Sophie's World

12:00 PM: Sophie was scheduled for her monthly treatment this morning. No spinal tap this time (just vincristine), so she and Randall didn't have to leave at the crack of dawn. He just called to say that everything went great. We've been talking to Sophie a lot about the blood draws and how to make them more comfortable and less scary. One of the nurses had suggested last time that she try to relax, which helps the blood flow better, so we spent a lot of time showing her how to tense up and then relax. She had a lot of fun with that. This morning, we talked through what would happen and developed a whole plan for how things would go. Randall said she was fine until they called her, and she was just going to go play in the play room, so she was immediately upset about the change in plans. She screamed and cried all the way into the room where they do the draw and was really agitated, as usual. When Mary (the nurse) sat down, Randall told Sophie that they should explain to Mary everything they had talked about and how they wanted to do things. So, as they started to talk about picking out a bandaid before getting started, and that Sophie wanted to do it slowly, and she wanted to watch, etc., Sophie really started to calm down. From that point on, she held still, didn't cry, watched every move Mary made, and did really well! When I talked to her on the phone, she told me she was shaking a "little bit" but next time she wouldn't be so scared. I'm starting to think we just might get to the point where blood draws are no big deal. Her counts weren't back when they left, but the doctor said he had no reason to think they would be low and would call us when the results were in. If her counts are high enough, they'll bump up her dosage from 50% to probably 75%.

Randall also had a nice meeting with Dr. Gold, our primary attending physician (we always meet with a doctor or nurse practitioner before getting treatment). Randall had a few more questions about how things will go at the end of treatment. We had learned during our last discussion with him that all chemo ends on May 31, and they schedule a bone marrow and spinal fluid aspiration for two weeks later. Unfortunately, that's right around the time we need to be leaving for New Mexico (I'm sort of in denial about that, since I'm torn between staying and leaving). Anyhow, Dr. Gold said we would just schedule the aspirations for June 5--a sedation day in the clinic (which means we don't have to schedule a procedure in the main hospital). That gives us a lot more flexibility for moving, and we won't be so worried about the results. She hasn't had her bone marrow checked since February of 2005, so we're eager to know that everything is okay.

Meanwhile, Sophie's headaches seem to be all but gone. She'll continue another week of clindamycin, but Dr. Gold said we could try stopping the flonase (which she handles really well--you ought to see her!). Elisabeth and Randall both seem to have recovered from whatever they had. I, however, am still suffering with something. Lots of head and chest congestion, and it's starting to make my asthma kick in. If this is anything like past illnesses, I'll probably be sick for weeks on end, until I get some really strong antibiotic or steroids. Speaking of steroids, Sophie started her five-day course this morning, so please send positive thoughts our way. We never know how bad her mood or appetite will be. Let's hope this is an easy month.