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.
Tuesday, December 14 – A meaningful day
Today was a weird day. A day with so many feelings.
You see, 13 years ago in the very early hours of December 14, Heath received the gift of life. He had been on ECMO for 10 days waiting for a heart. We were exhausted and scared and shell-shocked and hopeful, all at the same time.
Please stop right now and give thanks for a beautiful little girl named Angelina, and her dear family, who made the decision to share the gift of life as they were in the worst moments of their lives. Her heart, her spirit, has been beating strongly within Heath’s chest all these years.
Heath has traveled the winding road of living with a heart transplant for 13 years. There have been ups and downs, of course, but this lymphoma has been a whole different level of hard and complex. Those don’t quite feel like the right words, but that’s all I’ve got this evening. Suffice to say, nothing with Heath’s precious body has ever been straightforward.
So, you really want to know what happened today, I know. We finally talked with our oncology team late this evening. First, it is almost totally good news. The PET/CT scans showed no evidence of any lymphoma anywhere else in Heath’s body. As we already knew, the mass is gone (I didn’t realize how big it was until I saw the side-by-side scans. wow). All that is good news! It’s amazing how great it feels to read the word “unremarkable” over and over about your child. 😉
We were really hoping for a shout it from the rooftops, “Heath kicked cancer’s ass!” kind of post. We’re pretty darn close to that, but alas, that complexity comes back into play…
There was a small spot in the colon that popped up on the scans and was difficult for all to read. It was in a place where contrast couldn’t go (due to ostomy). When you are looking for an “all clear,” even the smallest of spots makes the medical team pause and necessitates a closer look. The radiologist’s report said that PTLD is unlikely, but there will be a few more tests and at this point, some more scans following the “take down” (ostomy reversal) surgery, which is scheduled on December 28 and seems to be moving forward.
Goodness knows that while we wanted straightforward answers, we also join our hematology team in wanting to fully be able to shout “all clear!”
So, as I said earlier, this has been a weird, complicated, and full-of-feelings sort of day for many reasons. We are full of hope and exhausted and still a little anxious.
As Chris and I walked up to the house after a short dog walk, I looked up at our house, full of light. Everyone has been teasing me about all the lights I have added this year. EB called me the “crazy Christmas light lady” the other day. I just said, “hey, we cope how we cope…” Chris somewhat obsessively rakes leaves, I put up lights.
We move forward with hope, seeing the light that shines in the darkness. Literally and figuratively.
Sunday, December 12 – Normal Human Things
It has been a pretty good week.
Heath never spiked a fever, so we avoided the neutropenic fever bonus hospital trip.
Carrie and I went together to the Lovefeast at WPC, which was great. It was the first time she had been in the sanctuary since probably February 2020. We got to be with special people enjoying an important Advent ritual.
Both Carrie and I did a few more work things than we normally do – mostly because we had the time.
Wednesday was an early release day and I took Wilson to the dentist.
We walked the dog and raked some leaves. Wilson had basketball practice and a friend over to play Saturday. EB had a friend visit Saturday from out of town. We hung more lights. We sat by the fireplace on some of the chilly evenings.
Wednesday Heath had a clinic appointment, the every-other-day thing for magnesium and labs that we always do, and on the way, we ended up realizing there was an event at his school that night. Each class had made some crafts you could purchase for holiday gifts, and the orchestra and chorus would play. There was a pause. “Do you want to try and go?” Another pause. “I think I’d like to.” So I called Carrie and then asked the team once we got to Duke. They graciously sped things up and moved some things around to get him out on time, and by 5 we were on our way to Lakewood Montessori Middle School to see what we could see. We walked around, chatted with some friends, and made a few purchases. We stood against the wall in the gym for a few minutes and listened to a few pieces. Then we came home. No fanfare. No crises. Just a simple, normal, human thing. It was awesome: that he wanted to go, that he felt strong enough to do it, and that the world still goes on in these ways. Between the pandemic and Heath’s cancer we simply haven’t seen much of that world. He walked more that day than he had in a long time, and I dare say he had a bit of a spring in his step.
But over it all hangs a cloud.
The Lovefeast was great, but not long after we got home Heath got sick. Some dinner and some meds, we had an anxious night. We had an early morning ostomy adventure. He got sick again Monday morning, which ended up meaning we had multiple hours at the clinic on Monday, and Tuesday, and Wednesday, and Friday.
Carrie is with Heath this morning at Duke as I’m at worship. While he felt good some days, we’re also constantly examining lab reports and talking with the team. “Which team?” you might ask. And it would be a good question. Is it oncology, or cardiology, or surgery, or occasionally nephrology? Keeping the trains running on time and keeping everyone communicating with each other is quite the challenge, even with the world-class medical care we are receiving. We can only imagine how hard this is for people who don’t have all the advantages we do.
So while the normal human things have been such a gift, we’re getting pretty anxious. Monday we’ll meet with surgery about the ostomy reversal. And Tuesday we’ll have a PET scan that will tell us if we got all of the cancer, or if we….I have a hard time imagining the alternative. We are hopeful, and really do feel good about where we are. But we are also really scared. When Heath was initially diagnosed we didn’t really know what we had in store, which I think helped us. If we have to do another round – and we know this is something some of you who are reading this have had to do or had to walk loved ones through – it is tough to even think about. Because this time we’d know full well what it would entail. We honor the strength of those of you who have done this again, and again, and again.
So as you jump back into the world this week, with all of the normal, simple, human things I hope you’ll get to do, say a prayer for the saints in Kentucky and all of those places battered by storms this weekend. And also say a prayer for all of us who are waiting. Trying desperately to look like we’re doing normal human things, but with a knot in our gut, knowing test results will come soon.
The second piece the chorus sang on Wednesday night at Lakewood was Robert Frost’s “Stopping By the Woods on a Snowy Evening.” I choked up as Heath leaned against me on the cinderblock gym wall as I remembered the final stanza: “But I have promises to keep. And miles to go before I sleep. And miles to go before I sleep.”
We remain so, so grateful for you all. We’ll be in touch when we know something.
Stopping by Woods on a Snowy Evening
BY ROBERT FROST
Whose woods these are I think I know.
His house is in the village though;
He will not see me stopping here
To watch his woods fill up with snow.
My little horse must think it queer
To stop without a farmhouse near
Between the woods and frozen lake
The darkest evening of the year.
He gives his harness bells a shake
To ask if there is some mistake.
The only other sound’s the sweep
Of easy wind and downy flake.
The woods are lovely, dark and deep,
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep.
Wednesday, December 1 – What’s next?
With many questions from folks, we realized that it might be helpful to give you all another update and to lay out the plan (HOPEFULLY) for the next month or so.
Heath had his final lumbar puncture on Tuesday afternoon. It was an incredibly long day, but it went pretty well and he didn’t get sick this time! Hopefully, that was the last of any chemo/treatment going into his sweet body. So far no neutropenic fevers that send us back to the Duke ED, but there are a few more days that that could happen. We’re hopeful that we might skip that part this cycle.
With the ostomy, his body is having a tough time keeping magnesium up to safe numbers, so he will have to go into the Valvano Day Hospital every other day for magnesium infusions until he has his reversal surgery later in the month. These labs/infusions usually take a couple of hours, but we decided we would rather go into the VDH instead of keeping his port accessed and doing the infusions at home. This is not fun, but we know it is the best way, so it is just what it has to be…(I feel like we have had to say this A LOT in the last few months).
The PET/CT scans are set for Tuesday, December 14. Hopefully, we’ll get results within 24 hours.
If all looks good (no signs of lymphoma) on the scans, he’ll be cleared for surgery to reverse his ostomy–to put his intestines back together–on Tuesday, December 28. We don’t know a ton of details about recovery, but we’re guessing he’ll be in-patient at least through the first few days of 2022.
Hope. How many times did I just type “hope,” “hopeful,” or “hopefully?” How many times have we prayed to find glimmers of hope? So many.
My Nana loved poetry. She used to do poetry readings for her book club and then even in the retirement community where she lived, right up to a couple of weeks before she died early in 2021 (She died of COVID complications–seriously y’all, please get your vaccines and wear your masks). One of her favorite poets, and mine, is Emily Dickinson. As we have made our way through these difficult months, grasping for hope, I have heard the words of a particular poem in my head, in my soul. Last week, I was walking near the elevators on the 5th floor of Duke, taking a deep breath as I dared to HOPE that Heath’s treatment was coming to an end. And I looked up and saw the words of the poem. Those words had been there THE WHOLE TIME, but my mind was always so busy as I rushed through that space that I hadn’t really read the words.
Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all,
And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.
I’ve heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.
–Emily Dickinson
I dare say the hope has been there–found deep in our souls, found in beautiful acts of kindness, of great medical care, in the ways Heath has endured and overcome so many hard things. We’ll continue to hope and take deep breaths as we do a little decorating and maybe even a tiny bit of planning for re-joining the world. This journey is still not close to being over, but we’re getting there.
