We’re out of the hospital for a few more days, it’s our last true break before things really wind up. Tuesday is the beginning of Zoe’s pre-transplant conditioning, a process that will take about 3 weeks. We wrapped up this … Continue reading
As we work our way through this, Michelle and I have given a lot of thought to how we might be of help to future families facing an HLH or similar diagnosis. We have not yet figured that part out. … Continue reading
It’s Monday and we’re back to the day hospital at Duke. Today was blood draws and a redo of the GFR kidney function test. On Friday they took a Cyclosporine level and it was really high, 590 or so, which … Continue reading
Shew. Long week, but very satisfying in some ways because we now know everything about Zoe from head to toe. No more worrying about what we don’t know, now we only worry about what we do. She’s been poked, prodded, … Continue reading
A lot more information today. Some days it feels like we’re drowning in medical data and decisions. Michelle and I have been working through the options and doing our best to understand each path using our own research and what … Continue reading
After yesterday’s post we got a lot of feedback, and today we have some new questions about the Reduced Intensity Conditioning and whether or not it will be right for Zoe. We’re working through those questions to be absolutely sure … Continue reading
We’ve decided to go forward with the Reduced Intensity Conditioning (RIC) for Zoe. As I mentioned yesterday, it came up again in conversation with Dr. M, and after a long meeting at Duke where we discussed both the RIC and … Continue reading
Today was a stressful day as the start of our transplant process. Duke’s team couldn’t have been better, but I think there was really no way around our being a little tense at the outset of this. Among the topics … Continue reading
This week will begin Zoe’s transition to the care of Duke Medical Center, specifically the Duke Pediatric Bone Marrow Transplant unit, or PBMT. We have a total of 19 appointments this week, so we shouldn’t lack for activity. For the … Continue reading
I’d like to note a few things about Zoe’s development, since that is one of the things that can be affected by this process. The two main threats to good physical and neurological development are the extended use of steroids, … Continue reading