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.