Heath's Updates

Friday, November 12 – It’s not the only thing

November 12, 2021/30 Comments/in ht /by Chris Tuttle

Today started with a bang, or a thud, or, more accurately, a splat. 🙃

Heath called Carrie’s phone a few minutes before 6am today (Friday). His ostomy bag had filled and exploded all over him and the bed. What a mess. We jumped into gear trying to move him and clean him and the bed and change the ostomy bag and dressing. It was chaos, but we are getting adept at handling these kinds of challenges. In the midst of moving him we noticed his skin was pretty warm. We had a few nice days at home, but Heath had been especially tired. We were worried the neutropenic fevers would return and we’d have another bonus trip back to Duke, but were really hoping to avoid it. But this morning meant we couldn’t avoid it any longer. We took his temperature, shook our heads, and Carrie picked up the phone. Before 7am Heath and I were in the car to see our friends in the ED.

A slightly complicating factor that we had to work through was the fact that Carrie had been planning to take Ella Brooks and Wilson on a quick overnight trip to see friends in Charlotte. A change of pace and a little fresh air on a long weekend would be good for everyone’s soul. Heath and I would have a quiet 24 hours and welcome them back on Saturday. Should they still go? What is the right choice?

While the immediate medical crisis of this cancer is the main thing on our minds, we’ve probably spent almost as much energy worrying about this season’s impact on our other children. They love their brother and want him to be well, but it’s hard to know what to do and how to act sometimes. Evenings when they pile in his bed to watch a game – even if just for a few minutes – bring Carrie and I so much joy. While we can’t know what memories they will have of this time later on (and obviously very different for his 16 year old sister than his 8 year old brother), we don’t want them to feel like this was all lost time. We know that they know that their parents are really tired and having a hard time juggling it all. We’ve felt especially jumbled and forgotten a lot of silly things this week. They’ll surely know how worried everyone was. But I also hope they’ll know that we worked so hard to keep their lives going – none of this is their fault, after all. We want to be present at their activities and support them with their friends. Our own guilt at all we can’t do is also very much in play, we’ll readily admit. We go back and forth and worry about that stuff a lot. I suspect any of your who have been caregivers are familiar with negotiating these tradeoffs. You do what you can, and try, desperately to make peace with what you can’t.

Underneath all of that is another important idea – while this cancer is horrible and the most important thing we are dealing with right now, it is not the ONLY thing. The world goes on, and we want to participate in it as much as we can. Grief in all of its forms has the ability to consume you, to shrink the world down so small. And sometimes that’s okay, even necessary. But we also know we can’t stay in that space too long. We have children to raise and a crazy dog to walk and jobs we love and a world full of people, most of whom all have some joyful and pretty hard stuff going on in their lives, too. We’re all in this together after all, aren’t we?

By the time you read this Heath and I will be settled in with our friends on 5200 for a few days. Carrie and the other kids should be in Charlotte, and grandparents and neighbors and chipping in with the puppy. My goodness, we can’t do any of this without the village. My prayer is that they’ll not have too much traffic on that stretch of I-85, and will have a wonderful time with dear friends. If we’ve been reminded of anything in this, its that the people in your life matter so much, and those relationships are worth every bit of energy you have for them. People who you can offer love to, and can share the same with you. On the good days and on the days when it feels like we’re stuck in quicksand. So maybe that’s the point I’m rambling towards here as Heath naps beside me: take some time for someone today. It matters. They matter. And so do you.

And in the midst of that, take a moment to look up around you and receive some of that care from creation. Our across the street neighbor has a tree that turns the most perfect gold this time of year. When the sun hits it it glows. We’ve got a newer maple trying to show off some red, too.

Saturday, November 6 – A Win We’ll Remember

November 6, 2021/32 Comments/in ht /by Chris Tuttle

So, Saturday morning this happened:

Those of you who know Wilson know it’s a big day when you’re walking in somewhere and he says, “Dad, I’m really excited about this.” Shoutout to the saints at Chapel Hill Peds, the Durham office, for a smooth process. It is a gift to get the final human member of our household his first COVID-19 vaccine. I suspect I’m preaching to the choir here, but please, please, please get vaccinated. For yourself and for your neighbors and for people you don’t know but who are beloved children of God just like you are. Please.

It has been a pretty good week.

I grew up an Atlanta Braves fan (I’m fully aware of the conversation around the name and the chop, and I think its probaby time the name be changed and the chop discontinued). I remember going to a game with the youth from First Presbyterian in Savannah, where my parents served from 1979-1987, in the old Fulton County Stadium. I’m by no means a die hard fan, and confess to paying attention a little less in the lean years. Constant coverage on TBS growing up meant I had seen some of those years, though, as well as the amazing run in the 1990s, culminating in a World Series Championship the year I graduated from high school and started college. One of the many things I loved about the woman I met at Columbia Seminary as we began dating was that she was always game to come by my apartment in Decatur and we’d buzz down I-20, pull into parking at the back of one of the cheap lots at Turner Stadium. Carrie and I would get a $5 ticket and a $7 beer and sit for three hours up high over right field. Once we moved to Greensboro we’d spend many an evening watching Braves games, though for some reason the cable coverage shifted once we moved to Durham. Memories of those games carried me through our early family life together, which made it all the more special to have watched the playoffs – sometimes in the hospital and sometimes at home, with my boys. Sometimes in the recliner in Heath’s room, sometimes at Duke. Reliable sports on tv on long evenings, made more special watching a team you actually root for.

Heath was admitted back with our friends on 5200 on Tuesday morning. Carrie was with him through a day of prep and organizing, moving up to the floor, getting the play set. We switched off around dinnertime, right as the pre-meds began for the first infusion. One of the pre-meds is Benadryl, which means a serious NAP. I was sure to check and see when in the game he wanted me to wake him up if he was still asleep. The end of the second inning was the answer. I ate dinner, got some work done, and turned on the game. He was sleeping so soundly, and had been so tired, that I let him sleep a little longer, but I woke him up yelling when Jorge Soler hit that MASSIVE home run. We sat there together through the rest of the game, with the wonderful nurses coming in every 30 minutes to check vitals and increase the rate. The infusion ended around 11, then another short chemo infusion, then some IV magnesium, meant that we had plenty of energy and were still awake when Dansby Swanson fielded the ground ball, glanced at second, and threw to first for the final out, our arms shooting straight in the air just like Freddie Freeman. It was such a special moment to share, and to share together. I know, sports aren’t real life. But my goodness they sure give us a place to put our hopes and our dreams. I wiped a tear and I gave him a high five and then leaned over to kiss his bald head.

Wednesday, Thursday, and Friday brought its own series of infusions and pills, emptying the ostomy bag and consulting with the team. The chemo process went pretty smoothly. Much of the week was spent trying to figure out how to regulate his magnesium level. We realized recently his pills hadn’t been fully digesting, which meant trying each day a different combo of IV and liquid to see what worked and wondering if we actually needed to come home with his port accessed and give him infusions at home. But he ate and drank and gained some weight, took walks and did some school work and played Xbox. It was a lot, but especially in comparison to previous weeks, we’ll take it.

I spent the first two nights at Duke, and Carrie spent the last two – and did most of the days as well. I got some work done and had some great help from my mother who was here to help us Thursday, Friday, and Saturday. She was here just long enough to be able to see us bring Heath home today (Saturday). After that, I was able to rake some leaves and EB went to an amazing UNC game with Carrie’s dear friend from high school, Wendy, who was in town to watch one of her former students who plays for UNC. What a game! Carrie was able to catch up with Wendy a little afterwards, too. Wilson was Wilson, and Rosie got a playdate with neighbor dogs and is now passed out in the hall. I cracked a beer and am sitting by the fire typing this and watching a little football. Mostly, though, I’m filled with gratitude for a night with all of us under the same roof, as well as for all of you who have supported us and cared for us and fed us and prayed for us thus far. We’ll go back to the clinic tomorrow to check that same dreaded mag level, hopefully be at home Monday, then back again for a few hours for a procedure and another infusion Tuesday. There is always more to do. But, thanks be to God we don’t have to do this all by ourselves. And, for the gift of being able to enjoy your team actually win sometimes.

Sunday, October 31 – Balancing Tricks and Treats

October 31, 2021/15 Comments/in ht /by Carrie Tuttle

It occurred to me earlier today, after multiple people asked if we were home, that I had not updated last night. Heath got home from the hospital around 5pm Saturday–we had to make a deal that we’d come back first thing this morning for labs, but we were home! A little Chinese take-out, a fire, college football and the Braves pulling out game 4! Yes, please. You had one happy boy! At one point all members of the family who were in the house were piled in our bed watching the game, so you had one happy mama and one cranky dad. He was just pretending, I think. At least until EB took his spot, with Rosie on top of her. At least Chris had some good scotch.

Wilson is living his best life as his own version of the Chick-Fil-A cow on a fun trip to Virginia to see the cousins. Apparently he rode through the drive-thru fully-costumed yesterday and got some free fries from some really humored CFA employees. We are grateful for Ama and Grandpa taking our fella on a little excursion, and for all our Virginia crew for giving him a little extra love on this different sort of Halloween.

EB drove herself to hang with some friends tonight, and to the store to pick up extra stuff for her costume. So there’s that.

Multiple times today we’ve looked at each other and reflected with neighbors who have their own reasons for a “lower key” Halloween, and said, “this is just a year to do what we need to do and make the best of it.” And we have–Chris, Heath, Rosie and I took a drive to Bruster’s to do our own Italian ice/ice cream trick-or-treating. It was delicious. Rosie wouldn’t wear her costume, but that was ok too. It was the first time in 16 years that we weren’t wrangling at least one child or adult into a costume. And that was ok.

We got a little yard work done. Most of you know that I am a gardener and avid home-improver. It was incredibly satisfying to get just one small portion of my outdoor to-do list checked off, and I even found one last daisy that was still vase-ready.

We slept in our own beds and will for the next couple days, and for that we are grateful. Heath’s numbers were ok today and we’ll have a nephrology appointment in clinic tomorrow with another lab check and as long as things continue ok, we’ll be heading in on Tuesday morning at 10 a.m. to start the next cycle. In the past couple days at Duke, his ANC (Absolute Neutrophil Count–measure of number of neutrophils–type of white blood cell–in the blood) went up really quickly to “normal” after his 0 only a few days before, which was good. Perhaps the fever was the point of the upward turn. No one is completely sure, but there was no other source of fever that was found, which was also good. We learned that some of Heath’s meds may not be absorbing well due to the ostomy, so that was a new wrinkle on which the team will continue to work. Adding heart transplant and ostomy and all the things that go with them makes everything in cancer treatment just a little more complex. That’s how we roll.

We’ll update later in the week as we settle into chemo week. If we stay on track, this is the next to last cycle, so we’re trying to find some energy and hope in the moving forward.