mention winter clothing and food), but it'll come together. Ty and I have been sick since about Tuesday, but we're both on the mend now. Thankfully no one else in the house has had it (fever and cold symptoms), so hopefully it won't go round and round this time :) HUGE thanks to my hubby, mom, dad, sisters and kids' schools for working together to make the coming week happen as pain-free for my girls as possible. I know it will be much harder on me (missing them) than on them, as they'll be so spoiled/loved while I'm away! Special, special prayers going up for the McDuffie family as they say goodbye to sweet Davaan. Prayers going up for Emily and Anna as they head to transplant this month. Prayers going up for Ty Sanders, Johnathan and Yasameen as they continue to recover from their transplants. Prayers going up for the families of Charlotte, Amulya, Coley, and Abbey as they continue to miss God's newest little angels. And prayers going up for all our other FA families in all stages of this journey. You all are so special to us, such inspirations! Thanks to everyone who's supported us to this point. Your personal experiences, well-wishes and prayers continue to help us through. Karen (for Steve, Ty, Zoe and CeCe)

Friday, February 11, 2005 5:14 PM CST I received our letter for Cair Flight today from Dr. Boulad and it says we'll be going to transplant in 3 to 5 weeks. We 'knew' it would be in March (or so), but seeing it in writing is pretty sobering. Wow. Ty's Monday labs are about the same... from memory... platelets 35K WBC 1.9 RBC 2.something Hgb 8.something ANC 444 (back on strict neutropenic precautions) Today was Grandparents Day at school. Ty and Zoe both LOVED having Poppy and Mema go to their classrooms. Thanks Mema and Poppy! Prayers going up for Elana's family as they struggle with missing their beautiful angel baby. Also for all our FA families missing their 'babies', and FA and other families in all stages of diseases and life. Thanks to all our family and friends for all your help, well wishes and prayers. We love you all. Karen (for Steve, Ty, Zoe and CeCe)

Monday, February 7, 2005 5:11 PM CST Whew! We finally have dates for Ty's NY testing at MSKCC. We will leave on the 22nd (Cair Flight) and will have testing on the 23rd, 24th and 25th. I'm hoping we can at least go see the Statue of Liberty while there this time (maybe Saturday, since it may be our last chance for quite some time) and return Sunday. We should know the specifics of transplant after this visit. We'll be staying at RMH, of course. Ty went for labs this morning. He just finished a 10-day course of antibiotics for fever, sores on both thighs and on one hand, and mouth sores (craters!). Everything's cleared up except he still has some (smaller) sores in his mouth. It's Chinese New Year time (Wednesday the 9th is the actual day). We had our big Lunar New Year party for Families with Asian Children (FAC) on Saturday. Good turnout...about 160 people. Crafts, food, talent show (Ty did Chinese yo-yo with his friend Nathan; Zoe and CeCe did a Chinese dance with several other girls; CeCe sang ABC song solo), chopstick races, story time, and dragon parade. It was fun... I'm just glad it's over with, so I have another 9 months to 'rest' before we begin preparations for the next CNY party. Sunday we went to another CNY party at a local restaurant. The owners, Jimmy and Grace, are so generous and kind to our FAC group, always throwing a big CNY party for us (free!). And this week I will go to each of the kids' classrooms to talk about CNY and pass out goodies :) I love this stuff! That's about all that's happening around here. I'll post Ty's numbers as soon as I hear.

Wednesday, January 26, 2005 8:32 AM CST 01/27/05 8:17pm UPDATE Labs are about the same; still awaiting blood culture results. AND (drum roll please) we just got home from an awards ceremony, where Ty placed FIFTH out of all the fifth graders for his science research project! I'm so very proud of him. He worked really, really, really hard on this project AND (a couple months ago when it was completed) Ty spoke/read/wrote even LESS English than he does now. He did the project in English and in Chinese. Hi everyone. Thanks for checking in on Ty. He's doing about the same overall. Had to take him to the doctor yesterday. He's just not feeling right. Nothing huge that stands out, just lots of little things. He has this weird 'rash' on his thighs and one hand. Very painful, not itchy. Looks like bug bites to me (although very odd place), but doctor says definitely not bug bites. Probably not shingles, since bilateral and doesn't really look herpetic. Local has no idea what this could be. He's going to consult with a friend of his who is a hematologist and dermatologist. Also, horrible mouth crater sores again. Low grade temp 99.0. And feeling like he's going to throw up. Oh, and I got called to pick him up from school yesterday for the weirdest thing... a spontaneous bleed on his head... by the time I got to the school, about 15 minutes after they called me, it had stopped bleeding. It's tiny (about the size of an eraser). Ty says he didn't get hit in the head, nor did he scratch it or in any other way injure it. Odd. Doctor did stat blood cultures and CBC and started Ty on a 10-day course of antibiotics. If cultures come back positive, Ty will have to be admitted for IV antibiotics, etc. I'd be surprised if they come back positive as Ty, while not feeling great, has definitely felt way worse than this before. And he actually smiled this morning...after only 2 doses of antibiotics in him yesterday. My friend, Tonya, a breast cancer survivor, sent Ty her "Survivor buff" and with it a note saying, "From one survivor to another" :) So sweet! Makes me cry. Ty won't even let anyone else try it on, he loves it so much. Apparently Dr. Boulad wants to talk to me directly again before scheduling our next trip to NY. I called his secretary again today to remind him, as we've been waiting since last week for an appointment with him. That's about all the news here. More when I get Ty's lab results in and when I hear from NY. Please remember all the FA and cancer families in your prayers. Karen (for Steve, Ty, ZoZo and CeCe)

Monday, January 10, 2005 8:20 AM CST Happy Monday! Ty's labs last Monday, the 3rd, were back up where we're used to seeing them (whew!). He's feeling really well right now, with only a couple small mouth sores. More labs next Monday, the 17th. I've been working with some AngelFlight type places to arrange our upcoming flights to/from NY. Looks like we'll go to NY in Feb for more bone marrow studies and other tests, then probably March for transplant. Steve bought me a webcam so we could 'video conference' during the months Ty and I will be in NY, away from family and friends. Hopefully we'll get lots of folks signed up with .NET passports (free!) plus a messenger service (like AOL IM, or Windows Messenger, or whatever) so we can IM and/or video-conference with everyone. That should help lessen the stress for me a bit :) Lunar New Year is coming up soon, and since we have three children born in Asia, it's a big celebration for us. We are already scheduled to attend THREE LNY parties (one of which I'm involved with planning). Can't wait! This is "year of the cock/rooster" and Ty was born in a "year of the cock/rooster", so he's especially happy. The Chinese zodiac has 12 animals, so every 12 years they repeat. Please remember all the families missing their 'babies'... they can surely use your prayers. Please also remember Ty in your prayers. This transplant stuff is so scary. Thank you. Karen (for Steve, CeCe, Zoe and Ty)

Tuesday, December 28, 2004 12:28 AM CST ***UPDATE 12/29/04 4:50 pm I heard back from Dr. B in NY today. Looks like we'll be going to transplant March-October (unless anything happens between now and then to necessitate sooner transplant). We'll re-check labs next week and if ANC still below 100 we'll start G-CSF (Dr. B. spoke with some geneticists/ researchers who feel that G-CSF is NOT contraindicated when Y chromosome changes show up. And if it prevents us from having to go to transplant during cold/flu season, all the better. He wants to see us in Feb (or perhaps Jan, depending on clinical picture), but says we must not take a commercial flight. So hopefully we can get angel-flights or else we'll have to drive. Ugh. ~ Karen 12/28/04 Well, lots of little bits of news. 1) I received word from Ty's doctors in Taiwan that after reviewing Ty's previous cytogenetic bone marrow studies, this Nov 2004 abnormality is definitely a new finding. 2) Ty's lab results from yesterday are: WBC 2.1 (4.5 - 13.5) RBC 2.63 (4.0 - 5.2) HGB 9.0 (11.5 - 15.5) Plates 38K (140K - 400K) ANC 46 (yes, you read that right) (1500 - 8000) 3) Local hem/onc called and said preliminary BM aspirates done 12-22-04 show, and I quote, "normocellular marrow for age group (90 percent) with trilineage hematopoiesis" ?!?!?! (Every single other BM aspirate done since 1999 shows "markedly hypocellular marrow with panmyeloid hypoplasia with minimal hematopoietic cellular elements of any lineage", including the one performed 11-22-04. As Ty does not have a mosaic form of FA, Dr. B in NY says his gut feeling is that there has been a mix-up in the lab (OR a Christmas miracle, but very poor labs are not consistent with 'normal BM'). We're still awaiting the pathology and the cytogenetics reports from the 12-22 bm studies. SO, Dr. B was kind enough to call me today to discuss and he said it may be time to move forward. I asked him if he meant with G-CSF. He said no, with transplant. I sure wasn't ready to hear that. He said that G-CSF isn't the best option for someone with cytogenetic changes, and with all the recent mouth and anal sores, sickness, etc. in conjunction with labs and BM studies, it may be time. He's going to await the cytogenetics of this last BM and discuss the entire clinical picture with other two docs (local hem/onc and local pcp) and then call me with his recommendation. He wants us to go back to NY in January rather than February for follow-up (we were there last/first time in August of this year). On pins and needles, esp since we don't have a good match for a back-up donor. Thanks for checking in on Ty. I'll post an update as soon as I hear back from Dr. B. Please keep Ty and all the FA families in your thoughts and prayers. Karen (for Steve, Ty, Zoe and CeCe)

Friday, December 24, 2004 10:09 AM CST *****NOT APPROPRIATE FOR SMALL CHILDREN... SANTA TALK***** As this is Ty's first Christmas in America, and since Santa apparently doesn't visit Taiwan, we really wanted Ty to believe in the magic of Santa at least this one year. Well, Ty just sent an email to his Taiwan foster brother. I translated it from Chinese into English using a computer program. While it doesn't translate perfectly, you can get the gist of it below: >>>>Hi elder brother I am Li Meng Weihen happily receive my your letter to wish you Christmas day to be joyful Tonight Santa Claus can arrive our home to gather two sister while me in to sleep puts the gift again under the Christmas tree. Li Meng great presents respectfully me to let elder brother live Mi Ts'unwan<<<< :) :) :) Ty's been saying for the last couple days that he's scared of tonight because he's afraid Santa will leave him only "dirty rocks" (coal), to which we reply that that's not so bad since he already has plenty of other presents under the tree. But I still wasn't convinced he really believed. Now I am :) Too cute! Ty was in Arnold Palmer on Dec 22 for more bone marrow studies. I'll hopefully get some preliminary reports today, so that we won't have to go through the holidays not knowing. UPDATE: Drat! They're closed until Monday. Otherwise, he's healing well from mouth and anal sores and generally feeling much, much better again. Wishing you all a very Blessed and Merry Christmas. Continuing to hold up Hayley's and Trey's families in prayer as they face these next few days dealing with the loss of their precious angels this past week (cancer). Also, praying for peace, health and happiness for all our FA families/friends.

Wednesday, December 15, 2004 9:52 AM CST Ty finished his course of Amox-Clav last week and is still sick / sick again. His throat soreness never totally went away, and this morning his temp was 101.9. His mouth sores are much better, nearly gone. He's 'draggy', but otherwise not doing too badly. Tylenol is keeping his temp around 100 now. He's going to see local PCP today. I spoke with Ty's transplant coordinator, Sinda Lee at MSKCC, on Dec 7th and was told that the 10/10 match will be kept on hold for us. Her computers search daily for a back-up donor for Ty and she must query the Asian registry every three months for a search. I just left a message for her today and am awaiting a call back about getting my two girls (Zoe and CeCe, both from China) tested privately to see if they are a match for Ty OR for Kailee Wells (adopted from China), who also is in desperate need of a BMT... see http://www.kaileegetwells.com/ to read her story. On Dec 7th I also spoke Ann Carlson at the Rockefeller Univ Hosp Int'l FA Registry (IFAR). She said that Ty's cells finally started growing really well and they had enough cells the previous week, so sent on to collaborator. We should know Ty's complementation group (type of FA) in about 4 more weeks. I also contacted Ty's Taiwan doctors last week. They are going to check old records to try to determine whether or not Ty did indeed have 'XY normal male karyotype' as stated on all previous bone marrow studies done in Taiwan. I've done lots of research on this, and what seems to be key in determining the gravity of the finding on 11/22/04's bone marrow aspirates is whether or not it is a new finding or if he's had it all along. They will get back to me soon, I hope, with the answer. Here is one time I'm hoping all those pathologists made mistakes along the way. LABS 12/13/04 WBC 2.0 RBC 2.53 Hgb 9.1 Plate 38 ANC 1232 Thank you for checking in on Ty. Please keep all the FA families in your thoughts and prayers. Blessings! Karen (for Ty, Zoe, CeCe and Steve)

Tuesday, November 30, 2004 12:44 PM EST ADDENDUM 12/2/04: I heard from our local hem/onc tonight with the cytogenetic results from Ty's last BM aspiration done 11/22. Cytogenetics: 46,X, inv(Y)(p11.2q11.2)?c[13] Abnormal karyotype, male. Interpretation: All mitotic cells collected for cytogenetic analysis are characterized by a pericentric inversion of the Y chromosome. The rearrangement observed in all cells in this analysis may be constitutional in origin, and unrelated to a neoplastic process. If clinically indicated, further testing by.... This specimen failed to yield sufficient mitotic cells for a complete 20-cell analysis. Our Local hem/onc called Dr. Boulad, who is unsure of the clinical significance in an FA patient of this new finding in Ty. Everyone's looking into it further and repeat aspirate/biopsies will be done Dec 22. (They know that inversions on certain chromosomes, like chromosomes 5 and 7 are indicative of cancer; they're just not familiar with it being on the Y) Hematopathology: (about the same as always): Markedly hypocellular marrow with panmyeloid hypoplasia compatible with herediatry anemia syndrome. Peripheral blood: No circulating blasts or cells with cytologic dysplastic features noted. Marrow: markedly hypocellular with minimal hematopoietic cellular elements of any type. No disproportionate increase in blasts is present. No atypical cells identified. ************WARNING************* SANTA TALK -- MAY NOT BE APPROPRIATE FOR SMALL CHILDREN! It's been such a fun last couple of months. Ty's now experienced his very first Halloween and his very first Thanksgiving. He also, for the the very first time, sat on Santa's lap over this past weekend for pictures. We've been reading lots of books about Christmas, talking about Santa, and we saw Polar Express this past weekend. He says Santa never went to anyone's home in Taiwan. He BARELY believes, but he SO WANTS to believe . He asked for a microscope when asked what he'd like for Santa to bring him this year. Ty then grilled us over and over and over the rest of the evening about various aspects of Santa. I think he's just barely convinced. This is the same Santa that's come to our house the last 4 years for pictures with the girls... and we actually had to smear some white clown make-up in his brows and on his face to help with the disguise, as 5-y-o Zoe, while looking at previous years pictures, exclaimed that Santa looks a bit like Daddy! Daddy, for some reason, can never seem to show up when Santa is here, but he'll try harder next year, as Santa was pretty upset about it this time. Ty's sick right now with some kind of bug (along with CeCe and me). It's only the second time he's been sick since he's been with us (almost 7 months now!), which is very surprising since he's the one in bone marrow failure. The rest of us have each been sick with 'colds' about 7 times in 7 months. Go figure! He also has some really nasty mouth sores again, poor guy. I made a discovery this go'round, though. I can't use the tympanic (ear-type) thermometers on Ty... only the oral ones. For some reason the ear thermometer won't register accurately on him. Labs 11/29/04: WBC 2.1 (4.5-13.5) RBC 2.62 (4.00-5.20) Hgb 9.4 (11.5-15.5) Plates 33K (130K-400K) ANC 840 (1500-8000) Please pray for all the the families dealing with FA... those in transplant, those awaiting transplant, those missing their little angels, & those doing well. Karen (for Steve, Zoe, CeCe and Ty)

Tuesday, November 30, 2004 10:03 AM CST I wanted to clean up and shorten the size of the home page, so thought I'd cut and paste the info into a journal entry. So here's what was on there: FAMILY HISTORY 10.5-y-o Ty joined our family on May 3, 2004 in Taipei, Taiwan, ROC. He turned 11 in October 2004. DIAGNOSED Fanconi Anemia/Aplastic Anemia July 2,1999 but CBC abnormalities discovered June 1996 and BM abnormalities first discovered December 19, 1996 OBVIOUS SIGNS slight microphthalmia (small eyes) slight microcephaly (small head) skin hyperpigmentation cafe au'lait spots flattened base of thumbs on palms lots of gray/white hair (since before age 10!) hypermobility small unrepaired umbilical hernia undescended testicles (repaired) SURGERIES bilateral orchiopexy (for undescended testicles) June 1996 CURRENT TREATMENT Anadrol 50 mg po qd 06/04 - present Folic Acid 2.5mg po qd 08/04 - present Animal Parade multi-vitamins 2 qd 05/04 - present **Durabolin 07/99-06/04 **Prednisone 07/03-09/04 PRN DENTAL PROPHYLAXIS Amoxicillin 500 mg 4 po one hour prior PRN Tobradex ophthalmic ointment bid for sty PRN Minocycline 100mg (in water) swish/spit bid for mouth sores PRN Magic Mouthwash swish/spit 1 teaspoon tid for mouth sores BLOOD TRANSFUSIONS first and only PRBC transfusion that we know of was in Taiwan 10-15-03 RECENT TESTING Abdominal/renal ultrasound 06-02-04 - normal EKG 06-02-04 - normal Echocardiogram 06-02-04 - mild tricuspid, mitral and aortic regurgitation Bone marrow biopsies/aspirates 08/04 - markedly hypocellular aspirate consists of stromal elements.Majority of cells seen are peripheral blood cells. Myeloid and erythroid elements are present in all stages of maturation. Few osteoblasts and osteoclasts are noted. CURRENT LABS 11/01/04 WBC 2.0 (4.5-13.5) RBC 2.46 (4.00-5.20) Hgb 8.8 (11.5-15.5) Platelets 30k (140k-400k) ANC 680 (1500-8000) DIET Vegan, neutropenic diet GUESTBOOK Please sign the guest book for us so we know you've been to visit. FAMILY WEBSITE http://www.woodcellar.com/family DONATIONS ***The request to donate to Caringbridge is not from me and I can't remove it from this website. We prefer that you donate to Fanconi Anemia Research Fund, put TEAM TY on the memo line, and mail to Karen Magrath at PO Box 411572, Melbourne, FL 32941-1572. Thank you!***

Tuesday, November 2, 2004 9:01 PM CST I'm happy to report that Ty's ANC is much better (see above... up from 108 last week). Other lab values about the same. He's still feeling fine. They're saying the drop is likely 1) 'normal fluctuation' (700 points in one month would not seem like a lot if he were within normal limits, but ending up so far below 500 was scary for me) and 2) due to coming off the prednisone which he had been on over a year (he was originally put on this steroid while in Taiwan DUE to low ANC). We saw Dr. Giusti (Orlando hem/onc) yesterday. Ty's going back into the hospital 11/22 for more bone marrow studies and liver/abdominal ultrasound. No changes in meds/treatments at present. We saw Dr. Foley (new PCP) today. Really great guy and wonderful staff. Ty is his second FA patient. Even so, Dr. Foley said he freaked when he saw Ty's numbers last week. Oh, and he actually verbalized what we all know... that he's really just the 'pawn' we need to get referrals and RX's and lab orders and so on (and he's happy to do it)... that the hem/oncs and other specialists will be making most if not all the calls. He even said that unless it's a "code-situation-type-emergency", we should make the 1.5-hour car ride to Arnold Palmer Hospital in Orlando if Ty needs hospitalization, because the local docs in the local hospitals won't have a clue what to do with Ty. We discussed Dr. Boulad's recommendations and how they fit with what Dr. Foley is able/willing to do. He seems very agreeable to everything. Did I mention how wonderful his staff is?! They have a 24-hour-turn-around on getting referrals approved (compared with the previous PCP's office who was taking on AVERAGE 10 business days!) Also, they are excellent about faxing me Ty's numbers right when they receive them from the lab. It's SO nice not having the added stress of all the office problems to deal with. Thursday we see the head/neck guy, Dr. Go (new doc for Ty). And Friday we go back to Dr. Carakushansky, Ty's endocrinologist. Hope to get that down to only twice a year after this visit :) Ty went rock-climbing here (harnessed, of course, and indoors) last week. He tried it out at Camp Sunshine this summer and LOVED it. Also, he now has archery equipment, so hope to get him in for a couple lessons this week or next (he tried archery at Camp Sunshine and that's about all he can talk about these days!). It was pretty difficult finding a sport Ty could physically DO and one he could do with his doctors' blessings (no contact, little sun, little danger of injury). I'm just glad that school homework has let up some so we actually have TIME to do some fun stuff again :) Ty's in 5th grade at Sherwood and his English is coming along fabulously. He made mostly A's (1 B) on his first report card. He's receiving Title 1 services (ESoL: English as a Second Language), which means he gets pulled from class for some one-on-one in language/reading skills a couple times a week. This was Ty's first year trick-or-treating and he had a blast! It only took one house for him to get the hang of it and into the spirit of it. Of course, we don't eat sugar, so we just turned around and handed it all back out again (I bought some candy my kids can eat :) Please keep those prayers coming for the Stuarts and the Levines who both lost their very young daughters last month to FA. And please pray for ALL the families struggling with FA. We so appreciate all the guestbook entries. Thank you for taking the time to do that :) Until next update... Karen (for Steve, Ty, Zoe and CeCe)

Wednesday, October 27, 2004 7:53 PM CDT I spoke with Dr. Boulad today. I was much more concerned about Ty's low ANC (108!) than Dr. B was. He suggested re-checking it in one week. If still below 500, then will start G-CSF (Neupogen) trial, and keep at minimum effective dose (to keep ANC above 500). If G-CSF doesn't keep ANC above 500, then Dr. B said we'll be looking at transplant sooner than expected. However, he does NOT want to go to transplant during respiratory illness season (cold/flu), so need to try to postpone at least as long as March/April. I think, considering Ty's ANC (which is a direct reflection of his infection-fighting cabability) has gone from 858 on 9/29, to 456 on 10/12, to 342 on 10/21, to 108 on 10/26... a drop of 750 in one month (with normal being 1500 - 6500)... I'm going to have his lab rechecked in 4 days... and then again in another 4 days or so. If he were to continue on the current trend, his ANC would be 0 in 4 days. Dr. B made no other changes (ie school, etc)... just continue as we have been with strict neutropenic precautions. Until next time... Thanks for checking in on Ty. Please pray for all the families struggling with FA, especially Abbey's and Coley's families, as they struggle with the deaths of these two sweet angels this past week. Karen

Wednesday, October 20, 2004 8:35 AM CDT We returned from our niece's wedding Sunday night to find messages about the death of yet another little FA angel, Abbey Stuart. I am so overwhelmed by this news and can't stop crying. I never met Abbey in person but I felt like I knew her well. I followed her caringbridge website daily, like I do all of the FA kids with sites. We rejoiced when Abbey was finally given the go-ahead to return home very recently after months in MN for her BMT. It's hard to verbalize why this death touched me so deeply, but perhaps it's simply and frankly that with Ty facing BMT, alot of our hopes are invested in these brave warriors who've gone before us. Abbey is about the 7th person I know of who's died this year with FA. It is heart-breaking that so many parents have had to endure such tragic losses, and my heart just aches for each and every family. Please pray for Brandi and Greg as they endure the coming hours, days, weeks, months and years without their angel to hold. Please pray for all the families whose lives are touched by FA. Ty's doing ok. ANC down a bit more (see numbers above). Lots of petechiai all over his body right now. I finally switched PCPs and am looking forward to Ty's new patient appointment with him in early November. Ty's other PCP's office was just unequipped to deal with it all (referrals, labs, RXs, phone calls, doctors visits, etc), making them far too grumpy to deal with, and making me a you-know-what pushing to get for my son what he needs (in a timely manner... like lab results sooner than EIGHT days and referrals sooner than TWO weeks!) Insurance requires that ALL of Ty's referrals be re-requested by new PCP, so we're wading through that mess. Our first Bone Marrow Drive was a huge success, we ended up getting about 140 folks registered on the NMPD's registry in one day. The next drive will be this weekend. My goal is to get 1,000 folks registered in one year. Also, we've earned about $5,000 for Fanconi Anemia Research Fund since I started fund-raising last month, thanks entirely to all of YOU! I'm only half-way to my goal for 2004, so please, if you've not already done so, HELP US FIND A CURE for FA! Make checks payable to FARF, note TEAM TY in the memo line and mail to me today :) I heard from Dr. Boulad a couple weeks ago that in the preliminary bone marrow donor search for TY, nine 6/6 matches were found. They'll spend the next 4 months or so looking for two 10/10 matches (one for donor, one for backup). Great news! Dr. Boulad also said we must all get the flu shot (NOT the nasal mist, as that's live virus). Ty got his on the 8th. As for the rest of us, good luck! Because of the shortage, I can't even get my girls' PCP to give them the flu shot b/c they themselves are not at risk, EVEN though their brother is in bone marrow failure and is at VERY HIGH risk. Yet another reason I'm frustrated with that PCP's office. Ty's doing well in school and at home. We're still working on a few things, like getting him to do more than the least possible amount of work to get by; trying to get him to be more responsible for himself, his own homework, his chores, etc.; and reminding him that he's not going anywhere, no matter how badly (or how well) he behaves... he's stuck with us! He's finishing up his science project and another oral book report as well as trying to keep up with the regular daily homework he's assigned....so right now we're back to doing about 6-6.5 hours of homework each night. Hopefully next week things will calm back down and maybe we can get him signed up for archery finally (he needs something FUN!) :) Thank you for checking in on us. Blessings! Karen 10-21-04 addendum Had a stat CBC done today (mouth sores, petechiae, general aches and <500 ANC last week>. New labs: WBC 1.9 RBC 2.47 Hgb 9.0 Plates 34K ANC 342 B/c we have changed PCPs and our new patient appt with new PCP isn't until November, we have no local PCP, per se; also, our local Orlando hem/onc is on vacation, so an on-call doc suggested G-CSF. I called Dr. Boulad and he recommended going back on Minocycline swish and spit (constantly if we must) to keep sores at bay, and rechecking CBC in few days... may need to go on G-CSF (Nupogen), but he doesn't like it prescribed for numbers only (low ANC). Ty is now on strict neutropenic precautions and if he gets sick he'll have to be pulled from school until this is all sorted out. GOOD NEWS: They have found one 10/10 match for Ty... an apparently very willing donor :) They are still searching for a 10/10 backup. And yet another tiny FA angel is finally at peace. Sweet Coley Levine died this week as well. Please keep her family in your thoughts and prayers. Gosh. Here come the tears again...

Saturday, August 28, 2004 4:34 PM CDT We returned Wednesday night around midnight from our NY trip to Memorial Sloan Kettering Cancer Center to see Dr. Boulad. The facility was fabulous and Dr. Boulad and his co-workers were wonderful. We got answers to a lot of our questions and even some answers to questions we didn't think to ask (like Ty should be on a 'neutropenic diet' when his numbers are low... had no idea, but it makes perfect sense). We should be getting the results of the bone marrow aspirates and biopsies next week sometime. HLA testing was begun and we hope to hear about possible matches in about 2 months. We joined Dr. Blanche Alter's study. We also joined Dr. Auerbach's study (Rockefeller) and should find out Ty's FA complementation group (which type of FA he has) in about 4 months. Because Ty is high-risk (age, androgens, no sibling match, already aplastic anemia (AA) / bone marrow failure) Dr. Boulad recommended waiting for PBSC transplant until one of three things happens: 1) he becomes blood transfusion-dependent, 2) he gets leukemia (AML) OR 3) he gets myelodysplastic syndrom (MDS). Dr. Boulad treats much more aggressively than our local hem/onc, so he wrote much stricter parameters/protocols for: BLOOD TRANSFUSIONS (Hgb 6 for PRBCs or plates 20 for platelets) FEVERS (if 100.5 and obvious reason, then antibiotics; if no obvious reason, then blood cultures) DENTAL PROPHYLAXIS (every single time we walk into the dentist's office) DIET (strict "Neutropenic Diet" if ANC 500s or less) Dr. B also recommended continuing to ween off prednisone (decreased to 2.5 mg every OTHER day for 2-3 weeks, then d/c) Dr. B also recommended folic acid 2.5 mg per day. Regarding Anadrol dose (not even currently on minimum recommended for FA), Dr. B suggested just leaving at 50 mg for now (at least until get bone marrow results in) Regarding injectable Nupogen (sp?), Dr. B said he does not prescribe this based on WBC numbers alone... but only if low WBCs AND very frequent sicknesses (viral infections, etc) Dr. B said no need to repair the small umbilical hernia Ty's had for years. PHYSICAL LIMITATIONS: self-limiting and no contact sports; helmet if bicycling or scootering. The specialists were recommended as follows (if stable): LOCAL HEM/ONC every 2 weeks (if Hgb 9 or higher for awhile, then change to every 4 weeks) ENDOCRINOLOGIST every 4-6 months HEAD/NECK every 6 months RETURN TO DR. B in 6 months (sooner if changes) Dr. B recommended the following tests: CBC every 2 weeks (if Hgb 9 or higher for awhile, then change to every 4 weeks) LIVER LABS every month LIVER ULTRASOUND every 6 months BONE MARROW ASPIRATES every 3-6 months (or sooner if labs change for worse or better) BONE MARROW BIOPSIES no more... only need the baseline FERRITIN (if transfusions) METABOLIC PROFILE, THYROID, ETC as per endo Dr. B has done 15 high risk FA PBSC transplants. 2 patients have died. 2 patients did not engraft and had to be re-transplanted and are doing ok. He believes his success rate is due to 1) t-cell depletion of donor cells 2) very aggressive treatment and prevention of infections 3) using PBSCs rather than bone marrow stem cells and 4) wonderful staff who do the minute-by-minute care over the months following transplant. Gosh, that's all I can think of right now. All in all I came away more hopeful than I came away from the Family Meeting in Maine the week before. Thank you for checking in on Ty. Thank you for all your prayers, good thoughts and well wishes in the guest book. Thank you for considering registering to become a bone marrow donor. Thank you for writing a check out to Fanconi Anemia Research Fund, writing TEAM TY on the memo line and mailing to Karen Magrath at PO Box 411572, Melbourne, FL 32941-1572. We can't do it without YOU!

Saturday, August 28, 2004 4:34 PM CDT We returned Wednesday night around midnight from our NY trip to Memorial Sloan Kettering Cancer Center to see Dr. Boulad. The facility was fabulous and Dr. Boulad and his co-workers were wonderful. We got answers to a lot of our questions and even some answers to questions we didn't think to ask (like Ty should be on a 'neutropenic diet' when his numbers are low... had no idea, but it makes perfect sense). We should be getting the results of the bone marrow aspirates and biopsies next week sometime. HLA testing was begun and we hope to hear about possible matches in about 2 months. We joined Dr. Blanche Alter's study. We also joined Dr. Auerbach's study (Rockefeller) and should find out Ty's FA complementation group (which type of FA he has) in about 4 months. Because Ty is high-risk (age, androgens, no sibling match, already aplastic anemia (AA) / bone marrow failure) Dr. Boulad recommended waiting for PBSC transplant until one of three things happens: 1) he becomes blood transfusion-dependent, 2) he gets leukemia (AML) OR 3) he gets myelodysplastic syndrom (MDS). Dr. Boulad treats much more aggressively than our local hem/onc, so he wrote much stricter parameters/protocols for: BLOOD TRANSFUSIONS (Hgb 6 for PRBCs or plates 20 for platelets) FEVERS (if 100.5 and obvious reason, then antibiotics; if no obvious reason, then blood cultures) DENTAL PROPHYLAXIS (every single time we walk into the dentist's office) DIET (strict "Neutropenic Diet" if ANC 500s or less) Dr. B also recommended continuing to ween off prednisone (decreased to 2.5 mg every OTHER day for 2-3 weeks, then d/c) Dr. B also recommended folic acid 2.5 mg per day. Regarding Anadrol dose (not even currently on minimum recommended for FA), Dr. B suggested just leaving at 50 mg for now (at least until get bone marrow results in) Regarding injectable Nupogen (sp?), Dr. B said he does not prescribe this based on WBC numbers alone... but only if low WBCs AND very frequent sicknesses (viral infections, etc) Dr. B said no need to repair the small umbilical hernia Ty's had for years. PHYSICAL LIMITATIONS: self-limiting and no contact sports; helmet if bicycling or scootering. The specialists were recommended as follows (if stable): LOCAL HEM/ONC every 2 weeks (if Hgb 9 or higher for awhile, then change to every 4 weeks) ENDOCRINOLOGIST every 4-6 months HEAD/NECK every 6 months RETURN TO DR. B in 6 months (sooner if changes) Dr. B recommended the following tests: CBC every 2 weeks (if Hgb 9 or higher for awhile, then change to every 4 weeks) LIVER LABS every month LIVER ULTRASOUND every 6 months BONE MARROW ASPIRATES every 3-6 months (or sooner if labs change for worse or better) BONE MARROW BIOPSIES no more... only need the baseline FERRITIN (if transfusions) METABOLIC PROFILE, THYROID, ETC as per endo Dr. B has done 15 high risk FA PBSC transplants. 2 patients have died. 2 patients did not engraft and had to be re-transplanted and are doing ok. He believes his success rate is due to 1) t-cell depletion of donor cells 2) very aggressive treatment and prevention of infections 3) using PBSCs rather than bone marrow stem cells and 4) wonderful staff who do the minute-by-minute care over the months following transplant. Gosh, that's all I can think of right now. All in all I came away more hopeful than I came away from the Family Meeting in Maine the week before. Thank you for checking in on Ty. Thank you for all your prayers, good thoughts and well wishes in the guest book. Thank you for considering registering to become a bone marrow donor. Thank you for writing a check out to Fanconi Anemia Research Fund, writing TEAM TY on the memo line and mailing to Karen Magrath at PO Box 411572, Melbourne, FL 32941-1572. We can't do it without YOU!

Sunday, August 22, 2004 10:35 AM CDT 2004 Camp Sunshine, Lake Sebago, Maine, was incredible! It is mind-boggling what all has to come together every week for this whole experience to occur for hundreds of families every year. I knew there were approximately 70 volunteers scheduled for FA week, but I had assumed that the volunteers were all locals. Little did I know that these volunteers come from all over the US and Canada (and perhaps elsewhere even)… this fact alone is so touching I can’t begin to express the emotionality of it for me. For folks like us with a child with such a devastating diagnosis, whose daily lives seem sometimes literally consumed with all of the nuances of FA (doctors, testing, cancer concerns, prognosis concerns, future concerns, etc), to realize the magnitude and boundlessness of peoples’ hearts was overwhelming. THANK YOU VOLUNTEERS! Your gifts of time, compassion and sharing this past week will never be forgotten!! Ty, although sick most of the trip, had a great time. The last thing he said to me, while waiting on the porch for the van to take us back to the airport, was, “Mommy, I love this place”. He got to do so many things he’s never tried before… his favorite being archery. He also went rock climbing (on a wall), played putt-putt golf, volleyball, went kayaking, and had his first ever sleep over --it was supposed to be “camping”, but they stayed in a building rather than tents and ended up watching a movie (hardly camping), but there were sleeping bags and marshmallows involved, so Ty had a blast! Camp Sunshine also has a game room (with ping pong, billiards and foos ball) and a computer room, both of which Ty spent a good deal of time in (it rained a lot!). Oh, and Ty even got up on stage to perform his “chuh-ling” for the Talent Show (we call it a Chinese Yo-Yo, to which he always exclaims, “No Yo-Yo, chuh-ling!!”). I love watching Ty do this, and I’m so proud of him for getting up there and performing in front of all those people. Perhaps the best thing for Ty, though, was just being with other kids like him. I don’t think he ever once felt “different” (whereas at home he often has some trouble keeping up with other kids, and I think is often embarrassed by it). Because of the language issues, I know this isn’t something Ty could put into words, but he really seemed at ease with these children. It was also very interesting how similar to each other the FA kids looked. (There was a gentleman at Camp who was doing 3-D facial imaging… which was fascinating to me… and I can’t wait to see the “face of FA” they’re able to come up with eventually, thanks to all the folks who allowed themselves and their children to be photographed.) Again, I don’t think this is something Ty could verbalize, but something he definitely sensed. Although there were children there with varying degrees of obvious physical differences associated with FA, Ty never once asked about it, or even seemed to notice. For me it was an extremely emotional few days. The adults were kept very busy listening to presentations by professionals from around the country who specialize in FA, gene therapy, facial imaging, transplantation, cancer, insurance issues, etc. Also, Nancy Cincotta, the social worker at Camp, led some really moving discussions/debriefings. I counted at least 20 seminars/debriefings I attended. While much of the information was the opposite of hopeful for our particular situation, I at least feel more empowered having the information…which in my mind always beats the pants off the fears that come with the unknown. It was also extremely comforting to hear of all the advancements in FA in just the last few years and on the horizon. None of these advancements would have been possible had it not been for the fundraising efforts of Dave and Lynn Frohnmayer and so many other FA families along the way. They’ve put this “orphan disease” on the map, so to speak, and because of their efforts and the links now known between cancer and FA, this research has much more far-reaching implications than just for our FA families. I feel honored and so very fortunate to have finally met so many of the FA folks I’ve come to know (and love) on the FA e-group, as well as others not on the list. Some other events at Camp Sunshine were the balloon launch, where everyone writes something on a white balloon (memories of loved one, hopes for the future, thanks for what they have, etc) and then all of the balloons are released at once down at the shore of Lake Sebago. Talk about the tears…very emotional! Also there was a nice adult dinner and karaoke night (hilarious) as well as a masquerade ball and a celebration show (at which we got to see the many talents of the volunteers with their grouped-by-age campers). FUN! I’m now in the process of organizing my very first fund-raiser and bone marrow drive. It is tentatively scheduled for October 1st, which purely by coincidence is Ty’s 11th birthday (that was the first opening the blood bank had for their mobile unit to be deployed, as they’re very busy now post Hurricane Charley). It will hopefully occur at Ty’s school (although I’m still awaiting their OK), Sherwood Elementary in Melbourne, FL. My husband, Ty’s sweet daddy, Steve, will be the first to donate blood for bone marrow testing. My sister and my dad will be the next in line. Hopefully we’ll have so many folks sign up that we’ll have to schedule a second drive just to accommodate all the appointments. But even if only one person shows up, it will be one more potential bone marrow match that wasn’t in the bank before. Please don’t wait for someone else to be ‘the one’. It could be YOU! For family, friends and even strangers who ask us, “What can we do to help?” Here’s the answer: 1) Open your hearts and your checkbooks. Every dollar counts and every dollar is tax-deductible. Whether you can write a check for $5 or for $5,000, please do it now. Make it out to Fanconi Anemia Research Fund, put TEAM TY on the memo line of your check, and mail to Karen Magrath at PO BOx 411572, Melbourne, FL 32941-1572. 2) Become a potential bone marrow donor. All it takes is the completion of a short medical questionnaire and about 30 minutes out of your day to donate blood for the blood bank and for bone marrow testing. It’s simple. And it could mean the difference between life and death for a child who needs your healthy bone marrow. It could mean the difference between life and death for Ty. If it is determined that you’re a match for someone, counselors will then contact you to help you make an even more informed decision about donation. (If you donate blood, then there is no cost for bone marrow testing AND two entities are benefiting at once.) 3) Donate blood every 8 weeks. Many FA children become blood transfusion-dependent while awaiting a match for bone marrow transplant. 4) And if you have anything else left to give, please remember Camp Sunshine. Families attend Camp Sunshine for free thanks to generous donors like you. The rewards for families like mine are immeasurable. Make checks out to Camp Sunshine, put TEAM TY on the memo line of your check and mail to PO Box 411572, Melbourne, FL 32941-1572. Thank you. Thank you. Thank YOU!!! Karen Magrath MagrathKC@cfl.rr.com ***The request to donate to Caringbridge is not from me and I can't remove it from this website. We prefer that you donate to Fanconi Anemia Research Fund and put TEAM TY on the memo line. Thank you!***

Tuesday, August 10, 2004 4:57 PM CDT Thanks for checking in on Ty today. Thank you also for the many wonderful guestbook entries. Please remember to pray for all those undergoing transplant (Abbey, Mikey and Johnathan and others) as well as all our other FA family members in all stages of this disease. You may go to www.fanconi.org to view FA family webpages. Ty visited his local hem/onc, Dr. Giusti, on July 29th and had labs drawn (see above for results). Dr. G decreased Ty's prednisone by half again this visit (5 mg to 2.5 mg per day). Since Ty will be seeing the MSKCC hem/onc, Dr. Boulad, in NY on August 24th and 25th, we won't be seeing Dr. G again until September hopefully. I'm really looking forward to Camp Sunshine this week! Can't wait to meet in person many of the great FA families I've already met online, and really looking forward to all the educational seminars in store for us. I hope it's good for Ty. We just returned from our vacation to the mountains. We rented a cabin in Maggie Valley area of NC and had fun bike riding, picnic'ing, skipping stones, hiking on the Blue Ridge Parkway to find waterfalls, s'more'ing, reading, visiting friends and just doing "family stuff" :) The picture above is of the five of us on the front porch of the cabin, eating s'mores, looking at the beautiful Smokeys. The weather couldn't have been better. Ty began 5th grade today. Thankfully he loved it and loved his new teacher as well. Besides that, he made 3 new friends :) I was so worried, because his English is so limited... I can't tell you how relieved and happy I was to see that big old grin of his as he got into the car after school :P I really missed having him home with me. Friday Zoe starts Kindergarten. Then it'll be just me and CeCe all day. Hm. Love to all our family and friends! Karen (with Steve, Ty, Zoe and CeCe)

Wednesday, July 28, 2004 5:33 AM CDT Hello and thank you for checking in. Ty and I will be leaving Monday, August 23rd, in the evening for Memorial Sloan-Kettering Cancer Center (MSKCC). We have appointments the 24th and 25th with Dr. Boulad's team and will come home the night of the 25th. I'm excited to be moving along with this whole process. We'll be staying at Ronald McDonald House (RMH), which we're told is just 5 blocks from the hospital. Have to run. More another time. Just wanted to share the good news :) Please continue to pray for all the folks in our wonderful 'FA family' of friends. Karen

Friday, July 23, 2004 8:14 PM CDT I called the insurance company today to check on the status of the "facilities referral" to Memorial Sloan Kettering Cancer Center. You may recall that the referral to Dr. Boulad was approved a few days ago, but they were still waiting for the case manager to approve the 'facility' in case Dr. Boulad wanted Ty to have any testing done while we're in NY. Anyhow, we got the referral! :) :) :) They were very clear that this was strictly for evaluation... that IF Dr. Boulad thought Ty was a good candidate for stem cell transplant, then that would all have to be approved separately. I called Anna at Dr. Boulad's office to schedule, but she needs to chat with the doctor to see how many days we need to be there/what all he wants done while there first. She'll call me back next week. On cloud nine... Ty's about half-way through his (second!) week-long loss of privileges and is behaving like an ANGEL again this entire restriction period! I'm so proud of him. Sweetest thing happened the other night. I have to preface this a bit... with my girls who were both adopted as babies, I've always kissed them on the lips. With Ty, who was adopted just a couple months ago at age 10.5, the kissing issue has always been a bit awkward (gender and newness factor, I suppose). So, I always make a big display of kissing him all over his head and face, but not on the lips... I mean literally, like 25 or 30 kisses covering his head/face. Well, the other night after all the 'goodnights' were said and all the kisses given, he says, while holding onto my arm to keep me close, "Mom"... and then this squeaky (kiss kiss kiss) sound for me to kiss him on the lips. Melted my heart :) :) Funny thing today... we went to our friends' house for a playdate. The 4 younger kids were playing inside and my friend Carrie set up the slip-n-slide outside hoping Ty would want to play on it (so as not to be too bored, since he lost all his privileges). Ty was wearing long sweats and shirt, so I suggested to Ty that he could take off his shirt and pants (and leave underwear on) to play in the water. Well, I peeked out the window and saw him still fully dressed, so I borrowed some shorts from one of the younger kids and took them out to him. Well, by the time I got the shorts and got outside to offer them to Ty, he had already stripped totally naked (that language barrier!) and looked like a dear caught in the headlights (he was hiding behind a little playhouse trying to get covered up quickly). What's so funny, is that there is a window right in the room the adults were sitting... AND the younger kids could have come outside at any moment... so it's sort of funny that he was so uncomfortable being 'caught naked' yet was willing to play out there on the slip-n-slide like that. (I should have probably prefaced this with the fact that Carrie and I usually can't keep clothes ON any of the four younger kids when they're all together... as they always want to play in the pool and be 'nakie-buns' as they like to say.) Please pray with us for all our FA friends, esp those in transplant now (Abbey, Mikey & Johnathan). Thanks for checking in! Karen

Tuesday, July 20, 2004 7:53 PM CDT OK, one would think I would have learned my lesson the last time I lost data while uploading, but noooo… so here I go again RE-typing the newest update on Word so I have a back-up. Frustrating! I heard back from the local hem/onc nurse today with the GREAT news that Ty’s referral to Dr. Boulad has been approved. Now she is just waiting to hear from the Case Manager at BCBSHO saying the “facilities referral” has also been approved. Should hear back tomorrow or Thursday hopefully. The second referral is so that any testing Dr. B might order will also be approved as well as the BMT, should that be an option for us. YAY!!!! Ty’s is now in yet another week-long loss of privileges (restriction). He just finished up a week like this on Friday night, and now here we are again already. Sheesh. Stubborn! I explained again that he had a choice to make about his behavior between now and next Tuesday night. He can choose to behave nicely and regain all his privileges in a week, or he can choose to behave badly and lose more privileges. Totally up to him. He then reverted back to the angel (truly!) we all know and love. I got a really pleasant surprise tonight, even though Ty knows he’s on restriction and is upset with me over it. Me: Ty I love you and I’m really happy you’re a part of our family. Ty: What’s this, “family”? Me: You know, Daddy, Mommy, Ty, Zoe and CeCe. Family. Ty: Oh. Me: Ty, are you happy in Florida? Ty: Oh. (His usual answer when he wants to say “no” but doesn’t want to be that mean) Me: It’s OK Ty. Just say, “No Mommy, I’m not happy in Florida”. Ty: Yes Mommy, I’m happy in Florida. Me: (starting to cry) Are you happy in this family? Ty: Yes I’m happy in this family. Yes. Melted my heart, as usually he “jokes”(?!) that everything American is bad (family, food, house, car, weather, etc), everything Taiwan is good. Well, that’s about it for now. Please remember everyone with FA (and their families) in your prayers, especially those with recent BMT’s (Abbey, Johnathan & Mikey), those with ongoing medical concerns (Maria, Nicholas, Marshall), and those who’ve otherwise just touched our hearts (Amelia, Amy, Charlotte, Evan, Hunter, Jack, Jo & Jacy, Karly, Kory, L. Amulya, Molly, Nathan , Rachel and Will Power!). You can read their stories and others by clicking on the Family Webpages link on the fanconi website listed below. To family and close friends ~ We love you! Thank you for everything you do! ~Karen

Monday, July 19, 2004 3:31 PM CDT Well, I updated this page a few days ago, but I lost it when uploading to the website, so this time I’m typing on Word so I have a backup :) See, old dogs CAN learn new tricks! Lucky for ya’ll, this version will likely be much shorter :) I’m still awaiting Ty’s insurance referral to Memorial Sloan Kettering Cancer Center. I’ll leave out all the gruesome details, but suffice it to say it’s sitting on a case manager’s desk at Blue Cross Blue Shield Health Options. It’s now been exactly one month since we were told by Dr. Giusti that the referral was necessary. I received a very nice email back from Dr. Boulad at MSKCC. In addition to other information he provided, he also offered to contact our insurance company on our behalf explaining why we needed to be referred out of network. Hopefully that letter will help get us the necessary referral. Either way, I’m very grateful to this kind man for offering to do this for someone who’s not even a patient there yet. I heard back from Ty’s new endocrinologist that all the labs he ran were normal and that Ty’s bone age came back at “10-11 years old”. Follow-up every 3 months. Ty and I now have plane reservations for Camp Sunshine. YAY! I’m really excited to meet in person so many of the folks in this “FA family” I feel I already know through the Yahoo e-group. Also excited to learn as much as possible about FA and happy that Ty will be able to just go and have a good time :) Ty's English is improving by leaps and bounds every week. He's had 4 tutoring sessions in the last week and is doing even that much better for it. I’m so proud of him! We had a really rough day and night with Ty two Saturdays ago, and he just finished up a week-long loss of all privileges Friday night as a result of that Saturday behavior. He was actually an angel throughout the ‘restriction’...and he certainly did not have to be. He made really good choices all week long behavior-wise. Really, really proud of him!! I think that because Ty has had a couple different homes...and to this point he’s always been sent away to the next home...that he is just waiting to be sent away from this one....and why not get it over with sooner than later?! After a really rough day/night Saturday (from a kid whose behavior is usually extremely good) with us explaining to him that we love him no matter what; that no matter how he behaves he will not be sent to live with someone else; and that he has a choice to make about his behavior and the resultant consequences of said behavior; and that everyone has to follow rules, even Mommy and Daddy, doctors and lawyers and so on...anyhow, he seems to have gotten it. Now, I’m not naïve… I know there will be much more pushing and testing the limits and the rules, but...peace and happiness again for now :0 Well, that’s about it for now. Thanks again for checking in on Ty. Please remember all the FA families in your thoughts and prayers each day, as we do. And to our family and close friends ~ we love you!! Karen

Thursday, July 8, 2004 7:00 PM CDT Ok, this is just going to be one big vent session. I'm beyond frustrated with our local pediatric hem/onc office. To begin with, Ty was last seen there over 2.5 weeks ago, at which time he was referred to Memorial Sloan-Kettering Cancer Center in NY, NY. My phone call to our local hem/onc nurse yesterday was my SEVENTH and the message I left this time could probably barely pass for civil. I had left SIX nice messages for them over the last 2.5 weeks and not ONCE had they bothered to even phone me back about this and a couple of other issues I wanted addressed. Granted, it is a new nurse, as our beloved Mo got shuffled around in order for her to keep her benefits/tenure, but I MEAN!! So our local hem/onc nurse finally calls me back last night at 6pm, begrudgingly I could hear in her voice, and whines about how she's new (mind you, she was AT our appointment 2.5 weeks ago) and about how busy she is and blah, blah, blah. And frankly, I honestly don't care. I deserved a return phone call back one of the first 6 times I called over a 2.5 week period. So, she calls me last night, only to say that she "finally obtained the dictation she needed" in order to process the referral. When I asked her what she meant, she said she finally got her printer to print out the last office visit note. I've had that note (and all the records), in my possession for over 1.5 weeks. I could have FAXED it to her in one minute, but it took her 2.5 weeks to "finally obtain" it! Sheesh. SO all she said is that she'd get on it first thing this morning and call me back today. Yeah right. You guessed it. No call from her. The reason (aside from the most obvious) I'm so upset about this, is that it's an out-of-network referral, which means it's going to be denied, then appealed, then.... and that all takes lots of time. So now we've wasted over 2.5 weeks and haven't even BEGUN that process, never mind even contacting Dr. Boulad's office for an appointment and then getting plane and lodging reservations and such. And what all THIS means is that Ty will have to miss more school just to go to NY. OK, on top of all this, they had our Camp Sunshine forms at the local hem/onc's office for over a month and a half... waiting for the results of the BM biopsies so they'd know better where we stand... then it was left to this nurse to fill them out... which she did not do accurately... and only (you guessed it) begrudgingly did after numerous phone calls to her. And on top of all that, another thing I was calling the nurse about was b/c although the local hem/onc told me that all of the tests (other than BM stuff) were perfectly normal, the Echo report actually shows mitral, tricuspid and aortic regurgitation, with the recommendation that Ty get prophylactic antibiotics before dental work. She finally told me yesterday that yes he needs the antibiotics and that she called them in. So I go to pick them up and the pharmacist says that he rec'd some "crazy message" from the hem/onc nurse and that he left a message for her to clarify, but she never returned his call. I did eventually get in touch with her again and had her call the pharmacist back right away. His dental appointment is next week, so at least all this is taken care of now. And finally, I get a copy of all his records to take to Memorial S-K, and there are numerous significant errors dictated by the doctor himself (ie what meds Ty's on, what changes in meds the doctor made at each visit, when the changes were to take place, etc.) How do people function like this?! I'm an R.N. myself and have never seen such incompetence and uncaring in one office. WE MISS YOU, MO! My next call will be to the office manager. Well, I feel better. Thanks for listening. Oh, and we finally decided about school for the kids. We're going to withdraw Zoe from private school, and Zoe and Ty both will go to public school this year. In case I've not spoken about this before, our private school has no resources for dealing with ESL (English as a Second Language) children. Private school wanted to put Ty in third grade, but he's fully the size of a fifth grader, he has the beginnings of a moustache and other male stuff going on, he's extremely smart (and finished fourth grade in Taiwan), and socially would definitely not be too happy being put back that far. In addition to all this, our little CeCe will probably be needing some "special education" courses which are not available in our private school. Hopefully it will all work out, although we are leaving all three children on the wait-list for private school next year, in case we decide to switch back. Whew, one uncertaintly dealth with :) For the month of July we have a foreign exchange student, Angela, staying with us. She's from the North of Spain and is very fluent in English. She's a sweet, fun addition to our family. I went out for the first time in exactly a YEAR with other adults only (no children, no husband!) Played BUNKO and had a blast. My cheeks hurt so much by the end of the night from all the laughing. I am now on the "team" and will get out once every month, hopefully :) Please remember to pray for all the folks in our FA FAMILY. Abbey's bone marrow came back 100?onor!! Hip Hip Hooray. Maria's studies came back "benign" this time after some big scares! YAY!! Two wonderful 'good news' stories :) To read more about these and other FA families, visit www.fanconi.org and scroll down to the link about family webpages. Oodles of hugs and kisses for family and close friends. Thanks to everyone for checking in with us and for lending an ear :0

Tuesday, June 29, 2004 8:06 AM CDT Hi everyone. Thanks for checking in. Hope your weekend was fabulous. We returned yesterday from our big weekend camping ~ Ty's first. It was so much fun! We met up with my three Alabama cousins at a campground near Ocala. (Our families used to camp together every year when we were all kids.... but we've only seen them a few times in the last 20 years) We all went tubing down the Ichetucknee much of Saturday and again much of Sunday. Very cool (I mean the cold kind of cool ~ it's a natural spring) AND the groovy kind of cool, too. So many fun memories for me. We even tried getting our adult bodies to balance standing up on the tubes (never mind trying to get our adult bodies to dive through the center of the same tube while standing!) just like when we were kids. It's amazing how similar everything still was even 35 years after we first started tubing/camping there. There were a few "little" incidents, like one of the kids whose tube wasn't tied onto ours getting way up ahead, falling out of his tube and having to be rescued... then his dad not being able to locate him for another couple hours... scary! And when we were packed up and on our way home I called to check messages on my cellphone and there was one from our next door neighbor saying that our garage door had been open for a couple days and that she was going in that day (Sunday!) to close it for us ~ thankfully nothing was missing or vandalized in our garage nor home. It rained a time or two, but it was fun watching everyone play, dance and sing in it. The crickets/frogs were very loud at night, but it only helped drown out the cries from CeCe and the snores from many of the men :-) The worst part was that the nearest potty was a port-a-potty and it was not nose-able the last two days we were there (ick!) We played mad-libs just like when we were kids, ate s'mores just like when we were kids, and had fun telling stories around the campfire, just like our parents did when we were kids. Ty wore Aunt Missy out play badminton... and all the kids had fun throwing frisbees and balls around. The little ones were playing "house" alot. Oh, and there was lots of fun to be had digging out the wood from a decaying tree stump... and gathering twigs for the evening fires. We had 7 tents and one RV on our big camp site, along with about 4 screened room/dining tents. I had to leave camp a bit early Monday morning to get Ty his new endocrinologist. He's just running some tests and wants to review the bone age films himself, so I'll have those sent to him. He'll call us in a couple weeks with results and he'll see Ty every 3 months for now. Now that we're home there is lots of re-packing and re-stocking of camp supplies to do (my job), so I'm off to finish that up. I hope to post some camping pictures in the next day or so, so please check back often. Prayers continuing upwards for all of our FA FAMILY friends. Love to all of our family and close friends ~ we couldn't do it all without YOU! :] Karen, Steve, Ty, Zoe and CeCe

Thursday, June 24, 2004 1:18 PM CDT Heard from Mo(Ty's hem/onc nurse) today with Ty's labs (see above). No change in meds. They're preparing his medical records for Sloan-Kettering as well as the Camp Sunshine forms...hopefully I'll receive everything next week. I need to contact Suzanne Lauck at fanconi.org to make sure there's room for us to attend camp, as we're so late in applying. Ty saw Dr. Ho today (pediatric ophthalmologist) for the continuing sty problem (clogged oil gland where eyelashes are) in his right eye. Ty's been on about 2 weeks of tobradex bid OD plus a week of amox-clav 500 bid PO. Under normal circumstances, Dr. Ho said it would be time to excise, but b/c of aplastic anemia he feels that's not an option. So, we are to continue warm compresses 4 times per day, tobradex bid, and d/c the amox-clav. He said it may take 4 to 6 or more months for the pea-size knot in Ty's lid to resolve.... or he may always have a little knot there. Some folks are just more prone to stys, but the reason is unclear he told us. I just returned from a short trip with the kids to Savannah to visit my friend Tonya (she's about 8 months post chemo/rad/surgeries for breast cancer and doing well; she's going in August 4th for some more reconstructive surgery). We had a really good visit. Tomorrow we leave for a big family get-together camping weekend at Itchetucknee Springs (Ocala area). Everyone's really excited :-) We'll be seeing cousins we used to camp with when we were all children. It should be a blast! Hope your weekend is great! Special prayers going up for the Redekop family who lost their daughter to FA this month, the Saleem family who lost their daughter to FA this week, and to all our FA FAMILY friends. Love, hugs and kisses to family and close friends for your kind words, thoughts and prayers. Karen

Saturday, June 19, 2004 9:21 AM CDT Hello! Well, yesterday we saw the hem/onc again. He told us (again) that the bone marrow was almost completely devoid of cells (severe aplastic anemia), but no dysplasia/leukemia. He said all the other tests done June 2 were ok (echo, EKG, renal and abdominal u/s, etc.) We've been referred to Dr. Boulad at Memorial Sloan-Kettering Cancer Center in NY, NY for evaluation, HLA testing, complementation group testing, etc. Hope to get the (dreaded) insurance issues ironed out quickly (good news is that a local FA family has same insurance and no difficulty getting their son referred out of network). Prednisone was cut in half (he's been on 5mg bid for a year, so the hem/onc is going to try to wean back a bit) Continuing anadrol 50 mg qd (started this on 6-9-04, in lieu of the durabolin injection, which we can no longer get in the USA) Ty's also on Tobradex and amox-clav for 10 days for a sty problem (which Ty tells me was a common problem for him in Taiwan). Monthly labs and visits to hem/onc to continue. Should get results of yesterdays labs on Monday. The hem/onc said not to get too bogged down on statistics of kids with with severe AA. Easy for him to say. Please keep all of our FA FAMILY friends in your thoughts and prayers. Many thanks to our family and close friends for all you do, say, and pray for us :) Karen

Tuesday, June 8, 2004 5:34 PM CDT Mo, Ty's hem/onc nurse, called this afternoon to say "NO MALIGNANCY" on Ty's biopsy pathologies, "'just' the aplasia". We'll see them in two weeks for the results of the other testing done. Ty went for his first swim lesson today and did fabulously and had FUN. The girls are having a blast with swim lessons, too. (The girls already know how to swim, so these lessons are to improve technique for them.) Ty's been swimming only for the couple weeks we've had him... (had to be rescued the first two times he was in the pool with us!) His technique is already beyond Zoe's and CeCe's after just this one professional lesson, but he's not comfortable in the water yet . Ty went for his audiology exam today and everything was perfectly normal. Ty starts his new po anabolic steroid tomorrow (can't get the old injectable durabolin in the U.S. any longer). Hoping he does better (or at least not worse) on the anadrol. All this week Ty is going to Vacation Bible School at our friends the Farleys' church, where the Farleys teach and where the Farleys Mandarin-speaking children go... so Ty's LOVING being able to pal around with his buddies with whom he can communicate easily :) The girls begin the Summer session of ballet/tap/jazz tomorrow. They're excited. This begins Zoe's 3rd year and CeCe's 2nd year of dance. Ty seemed very excited about dance after the girls' recital last month , but he's decided not to participate after all . Thank you for taking the time to check in. Prayers and best wishes to all our 'FA family' friends who are struggling... we think of you daily. And to those doing well, of course, also. You are all SUCH inspirations to us! Huge thank yous to my family and close friends for all the emotional, physical and other support you so tirelessly offer and provide. I love you! Karen

Sunday, June 6, 2004 6:54 AM CDT Hi everyone. Well, Ty went into Arnold Palmer on Wednesday, June 2, and all I can say is thank God that day is behind us. It began with Ty's bone marrow aspiration and biopsy. After twisting that trochanter into the bone for over 1/2 hour, the doctor finally emerged with a marrow biopsy, pushed it out and onto a slide, and then promptly knocked it onto the floor! So, Ty had to have the whole procedure repeated. I was not prepared for the hospital staff to allow me to be in there with him, and although I'm an RN, I've never actually seen any bone marrow aspirations/biopsies done (and certainly none on my own child!). Although they give him medications to sedate and to make him forget, I was not prepared for him to be waking up throughout the procedure screaming in pain, crying, and calling for me! It was funny, and quite a relief, later in the day when Ty kept asking me 'when was he going to go to sleep?' (and I told him he had already been asleep for almost 2 hours). He was incredulous. However Friday night at bedtime he kept me in there quite a bit longer than usual, and started (with lots of 'sign language') asking me lots of questions, like, was he calling out for me? (yes), was he crying? (yes), was I wiping his tears? (yes)... so he remembers bits and pieces, at least, of it all :( The rest of the day was spent with me pushing Ty in a wheelchair (because he was dizzy and really in some discomfort) all around the hospital and to buildings beyond the hospital for the rest of his testing. Unfortunately, I arrived at the hospital that morning with only $6 in my pocket, $3 of which had to go for parking...AND the ATM machine wasn't working... AND the cafeteria only took cash. So all I could afford there was carrots and corn for Ty for a snack after his fasting testing. By the time we could leave the hospital that night, we were both starving (as neither of us had really eaten since dinner the night before), so we stopped for dinner at Bennigans and then headed home. Another problem we encountered was that we were specifically told "no preparation" for any of Ty's other testing that day (when in fact he should have been fasting... no carrots/corn....for some of it ie gallbladder u/s), so now I know to actually call the hospital next time to inquire about prep (rather than finding out from doc's office). Live and learn, I guess. Heard from the nurse Thursday night with some preliminary results: "severe hypocellularity consistent with aplastic anemia". She said we'd have to await the rest of the pathology reports (hopefully by about Tuesday) to know about any dysplasia, etc... We knew we'd end up here, just didn't know it would be this soon. Also found out this week that we can't get the durabolin in the U.S., so the dose he got on May 24 is the last one. He's been on it 5 years come July, so it's a little scary switching. But the fact that we can't get it here forced the decision, which in a way makes the decision a bit easier. (Obviously, in light of the preliminary marrow results, the durabolin and prednisone are no longer really doing much anymore... BUT, he's alive and seems so healthy to look at him... that's what makes changing so scary for me.) That's about all for now. I'll post again when I know more later this week. Thank you for checking in.

Tuesday, May 25, 2004 3:17 PM CDT Ty visited the ophthalmologist in Orlando yesterday. All good news. Vision corrects to 20/25 both eyes. Slight astigmatisms both eyes, slightly worse in left eye (so vision slightly worse in left eye). No correction nor patching recommended. Also, doctor noted that although Ty is listed in previous medical records as having "microphthalmia" (small and misshapen eyes by true definition), he actually has normal or near-normal size and shape of eyes... maybe just slightly smaller than low end of normal and only slightly astigmatic. He doesn't need to go back again for a year. Yesterday Ty also had his durabolin injection for the first time in the States. (Now, in Taiwan they gave it all in one shot and all in the bum. Here they refused to give it in the bum and decided they had to split up the dose into two different injections into the thighs.) Unfortunately, Ty is extremely skinny, and his poor legs are a mess today. We went to an indoor play place called Fun Attic and he actually just layed in my lap and cried for an hour because they were hurting so badly. Sadly, because of the langauge barrier, and b/c Ty will not "localize pain" (by pointing to it), it had to wait until we got home for us to use the computer translation programs to figure out what was going on with him. He's usually very happy and playful, so this really broke my heart. While we were at Fun Attic, I called Donna (my sister) to get the phone number of a mutual Chinese friend (who wasn't home) and I also called the local hospital to see about a translator being on duty (there wasn't one)...talk about feeling helpless! Ah well, hot packs and OTC pain reliever at least have him up playing a computer game now :0 Yesterday we also got bone age and radii films accomplished. Oh yes, and Steve returned last night from his jaunt to lands far, far away (no, not like in the new Shrek 2 movie... just Japan & China on business). Please check back soon for the June 2nd hospitalization update. (Some very kind bilingual folks in California who have a daughter with FA agreed to translate to Ty what to expect during the hospitalization and to explain to him a little about his medical condition, which Ty knew nothing of to that point. Ty seemed to take everything very well, but I HATE that I was unable to do this particular "mom thing" for my own son.)

Friday, May 21, 2004 9:58 AM EST We returned from Taiwan on Friday, May 7, 2004 with the newest member of our family, 10.5-year-old Tys (fka Lee, Meng-Wei). He actually joined our family on Monday, May 3rd and is such a blessing. He's very cute, sweet, smart and SO SO funny. He's a perfect match for our family. We've been to see the pediatrician and the hem/onc so far. Referrals in the works for audiology, ophthalmology, dental, endocrinology, etc. At the hem/onc appointment labs were drawn. Awaiting those results. Have script in hand for bone age and radii films. Ty will enter hospital on June 2nd for bone marrow aspiration and biopsies, renal and abdominal ultrasounds, echocardiogram and EKG, etc. OBVIOUS SIGNS microphthalmia (small eyes) microcephaly (small head) skin hyperpigmentation cafe au'lait spots SURGERIES bilateral orchiopexy (for undescended testicles) June 1996 CURRENT TREATMENT prednisone 5mg po bid (since July 2003) durabolin 37.5 mg IM q3weeks (since July 1999) **blood transfusion in Taiwan 10-15-03 CURRENT LABS (verbal, pending) 05-17-04 Hgb 8.4 WBC 4.6 ANC 1058 plates 27