Heath loves team sports: baseball, basketball, football, you name it. The Tuttle family cherishes the support of a large team of family and friends in the good, fun times and in the hard times.
This site is to keep the beloved members of this team informed about the latest with our favorite all-star.
So last night, not long after Heath had begun his first infusion of chemo to fight this darn lymphoma, Chris wrote a really lovely post about starting the treatment. He talked about how it truly felt like a roller coaster. I read it as Heath was getting a little sicker and said, “Um, can we just not post that right now?”
At the hospital, the roller coaster had taken a sharper turn than expected. The last few days our really amazing Hematology/Oncology team (from now on referred to as “Hemoc”) had done a great amount of research and information-gathering from experts around the country to come up with the best plan for Heath’s particular PTLD case (he is EBV-negative, which is a little less common)*.
We haven’t shared much about this, but it might be helpful to know that Heath’s PTLD presented in a “mass” near his intestines, which caused much of the GI stuff that brought us to both Mission Hospital in Asheville in late July and then to Duke a week and a half ago. Different treatments could affect his GI tract in different ways. There was a heavy-duty and less harsh approach. All agreed to go with the less harsh version for the first cycle (3 weeks with one long IV infusion each week). This version that we decided to try first is a drug called Rituxamab. It is not one that causes tons of nausea.
Unfortunately, part of the worry of Heath’s case (the location of the GI mass) came true a little more vividly than expected. Let’s just say it was a long night with X-rays and scans and sickness, a surgical consult (was it a blockage? did he need an NG tube?) He finally fell asleep early morning on some awesome anti-nausea meds and he managed to sleep through a CT scan, a bed change (broken wheels do not maneuver well), and through most of the morning. All were pretty concerned and somewhat surprised by the onset of such symptoms. But somehow he slept and slept and woke up in a much better place medically and emotionally than anticipated.
So right now they are watching his labs and hoping that his precious body is figuring out how to right itself after these treatments–and how they might need to help it along. We’re still hoping to get it figured out so he can do most of his treatment outpatient.
When Chris and I switched this afternoon, Heath was playing MLB the Show on the Xbox and asking for more Gatorade. We knew it was a good sign this morning when he was not really awake and the nurse made a joke about the trouble he had caused all night and without opening his eyes, he waved his hand and said, “my bad” and went back to sleep.
The roller coaster will continue. This we know. But we also know that in the midst of the twists and curves and drops and slow rises, there will be glimpses of beauty and hope and grace.
Last night/this morning I glimpsed all these in the care of nurses, two who spent a pretty tough night with us, who wouldn’t leave Heath’s side, who advocated and listened and loved. One of whom, as we were wheeling his bed through the halls of Duke after sunrise, looked up through a window and said, “Well, look at that sky. It’s going to be a pretty day.” I looked up as well, in a split second smiled at the reminder of the beauty of the world, and then kept on walking.
For glimpses of beauty, hope, and grace, whatever or wherever they may be, we are grateful. Especially on this roller coaster.
We realize that this is going to be a long haul and that you are eager to create moments of beauty, hope, and grace. We’ve added a number of slots on a signup genius for meals. If this is a way you’d like to help, we’d be grateful.
*I am NOT a medical professional and I know that many of you are. I do my best to explain. I can talk or preach all day about all the feelings that surround it, but please excuse my basic explanations. 😊 Medical word today: EMESIS=vomit (i.e. Emesis is our nemesis!)
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)
We know that you all are wondering what you can do to help. Visit this page to see what might help us at this time.