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.
Saturday, January 1 – A good start to 2022
So…I pray your 2022 is beginning well.
Ours is!
After a flurry of activity, we brought Heath home around 1pm today.
The week certainly had its ups and downs. WE felt great after the surgery, but Heath still has a lot of work to do post significant abdominal surgery. Everything is put back together, and the port is removed, but we had to manage a tough pain transition as well as, ahem…get those intestines functioning in a somewhat normal manner:) We juggled all of it with the help of wonderful family support. We can’t do any of this without them.
In the hospital, it was once again the gift of wonderful staff continuity that carried us. We made some new friends, but two of our very favorite nurses were working this week. One helped Heath and I navigate the pain and make a plan, and the other took amazing care of us the past two days, helping lock down all of the details that allowed us to leave comfortably. We took some walks and found out the unit has a nice view of Duke Chapel.
Two quick things.
- We are home, and so very excited, but know we have a lot ahead of us. Time and healing and adding weight and gaining strength. Follow up with both surgery and nephrology on Monday. Another appointment Weds. A planning meeting about a transition back to school plan in a few weeks. We already have more followup with cardiology planned, and will be working with oncology to put in place another scan that will hopefully confirm that we’re on solid ground to move forward. It is a lot. We are breathing, and so grateful, but are already making the turn to a new set of plans.
- Our healthcare workers are amazing. We have been touched by the skill and compassion of so many saints at Duke, from surgeons and department heads to an especially awesome woman who came to get our food orders this week. But they are all exhausted. A few hadn’t left the hospital for days. Our nurse in the recovery room on Tuesday told us more than 100 nurses were out because of having covid or being directly exposed, and every time the phone rang it was someone else. These people are sacrificing so much as they continue to care for all, and every unit is short-staffed. The pressure is immense. PLEASE do what you can to make their job easier, not harder.
We’re working on some ideas for some things we can do for these saints and will be back in touch this week. We’ll need your help.
Blessings to you all as 2022 begins. May it be filled with good health, special time with people you love, new things to learn and experience, and perhaps a newfound sense of equity and justice in the land.
Tuesday, December 28 – Successful surgery
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.
Friday, December 24 – Merry Christmas
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.