We had a visit from Dr. S yesterday afternoon, and it was very positive overall. Zoe was feeling good and smiling, and we were able to discuss her status.
Her WBC was 0.1 yesterday, but on Mondays they do a manual differential, which means that they actually look under a microscope and count the cells. The daily cbc is done by machine. So they actually saw white cells under a microscope, no possibility of machine error there. Dr. S felt that we are exactly on track for the start of cell growth, maybe a few days early — day 14 he said was typical, we were day 12.
We talked about the Reduced Intensity Conditioning study that Zoe is on, which Dr. S heads, and so far they have used this protocol with 7 other patients. Only one of them had any notable GVH, most of them had very very mild if any at all. Zoe has had a very mild bit of GVH on her cheek (the redness seen in recent photos), but he felt it was at best a 1 on the scale, so not a concern.
All 7 of the kids they have used her protocol on have had successful grafts. Very very good news. They feel that Zoe is shaping up exactly as expected, which in medicine I gather is a great thing. Wonderful news.
Zoe’s mild tissue breakdown in her mouth from mucositis is healing, as is her bum. We haven’t needed the “open air” strategy or any special medicines for it for a couple days now, just her cream.
The WBC count today was again 0.1, which means we seem to be holding steady at the moment with some cells. It will likely go up and down, what we’re hoping for initially is 0.3 or so for a few days, that will indicate some stable progress with cell growth.
Assuming things continue as expected from here, we’re looking at a nice long stretch of waiting while Zoe’s cells grow. We may see some increased redness from GVH if the cells rush in too quickly, but it’s not anticipated. Zoe may have a higher chance of that because she is the youngest on the study, and she got the most concentrated cell dose, which is a good thing in most respects. It does mean her cells may grows fast enough to generate a reaction, however. We shall see.
Zoe has been feeling well enough to start playing with the bottle again. She’s been unwilling to take it for more than a moment, we assume due mostly to mouth pain, but it’s a good sign that she’s willing to take a little now as she’s healing.