After the better part of a year spent coming to terms with, managing and then curing our infant daughter’s deadly disease, we’re finally starting to move forward again. It’s been a crazy year, one that we’ll be grateful to put behind us. Soon this will all be a dream in our collective memory and Zoe will be a completely normal kid again, just one who happened to have the toughest fight of her life right at the start.
I began the HLH blog with the specific intention of putting a story out there that I wasn’t finding when Zoe was first diagnosed, which is to say, a success story. I didn’t know how things would go, but I decided that it was worth putting our story out there so that people who find themselves in a similar position with this disease, HLH, have an easy to find roadmap for how one might make it through.
Now that we’ve reached Day +100, which is a huge mark of success for an HLH/post-transplant child, we’re ready to turn out attention back to our lives. To that end, I’ll be updating this site a little more often, and leaving the HLH story untouched beyond occasional updates.