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11/29/05

3:20 PM: Sophie and I had a good day at the clinic today. We left very early (5:50 AM) and arrived at 7:20 only to discover that we were 8th in line. Next time, I'll try to leave closer to 5:30 when we have a spinal tap scheduled. Anyhow, we had a good time once we got settled. Sophie's "Carolina Pal" Adriane came and played with her on the computer while I played my Sudoku number puzzles I had brought along and talked with the other parents. Once again, one of the parents I talked to had just gotten news that her daughter has relapsed. Libby (who is about 5, I think) was undergoing treatment for ALL (the same thing Sophie has) and had been in maintenance therapy for about 8 months (we're in month 2) when they found abnormal cells in her spinal fluid after a spinal tap. So now she has to start all over again with an even more intensive protocol that includes radiation (but she doesn't have to have a bone marrow transplant). The good news is that the prognosis is still quite good--75%--since she relapsed so long after treatment started. I know this family must be going through so many emotions right now. These stories are scary to hear, and it's hard to know what to say that will be comforting and not trite or superficial. I guess the best thing to do is just listen.

When it was Sophie's turn to go into the sedation room (just before 10:00), the anesthesiologist came over to the play room and gave her an injection of versed to calm her down. That worked pretty quickly, and she had that loopy expression on her face and was pretty relaxed. As we walked through the doorway of the sedation room, I tried to keep her face buried against me, which worked pretty well. She whimpered a little bit, but they injected the propofol quickly. Just before she lost consciousness, she looked at the nurse and said in a sluggish voice full of wonder, "You have two eyes!" Dr. Gold said she did well, and she was already waking up and fussing as they brought her into the recovery room. She asked several times why she felt so dizzy, but she cheered up pretty quickly (the bowl of cheese grits I fed her helped a lot). Not long after that, they injected vincristine and her steroid (so we won't have to give it to her crushed up in yogurt today at least). Her counts looked good. Things are on the low side, but everything looks exactly as they would expect given what she's taking. Her ANC was 1.1, and although that's a little bit low, they said we shouldn't worry about taking her out of day care at that point.

Randall had left his parking permit for Duke in the car we were driving and ended up missing his morning class, so he met us for lunch (which was a wonderful surprise) and picked up the permit. We all enjoyed our pasta, and Sophie watched a DVD on the way home (which was great, because that meant she took a nice long nap when we got home). The girls and I are on our own tonight, and we'll have dinner together before heading off to dance class.

Comments

hello Susan, its Marie. Glad to see everything is well. Im still praying for Sophie and your family ((hugs))