Yay! Last day of cytoxan! Couldn't come soon enough. Last night, at 1 am, Bella started chirping a little louder than usual, so I got up to check up on her. Turns out her constipation was fixed. Without recounting the graphic details of the next 12 hours, let's just say that her body has officially been ravaged from the inside out by this drug. I saw things coming out of every orifice she has that just didn't look... natural. Her skin looks sunburned, and she spent all morning gagging on esophageal tissue that was sloughing off in her throat from the repeated vomiting of the past 3 days. Her fever came and went and came back again, she can't pee on her own, and the chemo has turned her stool to pure liquid. It's not pretty folks. We got up at 1am this morning and didn't get back to sleep till 4pm this afternoon. We snuck (both Bella and I) in a late afternoon nap, and as soon as I finish typing I'm diving back into bed, something I should have done over an hour ago.
She is currently sleeping on her hands and knees, face down in the sheet, randomly moaning. This sucks. The bright part? She had about 2 hours this afternoon before her nap where her fever broke, and she sat up and played in bed. that was a nice reprieve in an otherwise crummy and scary long day.
Tomorrow, Ali gets one more blood draw before Friday's bone marrow harvest and transfusion. Bella gets a day off before transplantation occurs Friday afternoon. Meanwhile, the chemo's darkest side effects are still about 10 days away.
There has GOT to be a better way.
All we can hope is that we are on a continuum of discovery that leads to a better way for EB kids in the future. If so, then our suffering is not in vain.
Thanks everyone for posting where you are following Bella from. That was really neat! We are moved and touched that you have brought her into your life. Thank you. Keep the prayers coming. She needs them.