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.

So, this is my blog. I have been avoiding doing one because 1. I am technologically challenged. My daughter-in-law Alex set this up for me at my request because she is not technologically challenged. Thanks, Alex. And 2. Who has the time? Seriously. But, since so many of my neighbors and family are not on Facebook, where I have been posting most of my updates, a lot of people who really care about Claire have been left in the dark. Also, when Claire is feeling well enough to go out and about with us, or even when she isn't, it is so emotionally tiring to update everyone on what is going on. As we get closer and closer to transplant (about two or three weeks out) this blog will be my main way to let everyone know what is going on. So don't be offended if you ask me how Claire is doing and I smile and say, "Check out my blog." I'm just taking care of business.

This week hasn't been too terrible. Ok, now that I'm thinking about it maybe it has been for Claire. She has been recovering from a liver biopsy that has left an eight inch incision across her abdomen. I didn't think they even did huge incisions like that anymore! Battle scars. The GI docs said that it was one of their most painful surgeries. Great. Then on Saturday, when she was in the hospital getting chemo, she threw up her NJ tube. That's the one they put directly into your intestines, bypassing the stomach, that is supposed to be a lot harder to throw up. (She had also thrown us the NG tube that went into her stomach.) So on Tuesday she had an appointment with radiology to put it back in, as well as a pulmonary function test. While we love being at a children's hospital because the atmosphere has so much life and hope, sometimes the people treating Claire forget that she isn't five, and the pulmonary technicians were guilty, haha. Claire can laugh about it now, but at the time it was super annoying. Thank goodness we went out for pho in between procedures! (Claire has a pho obsession.) Then we had a clinic appointment and blood draw on Thursday. BTW, they never treat her like she is five in oncology. We love them. Things are on track, but Claire's doctor would really like her to gain weight and get a little stronger before transplant. It's a real thing that as your cancer child gets more and more emaciated, the parents frequently gain the weight they want their child to gain. oh, well. A time and a season for everything, right? So, for about fifteen hours a day, Claire is hooked up to a feeding tube. She is also being treated for a yeast infection in her upper intestinal tract, so she is  hooked up to IV antibiotics through her central line for a few hours at night, too. My husband David and I have been taught how to do all of this. Tonight as I was mixing the antibiotic into the saline and prepping the line and hooking everything up I told Claire that I sometimes can't believe the things they let parents do! What if we mess up? Fortunately she remembers the steps and keeps us on track. She could probably even do it herself, but with her central line currently in her arm, it is almost impossible.
Well, that's it. My first post. Everyone is in bed and the house is quiet. Goodnight Irene.