Tuesday, December 13 – Day by Day Becomes 14 Years

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Well, it has been a while, hasn’t it?

We keep meaning to sit down and write an update.  And life keeps happening…and in this case it really has been a  “no news is GOOD news” scenario.

I did a funeral at my church, FPC Burlington, on Monday afternoon, and I was enjoying some time meeting out-of-town folks.  One woman said, “your name sounds so familiar…” and I assumed it was the Montreat connection (as it often tends to be in those situations).  And then another church member said to me, “This is the woman who shared your son’s name on their church’s prayer list in Virginia last year!” And they started asking about Heath and I said, “Oh my gosh, I was getting ready to write an update for tomorrow.”  And then 15 minutes later I got a text from another dear church member who saw this on the Duke website and said, “Is this Heath?”

On Tuesday between 5-6pm Heath and I will be interviewed at the Mix 101.5 studio about our experience at Duke.  We haven’t done the Radiothon for MANY years, but it felt like this was a good year to jump back in–and even more special on the 14th anniversary of Heath’s heart transplant.

It is a great way to support Duke Children’s hospital, which does so much good for SO MANY CHILDREN!  https://wralfm.com/radiothon-duke-childrens/

So I guess the Spirit was moving for an update.

First, the medical update–

Heath continues to do monthly check-ups with Duke oncology and 3-month CT scans, although we may finally be able to push that out a bit because the scan on Nov. 8 was CLEAR!!! The most decisively clear yet.

He will still have monthly labs and visits with HemOnc and he will have a heart catheterization on Thursday, Dec. 22.  Apparently chemo can cause some heart issues (but his has been strong through all treatment) so they have to do a 6-month heart cath instead of annually like usual.  So, that is not the best experience for the beginning of winter break, but he is doing so well in school that we didn’t want him to take a day off if we could help it.

We continue to check in with some of the other specialties at Duke as well–like orthopaedics and nephrology, and I have learned that I never should have said, “Wow, I think we’ve seen almost all the specialties,” which I think I said to someone a few months before the lymphoma reared it’s ugly head.  Then came oncology (we love them, but wish we didn’t have to add them to our list of docs).

He has quarterly heart checks at Duke and a new at-home lab program monthly that is supposed to be as accurate as a heart catheterization in detecting rejection.  Modern medicine is AMAZING.

Then, the rest–

We made our way through a lovely and busy summer full of family and friends and a really “thrilling” kitchen renovation–one 14 years in the making–and the finished product is the wonderful gathering space I had always dreamed of creating.

High School started with a bang.

EB’s tennis season went well and she is managing MANY AP classes and we’ve started doing college visits (yikes!)

Heath has rocked 9th grade so far, has been labeled the “Best school sports fan” by many AND finished driver’s ed (yes, you read that correctly. watch the road after he gets his Jan. 18 learner’s permit!).

Wilson is, well, Wilson, and continues to be an expert on maps of the world (ask him where ANY country is located) and football stats.

Serving as pastors of two different, wonderful congregations continues to challenge and fulfill Chris and me. We’ve married and buried loved ones.  We’ve cried a little, laughed a lot. all the things.

How would you describe your last 6 months?

How are we?  Well, that’s complicated. We’re fine. We’re grateful.  We’re exhausted–emotionally and physically.  We’re a little traumatized, trying to harness the chaos that is life, trying to figure out how to live without constantly waiting for the other shoe to drop.  We’ve done this for a long time, most of our children’s lives, most of our married life.  And we’ve found ways to appreciate the good things, big and small.  And, we’ve tried to roll with the punches with as much grace and humor as possible.

We’ve tried to do a little good and spread a little love and hope and light along the way. And as so many people we know who walk complicated journeys, we’ll put one foot in front of the other and keep on moving, keep on praying.

14 years ago, as we sat waiting for a heart and then for Heath to begin to recover from transplant surgery, our family made a wreath of their hands traced and cut out.  Over the years I hung it up, with bent fingers and a little worn and torn, because it reminded me of the love that surrounds us, the circle of life for all of us, who are all a little worn and torn.  Last year I finally had it framed, so it could live on, slightly more protected, reminding us of that time and of the most precious gift of life–of a family’s incredible gift, whose precious daughter’s heart beats strong within our son.

May we all be reminded that we are surrounded by love, whether we’re worn and torn, whether our journeys feel smooth or a little (or A LOT) bumpy.

“The light shines in the darkness, and the darkness did not overcome it.”  John 1:5

A funny note came from Chris as I was writing this at church:  “14 years later , that child is singing bad country music too loudly in the kitchen while making his lunch and complaining that his sister isn’t’ ready yet to take them to the student government Christmas gathering.  I guess we’ll take it.”

Indeed, we will.

We’re grateful for all of your love and care.

We wish you good health and light and hope in the coming year.

Football and family time with our favorite App freshman.
Family beach time with cousins in Nags Head.
Duke football honored pediatric oncology patients and families earlier in November!
Heath and Chris and Wilson hiking Lookout, months before we thought Heath would be able to do it!
On the trail, being HT.

Tuesday, May 17 – The Very Hangry Knee Surgery

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An update for you from the Tuttles this evening is that Heath’s surgical procedure on his knee went well and according to plan. It was a much longer day than expected with several delays that postponed the procedure to around 4pm, giving plenty of time for hanger and anxiety to grow. By 6pm Heath was waking up in recovery and they finally returned home at 8pm. Heath is settling in with Noodles & Co. and some baseball.

Sunday, May 15 — All systems clear

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Hi friends,

So, it has been almost two months since we have offered an update, and we remain so, so grateful for your continued love and care for us – in the past, and now.

The medical update. We continue to have VERY MANY follow-up appointments. On Wednesday, Heath had his 3-month CT scan and, in the words of the text from our oncologist at about 9:30pm Wednesday night, “All systems clear!” There are always details to tend to, but this is very, very, wonderfully good news. Heath continues to get stronger, gain weight, and most importantly to him, his hair is growing back.

Heath will also have minor leg surgery Tuesday, May 17. The bones in his right leg are longer than in his left, and this, as well as some muscular stuff in his right calf, have made walking and running a little more complicated. Until about a year ago, this was the thing we spent the most time and energy on an average day. Until. But now that he is cancer-free we are circling back, and that will happen next Tuesday. It should be four weeks or so of healing, but we are very hopeful that in the long term this will get his legs much closer in length, and therefore help the rest of his body be in better alignment. He will also have a post-chemo heart catheterization on June 1.

An update on the rest of things. In the grand scheme of things, we are all doing pretty well. Wilson is playing a lot of South Durham Little League baseball. Heath is back at school and was confirmed on May 1. That was pretty special. Ella Brooks is relieved to have completed the two AP exams she needed to take. Everyone is eager for school to be over. Carrie is very busy at First Presbyterian in Burlington, with all of the usual things, as well as a number of retirement events for our friend and colleague Ron Shive. This has been great fun, and it is such a gift to be able to celebrate his extraordinary ministry. But as those of you who are church folk know, pastoral transitions create a lot of anxiety in the system. That is surely an extra layer, and you all would be surprised to know when people are anxious they track Carrie down and want to talk. 😊 She’s doing great work, but it is a heavy load at times. I’m so grateful for how things continue to go at WPC, but will be ready for a nap after the public launch of our capital campaign on Sunday. Both of our churches are – like every other church I know – full of people who are so faithful, but are also pretty weary. I don’t know anyone who isn’t pretty tired right now. And all churches, and all institutions, are pretty uncertain about the future. It is hard to see too far ahead, and hard to know what the future holds.

As I said back in March, re-entry is hard. It still is. You have this 7-8 month season of extraordinary intensity, and then, “hooray, no more cancer!” And after that you pivot right back to life and work and carpool. We are both so, so grateful for the work we have the privilege to do, and all of the other juggling. But it is hard to figure out how to make all of the pieces fit together, sometimes. I suspect you, dear reader, know something of this feeling. We had the chance over spring break to go to Tybee Island, then Savannah, then Jacksonville Beach, for time away together and with dear cousins. We were so grateful to have had the chance to stop and see our beloved Grandma Betty (Strow’s mom), who died a few weeks later on Easter Sunday. Her great spirit and smile live on with us, and we will celebrate her life later this summer in New Jersey.

Carrie and I went to New Bern for a fun evening then a half marathon (I’m not sure this was a good idea. 😳 ). I spent a week with my preaching group after Easter. We have had a handful of great family visits, for Palm Sunday and for Easter and a handful of other times in between. We’ve been able to see friends for lunch, and catch up with others on the side of the baseball field. That has been a gift, to be able to see people more, to enjoy laughter and conversation about NORMAL things, and to enjoy the sunset and breeze and that dirt from a baseball diamond that seems to get everywhere.

That might be the most important reminder in all of this – even with the Covid uncertainty around. People matter. The people in your lives that you may take for granted. The people you see as you walk in the neighborhood. The people you pass in the grocery store. The people you work with. Friends, old and new – whether you see them often or not. I think a lot about how one of the most important pieces of the incarnation for me is how I get to imagine Jesus doing a lot of the stuff we enjoy doing. Yes, there were all the fancy healings and stories we read on Sundays. But there were also plenty of other moments when he went for a walk with friends, or they pushed out onto the water in a small boat. When Jesus and a few friends were settling in to stay the night somewhere new. When they built a fire and had dinner, maybe played some music and laughed as the stars came out. Those ties that bind matter so, so much, and get us through.

Thanks to you all for being some of those people for us, and for so many more.

Thursday, March 17 — Thoughts from re-entry

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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

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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.