Brian Boyle is looking forward to the upcoming NHL season, even though he’ll be continuing to fight leukemia. But thanks to a summer of rest — and now that his 3-year-old son Declan is finally “over the hump” after months of medical treatment for an extremely rare jaw malformation — Boyle is feeling good.
“We were able to just enjoy things with the family,” the New Jersey Devil, 33, tells PEOPLE. “It was awesome to get a full summer of training in professionally, but it was especially nice to get some time with the family after what we went through last year.”
And it was a tough one. After signing with New Jersey in 2017 and settling in the area over the summer for training camp, Boyle started feeling overly fatigued.
“I came about a week early and was skating with the guys, but I was feeling really tired and slowed down and mentally feeling like I just didn’t care much for anything at that point, because I was just so exhausted,” he says.
Blood tests showed that Boyle had leukemia.
“I thought maybe it was Lyme disease, because I’m living in New England in the offseason and playing golf,” he says. “I was pretty scared.”
Boyle quickly started treatment, and was grateful for strong support from the Devils organization and the teammates he had just met. But then just a couple weeks later, he and his wife Lauren Bedford learned that their son Declan may have Ewing’s sarcoma, an “aggressive” cancer.
“It was really not a good prognosis if that was the case, because it was so close to his brain,” Boyle says. “But he had no other symptoms. He didn’t have fevers and everything was normal, other than that he had a really large chin.”
After a few weeks of testing, they thankfully found that Declan did not have cancer. Rather, he had an AVM — an extremely rare arteriovenous malformation in the jaw.
“He had a crazy amount of blood in his jaw, and it had probably been there since utero,” Boyle says. Over the next few months, Declan had “about ten or 11 procedures and operations, with teeth extractions” to get the blood out and reduce the swelling.
Some days were “scary,” and Boyle had to balance hospital visits with his own treatment while playing through the hockey season and missing his family, which had recently grown to four with the birth of their daughter, now 1.
“It was definitely hard. They were never off my mind,” he says.
“I would never leave the hospital when Declan was under anesthesia — I would always wait until he got out of it and was doing well. But I decided that if I was going to leave, I’d better do my job well,” he said.
While Declan will need a few additional treatments, like a permanent retainer to help his jaw bone grow in properly and cosmetic surgeries in the future, “everything looks good,” says Boyle. “I think we’re 99 percent there. We’re hopefully just looking at it in the rearview mirror now.”
But his own treatment is ongoing “for the foreseeable future,” because he has a chromic form of leukemia.
“It’s a really good prognosis, but it’s serious. If you don’t take care of yourself and do the treatment as recommended it can get worse, so it’s something that were very much taking seriously, my wife and I.”
Boyle continues to take medication twice a day to attack the mutating cells in his body, and he gets regular blood tests to make sure he’s staying on track.
“I’ve asked [when I’ll be in remission] and it’s years, like three years,” he says. “I’m on the right track, and I’ve exceeded all these milestones, which has been really positive. But you want to be at all zeros across the board, so I think it’s at least a year before I can even think about what comes next.”
But Boyle says that he doesn’t feel the physical effects of the disease these days, and is excited for the Devils’ season opener on Oct. 6. He’s thankful for his wife, and all the support he’s had from the League and the media, who awarded him with the Masterson Trophy for perseverance in June.
“You know it, was tough for me, but really it was what my wife went through. It was nice to be able to stand up there [at the NHL Awards, when he was presented with the trophy] on her behalf as well,” Boyle says. “So many people reached out to me. It was an unbelievable year, just in terms of the humanity that I was shown.”