So, here we are, spending the day in clinic. It started out pretty routine. Blood draw, check up. They stopped her remaining immunosuppressant, which means one less drug. They (her medical team) had already taken her off of one anti nausea med, and suggested she taper another just to see how her body reacts. Then the IV team came in to place an IV (no central line anymore) so she could receive her monthly infusion of Pentamidine, a prophylactic, or preventative, antibiotic. After about 25 minutes she started getting a rash and red streaking up the skin where the vein that was being used was and feeling some tightness in her throat. I told a nurse, and within seconds there were 7 medical people in our small exam room taking vitals, stopping the infusion, asking questions. Claire was given Benadryl, which totally knocks her out. They have decided to place another IV in a (hopefully) bigger vein, slow down the rate of infusion, and continue giving the drug. We won't be getting out of here anytime soon.
Yeah, the IV team just came in. It took them two tries to get the bigger IV into the bigger vein. Ouch. Poor Claire lost it. After everything she's been through, which is A LOT, getting poked for an IV is still the very worst for her. I told one of our nurses that every so often we get a reminder that all of this, even the things that seem routine, is still very serious business. I'll just add one more notch to my anxiety belt, I guess.
Aside from today, aargh, things have been ok. I think. No, they really have been. I'm seeing bits of improvement in Claire's walking. She has had a few small adventures like seeing the musical at her old high school and feeding some penguins at the aquarium. David and I went to NYC for 6 days (it was amazing!) and Claire and the other kids did great without us. I did get one funny text, though. I had given the girls chore assignments so the house wouldn't actually fall apart while we were gone. The second day we were away Claire sent this: "Well, it turns out you need to be able to walk and be strong enough to push a vacuum in order to vacuum, and I discovered today that I can do neither. So I had to pass off the job." Points for trying, right?
One bright spot today is that her blood counts look pretty darn good.
WBC- 4.3
Hct- 35.1
Hgl- 11.3
Plts- 119
ANC- 2.2
And, even though our children's hospital says that it doesn't offer soda to patients anymore, you can still find Coke in the oncology refrigerator. Because sometimes, when you are a kid battling cancer, the rules just need to be broken.
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