No news is good news, it’s trite but true for us. I have not written here recently because in the past, I’ve tried to time updates to medical news. Thankfully we haven’t had any developments to share.
For those who have followed our story, Zoe is doing wonderfully. She’s begun her 2nd year of preschool now, has made many friends, been able to participate in play dates, beach trips (in full sun!), and everything else any family might do. She is strong, bright, curious and feisty, and has no limitations that we have discovered that stem from her transplant or the steroids and other medications required to survive HLH.
With regard to HLH Journal, I have not yet decided how to handle the future of this site. I would like to provide more opportunities for those who find their way here to connect with and support one another directly, something I am investigating. I would like to provide more links to information and support resources, something I need to spend time researching so that I can be more comfortable with what I share.
At the same time, I don’t want Zoe to feel forced to contend with pictures or stories of events that she barely recalls as she grows older. My current plan is to leave the information and pictures here intact indefinitely, but to gradually curtail the new pictures I share so that there is at least some public distinction between Zoe’s experience as a very young child, and who she is as a young woman.
HLH Journal continues to rank very highly for certain web searches for a number of reasons, but due in large part to the scarcity of information about the disease when I began writing. As such I will try to guide the site more to a general perspective as we draw away from a life of daily contention with HLH.
I continue to receive notes and comments from people all over the world who have discovered this site and and are beginning their own difficult journey. To those who write and comment, thank you.
I know how terrifying and confusing it can be, and I wish I were able to offer more to you than what I’ve shared here and some kind words or advice. Please know that our heart goes out to you as you take your journey, but that it is not a hopeless one. HLH can be beaten.
This post originally posted at HLHJournal.com.