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.
Thursday, March 17 — Thoughts from re-entry
It’s been a minute.
First, the update: Heath continues to heal and recover really well. We have had A LOT of follow-up appointments with cardiology, oncology, and orthopaedics and, while anxious, feel really good about the way things are trending. He has been a steady presence at school, at church (greeting people at the welcome table with his friend Harris this past Sunday at church (photo credit to the wonderful Kim Garcia)), and is out in the world more and more. A few Saturdays ago Heath, EB, and I took a quick trip to Greensboro to watch the semifinals of the ACC Women’s Tournament. It is an absolute joy to be able to do more and more, as he gains strength. He continues to heal well and we are shifting towards gaining strength along with that weight. His hair is growing, too, which makes him really happy. Carrie and I are surprised each day with how strong he is and how he continues to flourish.
Which leads us to two more things.
THANK YOU. We continue to be so grateful for your support and love and prayers. But our ‘thank you’ takes a more tangible form this time. You all donated a lot of wonderful supplies for bags for medical staff, and we’ve delivered multiple big bags of them each time we’ve gone to Duke – to saints on the in-patient side, in the clinic, the day hospital, all over. We took bags to the wonderfully kind people who check us in and make sure we know where we are supposed to go for our next appointment. The front desk staff actually made us a thank you card (SEE PIC), because it meant so much. They often feel forgotten, too. We’ve purchased extra supplies for the PICU, needed by staff for families who find themselves in the worst moments of their lives without the time to gather all the things they need (staff members often purchase this with their own money, much like teachers do for their classes): adult undergarments of all sizes, chargers of all sorts, small hairbrushes, adult coloring items & word searches, tissue packages, and q-tips. Your kind donations have made so many staff members’ days. The social worker and a PICU nurse who helped unload the entire back of Carrie’s car the other day sent messages almost immediately upon arrival in the PICU that staff were overwhelmed by their thank you bags and all the helping items. We still have some of your monetary donations left, and will wait a bit to feed staff and see if there is something special we can do in the next few months. Your gifts keep giving.
With help from the church, Westminster hosted a blood drive on 3/15, and we filled all the slots and had a great afternoon hanging out and thanking folks who gave.
This is all so important, and we are grateful.
The other thing we’d like to say is that re-entry is hard. We are so grateful for where we are, but we’re still struggling a little bit to find our ‘sea legs’ as we transition into our post-cancer reality. When you have been through something really intense that requires so much of you, even though you yearn for ‘normal’ life, it is hard to manage. We’re pretty tired. The details get overwhelming. Carrie and I are both ramping up at work, which is so good – it is a gift to have jobs you love working with really great people – but it is a lot. We’re back to our weekly calendar dates to plan out meals and meetings and pickup and baseball practice. I’ve found myself struggling to maintain casual conversation sometimes…(insert crack about how I wasn’t very good at it to begin with). We have lived through this amazingly difficult experience, and we are so glad to be, for the moment, on the other side. But we aren’t the same people we were before. We won’t really have much of a sense of how this has affected us and what it means for us in quite some time. We are wrestling with when to reflect, when to try and move on, when to remember, and when to work really hard to forget. There are days that we feel like we are doing an okay job. And there are days we don’t feel like we are handling all of this well at all. Don’t get us wrong, we are profoundly grateful. But we’ll never be the same. Like Jacob after wrestling with God by the banks of the Jabbok (Genesis 32), we walk with a limp that may never fully heal.
Our struggles have also made me realize that more of us are limping than we know. There are people all around us who have gone through something extraordinarily difficult, and that can mean many, many different kinds of things. I suspect all of you reading this has. We all limp, whether we notice it in each other or not. I wonder what it would be like if we took just a little more time to tend to the wounds of those around us, maybe especially people who look like they are doing “just fine”? There is a tendency to want to put things behind us and move on. The world really wants us to move on. It is easier that way and allows us to avoid talking about anything hard. What would a community of people who spent just a little more time tending to each other look like? My prayer for the days to come is that as we limp, we’ll limp a little more slowly, so others can come alongside.
We are so, so grateful for all of you.
Wednesday, February 16 — We can say it
I think I mostly love the fact that we have been so busy getting back into “normal” life that I have had a hard time getting to the writing of a “quick” update.
Heath had his final/follow-up CT scan, labs, and Hem/onc visit yesterday at Duke. We had to wait 21 days after COVID to go back to the clinic, so he had gone back to school and we had gone back to work more, and frankly, it snuck right up on us. It was a bit of a shock to our systems as Heath and I made our way into the Children’s Health Center (CHC).
GOOD NEWS–his labs look really good and his body is “normalizing.” Most of his blood counts were in the “normal” range–even hemoglobin and neutrophils almost where they would like them to stay.
He has gained 20 lbs. from his lowest weight during treatment. His hair is growing back. The oncologists were really thrilled with how he looks and feels.
The CT scan results were “very, very, very reassuring.” Well, that was the non-medical language used to help my non-medical brain. That stinky necrotic (remember that means dead cells) node was still hanging around and gave slight pause (ok, mostly to ME, the trying-not-to-be-anxious-mom who got the results on mychart prior to the doctors being able to call to talk through it) and the surgeon, radiologist and oncology team conferred and all agreed that it was NOT an issue. And, Heath was given the go-ahead to post or shout or whatever the heck he wants to do–
“I kicked cancer’s ass!!!”
Of course, he probably won’t, since he is much better behaved than either of his parents, so I will tell you now–there is no cancer in that precious body! Boom!
We will now move into the post-treatment follow-ups–once a month labs and clinic with oncology, CT scan every 3 months, cardiology every six weeks but hopefully moving to quarterly checks fairly soon after changing around his immuno-suppressants (oh, yeah, there is still that transplanted heart to watch…)
Heath is adding more hours to his school day in increments and has enjoyed seeing a few friends and getting back to youth group (darn old COVID still making it harder, but we’ll take it.)
We’re not going hog-wild, but we are doing things like looking to the future a bit, even planning a little spring break adventure and making summer plans. Step by blessed step.
We were able to deliver the first sets of thank you bags to the medical staff–to the Hem/Onc team in the outpatient clinic and to the wonderful staff who check us in on every floor for every visit (some of these wonderful humans have been with us since Heath’s transplant–13 years of checking us in to multiple appts and watching our kids grow!) They were so moved by your gifts and knowing that they came from people all over the country.
Tomorrow Chris and Heath will bring more bags to the Day Hospital, cardiology, and echo teams. We’ll take the inpatient unit bags in the next week or so–PICU, Hem/Onc, ED. Thanks to your generous donations, we have almost 180 bags to share. Some members of the Jordan High Tennis team and coaches came to help pack the bags on Saturday, and right now there are bags ALL OVER OUR BASEMENT AND GARAGE.
And with the rest of your generous donations, we are going to be able to feed multiple medical teams AND help with a project for the PICU (more details soon).
Late last night I was walking the dog (poor Chris has been out of town in the midst of this). In the crisp, cool night, I looked up at the beautiful moon and felt an enormous wave of peace, gratitude and relief wash over me, allowing it to soak in just for a moment.
And then I dragged Rosie back in and started hollering at everyone to get homework done, shower, go to bed, pick up their laundry–you know, all the “normal” stuff–to get ready for a NEW day.
Tuesday, February 2 — COVID and isolation and school and remembering Nana
I saw a meme on Facebook the other day that said something like, “What a long year January has been.” To that I say, “TRUTH.”
Actually, at this point, I am feeling more like, “What a long decade the last year has been…”
First, Heath is better. Those monoclonal antibodies and vaccines worked well. In fact, Heath Tuttle went to SCHOOL on Friday! I am not even sure I have words for his resilience. Or for the joy that we feel in being able to take “back to school” pictures and see his energy level rising as he gets up to go to school or youth group. We still are waiting to be able to do those next scans, hopefully in the next few weeks. He still has a long way to go, BUT, oh my goodness, what a long way he has come.
I am sitting in the guest room bed, where I have been sleeping for the past 3 weeks. It is hilariously in the middle of the room with almost all of the furniture gone–you see, we were in the process of preparing to have floors installed (they had been on backorder since before Heath was diagnosed!) when Wilson tested positive out of nowhere. The paint supplies are still in the middle of the den, where he quarantined for a week. And then Heath got sick, and then Chris.
Chris tested positive on Thursday about the time the rest of the kids came out of quarantine. He felt pretty crummy for a few days, but he has been getting better and is out of his quarantine room with a mask. Multiple times he has said that he can’t imagine what it would have been like if he hadn’t been vaxxed and boosted.
I am in shock that my most recent PCR test came back negative last night. Damn, COVID makes no sense.
(We had to hold off a bit on the medical thank you projects as everyone recovered. Back on it this week! 😁 )
There are a LOT of “feels” in this house right now. We are really weary. We are also incredibly grateful that all are on the mend. We are trying to make our way through this tough time with some of our own resilience, grace, humor, faith, and love. I know you all are each trying to make it through your own set of “stuff” as well.
We are keenly aware that there is so much grief around us–grief for what we have lost in these COVID years, grief for those who we have lost.
It was a year ago today that we lost my beloved Nana to COVID.
We still haven’t even been able to get together to celebrate her life (Arlington is a little tricky right now with the loss of so many of that greatest generation). But I am constantly reminded that we celebrate her life every day in the ways that we live out the things we learned from her–she wasn’t always easy, but she loved us deeply and all those “Nana-isms” certainly also remain deep within us. Throughout the last 6 months, I thought about how much of Heath’s treatment and so many things going on in the world would have broken her heart. On Friday, as he rolled his eyes and posed on the front porch to go back to school, I thought about how she would have been overjoyed.
So, tonight we will raise a beautiful hand-blown ginormous wine glass (that was Nana’s fav) with white wine and some ice and fruit, sit on her couch and turn on the fire (it was her idea to put in a gas fireplace–she talked about it every time she walked in our den), and we’ll toast to Nana’s long, full life and we’ll hope for a year that doesn’t feel quite like a decade.
I invite you to read about Nana.
Washington Post article about Nana and Nana’s obituary.