Day +48... Domino Effect

Today was our first clinic day in six days. Our longest "stretch" not being at the hospital since February 1st. In a way this is great. In another way it creates anxiety in us about what we might be missing etc. Sam's numbers as far as her "blood counts" continue to look good. Hemaglobin is holding steady, platelets are holding, and WBC are stable in a safe range. This is all good except that we are still on steroids. It will be a more true test of her ability to produce and hold all three lines once she is completely off of the steroid for some time.

Unfortunately that may not be for awhile. Last week after clinic her mystery rash returned and we "restarted" the previous antibiotic we had stopped for about a week. This time she was definitely more bothered by the rash and would cry, and shake her head back and forth saying "itchy!". After re-starting the antibiotic on Thursday, by Monday it was clearing up again. Late Tuesday night though she started having bad intestinal issues and this has continued over that last two days. Diarrhea around the clock is no fun for anyone. So today they tested her for C-Diff which she has had twice before as the strong antibiotic that she was put on for the rash puts her at risk for infections in her gut since it is killing all "good bacteria" as well. So far that rapid result came back negative but a full "stool culture" result can take up to one week. I am hopeful it will be something we can identify not only so we can treat it properly, but also so that it is not indicative of GVHD (graft vs. host) disease moving to the gut/intestines. We have decreased the antibiotic to 1x per day instead of two and will return to clinic Monday.

At times it definitely feels like we are "chasing our tails" with a domino effect of one drug causing a side effect leading to another infection or the need for another drug etc. This can be certainly frustrating but I do feel like the docs are only giving her what "makes sense at the time" and not trying to overload her despite her intense continued med regimen. One of the side effects of cyclosporine which is a strong med she will be on for at least 6 months is increased hair growth and making hair darker. In this past week, Sam's eyebrows have significantly darkened for sure! It is very noticeable to us and in comparison of pre-transplant status. Her cheeks are also starting to swell from the steroids despite the fact that she hasn't gained an ounce:) None of these cosmetic things matter, but it is a visible reminder as a parent of the intense change your child has gone through and makes you wonder if these visible changes are happening, what other sort of side effects are going on/or are to come that we can't "see" from the strength and constant meds given at such a young age. These thoughts come and are quickly pushed aside though as you know you don't currently have a choice so the intense worry is useless energy. You ask as many questions as you can. Make sure you find the best docs that provide consistent care week to week and get to know you and your child. And from there, you have to start to trust... Not easy, but it's the only way.

Overall I know things really are going fairly well for Sam as a day + 48 bone marrow transplant patient and for that we are incredibly grateful. She really does laugh a ton and has an incredible sense of humor. Every day she is home she has fun most of the time. Regardless of numbers, meds, or symptoms, that is something to celebrate
for sure!!!