Friday, May 28

Chemo Round 1, Day 14

Today the hospital's pediatric ophthalmologist came to see Collin. As a result of the brain surgery, Collin's eyes don't line up in the same direction, which is called strabismus. In children, when the two eyes can't focus on the same image, the brain will learn to ignore the input from one eye; if that is allowed to continue, the eye the brain ignores will never see well. The loss of vision in the weaker eye is called amblyopia. After the age of five, when the brain stops growing, the condition becomes permanent. Collin's condition may improve some over time as inflammation in his brain continues to improve. However, to prevent his brain from ignoring the weaker eye, the ophthalmologist is going to have a patch put over Collin's stronger eye for two hours a day so his brain is forced to recognize the input from his right eye, thereby hopefully preventing vision loss in that eye. Then at some future point, if the strabismus doesn't improve as the inflammation in the brain decreases, Collin will need surgery to correct the turning in of the right eye. It will be interesting to see how Collin tolerates a patch over his eye; it's too bad he's not old enough to be interested in playing pirate!

The new stroller I ordered for Collin came yesterday, so my Mom assembled it and brought it in to the hospital. Today Collin's physical therapist evaluated the fit; it works beautifully and supports him well. He seems very comfortable, and we didn't have to make any major adjustments to it. We will use it here in the hospital to get him out of his room when he's allowed; I look forward to taking him to the playroom, and taking him to see the therapy dogs when they come in (the dogs are not allowed not the hem/onc wing because it has it's own filtration system to keep the air clean). It would even be nice to get him outside for a bit when he'd be allowed. Then during the times he's discharged from the hospital and we are coming in to the clinic for outpatient chemo, it will make life a lot easier.

The morning was busy for Collin. I gave him a bed bath, and then the dressing over his Broviac needed to be changed again so the nurse could culture the area that was red, to see if it's infected. The ophthalmology resident had come to see Collin in the morning and put dilating drops in his eyes in preparation for the attending ophthalmologist to see him in the afternoon. Then we tried him in his new stroller. By the end of all the activity, Collin looked exhausted, but he didn't seem to want, or be able, to fall asleep. So after lunch when the speech therapist came, he was very tired and not so interested in tasting things today. He did accept a little milk from the spoon again, but wanted no part of tasting applesauce. So I put him back in bed, and after a while, he finally fell asleep, still clutching the spoon in his hand.

This evening he had his final chemo drug in this first round of chemo, another dose of Vincristine. He also got a higher dose of Neupogen, which is the drug that is stimulating his bone marrow to make more white blood cells. The higher dose had to be given as an injection in the fatty tissue in his thigh, but a numbing cream was applied first, and thankfully he hardly seemed to feel the shot. His blood counts are on their way back up with the help of the Neupogen, and as he makes more white blood cells, his body also makes more stem cells. In a few days, when his counts are high enough, the stem cells are going to be collected from his blood, and then frozen and stored for the autologous stem cell rescue at the end of all of his chemo. In the final round of chemo, Collin will be given higher doses of chemo than an adult would receive in a year, and then his own stem cells will be put back into his body to rescue his body and save his life. By using his own stem cells there is a much lower chance of rejection. The stem cell collection is tentatively scheduled for Sunday morning. It will be done here in his room, and will take a few hours. Once the cells are collected, they will be counted to see if there are enough; if not, the procedure will be repeated once or twice over the next few days.

Tonight after his respiratory therapy was done, I told Collin what a good job he had done as I clapped my hands for him. He clapped his hands and gave me a few high-fives. Then I was tickling his belly button, and he laughed. He still doesn't have facial expression, so when he laughs it doesn't look like he's laughing; it's more like a deep belly laugh.