5:45 PM (Randall posting): Just when you think you've got life all figured out, you get a curveball. Sophie's counts came back a while ago and they're actually lower than they were this time last week. Treatment this week is definitely out of the question, so we're off for yet another week. This was not in the plan, but I can't say that either of us is disappointed. I don't know if you noticed the dread in our voices as we described the next phase of treatment, but if you didn't notice it, it was there. We're really, really not looking forward to three solid weeks of steriod treatment, plus all the additional drugs, plus two new drugs that we haven't ever had yet. Although that phase cannot be avoided, it won't happen this week and I suppose we're thankful for that.
Thinking her counts were rebounding, I took Sophie to Countryside this morning after home health care (which went very, very well, by the way). Sophie enjoyed visiting and playing outside and in the three-year-old classroom. There weren't very many old friends in the 2-year class, but there were a couple, and there were some happy little reunions on the playground. Sophie enjoyed visiting the three-year-old classroom and, as you might expect, there were more familiar faces there. When it came time to leave, she was not happy about leaving and cried all the way home. I sat with her for a while once we got in the house and she cried and cried. I then asked if she wanted to lay down, and she did. Before long, she was asleep and she hadn't even had lunch yet. After a relatively short nap, she got up and got a late lunch.
Getting back to the home health care visit, it went really well. Sophie pulled the dressing off herself and when it came time to clean the site with the swabs, Sophie laughed (!) and said that I was tickling her. A couple weeks ago she would scream bloody murder and kick and cry her eyes out, and now she's laughing and giggling the whole time. I never ever thought that would happen, nor did I ever expect it to happen, but it has been a little, unexpected blessing in this whole situation. As I was working on Sophie's dressing, I told the home health care nurse that it is hard to imagine that we'll be doing this for another two years almost! Who knows what giggles and laughs and blessings we'll stumble across in those two years?