Day +17

WBC- 2.9
Hgl- 10.2
Hct- 29.9
Plts- 28
ANC- 1.9 (without neupogen!)

"Recovery can be like a roller coaster ride: one day you may feel better only to awake the next day feeling as sick as ever."
We are certainly experiencing that roller coaster ride. As Claire's counts have gotten better, she has felt better. Yesterday she was allowed to leave her room for the first time since she finished radiation, and she went for two small walks around the Immunocompromised unit. Eating continued to prove challenging, but she was able to be completely unhooked from Fransisco. Unfortunately, one of Fransisco's functions was to provide a constant drip of Morphine to control Claire's pain. Morphine is basically the legal version of heroin, and once that was stopped, Claire went into pretty severe withdrawal. She had shakes, stomach pain, nausea, clamminess, and agitation with diarrhea and vomitting. It was a pretty miserable night. They had to let Fransisco give her some more morphine as they try to switch her, more slowly this time, from IV morphine to oral Oxy then slowly wean her from the Oxy. Our nurse said she sees this all the time as these kids come off of pain meds. It's a real side effect of treatment that people rarely think about.

But we are trying to look at the big picture, which is pretty good at the moment. As Dr. B said, we have made it through the first big milestone. The next one is the 100 day count. David and I have talked about how hard it is to answer the question we are asked so often, "How is Claire?" Well, how long do you have? Because the answer is not that simple. We usually answer, "She's doing good," (bad grammar and all) or, "She's hanging in there." Neither are anywhere close to the whole picture. Her doctors are very pleased with where she is. But no one, except the medical team and us, could understand how hard it has been to get her here. I ran into Dr. A, our oncologist, in the hall yesterday. She has been out of town, but one of the first things she did when she got back was ask the transplant team how Claire was. She was tearful thinking about how hard it has been. She reminded me how concerned Dr. B had been about Claire's liver (which, in his words, has "behaved beautifully) and she even said "Claire's re induction was harder than ANYTHING." I have friends who are trying to get to a point where their children can have a transplant. I met a lovely woman at hospital church on Sunday. She was there delivering soft blankets in honor of her 17 year old daughter Miranda who passed away last year. I told her that my daughter just had a BMT. She said that they had tried to get Miranda to that point, but it wasn't in God's plan for her. It was both sobering  and inspirational.

So, I can only caption pictures on my laptop, but not on my iPad, so I will describe the pictures here. The first is Claire looking at some amazing pictures from Magna Elementary. They did a project called Dragons for Claire. (Thanks, Robin) Then there is Claire on the outside of her room (!), sleeping through this morning's EEG to see if she can be weaned off of her seizure meds (she can), and Fransisco loosing weight on the pump removal diet.