« 3/27/05 | Main | 03/29/2005 »

3/28/05

9:15 PM: Sophie was a pretty happy kid today. She was fairly clingy, but it was so sweet to hear her ask me to sit with her or watch her dance. It's so hard to work at home, when I'd rather be holding her and playing with her. Elisabeth went to Duke with Randall today and joined him in class. She did well, and she is looking forward to coming to work with me tomorrow while Randall and Sophie go to clinic. After dinner tonight, we changed the cap on Sophie's catheter, flushed the line, and changed her dressing. We only have to change the dressing once a week, but as always, it was pretty traumatic for her. She spent the next hour scratching at the new bandage and saying it hurt. Partly, I think she was just tired, and anything would have irritated her at that point.

To clarify a comment Randall made yesterday about being midway through this phase of the protocol, it might be helpful to review her protocol. The first phase is called "induction" and lasts 28 days. The phase she is in now is called "consolidation" and lasts 56 days (two back-to-back 28-day cycles). It involves weekly clinic visits (we will be at day 21 tomorrow). The third phase will be "interim maintenance"--it involves clinic visits every 10 days (alternating Tuesdays and Fridays) and lasts 48 days. The fourth phase is "delayed intensification"--it involves mostly weekly clinic visits (with some weeks off) and lasts 56 days. The fifth phase is called "maintenance"--it involves monthly clinic visits and lasts for two years from the start of the interim maintenance phase. Sophie will take a short break at the end of each phase to allow her blood counts to recover before proceeding to the next phase. Assuming that her first break between phases (about 2 weeks) was typical, she should be starting interim maintenance in the middle of May. That will mean she could be done with all the chemo in mid-May 2007.