We’re fully into the Mucositis now, and while it’s painful to watch Zoe struggle with it, it is part of the process.
What’s happening is that the chemotherapy has eliminated her white cells (which heal her) and caused much of the fast-growing tissues to break down with sores. That means her mouth, stomach, and digestive tract is raw, and where she can she is producing mucus as the body tries to deal with the sores without white cells to heal them.
It’s rough on her, but she’s doing as well as could be hoped we believe. Her spirits are mostly ok, she isn’t very playful or smiley at the moment for obvious reasons, but she isn’t in obvious pain most of the time either. We’re just trying to keep her comfortable.
Zoe has put on a bit more weight from all of the fluids, including a blood and platelet transfusion last night, so she was given her first dose of Lasix this morning very early. She apparently, erm, released a great deal of her trapped fluids from that in the very early morning. She lost more fluid than she put on for the first day in several, so the lasix did it’s job.
We seem to have settled into a rhythm for this phase of things. Zoe wakes up in the morning, has a lot of mucus to get rid of and has to do that, then after a bit settles down. Around mid-day she is in better spirits, even has a smile here and there and lets me play with her a bit. She goes in and out of this mood as the day goes on, with occasional bouts of pain and mucus, which finally settles out around 2 or 3 am when she gets to a decent sleep.
This will continue until we begin to see white cells, which will immediately begin to heal the mucositis.
On a programming note, I’ll be trying to post a picture most days for the purpose of documenting Zoe’s progress through this, but there may be days when they are a little less than flattering. From where I sit though, it’s hard to catch her not looking cute.
Kidneys that respond so well to Lasix is very good news! The mucositis, as you say, will be temporary, and I know you’re grateful for the wonders of Fentanyl.
I saw in the recent labs a WBC of 0, so I’m sure even a blip on that scale will be welcome news – I will visualize her new white cells heading directly to for her GI tract.
Evan, there’s no way to catch her not looking cute. Her cuteness just shines right through this entire ordeal:). Mara
I agree with Mara as her cuteness shines right through.
Thinking of you all and all that you are going through. Lifting up prayers each day!!