Sitting in the infusion room as I write today. Aida was given platelets for the first time since she was born, and we're waiting (for almost an hour now) for the cryo infusion (for low fibrinogen). Mom and Dad have been here since Sunday night, but Dad has left this afternoon. They've been a huge help because "crazy" Aida has made an appearance again. There are several possible reasons - one of which is that she was feeling AWFUL from antibiotic over the weekend. As it turns out, someone somewhere made a mistake with the dose - 8 times what she should have had. She was so sick from it that we skipped the last of four doses. Thank goodness!
I jokingly told Mom that the good news is we live so close to Vanderbilt and the bad news is everything else. That's a little dramatic, but the news today really wasn't great. We are now heading down the scarier path we were hoping to avoid. One positive note is that one of our doctors is an authority of sorts and is friends with a (the) national specialist for Kasabach-Merritt Syndrome which is what they are now treating her for. (She still has infantile hemangiomas outside, but they now believe the large ones inside are a different, more aggressive, more rare type.) Our doctors are consulting with this top specialist because the treatments they have been using are not working. The numbers continue to drop quickly after infusions, which may indicate growth of the hemangiomas on her liver and brain. There has definitely been more growth on the ones on the outside, so the former seems likely. Either way, she's not better. She's worse.
So! Pending confirmation of the plan from the national specialist, the plan is to start her on a form of chemotherapy soon. We're told it is a milder drug with fewer side effects, but we won't know until we get there! We're going back to the clinic on Thursday for labs. We're not sure when we'll start the new plan, but we expect it to be very soon. In the mean time, we are hoping sweet, smiling Aida will return soon. It's physically and emotionally exhausting -and just plain sad - to watch her be so uncomfortable and not be able to do anything! We'll update as soon as we have news.
Your prayers are so very appreciated!
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