December 22-23, 2011

Reinforcements have arrived. Grandpa Snell came down Thursday night, and Grandma Snell and Uncle Josh late Friday night. It sure helps to have other people around to assist with SD!

These days have mostly just been more of the same. SD barely slept Wednesday and Thursday nights; we tried giving him Tylenol, but it didn't seem to help much. He kept waking up a lot and got anxious quickly if we weren't right there. Mandy stayed with him Wednesday night, and Stephen stayed Thursday. Holding SD's hand was about the only comforting thing we could do.

SD's speech is still quite slurred, though he is using some phrases; here's an example of his speech at this point:

Stephen and Mandy are the only ones who can currently understand him, and even we have difficulty.

SD is still miserable all the time. This week his upper chest, neck, and jaw seem to be bothering him more. We suspect the jaw pain is a side effect of the vincristine. We're (literally) counting the days until he's off the dexamethasone; its side effects are cumulative, and they're gradually getting worse. These include irritability, sleeplessness, food obsessions, and nervousness.

However, once again we are reminded that others have it worse. The hospital gave us a great book called Childhood Leukemia, which has been a tremendous help! One nice aspect of that book is that they include hundreds of testimonial excerpts from parents (and children) who have experienced childhood leukemia. These show how different children have an almost infinite variety of responses to treatment. This week we read the section about dexamethasone side effects; even though our situation isn't easy, it's better than what Katy's parents had to go through:

When she was on steroids for a month straight, she hallucinated horrible things. She'd scream that boys were chasing her or that her heart had stopped beating. She'd sob that I was melting and would disappear. She'd dig her fingers into my arm begging me to help her. She sometimes did this all night, and nothing consoled her. She slept very little while taking steroids. She spent day after day and night after night in my arms while I rocked her...

We are so thankful that SD is doing so well! He has a difficult time, but on the whole is rising to his challenges; and his cancer is reacting well to the treatment, too.

In other news, Emma started walking Thursday night! She has been such a joy through this trial - starting in the hospital and continuing even now. She stays cheerful, and helps our spirits as well!