We’ve been really pleased so far with everything about Duke. Great people, great care. I wanted to post a video that our Nurse Coordinator pointed us toward earlier, one that I hope anyone reading will watch. It’s a short clip … 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
Evan and I, like all parents, wanted to choose just the right name for Zoe. We spent Thanksgiving with family running down lists of potential names. Annaliese? Natalia? Madeline? Brynn? Evan settled on the name of Zoe before I did. … Continue reading
Since I began keeping this journal, I’ve received a number of messages via email and Facebook from other parents who have a child with HLH. Each time I find myself broken up by the experience of hearing about their child, … Continue reading