Saturday, May 22

Chemo Round 1, Day 8

Today marks one month since Collin was admitted to the PICU following that first MRI. It's so hard to believe; the time has flown! At least it has stopped feeling like one long, never ending day. And at least now I am less afraid that any sign of something not being quite right is related to hydrocephalus; I see pieces of him coming back every day, and due to changes in his behavior, I really feel the chemo is working and getting rid of what shouldn't be there in the first place. At one point I questioned why we were putting him through all of this; but I know there was no choice, and it's the right thing to do. And I feel more confident that it's working every day. That is what will help get me through the rough times still to come.

Last night, I began to realize that his reaction to the IVIG yesterday was very serious, life threatening. On some level I knew it at the time, but I kept myself in denial. It was very hard to go to sleep last night. I stayed awake as long as I possibly could, but when I physically couldn't keep my eyes open anymore, I gave in to sleep. This morning when I woke up, I learned that he had a temp over night (at it's highest it was 102), despite being on Tylenol because of yesterday's event. The care team followed protocol and did blood work to see what his white blood cell count was; it came back as 0.1 (normal is between 6 and 17), so they immediately put him on two broad spectrum heavy duty antibiotics. I knew this was coming, but it still terrifies me. The worst can happen during this nadir, the time when his immune system is non-existant, but that's why we stay in the hospital. His temp is taken every four hours, and at the first sign of a fever, which in someone with no white blood cell count is the only sign of life-threatening infection, he is treated aggressively with antibiotics. I've been told the first round of chemo is the hardest because you don't know what to expect. It's scary to think about, and it's hard to see your child so sick. Collin has had many episodes of vomiting today due to the mucositis. His poor little body works and heaves and wretches to throw up stomach bile and mucus, and then he is so worn out he falls asleep. But thankfully he doesn't seem to be in any pain. The continuous morphine drip seems to be a good thing. And he had moments today where he was alert and interactive, despite being exhausted and not feeling well. He threw a ball to his nurse and Bill and I. He again played with the syringe the nurse gave him the other day. He looked at the pictures and turned the pages of a board book as I held it for him today. And he held on to the iPhone with both hands and ENJOYED his favorite music videos, and even tried to open his mouth and make the barking noise he always made at home when he watched the Wishbone intro. Every day we get another piece of Collin back, and the joy I feel cannot be described!