It’s been a roller coaster summer for us, but we’re feeling pretty confident going into Fall and School season. Zoe had took a few steps back and scared us a bit after a combination of overconfidence and overexposure to sun … Continue reading
It seems like the nature of treatment that we are never able to quite get clear of things before we have a setback. We progress, things improve, and then something happens and we are back where we were a few … Continue reading
Where to begin? So much has happened in the past couple of months since my last update. First, an apology for a lack of news for those still following Zoe’s progress. My father became ill in April, and over the … Continue reading
“Well, here we are. We’ve come a long way from where we were a year ago, having just learned that our child had a rare condition that might kill her. We fought, she fought, and we’ve made it this far, … Continue reading
Zoe had her 6 months post-transplant studies recently, I wanted to offer some of those numbers for families who are looking for another marker in where HLH kids might be after that amount of time. Obviously every child is different, … Continue reading
What a year! Our life has been completely turned upside down by this disease this year, and I’m not sure we’ll even understand how much things have changed until we can look back on it. We began the year with … Continue reading
These past few months we’ve found that it’s really too easy to lose sight of the reality of this disease when things are going well. I suspect it’s due in part to how hard things have been when Zoe had … Continue reading
Thanksgiving came and went in a flash this year. It seems like there is so much going on here, but each time someone asks I’m at a loss to describe where we are. Michelle and the girls are back in … Continue reading
We’ve now gone 30 days since Day +100, and things continue to slowly improve. Our last few visits have seen Zoe’s WBC counts between 5.5 and 6.0, holding fairly steady. That puts her in the low normal range, and she … Continue reading
Today was Zoe’s 100 day post-transplant “work-up”, which means we shuffled through a long day at the Duke Children’s Hospital clinic subjecting Zoe to the same battery of tests that she received before her transplant. She had an echo-cardiogram, the … Continue reading