We've checked into the ICU for Esther's second antibody therapy. You certainly gain some funny looks when you just walk in to the ICU for treatment.
This round of treatment needs to be in the ICU because the growth factor she received to tell her body to release cancer fighting cells has an extra something that causes them to bind more strongly to any neuroblastoma cells...and since neuroblastoma looks like nerve cells, it also binds more strongly to nerve cells. I think that's right...sometimes my years studying biochemistry come back, and I understand. Other times my mommy heart and study of Human Development & Family Studies listens more carefully and all I hear is "this will hurt more."
I am happy to report that we are about 60 minutes from finishing today's dose of medicine that causes all of these nasty side effects and the day has been fairly uneventful. She has had a high fever most of the day and some significant pain, but it is being controlled pretty well. In the last hour her blood pressure has started to dip, so the nurses are working to get it back up. All of this is relative...a full day of a 103 to 104 degree fever, a heart rate up into the 190s and 56 respirations/minute would be quite concerning in normal circumstances. We are in the right place.
Our child life specialist, Alli, brought Esther a new Strawberry Shortcake doll. She has a white streak in her hair that when painted with cold water, turns dark pink. Esther painted her hair all. day. long. I was cracking up watching her "paint" as she fought sleep most of the day. Just now she was painting in her sleep.
This video is of her combing the part of the hair that you can paint, I thought it was a little funny the way she was so determined...this girl was SO tired, but she wanted to comb it so her hair wasn't crazy. She did this for a few hours today with some good snoozes in between, but she would wake up mid stroke and keep combing or keep painting. I do this sometimes when I'm writing an update, but I don't recover quite as quickly...my head bobs and I end up typing like this....kkklllllllllllllllafffffffffffffffffffff.