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7/24/05

9:00 PM (Susan posting): We've had a very good day today. Sophie and I were homebodies while Randall and Elisabeth did the church thing. I told Sophie that we would get to stay home together while Daddy and Elisabeth went to church, and I managed to make it sound exciting enough that she didn't mind when they left. We enjoyed our time at home, and before we knew it, they were home. I spent most of the day packing away lots of things in Elisabeth's room. She now has a much more manageable amount of stuff. I worked in Sophie's room too, but we still have some things to put away in there too. I wanted to make room for some of the new toys the girls received from my stepmother Eileen's co-workers. One of the nurses she works with has a daughter who survived cancer, and she wanted to return some of the generosity shown to her family during their tough times. It was just the right balance of identical toys for both girls (so they wouldn't argue) and individual age-appropriate toys and gifts. The girls were thrilled, and we were touched. It was yet another moment of grace shown to us as we are preparing to face a very intensive phase of her treatment.

After dinner tonight, Sophie and I stayed home again (we watched "The Incredibles") while Randall and Elisabeth went to the first night of Vacation Bible School. Tonight was the kickoff and lessons will begin tomorrow. It sounds like they will have a nice manageable number of kids.

Tomorrow, the home health care nurse will come to draw blood and help with the dressing change (although Sophie has already said she wants to pull it off herself again--Amy will be quite impressed, I think!). We'll find out in the afternoon whether her ANC (Absolute Neutrophil Count, which is based on the white blood cell count) will be high enough (.75) to begin the fourth phase of treatment on Tuesday. She seems unusually pale and has a fair number of bruises, so I suspect her counts will be too low. On the other hand, her energy level is high, she is in a great mood nearly all of the time, and she has a really good appetite (six bowls of cheese grits today, in addition to quite a few other things). Her other surprising physical development is that she can roll her tongue. Randall is particularly proud of that, since he can do it, but Elisabeth and I can't. Ah, the wonder of genetics.

Although we're eager to move forward with treatment, we're also dreading the number and complexity of medicines (and associated side effects) that come with this phase of treatment (called "delayed intensification"--I'll post the medicines and schedule once she starts). This may be when she finally loses all her hair (which would be unfortunate, since what she had lost is now starting to grow back in).