So, Kayla had an appointment scheduled for the 23rd of August for a blood count check, but we found out the Friday before (the 17th) that Bryson's grandma had passed away that morning. The funeral would be in Salt Lake City on Wednesday, the 22nd of August. I was really glad that this happened to be an off week for Kayla because it was not a big deal to just reschedule her appointment. The plan was to go in on the 22nd and check her blood counts. If they were good, then we wouldn't have to come in the following week. So, I just rescheduled her appointment for the following week, Tuesday, August 28th. I was also glad about rescheduling because we got an appointment with Dr. Hansen, her actual doctor.
Yesterday, the 28th, was her appointment. It always feels a little strange going on a short day. We don't go into the chemo suite except to say hi to the nurses in there. Anyway, we got her checked in, weighed, blood pressure, etc. and then her port accessed, which she is a pro at now. Then we met with Dr. Hansen's nurse for a little bit before he came in.
I like to check in with Dr. Hansen when we can to run past him everything the other doctors or Marnie have told me. I just trust his opinion more than anyone else's, I guess. So, I asked him about starting physical therapy for Kayla's ankles. He told me that he's check with some physical therapists to see what they thought. If it would be helpful then, that would be great. It wouldn't hurt, but if it isn't going to help, I'd like to avoid another weekly appointment. The Vincristine has a side effect that weakens the ankles. If Kayla gets to a point where she is having a really hard time walking, then he would probably stop using that drug as a part of her chemo regimen. Strength in the ankles comes back once you are done with the drug, but Kayla has such a long time to go with it, I hope she can hold on to her strength. She is doing fine with walking and running and playing, but sometimes trips and falls. Which, that is hard for me to tell if it is from weaker ankles because she has always been my accident prone child who can fall flat on her face without any good reason at all. ;)
Dr. Hansen had also been researching Pentamidine a little bit. Kayla gets that once a month through IV to prevent a certain kind of pneumonia. He told me that when he was in Ohio, he was on a team researching if it is more effective given twice month rather than once a month. Giving it to her twice a month would mean more time at the clinic and more times that it would probably be given with Zofran, which has a rare chance of some major heart problem side effects. He isn't for sure yet on what he thinks is best, but he told me that he would look into that more and make a decision.
So, that was pretty much our visit. I guess she will have another MRI coming up in October. And I was looking at the calendar realizing that if she stays on schedule for the next 4 weeks, she will have the first 2 weeks of October off--which will be when I have my baby. That would be GREAT timing. :)
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