Since I am sitting in a hospital ALL DAY today, and since Claire is in a Benadryl induced sleep, I thought I might do a blog update. Claire is here getting a blood transfusion. She had chemo two weeks ago, and it was expected that her blood counts would be dropping now. I can usually tell when she needs blood. She gets very pale and tired, and often has a headache (which can also indicate low platelets). So, we got here at 9:30, and by the time they did vital signs and drew blood it was 10:15. Then it takes about two hours to cross and match so the blood is ready for infusion. During that time, I talked to the transplant coordinator, the nurse practitioner, the psychologist, (More of a social visit. He would be our friend in the real world, I think.) and our doctor. We've gone over blood work and have discussed possible explanations for Claire's ongoing stomach cramps and diarrhea. Yesterday our home nurse pulled out Claire's feeding tube because it didn't seem to be helping, now she is getting nutrition through her central line (TPN), so we discussed that. I doubt that we will be busting out of here before 5:30 or 6:00. And all the while the nurse is taking Claire's temperature and blood pressure, which I am watching like a hawk. With the transplant coordinator we discussed timing. Things have been delayed because during Claire's induction she developed a serious infection that damaged her liver and we have been waiting for it to improve. It did, but then she had a liver biopsy which shocked her liver, so a few of the numbers are a little off now. This is an issue because liver function will help determine what transplant protocol they follow. The transplant doctor is hoping to do the full body radiation protocol. Regardless, it looks highly likely that Claire will be in the hospital on Thanksgiving and Christmas. We were hoping to not have a Christmas stay, but you do what you have to do.
Claire had a nice time on Saturday. She had been looking forward to seeing Mary Poppins at her old high school for weeks, and was really hoping that nothing happened to keep her from being able to go. She loved seeing the show, but even more than that, she loved seeing her friends and teachers. I haven't seen her walk as fast as she did to catch her orchestra teacher before he left the pit in weeks! And everyone was so great to her. She was able to say hello to people one at a time instead of in a big group, which can be really overwhelming to her. My favorite thing was that every time someone asked how she was, Claire responded "I'm good!" It brought me to tears, and also made me remember how isolating cancer is. I mean, I am grateful for the people who bring cards and leave gifts on our door, and who have done such helpful service for us. But the people I adore are the few friends who have come over and just talked to Claire like she is normal. Like they would talk to anyone else. Those are the friends I will always remember.