DETROIT – After 21 grueling chemotherapy treatments Shawn Burr was told last year that he had cancer beat.
The abnormal white cells that zapped his strength and made him feel rundown and tired all of the time was in remission. The former NHL forward, who played 11 seasons with the Red Wings, was cancer-free – or so he and his doctors thought.
The acute myeloid leukemia – a bone marrow cancer in which abnormal white cells attack normal cells – returned, and now Burr needs a transplant, which he’ll undergo this month.
“It’s a nervous period, I mean I joke about it and make fun, but even though it’s a good match there are obviously a lot of things that have to go right,” Burr said. “I’m pretty confident in the doctors I have and in the place that I am as far as the treatment and stuff that they’re doing. But the quicker you can get off all of the drugs the better.”
Burr received great news recently when he was told that a perfect bone marrow match was located in the international donor registry. But he doesn’t remember many details about the news other than the female donor is from Toronto.
“I was actually in the hospital for my treatment and they punched it off the computer and told me,” said Burr, who feels fortunate that a match was found so quickly. “I think the emotion of finding a match is more for the people who have been sitting for years, like those people waiting for a liver transplant, those people who have been sitting for months and years of not having a match. … For me, I hadn’t experienced that rejection for very long.”
Even though a donor has been identified, Burr knows that a long road still lies ahead before he receives a clean bill of health.
“I imagine that I’ll have a couple other setbacks somewhere along the way,” he said. “Nothing goes perfect and I think you kind of prepare that way. But you have to know that there are going to be some bumps along the way.
“I fought it before and thought I had it beat, but then it relapsed and obviously you’re emotional when that happens. But it’s like losing a hockey game; you pout about it for a few minutes then it’s over and, ‘What do I have to do now?’ ”
The process began this week for Burr, who is undergoing baseline tests to prepare for the transplant. Next Wednesday he’ll be admitted to the University of Michigan Hospital in Ann Arbor, where he’ll begin a four-day chemotherapy regimen meant to wipe out his existing bone marrow.
The transplant will leave Burr without an immune system, which he’ll have to rebuild over three months, he said. He’ll adhere to a strict diet void of fresh fruits and vegetables that – along with any bacteria – can jeopardize his health.
Burr will likely remain in the hospital for 2-3 weeks after receiving the harvested marrow. Regular follow-up visits to his doctor’s office several times a week for 2-3 months will be necessary to closely monitor any infections or complications.
“I will be literally like a baby where I don’t have an immune system,” Burr said. “Eventually after a year you have to get revaccinated and everything because you lose everything. I won’t be in a bubble, but isolated.”
I’m not going to be dragging my lip around and even though I’m having a tough time right now there are a lot of people who are in a lot worse shape than me - Shawn Burr
The relapse hasn’t diminished Burr’s determination to beat AML again, and when he does he plans to continue his crusade against blood cancers through his foundation’s work with the Michigan Dental Association (MDA) and The Leukemia and Lymphoma Society.
According to the National Marrow Donor Program, every year, more than 10,000 new U.S. patients are diagnosed with life-threatening diseases like leukemia or lymphoma, where only a marrow or umbilical cord blood transplant from an unrelated donor may be their best, or only, hope for a cure.
Burr, 45, is now honorary chairman for MDA’s “Take a Bite out of Cancer” initiative to add 20,000 Michigan residents to the donor registry. And if anything comes from his experiences, he hopes to bring greater awareness to the importance of donor registration.
“I can’t understand why this isn’t some type of initiative where we make May the national month of dental associations from around the country and get them involved in this,” Burr said. “I realize there’s a funding issue, but the hard part is that you have golf outings and different fund-raisers where you raise 50 grand or 100 grand, but when you’re talking about adding a million people to a registry and these tests cost $50-$60 you’re talking $50-$60 million.
“It’s a hard thing to wrap your brain around. But if anyone that reads this has some great ideas to raise $50 million – we have a lot of people who want to help, but it’s like anything when health comes down to a funding issue. In Michigan they tell me that there are 5,000 people waiting for a match. If we added a million people to a registry you have to think that that’s going to affect some lives.”
While raising funds can be a Herculean task, being added to the registry is as simple as swabbing the inner cheek. Samples then go into the international registry were they are tested for matches with people suffering from different types of blood cancers. Donors must be between the ages of 18 and 55, in good health and weigh more than 110-pounds. They must also be committed to the cause since they may be called upon to donate their bone marrow once a match is needed.
Having cancer has taught Burr a lot, especially about living life to the fullest and cherishing every moment with family. He doesn’t take little things – like watching his daughter playing in the front yard – for granted anymore.
“When your kids aren’t around you just appreciate things a little bit more and how lucky we are,” he said. “We’re pretty fortunate to be born in North America. I think we’re pretty fortunate as it is, because there are a lot of people in a lot of counties who aren’t as fortunate, and I think we don’t appreciate some stuff as much as we should.”
Shawn Burr will soon be a living example of how the registry works, but his mission is far from complete.
“I’m not going to be dragging my lip around and even though I’m having a tough time right now there are a lot of people who are in a lot worse shape than me,” he said. “There are younger kids who really haven’t experience of lot of good things in life and have to go through this, so I don’t expect anybody to feel sorry for me, but I think you can use your energies to show people how to help.”
Follow Bill Roose on Twitter | @Bill_Roose