Tuesday, August 17 — Diagnosis

Dear friends and family and wonderful community–

Many of you have been aware that Heath has been hospitalized the past few weeks.  After a battery of tests, yesterday pathology reports returned with a diagnosis of PTLD (Post-Transplant Lymphomoproliferative Disease), which is a form of lymphoma that often occurs in people who have suppressed immune systems.  When you have an organ transplant like Heath did when he received the gift of a heart transplant almost 13 years ago, you take immuno-suppression medications to keep your body from rejecting that heart.  But when your immune system doesn’t function properly, occasionally other things can grow.

We are stunned, exhausted, overwhelmed, terrified, and hopeful, often at the same time.  We are in the process of making his treatment plan, which will likely involve between 18 and 20 weeks of chemotherapy.  While he is hospitalized now, we are deeply hopeful that most of it will be outpatient.

We have the utmost confidence in our world-class team at Duke.  Heath has been a resident of the hematology/oncology unit for the last week, and we have already built strong relationships with the medical team–goodness knows it takes a special human to spend their life’s work on pediatric oncology.  Our amazing cardiology team is following Heath closely.  His heart is strong. We have been told by many sources that this is “very treatable, although it might be a tough road for some time.” Heath is strong and self-aware and is gearing up for this fight.  The thought that he would have to go through more than he’s already gone through in his young life is almost too much to bear, but he in fact does bear it with grace and humor. And we will bear it with him.  He really is grateful for regular communication with folks via texts and laughs at silly TikToks. We’ve been watching lots of baseball and HGTV,  prepping for fantasy football, and figuring out how to set up his xbox in his room…all the things.

Chris and I are working with both of our wonderful congregations to take some time away to focus on Heath’s treatment and our family.  Ella Brooks and Wilson also need to live their lives and function in the world, even in the midst of these hard things.  Please know that when you see us out in the world with them, we might not go into much detail about how Heath is doing, as we are trying to figure out how to keep things “normal” for them as well.

We will keep you updated here on this website as we move along.  (Thank you to our dear friend, Shelley Bainter, for being willing to help us navigate sharing information!)

Please know that we may not be able to respond to all your beautiful acts, texts, emails, calls of care and love, but we FEEL your love and your prayers.

Carrie and Chris

 (this amended from letters that have/will been sent to both our congregations)