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The One Where My Son Got Cancer

By Dustin Rowles | Miscellaneous | August 17, 2022 |

By Dustin Rowles | Miscellaneous | August 17, 2022 |


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In March 2021, the world felt as though it was starting to right itself. Joe Biden was still in his first 100 days and we were hopeful that Donald Trump was behind us. Checks were being sent to households. The vaccines were rolling out, and the COVID numbers were starting to decline (this was long before Omicron). My best friend and the co-owner of Pajiba, Seth, was staying with us for his second six-week stint of the pandemic. My kids were attending school in person twice a week and on the other days attending an aftercare program where my son Declan — who has a way with little ones — was volunteering. As a family, we felt like we’d survived the worst of the pandemic, and while we have always been close-knit, spending all that time together brought us even closer. All things considered, life was pretty good.

Then on St. Patrick’s Day, my son was diagnosed with cancer. I’d have given anything to go back to those pandemic days. Thirteen-year-olds are not supposed to get cancer. My family had already survived one rare and miraculous medical situation that required my wife to live in a hospital for a couple of months. I didn’t know if our family had another medical miracle in it, and with Declan, it felt as though we’d need one. He was diagnosed with AML, the less common, more aggressive form of leukemia. I don’t know what the odds of being diagnosed with AML are — I think a doctor told Declan one in 7 million — but what are the odds that one family would have monoamniotic twins and a kid with leukemia?

Given my already challenging upbringing and the issues that have plagued both my brother and father, I was convinced at the time that the men in the Rowles family were cursed. I sincerely considered changing our last name to my wife’s maiden name to banish it. My kids ultimately rejected the idea because as my son, borrowing a phrase from Molly, often reasoned: The Rowleses have “good bad luck.” Unfortunate things happen to us, but we survive them.

I didn’t feel confident at the time we’d survive this. I know he’s my kid and I’m required to say such things, but Declan is the kind of brilliant, thoughtful, charming, and cute teenager that always dies in movies and books about cancer kids. Both my wife and I thought about that a lot in the early days because it felt at times like we were trapped in one of those movies where they manipulate you by killing off the best kid imaginable. At one point during the ordeal, I watched Sisterhood of the Traveling Pants with the twins, and I had no recollection whatsoever that the cute, precocious kid in that movie died of leukemia. That film ruined me for days. Also, it got everything wrong about leukemia.

AML is an aggressive form of cancer. It’s what Lynn Shelton, the director, was diagnosed with posthumously. In my son’s case, treatment would require living in a hospital for the better part of six months, enduring four rounds of intense chemotherapy designed to wipe out his entire immune system, and ultimately, undergoing a bone marrow transplant. In the early days, as he was having a port surgically inserted into his chest and going through his first round of chemo, it felt unimaginably daunting. We didn’t feel like we could make it through the week, much less six months. I remember sitting with my wife in a hospital office with a doctor, social worker, and therapist, and asking through tears if my son needed a miracle to survive. The doctor — a gruff, no-nonsense man with a dry wit that my son adored — insisted that a miracle would not be necessary, and that science and medicine could handle it. I clung to that, the same way I clung to the words of the doctor who called on the phone to inform us of the initial diagnosis: “It’s going to be a long, long journey,” she said, “but he will be OK.” She wasn’t lying about the journey.

The same doctor who told us that medicine and science could take care of Declan also took my wife aside one day early on and told her it was important not to overly coddle our son because a lot of kids come out of the experience incapable of taking care of themselves because their parents do everything for them. It was a good lesson — how do you not give your kid with cancer everything he wants? — but my biggest takeaway from that conversation was that he might come out of it. If he wanted a new video game and three lobster rolls a day, we’d get that for him. Who gives a shit if he comes out of it an entitled brat? We just wanted him to come out of it.

It wasn’t easy. Declan moved into a hospital room, which had a couch-bed in the window for the parents to sleep. My wife and I took turns spending the night. One of us had to be with the twins, and one of us had to be with Declan, and Molly and I only saw each other for about 60 seconds each day in the hospital driveway for the switch-off. It was the worst experience of our lives, and Molly and I couldn’t physically go through it together. We texted a lot. We kept each other updated basically every minute of the day, but not being able to sleep in the same bed, to hug my wife — the emotional anchor of our family — made the experience all the more difficult. If I could just crawl into bed with Molly for a few hours and cry out all the grief, I thought I might be able to get through it.

The first three rounds of chemo were in Portland at Maine Medical Center, which thankfully was only a 5-minute drive. Chemo is nasty business. A nurse said she spilled a drop on the floor once, and it burned a hole. This particular chemo was designed to kill not just the cancerous white blood cells, but all of the white blood cells. It’s why Declan had to live in the hospital. He had no immune system. They had to keep his body pumped full of antibiotics and antifungals on top of meds for nausea, meds to maintain his appetite, and meds to help a 13-year-old emotionally cope with the fact that he had cancer. A nurse would come in every few hours with IV bags full of meds that they would pump into his chest through his port. Those were our social interactions for the day.

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Declan was an awesome patient. He had some bad days, but for the most part, he developed a strong rapport with the doctors, nurses, social workers, and therapists. A kid with cancer gets a huge team to look after him — he even had a palliative care team, and I hated the idea of that because I associated palliative care with hospice. I initially thought the same thing when Declan started talking to the Make-a-Wish Foundation. No, what?! Isn’t that for kids who are dying? Tell them to go away! No wishes, please! Keep John Cena the hell away from my child!

Meanwhile, Molly and I continued to trade-off. We were a good team. I provided distractions — we watched movies, I played video games with him and regaled him with horror stories from my childhood while Molly handled the emotional side of things. She talked to him about things I couldn’t, like all of his fears. One day, she helped him to make a list of things that scared him most about dying — his siblings missing him, not being able to see his dog, not being able to go back to school — and when I came in the next day and saw it, I lost it. He turned 14 after the third round of chemo, which is an awkward age to be diagnosed with cancer. He wasn’t young or naive enough to believe us if we told him everything would be OK, but I didn’t think he was quite old enough to confront his own mortality, either. Molly helped him cope with those fears, inasmuch as anyone can cope with the prospect of dying.

When he was asleep or playing video games, I retreated into the site. The staff all knew, of course, and they were supportive and wonderful and helpful when they needed to be, but a big reason I didn’t share what was going on with our readers is that Pajiba was a place I could hide out. Writing about The Walking Dead or Ben Affleck’s love life or Manifest gave me a little respite from reality and filled a lot of hospital downtime, although I did mostly stop writing about politics for a good six months. I was emotionally fragile and couldn’t handle the toxicity of it (James took over the politics beat). Oh, and fun fact: The showrunner of Manifest emailed me at some point while I was in the hospital to say that he read my recaps. He had a good sense of humor about them. Nice guy. Genuinely. I wrote him back after an episode where the kid in the show was dying of leukemia and told him he more than repaid me for all the Manifest digs by making me watch a show where the kid has cancer, from a hospital room where I was sitting next to my son with cancer.

The situation got a lot direr in the second month when my son developed a giant f**king mass that sat on his heart and lungs. The doctors didn’t know where the mass came from, whether it was related to leukemia or the treatment, or pre-existed leukemia. When they told us about the mass, we assumed the worst — that it was a malignant tumor — and it took them a good week to rule that out because they couldn’t properly test it or remove it. He had no immune system, so surgery was out of the question until his white blood cells rebounded. They put him in the ICU. We spent a lot of that week imagining all the worst-case scenarios. Until they could open up his chest and remove the mass, they had to snake tubes into his rib cage, through his lungs, and into the sac around his heart to drain the fluid into these plastic collection tanks at the foot of the bed. The nurse said it was about the most painful experience you can go through in the hospital. I think Declan and his morphine button mentally checked out. The mass broke his spirit for a few days.

But they did remove it. It was benign. It was an odd thing, but we were relieved that he only had leukemia. “Oh, thank god! It’s just one type of cancer!” A few days after that, they were finally able to remove the tubes from his chest. Of all the things that he went through in those six months, that was the most traumatic for him. They didn’t sedate him. They just started pulling these tubes out of his chest like a magician pulling a handkerchief out of his sleeve — it just kept coming and coming and coming. He must have had two feet of tubing coiled up inside of his chest. He got to go home for a few days after that to recuperate, but he didn’t want to come back for the third round, not because of the chemo, but because he was terrified they’d put tubes back into his chest.

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Thankfully, the third round proved mostly uneventful relatively speaking. We moved to Boston for two months after that and lived in an apartment in Cambridge. It was summer, and the twins were out of school, so they came with us. We were very, very lucky that both of Declan’s siblings were donor matches for the bone marrow transplant. There’s only a 25 percent chance of that, but outcomes are much better with sibling matches. It also meant we didn’t have to rely on a stranger from the bone marrow registry. That’s a whole other story unto itself.

H weighed a little more than L, so they were chosen to donate. They went into the hospital on the morning of the transplant, the doctors removed what looked like literally a gallon of blood and marrow from their backside, and the nurses walked it up to the bone-marrow transplant floor and hooked it up to Declan’s IV pole. While H was recovering, L pushed the button to start the transplant process.

Bone marrow transplants are magic! The week before, they use a very intense regimen of chemo designed to be strong enough to blow out the bone marrow but not quite strong enough to injure the organs. It’s a very delicate balance. It’s also a dangerous time for patients because not only do they have no white blood cells or platelets, they don’t have the bone marrow necessary to produce them. The blood and marrow went from an IV bag and into Declan’s port, and all those cells just magically knew where to go. It gives the recipient an all-new immune system — in some cases, where the blood types are different, the recipient will even get a new blood type.

After that, you wait. You have to wait for around three or four anxious weeks to even find out whether the new marrow will “graft” or fail, and if it does graft, you have to worry about graft vs. host disease (whether the new marrow will attack the body) or whether some latent virus in the donor’s immune system will rise up and take out the immunocompromised recipient. It was a sibling match, so we felt confident it would eventually graft, although we obviously worried about complications. With bone marrow transplants, there are always complications. We’d seen them, not just in case studies but in the patients on the pediatric bone-marrow transplant floor. Initially, we were lucky. Declan grafted at about three weeks and things proceeded so well after that the doctors eyed a discharge date. Unfortunately, the day before he was due to be discharged, Declan developed breathing problems.

For me, the next nine or ten days were the worst of the entire saga. I was spending the night with him on Labor Day when his breathing had deteriorated so much that they moved him into the ICU. This was a completely different experience from anything we’d gone through before. This was the pediatric ICU in a big city during a bad wave of COVID. There were no rooms, so they created a makeshift one in the hall and hooked him up to a CPAP machine to help him breathe. An ICU doctor told me around 2 a.m. that he thought they’d have to put him on a ventilator. You never want to hear that, especially during a bad wave of COVID. I called Molly and she came in so we could be together in case things took a bad turn. It was the first night we got to spend together in about five weeks, and it was in an ICU unit where I felt like my son’s life was hanging in the balance (Molly and Declan will both tell you that the experience with the mass was far scarier for them).

Declan hung in there. He stayed on the CPAP in the ICU for nine days, but he remained just healthy enough to avoid the ventilator, although hell if he didn’t have to get those chest tubes reinserted (thankfully they were smaller in diameter and it was only for two or three days this time). When they ran out of all the other options, they put him on steroids, and that worked to turn his breathing issues around. It also made him ravenously hungry and moody AF for a few days. The hospital chaplain came in a few times a week to check on Declan and bring us challah for Shabbat on Fridays, and she loved to tell us stories about kids on steroids angrily hurling profanities at their parents. Declan had a few wildly out-of-character moments, but I don’t think he ever threw anything at us.

It was an impossibly hard two weeks where, again, we often feared the worst. At one point, Molly insisted that I use whatever meager connections I had and find a way to ask his favorite actor to send him a message of support to lift Declan’s spirits. Lord Castleton, god bless him, facilitated that through a generous and wonderful director friend. At my absolute lowest point during Declan’s stay in the ICU, we received a video from one of the most famous men on the planet singing to my son in Hebrew and giving his dog a shout-out. It meant the world.

There were a lot of hard lessons we learned from the experience, but one of the better ones was: Never underestimate the kindness of strangers. The number of people — friends, family, nurses, doctors, strangers, celebrities! — who helped us through that time is impossible to calculate. Political, socioeconomic, and personality differences completely melt away when someone’s kid has cancer.

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In mid-September, about six months after his diagnosis, Declan finally came home and reunited with his siblings and his dog. He got to sleep in his own bed and sit in the sun in his own yard. I wish I could say it was much easier after that, but the recovery process is emotionally taxing for the parents, and physically and mentally taxing for Declan. There is an endless procession of medical appointments. Because he was severely immunocompromised, we were in double COVID lockdown for another six months. While the rest of the world was reentering society, we barely left the house except for medical appointments. He made twice weekly visits to Boston for all-day appointments, and then weekly visits, and then monthly visits, along with weekly and then monthly visits to the clinic in Portland. The appointments never get easier for me. My anxiety levels skyrocket in the days before every appointment and go off the charts while waiting a few hours or a few days for test results to come back. Sometimes, Molly and my anxieties feed off of one another. It is a bad trip.

Two weeks ago, however, he made his last visit to Boston for another six months. An appointment last week in Portland was his last for 9 weeks. He has regained his energy. He gained some more weight back. After another six months at home, he started volunteering at his siblings’ school, where he helped in the classroom with the kindergarteners and first graders. In June, he went to Costa Rica for 10 days with Molly and saw all the wildlife. In July, he turned 15, and, fittingly, he started working as a counselor for little kids at summer camp.

A few days ago, his bone marrow aspiration came back negative. He’d made it a year since transplant, a year and a half since his diagnosis. After taking last year off, he will start high school in the fall. He’s a surly teenager now, as is his right, but he still has his brilliant charm and fantastic sense of humor when he feels like turning it on. He goes to summer camp, hangs out with his friends, plays video games, and rewatches The Good Place. He fights with his siblings, and his mom and I harass him to eat more. He’s a goddamn marvel, a remarkable kid who has experienced something no one — much less a 13-year-old — should ever have to endure.

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I do want to publicly thank so many people who provided support over the last year and a half. Of course, we want to thank the doctors and nurses, social workers, and therapists who treated — and continue to treat — our son. We want to thank the Make-a-Wish folks. We want to thank his orthodontist for coming into the hospital to remove his braces a week into his treatment. Thank you to everyone who may have never known us and prayed and sent their positive thoughts our way. There are also the amazing local friends — my Pajiba colleagues, the book club, the pub trivia team, the fantasy team friends, and the JCA and Levey community, who provided gifts and snacks and books and blankets and incredible art and a coffee machine for the hospital room and countless texts just checking in — as well as the generosity of the Portland Jewish Community, which made sure my son never had to eat hospital food. We want to thank Uncle Daniel and Aunt Casey for allowing us to use their Cambridge apartment during the bone marrow transplant. Most of all, we want to thank Aunt Becca, Aunt Hillary, Fern, and Uncle Seth, who provided unbelievable amounts of logistical, emotional, and other support through the entire ordeal not only for Molly, Declan, and myself but also for the twins.



Dustin is the founder and co-owner of Pajiba. You may email him here, follow him on Twitter, or listen to his weekly TV podcast, Podjiba.



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