COOKIE - Giving MORE Thanks....11/08/06

Dearest Friends and Family,
Today we're giving thanks for the WONDERFUL team of doctor's at UCLA and for the relationships that we've formed with them, on behalf of Our Girl. COOKIE has been having a very rough time of it. She's been completely without an appetite. Her mind tells her she wants to eat but her body tells her she simply cannot. She is so nauseated she vomits every morning before she can take her meds, then she's ok to take them. She's been very lethargic and somewhat withdrawn. She's began having occasional headaches again and stomach aches and to top it off, the "picc line" in her arm has been bothering her. I told you all about the difficulty I have with this line. It seems her skin is breaking down where the tape has to go and little pieces of skin come off with the tape. But let me go back a step....

In order of priority, it's time to help COOKIE to feel better. Yesterday was UCLA day and the doctor's were all over making things happen to help COOKIE. She got 2 IV's, one of a med called Kytril, to control the nausea and one of Magnesium, in order to eliminate the need for her to take it by mouth every day. It's the biggest pill she has to take THREE TIMES A DAY!!!!! Even chopped up, it makes for a pile o' pills. They changed her MAIN med, Cyclosporin, to something that is a little stronger on the tummy stuff. COOKIE is showing signs of intestinal graph vs. host disease and this new med, Prograph, should nip it in the bud, so to speak. If you remember, I explained that Cyclosporin was the KEY med to fight off the graph vs. host disease but it seems that Our Girl needs a little bit of a boost.

COOKIE will go to UCLA again tomorrow, Thursday, and get all of her levels checked again. She probably will need another
"dose" of IV magnesium and Home Health Care can bring that to her on Friday. After she got home yesterday, she was a renewed girl. She had pink back in her cheeks and she felt well enough to mess around with her magazines and work on her Hilary Diff scrapebook. YAHOO!!!!! She ate her favorite dinner of Daddy's bbq'd teriyaki chicken, Mommy's potatoes, and green beans. YAHOO!

Matt brought home, as Parker calls it, the "Magic Projector" from school and we watched "CARS" on the living room wall last night! It was great fun and a wonderful ending to a very difficult 5 days.

Sometimes the reality of this recovery is stark. We expect so much from this 10 year old little girl. So much responsibility to follow through and do everything necessary for her own survival. The daily necessities become drills, routines, and when the naked truth of it all comes out, it's way too much for one little girl to bear. We, collectively, expect nothing short of complete success at the end of this journey but so much depends on COOKIE and her alone. She takes a pile of pills at 10:00am EVERY DAY, a pile o' pills at 2:00pm EVERY DAY, and a pile o' pills at 10:00pm EVERY DAY. After yesterday, her "piles" have been diminished and the 2:00pm has been eliminated! Without meaning to, we sometimes forget that this 10 year old child has been scrambling for her life for EIGHT YEARS. All she wants is to be normal. Unfortunately, she will never be normal. She's the most extroidinary girl I've ever known. Her brave constitution, the depth of her mind, the quiet delibertness of her personality are beyond admiration. She wants to be normal. She wants to go to middle school next year with her peers. Academically, no problem but she'll never be able to revert to the childish qualities that she was robbed of. She finds things "quite funny" and that's a direct quote. How many 10 year olds say that? I know, I know....I'm rambling. My point was that in order to be successful we've had to make a ton of demands on one little girl and it's been an extremely difficult and soul wrenching experience, to say the least. It effects each of us to our very core and we will forever be changed because of it.

So, with all of that said, we're hoping that the new meds will make the difference necessary to make COOKIE healthier and enable her to go forward with the recovery process so we can continue to reduce the meds and eventually be off of them entirely. She's a little behind her scheduled recovery but COOKIE was always a "turtle" and has always taken longer to recooperate. We'll keep running around our little turtle, like a bunch of hares, pushing her along and keeping her on track.

You should know that I'm still working on posting pictures on this blog. COOKIE's appearance has changed significantly, again. No worries. She's still as beautiful as ever! I can prove it as soon as we get this problem figured out so stay tuned!!!

Once again, we wish you all a happy and healthy November!!
With love,
Cookie, The Grandma