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.

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! 😁 )

Chris just snapped this while I was writing.

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.

Tuesday, January 25 — The rollercoaster continues

For the last few weeks, we have had today circled on our calendar. We were going to head in to Duke, meet with oncology, and have a CT scan. If all seemed well we would transition to what they are calling, ‘follow up care,’ meaning that this leg of the journey might be over. Maybe.

But aren’t there today, because Heath tested positive for COVID on Sunday morning.

We’ve actually been all in separate spaces and masking in our house for a while now. EB had an exposure, then Wilson, then EB tested positive, then Wilson tested negative TWICE before he tested positive. Sweet guy has been sleeping in the den for 7 days. Carrie is in the guest room. The dog is very, very confused. Nothing more than congestion and a slight fever for anyone, thankfully. There is a picture below of all five of us on facetime singing to Heath for his birthday last Tuesday evening. Wilson’s test was Tuesday afternoon, then Carrie and I were both negative on a rapid test, then we retreated to our corners. I did curbside pickup for dinner, and then took wonderful brownies made by Carrie’s mom on napkins to everyone’s room. I stuck a candle in Heath’s, lit it, then ran downstairs and called everyone. It was ridiculous and sad and fun all at the same time.

But we were pretty darn sure we were in the clear. Everyone else felt fine. Heath and Carrie were rapid negative on Thursday, so he was able to do his big heart checkup, which went really well. That was great news. We had scheduled PCR tests for Carrie and Heath and myself for Friday. Early Sunday the results came in – Carrie and I were both negative. Hooray! Maybe we’ll beat this thing! Then another email…Heath was positive. Our hearts sank.

Thankfully, our wonderful health care team kicked into gear. I’ll take Heath Tuesday to an infusion center for COVID patients where he’ll receive a 30-minute infusion of monoclonal antibodies. We’ll have to hang out for another hour, then we can come home. Receiving this treatment usually reserved for immune-compromised or other vulnerable patients is a privilege, that we know. We should say once again how grateful we are for that health care team. And we should also again say that this virus spreads like crazy and you won’t have any idea how, so please be careful, and please act out of care for all of the people around you.

This is also a place to say ‘thank you’ to all of you who have shared so much for our bags for healthcare workers. You all have been amazing. We are making plans to put them together over the next few weeks (once we’re all out of quarantine). If you have given or dropped off supplies, THANK YOU. Every time the dog has barked the past week we’ve heard Wilson call out from the den, “Someone else is leaving something on the porch!” If you have been meaning to but haven’t gotten around to it yet, no problem. Actually, it would help us if you would wait. We have a lot of wonderful supplies and would love to get some bags made, then we’ll let you know if we need more help I really think we can do 150 with all you have given. We will use your generous donations to help get any extra supplies needed for the bags and we are working with some folks on a couple of special projects with the remaining donations! We’re also working on putting together a list of other places you can support with your time or energy or money. We’re learning a lot about the world of pediatric cancer and will share in a few weeks some resources you can focus some of your amazing generosity. We really can’t say thank you enough.

I’ll confess this morning, after not much sleep and even more worry, I was getting down. I walked the dog while Carrie consulted with our Duke folks, then went down to the basement to do some work. I opened up an email to WPCs wonderful staff to let them know of Heath’s positive test, and paused for a moment to take a breath. We’re tired. And each time we think we have a date that will get us to another milestone something happens, and things get pushed back, and that is really disappointing. But then, in the middle of my little pity party, Heath texted me a question about school. Durham Public Schools had an online school day on Monday, with assignments posted and some space for conversation. He was so excited to go back to school. But he was up, checking in on his classes, knocking out a few small assignments. And I was jolted back to reality. If he, in his room with COVID, can get up and do some school and start the day, the least I can do is keep things moving on my end. His attitude continues to amaze me. Actually, the ways all of our kids have handled these few weeks of isolation has been something for which we are so grateful. I think it’s because they know they are cared for and supported, just like we know we are cared for and supported – by God working through you, through so many. It doesn’t mean things don’t still feel pretty heavy sometimes. But we do know there’s plenty of help to share the load.

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