Saturday, May 29

Today was a quiet day. The first round of chemo is over, the mucositis is gone, and Collin's counts are coming back up quickly with the help of Neupogen. Collin had another high dose injection of Neupogen this evening, and his oncologist feels positive that his white blood cell count will be high enough to do the stem cell collection tomorrow morning. With his counts rising, talk of discharge to home before the next, less intense, round of chemo has come up; however Collin's oncologist is considering repeating this first round of chemo right away since he has responded so well. Apparently the Head Start III chemo protocol which was the original plan for Collin's treatment has had more children come through treatment with fewer long term side effects such as hearing loss, etc., but overall has a slightly lower survival rate than the Head Start II protocol which used more cycles of high dose chemotherapy with a slightly higher rate of long term side effects. Since Collin is too young to undergo radiation without suffering catastrophic losses in development and overall quality of life, his oncologist wants to give him the best possible chance at survival. I figure at least he can LIVE with some hearing loss; we can deal with that, and whatever other side effects we may have to contend with. The important thing is that he'll be alive. So if his oncologist feels the best thing is to repeat this first round of chemo instead of doing one of the less-intense rounds, then I'm OK with it. Seeing him continue to improve will get me through anything.

Today was the first day Collin wore the patch over his left eye. Overall it went well; he didn't seem to bother with it too much. I did my best to keep him occupied so he didn't fall asleep during the two hours, which would defeat the purpose. I hope he continues to tolerate it as well as he did today. I also got him to laugh and smile a few times today; I think the small change in his face when he smiles is becoming more noticeable.