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, October 28 – Part 1: 16! Part 2: We got the fever
Part 1: Ella Brooks is 16!
Monday was Ella Brooks’ 16th birthday. And she’s driving! It was PJ day and no she did not go to the DMV in PJs 😉 and yes, it is a sweet ride. We had the chance to purchase a 2011 Acura with only 50k miles 6 months ago from a family friend. We had no idea how much we’d need that 3rd driver. And it gave me the chance to let go of the minivan. But the best part isn’t the driver or the car (even though they are awesome,) it is her daddy’s face. ❤️
We’re grateful that we were all home to honor our beautiful girl on her birthday, to celebrate her driving, to enjoy cake, and the excitement of gifts — Wilson is definitely a gift to us all. Most of the time.
Before the fever yesterday, I had a really nice post written in my head about gratitude and the week we’d had. We still have the gratitude, but I will wait a little bit on that writing part. Today, we just want you to know what’s happening.
Part 2 – We Got the Fever
We wish we could say that Heath just caught the Braves World Series fever from his dad and family members who are serious Braves fans. We wish. But alas, it appears to be a fever related to being neutropenic (at basically 0 white blood cells and neutrophils). And I am writing this from our slightly bigger room on 5200 at Duke.
Until mid-day Wednesday when labs came back, we actually thought Heath had managed to make it through this cycle of chemo without some of the expected issues–neutropenic, fevers, nausea, mouth sores. It turns out the fever/neutropenic just came a little later–Wednesday afternoon. I think all were a little surprised when the numbers came back that he had 1.7 wbc and 0 neutrophils because he really felt ok. In fact, we’ve spent the last 5-ish days celebrating a 16-year-old sister, taking walks, ending both tennis and baseball seasons for the other siblings (well, Heath was at home during those things, but feeling good), getting some Brusters sorbet (Heath is not an ice cream guy) and watching lots of fun sports, of course.
But when he woke up from his nap yesterday after his clinic visit, he was feeling a little sore, so I brought him some Tylenol. As he was taking it, I remembered the rule that we were supposed to take his temp every time before Tylenol, so I ran and took his temp and it was 102.9!! Yikes. As we were rushing around getting things ready to head to the ED–sorry WPC staff for ending your meeting abruptly–Heath said, “What? Seriously? I feel fine…” You still have to go immediately to the ED with a fever during chemo. And he still feels pretty good, even though the temp continues. He and Chris came on into the ED and it took about 5 hours to get a room. We had a yummy dinner together in the ED, waiting. Now he is getting IV antibiotics, a blood transfusion, some meds to raise his wbc, some fluids and we’re waiting to see if something grows in the blood cultures. We had been told that this was a common thing to happen during the neutropenic period of chemo, but we were already in the hospital the last time it happened so we didn’t have to do the somewhat dramatic trip to the ED part.
When they arrived on 5200 last night, Chris remarked that he hated how comforting it was to be here–to have familiar faces of nurses and residents waiting for you when you arrived, to know where we unpack our stuff in the particular cupboards, what food we will order for each of Heath’s meals, how nice a warm blanket will feel for going to sleep. It’s sad that we have it all so ingrained already, but it is also such a gift to have all of this familiarity and consistent care as we continue on this journey. The resident we had a couple weeks ago was wanting an update on how Heath’s fantasy teams had been doing the last week or so and I knew that same resident was sad about State’s crushing loss last week (a little Pack action up here at Duke!), another nurse was reflecting on the college visits she was doing with her kids this weekend, another about the progress her puppy had made in the time we’d been gone, and the awesome woman at the Subway asked how my son (the kid whose mom comes for bread with lots of cheese only) is doing. We’re grateful that we’re inpatient where they can do tests and IVs and all the things, but we wish we were home at the same time. It’s complicated. Just like everything else in this roller coaster.
So hopefully this is a short stay, followed by a short time at home before we start another cycle of chemo next Tuesday, which is the schedule at this point. We’ve learned that the only thing we can plan is that it probably won’t happen the way we plan it. This certainly throws a shade on that saying about “life is what happens while you are planning for something else.”
Sometimes you fall asleep sitting up in the ED when waiting for a room 
they hilariously let us take our badge pic together this morning when Chris came to help bring bags from the deck
Friday, October 22 – Rosie is one today!
Chris and I were taking Rosie (the puppy) for a walk this morning, talking about how we knew we should not expect her behavior to miraculously improve on this milestone birthday. But we can always hope…(see, there is my theme of hope again.) And then, right in between us on the ground…SPLAT. Bird poop.
We stopped and looked up. No bird. But also, no wires, no trees, or any other things for a bird to sit on. So, some bird way up high happened to poop just then and it happened to land on the ground right in the middle of that small triangle the two humans and puppy formed as we walked down the street around 7:45 Friday morning. We weren’t sure whether that was a good sign. Or a bad sign. Sometimes we actually feel pretty lucky all things considered (please set all of the theological thoughts aside, people!) Sometimes we feel like bad things keep happening, over and over.
This has been a weird week. Heath feels pretty good, certainly much better than we had anticipated, so far. His blood numbers are actually not neutropenic at this point. We had a really long day on Tuesday at the CHC (Children’s Health Center clinic at Duke) where he had outpatient lumbar puncture, labs, ostomy change and then an unexpected blood transfusion. Hemoglobin was a little low, so they did a transfusion to give him a “boost” before it went WAY too low. I do think it helped, but the waiting and late afternoon in the infusion space at the Day Hospital was almost more than this mama and boy could take. For some reason it really brought the stress of this whole situation to a head–which just highlights that this is a hard, sad, exhausting road. Our oncology fellow mentioned to me that they see some of this about half-way through treatment as folks know the hard road they have traveled so far and see about the same amount ahead. A weird mix of gratitude and dread. We’ve talked through some ways to help cut some of that clinic/day hospital stress/anxiety, so we’re hopeful moving forward. A quicker day on Thursday in clinic for Heath and Chris–a little school, labs and ostomy check was helpful (and, his labs looked good!). He just told me that he thought he might be ready to try a cheeseburger. Step by step.
We’ll hope we stay like this through the next week. We are grateful for how well the week has gone, but it also feels like the exhaustion is catching up with us. We feel like we’re moving through quicksand, and find ourselves forgetting simple things. Or stopping mid sentence: “What were we talking about?” All of you who are caregivers know this especially, but anyone who has waded into the deep waters of grief. It wears you out.
So today we’ll be celebrating Rosie’s 1st birthday. As frustrating as she can be in her super smart “I know exactly what is going to make you crazy so you will pay attention to me” puppyhood, we also are so grateful for the joy and comfort she brings to us. Chris is not so sure about the “closeness” (she is like a cat and seems to know exactly who DOESN’T want her to sit or sleep on top of them, and it is usually Chris. hee, hee). We’re glad to be her humans.
We are also beginning the celebrations for our almost-16-year-old (10/25 is EB’s birthday). As we dive into insurance and parking passes and driver’s license paperwork, I keep thinking, “how is it possible that she’s 16?!!”). More on that later in a later post, likely accompanied by mama tears.
My friend Beth used to say something about how if you had to pick one or the other, you should pick well-behaved children and poorly-behaved dogs. At least we have that going for us (most of the time). Rosie helps our perspective in so many ways.
Today we’ll consider ourselves lucky in quite a few ways, the least of which is managing to escape the most random of bird poop. Maybe a cheeseburger. Maybe a sit on the porch. It’s hard to see too much beyond that today, but I don’t think Rosie is the least bit worried about any of it – which isn’t a bad way to be.
Sunday, October 17 – Home and hope
Heath and I are sitting here in Room 5210, which is one of the smallest on 5200 and has been our “home” off and on for the last 3 weeks. I snapped a few photos. I asked if I could take one of him. He said “Seriously. no.” (in a slightly steroid-cranky voice) and then I asked if I could get his knee in the photo and he said, “that is completely unnecessary.” (in an equally steroid-cranky voice).
We are watching football from London, and worship, of course. Chris is leading worship this morning for the first time since the end of August, assisting our dear friend, Dan Lewis, who preached. Heath’s eating munchkins and I am drinking a chai latte. Heath is dreaming out loud about adding a golden retriever therapy dog to our brood (for him and then to share with others!) and in the midst we are throwing out ideas for not-too-far-away-drive spring break excursions. While this seems like an odd activity as we sit in the hospital finishing up the cycle 4 chemo week, a little more than half done with treatment, I have decided that it is an act of HOPE. It is an act of looking forward. Of dreaming of a time when this particular experience of hard stuff is past. Hope.
So I guess that tells you how he is feeling (other than a little cranky, which he blames on the steroids) — he is doing pretty darn well. He finished the last infusion of cyclophosphamide at 2 a.m. and had the necessary 6 hours of fluids, and now we have just been told that he can GO HOME! Folks, after starting chemo a day late due to some kidney number questions, this is awesome. Heath had a lumbar puncture with low sedation on Thursday right here in sunny yellow 5210 and the medical staff and Chris said “he crushed it.” He has not felt nauseous. We are attributing some of that to having the ostomy, so it is strange to be grateful for that darn thing/emergency surgery, but this week we will be grateful for whatever helps as his body takes body takes in all those heavy meds. He just told me that he thought he would be able to walk downstairs (we’ve needed a wheelchair each discharge previously). Hope comes in all different ways.
The roller coaster continues. We are under no illusion that all will be smooth. Week 2 of each cycle is the week when your white cells go to 0 and you become neutropenic, when patients often spike fevers and feel pretty crummy. We’ll go back to clinic on Tuesday for his next lumbar puncture and labs. We’ll monitor closely. He’ll take lots of meds. He’ll eat and enjoy being in his own space. We’ll continue to find our way in the midst. We’ll find some other ways to hope.
By the time you read this, we’ll be settling into the screened porch on this beautiful, cool fall day and the “Heath cave” will be calling for a long nap. We’ll update more as the week goes on, but for now, we’ll just say thank you for continuing to hope alongside us.
