These words are being written from the new patient tower of Duke Children’s Hospital (which is amazing and huge.) They are also written by a mama with some tears of relief, gratitude, and joy in her eyes.
Heath’s surgery went as well as possible. His ostomy “take down” is complete and they took the port out. He has no NG tube (the nose thing that he hates so much) and it went well enough that the surgeon said he could have “sips and nibbles” tonight. It will still be a tough recovery, but we are in a good place.
A little more info for those wondering: They performed a partial colonoscopy (it has a fancy name that I can’t remember) first this morning to look at the “spot” that had provided a little question and had taken away the chance of yelling “all clear.” If they had found something concerning, they would have stopped the surgery and re-evaluated. The poor GI specialist who had been called in for that part came to give us his good news (that they had found nothing), and he received the emotional response of two parents who had been holding so much angst/fear for so many months. He had just met us this morning and our tears of joy were a little shocking, I think. The only thing of note that they found later—that could have been a source of the “spot” that lit up in the PET scan was a necrotic node meaning “dead cells only!” — there is our medical term for today. A good one in this case.
So, this was all very good news. And we were able to be put in the unit with our Hemonc team and nurses for some wonderful continuity of care. It’s strange the complexity of situations when you are requesting to be in the oncology unit, but again, whoever said anything in life was simple?
In that same vein—It was strange to say to Heath this morning, “if you wake up and feel lots of pain, that’s a good sign…” but that is where we find ourselves this evening. He woke up long enough to give us a half-smile as we had a ceremonial throwing-away of the ostomy “go-bag” that we’ve been dragging around with us for months—the embodiment of how we all feel.
As one of our oncologists just said, “the roller coaster is pulling into the end of this particular ride…” Our tummies still feel a little like they often do at the end of a pretty rough coaster ride, but we’ll take it tonight.
For all your prayers and support and love, we give thanks.
https://durhamtuttles.com/wp-content/uploads/2021/08/tuttle-t-300x300.png00Carrie Tuttlehttps://durhamtuttles.com/wp-content/uploads/2021/08/tuttle-t-300x300.pngCarrie Tuttle2021-12-28 19:40:072021-12-28 19:40:10Tuesday, December 28 – Successful surgery
The Valvano Day Hospital is quiet this Christmas Eve morning. Actually, the halls of Duke are pretty quiet all over, not even much of a line at the Starbucks. That doesn’t change things for those families who are in all the rooms in the tower, of course, or the ED. Or for us getting Heath’s every-other-day magnesium and fluids. But it feels sort of peaceful. As we walked in this morning to the empty Children’s Health Center (CHC) lobby, I am pretty certain I could hear “O Holy Night” playing somewhere in the distance.
I smiled as I heard it because it has been in my head for days. The Spirit moves in extraordinary and strange ways. I guess I should know that by now…
On Tuesday morning, I kept hearing the words and music, over and over, as I sat by myself in the urgent care waiting for my rapid COVID results to come back. It was so vivid that I almost sang out loud (now that would have been one for the books in the FastMed, I suspect.
A thrill of hope, the weary world rejoices. For yonder breaks a new and glorious morn. Fall on your knees. O hear the angels’ voices. O night, O night divine…
I had panicked as I started to hear stories of breakthrough cases. I had a slightly runny nose and I began the awful realization of the domino effect of a positive COVID case in our house–surgery postponed, all the people we had seen that weekend and all the people they had seen since they returned home–no doubt many of you have had those moments of fear and imagining. It was negative, as was the PCR that they gave me “just in case, due to our situation.” I never really thought it was COVID, but I had to check.
With the result, I almost wept in relief, falling down on my knees in a different way than only moments before while I waited. It occurred to me that that is what so many of us are doing in this particular season–wavering between the weary and the glimpses of rejoicing, the dark middle of the night when you almost forget that light of the morning will, indeed, break in, the moments you fall on your knees because you are so weary and afraid that you can’t do anything else, and the moments when you fall on your knees in awe and gratitude. And we know that it is usually all mixed together in this life here on earth.
In the past few weeks, we have lost two of our beloved colleagues and mentors; we have friends who are going through diagnosis and treatment of pretty frightening illnesses; we mourn with those who are experiencing grief for loved ones long lost or just in this past year. And then the uptick in COVID cases causes the stress of “should we or shouldn’t we” all over again. Weary. Yes.
But we are also finding beautiful ways to rejoice–it the normalcy of crazy laughter at a family game of holiday charades, of cousins just watching football together, playing “Cancer Bingo” (we termed it–a wonderful Zoom Bingo with the Cancer Partners of the Carolinas, a wonderful support organization, which was so fun and hilarious to do with cousins), a fun (ok, mom-coerced 😉) family ride through the Nights of Lights at Dix Park, anticipation of seeing more loved ones soon, and witnessing and experiencing beautiful acts of kindness. In a couple of hours, some of us will gather in the Westminster Pres. courtyard for a service outside, lighting candles of hope, peace, love, and joy on this different Christmas Eve. The joy, the rejoicing, is there. It just doesn’t always look the same. The light of the morning does come, just not always exactly when we expect it.
All things point to “go” for surgery early on Tuesday, December 28. Heath continues to gain weight and strength; labs look good. We won’t know much else until they get him in there. Until then, we’ll fall on our knees a little more…
A little while ago, we were talking with one of our oncologists and I said, “I think I have a blog update rolling around in my head” and Heath said, “Seriously, what do you need to update? Nothing has happened!” I love that he feels that way.
So I leave you with our Christmas greetings–a card that was made but we realized we would not have energy to send–wishes for peace and joy and good health with a big dose of HOPE in this season as the weary world rejoices.
TEAM 5! They didn’t win the game but they won our hearts.
This tree is my “Hope tree” filled with HOPE ornaments, made and found, from my wonderful University Presbyterian W2W group, with whom I spent each Thursday for years. What a beautiful gift.
https://durhamtuttles.com/wp-content/uploads/2021/08/tuttle-t-300x300.png00Carrie Tuttlehttps://durhamtuttles.com/wp-content/uploads/2021/08/tuttle-t-300x300.pngCarrie Tuttle2021-12-24 14:39:012021-12-24 14:43:09Friday, December 24 – Merry Christmas
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.
📸 photo credit Heath Tuttle 😊
https://durhamtuttles.com/wp-content/uploads/2021/08/tuttle-t-300x300.png00Carrie Tuttlehttps://durhamtuttles.com/wp-content/uploads/2021/08/tuttle-t-300x300.pngCarrie Tuttle2021-12-14 22:17:142021-12-14 22:17:16Tuesday, December 14 – A meaningful day
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.
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.
https://durhamtuttles.com/wp-content/uploads/2021/08/tuttle-t-300x300.png00Chris Tuttlehttps://durhamtuttles.com/wp-content/uploads/2021/08/tuttle-t-300x300.pngChris Tuttle2021-12-12 09:44:292021-12-12 09:45:24Sunday, December 12 – Normal Human Things
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.
The last chemo infusion on Thanksgiving night!
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.
Getting a tree!
https://durhamtuttles.com/wp-content/uploads/2021/08/tuttle-t-300x300.png00Carrie Tuttlehttps://durhamtuttles.com/wp-content/uploads/2021/08/tuttle-t-300x300.pngCarrie Tuttle2021-12-01 23:22:012021-12-01 23:22:02Wednesday, December 1 – What’s next?
