11/2/05
8:00 PM As elated as I was yesterday to know that Sophie had finally started maintenance, that has all been tempered by the reality that treatment is treatment. There is still a lot of medicine to manage, and it is a little bit overwhelming. Sophie was especially emotional today at times, and it's hard to know if that is just where she's at (she got up at 6 o'clock this morning) or if it's the medicine (steroids) or the flu shot. There is no escaping the concern that there is something wrong that we need to take care of, or at least the possibility that something might be wrong or might go wrong. She looks pale to me, there is a big bruise where she got her spinal tap yesterday, her hair is growing back, but ever so slowly (too slowly?) and to top it all off, a young girl we know from UNC appears to have relapsed (within a couple of months of completing her treatment) and now will probably need a bone marrow transplant, if a donor can be found. Aside from being quick to cry today and taking an exceptionally long nap (four hours!), Sophie has had lots of energy.
Both girls are playing noisily in Sophie's room right now, so it's a little distracting! Elisabeth got her report card from school today and she made all A's. We're very proud of her and hope that she continues to enjoy school as much as she seems to right now. In fact, she's enjoying school so much, a lot of her favorite foods (including sausage) are preferred only if they're at school--does anyone else know a kid who actually prefers school food?
Susan just reported on her phone call with the doctor at UNC (she had called about one of Sophie's prescriptions). Apparently, many of the kids are quite tired the first couple of days after the flu shot, so that is one possible explanation for Sophie's whining and crying (and why she slept so much today). We'll be sure to see if she perks up over the next day or two.