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.
Monday, October 11 – Ending a week at home
It was early last Wednesday morning, around 7am. Wilson and I were coming around the corner approaching his elementary school. Wilson exclaimed, “Look how beautiful the sky is!” It was a majestic mixture of orange and pink. And all I could think was, “This beautiful morning is the day I’m going to cut my son’s hair.”
It has been a week of ups and downs.
It has been a gift to be at home, all of us under one roof. Part of it is simply the logistics – less coming and coming, all of us based in one place. No tag-team handoffs at the hospital and endless text chains about who is covering which place and who is helping with carpool and making sure to ask the team this question at rounds and how long the line is at Starbucks at the hospital. Our bed is SO much more comfortable than the “couch” we sleep on in the hospital, and no one wakes anyone else up to check vitals. We’ve loved being able to check in with Heath and then head back downstairs, or go to a meeting, or walk the dog. We’ve had some really nice evenings watching playoff baseball. Carrie and I walk the dog together, which our neighbors know is a good sign. This time has been really special. It truly has, and that’s a gift we are working hard not to take for granted.
But it is also a different kind of exhausting. The gift of the hospital is that all of the helpful people are nearby. If we have a question, we buzz the nurse. Or ask them to page the team. Our medical pros have been really accessible and supportive and answered endless sets of questions. They are also checking in with Heath very regularly, often hourly, so nothing is left to chance. Here at home we are left to wonder…”Is this normal? Do you think he’s okay? He sure is tired….” This final point has been so hard. Heath continues to be very thin and weak in ways that are pretty heartbreaking. He reaches out a hand to help him up out of the bed. Then you make sure he’s steady. A walk downstairs and back up (which doesn’t happen but a handful of times a day), is so tiring. Those of you who have experienced this disease in your own body, or cared for a loved one through treatment, know what I mean. His hair continues to fall out.
That’s what we did on Wednesday – that I mentioned above. He had grown quite a head of hair over the past eighteen months, the full teenage boy mop. We knew there was a chance his hair could begin to fall out, but he didn’t want to cut it. But the clumps of hair falling out made the decision for us. On Wednesday afternoon we set up towels and sheets all over the bathroom, and I plugged in the clippers. Much of that hair ended up on the floor. Those moments were really hard. Or, if I’m being honest, the buildup to those moments were some of the most difficult (ask Carrie how cranky I was that day) – for what they were, and what they symbolized. Like everything else, Heath took it in stride as I cut the back and sides pretty short, and trimmed up the top. He wasn’t ready to go full ‘buzz cut’ yet. That will come in time. But we did it, and it didn’t look that bad, and Wilson saved the day when he walked in and immediately said, “Heath, that haircut looks FRESH!” (He meant fresh in a good way.) “God bless dear Wilson,” Carrie and I said to each other.
So tomorrow morning (Tuesday), we head back in to be admitted for at least a week. We’ll begin another week-long round of chemo, followed by another round of really low white blood count, which may be at home or may still be at Duke. We pray nowhere in this time period will there be an emergency abdominal surgery. We go in weary. We go in anxious for the continued toll this will take on his frail body. Yet we also go in hopeful, knowing that initial rounds have been effective, and that the tumor is gone. We have at least nine more weeks ahead of this. And so we pray for strength.
On that note, and understanding we’ve got a long way to go, we’ve added some spots to the signup genius for meals. To the many of you who have fed us until now, we thank you. It had been a gift to get to see many of you briefly, and enjoy the sustenance you provide. If this is a way you could help, we’d be grateful. The love we have experienced from countless saints, through meals and cards and texts and so much more, is a gift beyond anything we can ever truly articulate or understand. Thank you, thank you, thank you.
Monday, October 4 – Fresh air
We are HOME!
Until 4pm we were still up in the air—waiting on some labs and an iv, for the teams to confer about med changes—and then Suzi (our primary nurse) came in and said, “the orders are going in and meds are down at the pharmacy. Let’s get this boy home!” His white cells and ANC started going up this weekend, a little sooner than expected with all the stress of surgery, so the team decided that it would be great to get Heath home for more rest and recovery. We have to come in for labs Tuesday and Thursday, but that is an ok price to pay.
It’s amazing how much stuff you accumulate with a 2-week hospital stay. As we waited for Chris and Wilson to come around with the car, we realized Heath hadn’t been outside since Sept. 20.
We were welcomed home by Ama standing in the yard with the Wassers—Heath’s amazing 3rd grade teacher and her husband and baby, who had just brought dinner (❤️ ).
He is super weak and has lost a ton of weight in the last few months—and being bedridden post-surgery robs you of muscle mass—but he made it into his “Heath cave” recliner with a huge smile. His little brother stayed with him pretty much all evening—so glad he was home and talking football. EB helped keep Rosie away because she was SO EXCITED to see her boy that she tried to join him in the recliner…
We are so glad to be home, but if I am being totally honest, we are exhausted and pretty darn overwhelmed with med changes and new medical responsibilities with ostomy and health monitoring. I find myself thinking constantly about all the folks in our lives who have been caregivers for loved ones.
We’ll check back in at chez Duke next Tuesday to start the next cycle of chemo. This is hard, but we have to make sure that obliteration takes place—so we’ll keep on going.
Wednesday, September 29 – We can do hard things
Over the years, as folks have learned about Heath’s heart transplant story, we have often seen them shake their head, maybe even tear up a little bit and say something like, “I don’t know how you’ve done this, how he has done this.” Or “How are you still standing?” Or “You are so strong. I don’t think I could do it as a parent.” I often respond with, “well–you just DO it. You figure it out.”
The truth is this–some days none of us know how to do anything except put one foot in front of the other. Sometimes we can see the plan laid out in front of us and goodness it looks awesome. Sometimes we’re not sure if we will make it to the next moment. But we keep going–whether with a yell or a whimper, kicking and screaming or skipping and laughing–we keep on.
Recovery from anything is not usually a quick and easy process. Heath is doing remarkably well (providers are amazed with the ways he is participating in his care, listening, learning, recovering), but even the most remarkable recovery takes time. Throw in super-low white blood cell counts (from chemo) and major emergent GI surgery with an ostomy, oh, and keeping your transplanted heart in good shape with the correct levels of immune-suppressants, and we’re learning to just take each day as it comes.
On my “medical words I wish I didn’t have to know” list this week, we add the word, NEUTROPENIC, which means that you have an abnormally low count of a specific kind of white blood cell–neutrophils–that can leave way for high fevers and infections. This is where you expect to be with chemo, but a word you don’t really want to live or learn. It is also what will keep us here at Duke–IV antibiotics are a good thing for neutropenic people, especially those who have just had surgery.
We’ve struggled to figure out how to update everyone because it seems that we think we have one part of the answer and it changes the next day. In these days we are working on rest, recovery, weight gain, PT, and even a little schoolwork.
We’re learning to find some happiness in eating french toast and pizza (!!), throwback Gatorade cans that showed up in the PICU and on our unit (see pic), PT students who add college teams to Heath’s plan and remember what he likes, nurses who want to have him each day and wear silly hats and bring football pillowcases and talk about regular life stuff, and house-keeping staff who strike up hilarious conversations with patients while taking out the trash. All those things.
At some point in the next week or so, we’ll hopefully head home for a little mental/physical breather before we start the next round of chemo. The planner in me desperately wants to tell you exactly WHEN. But the part of me that needs to remember that we are in a “one foot in front of the other” season knows that I should not speculate on such things too much.
When I was talking with Ron (Shive, my dear friend and colleague at FPC) yesterday, he was telling me that he had been asked in a retreat ice-breaker this question: What would the title of your autobiography be? I don’t know, but it certainly is a question worth pondering. What would yours be?
For me, maybe for Heath’s biography (he has teasingly told me that he releases the rights for us to write a book about this experience), right now it must be this–“We Can Do Hard Things.”
We can, friends, we can do hard things. It doesn’t mean that we’ll do it with a ridiculous smile or goodness knows, not in a “God doesn’t give us anything we can’t handle” kind of way (by the way, that is not my brand of theology), but in a step by step, find grace and good and humor and tears and anger all mixed up together, kind of way.
This is the sermon/pep talk I give myself late at night when the monitors beep in the hospital or I am trying to figure out how to help bring some “normalcy” to our other precious kiddos or train our very bad puppy so she doesn’t eat the antique couch…we can do hard things.
