Axl Quincey was diagnosed earlier this year with a rare form of cancer (ependymoma). His battle inspired his parents, former Avs defender Kyle and wife Rachel, to form Team Ax and help raise awareness of the disease. Photo courtesy of the Quincey family
Kyle and Rachel Quincey were concerned last March when their son, Axl, developed a fever. But doctors believed it was the flu, and that it would run its course.
“Then Axl’s personality changed, and he became very irritable,” Rachel Quincey said. “At first he was a very independent baby, but then he wanted to be held all the time. And he wanted to lay flat rather than be in an upright position.”
None of that prepared the Quincey family for the bad news: their son had ependymoma, a rare type of tumor of the brain or spinal cord. Since that diagnosis on March 30, just two days before Axl’s first birthday and during the early stages of this country’s battle with COVID-19, the family had to deal with restrictions to travel and hospital visitation as well as their son’s cancer diagnosis.
Hockey, it seems, is more than a sport. It is a support system as well as a tool Quincey used to rehab his outlook and find a positive attitude that will help his family stay focused on what it faces in the coming years. It also was useful as the Quinceys created a new game plan — a power play, of sorts, designed to build an advantage by raising awareness and money to overpower pediatric cancer.
Kyle Quincey. Photo courtesy of the Michael Martin/Colorado Avalanche
Kyle Quincey, a 13-year NHL defenseman whose career included a stint with the Avalanche from 2009-12, said he relied on his hockey background to support his wife, their 2-year-old son Stone, and Axl.
“I was going through a lot of inner turmoil as I was dealing with my retirement,” he said. “But I decided to deal with this the same way I dealt with my hockey career. You’re going to have a bad shift, or a bad period, or maybe a bad game. But you can’t dwell on it, because you have to get on the ice for your next shift or play your next game.
“So that’s how we dealt with it: We accepted the situation, developed a plan to deal with it, and went about executing that plan.”
Axl’s treatment plan began with immediate surgery at Children’s Hospital of Colorado to remove part of the tumor in hopes of relieving the pressure on his brain that caused the fever and vomiting. That was followed by two induction rounds of chemotherapy in preparation for a second surgery in June.
The focus of that second surgery, performed at Children’s Hospital of Philadelphia, was to totally remove the tumor, which was wrapped around Axl’s brain stem as well as vital nerves that control breathing, swallowing, facial functions and eye movements. So removing the tumor was a two-part procedure that involved delicately removing the tumor from nerves, followed by testing the nerve to make sure it still responded, a process that lasted more than 22 hours.
Axl then endured 30 radiation treatments, the last of which took place on Aug. 20, to make sure that not even a microscopic cancer cell remained.
“At the very start, and still to this day, your mind can go to ‘what if’ or have negative thoughts. It can be so overwhelmingly sad, but there’s no room for that. I’ve found that the only way to go through this is to have a positive outlook. Any other way just won’t work.”
— Kyle Quincey
During this arduous process, Axl became linked with the koala, the Australian marsupial known to cling tightly to eucalyptus trees.
“Healthy Axl never wanted to be held — he was on the go, roaming around,” Rachel Quincey said. “After his first surgery, he wanted to be carried everywhere. And he wanted to be held; when Kyle would try to hand him off, Axl would hang on to Kyle like a little koala. His grip was so tight, he would just stick to you.”
So Haley Stastny, the wife of former Avs center Paul Stastny, helped the Quinceys create a non-profit to help fund research to fight childhood cancer. The logo for “Team Ax,” as it is called, was a koala, of course.
“People really wanted to support us, but they weren’t sure how to do that,” Rachel Quincey said. “So they started a T-shirt campaign, with the idea of giving people a chance to show their support while raising funds for childhood cancer research.”
Axl’s fight with cancer has led the Quincey family to become more involved with this fight to better fund research to deal with the disease, which impacts children at an alarming rate. One in every 285 kids will be diagnosed with cancer, and 43 children are expected to be diagnosed with the disease each day, according to the National Pediatric Cancer Foundation's website.
“Only 4% of cancer research funding goes to childhood cancer research, and it’s hard to understand that number in 2020,” Rachel Quincey said. “I’ve met a lot of families who are going through what we’re going through, and their treatment plan was, ‘I’m sorry, there’s no treatment plan.’ And some kids are getting treatment drugs that were created in the 1960s and ‘70s.
“There’s really been no forward growth in funding for children’s cancer research, and I think a lot of that has to do with awareness. … We want to raise awareness and increase funding, because we feel that, the more people who are aware of the underfunding, the more push we can get to reallocate more funding and treatments for children.”
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In July 2020, a website was created to better help accomplish both goals. Teamaxfoundation.org not only tells the story of Axl and the Quinceys, but also attempts to increase awareness of pediatric cancer and raise money through merchandise sales and simple donations.
A quote from Rachel Quincey near the top of the site outlines the Quinceys' motivation: "Awareness will provoke Anger that will Fuel the fire for Change."
Axl’s battle with cancer is far from over. He underwent an MRI in late September to set a baseline for his brain and spinal cord moving forward. He then will continue with the MRIs every three months until he is 5 years old to make sure the tumors do not return.
And while the number of MRIs will begin to diminish over time, they will not end until he is 25 years old.
“At the very start, and still to this day, your mind can go to ‘what if’ or have negative thoughts,” Kyle Quincey said. “It can be so overwhelmingly sad, but there’s no room for that. I’ve found that the only way to go through this is to have a positive outlook. Any other way just won’t work.”
Axl’s story has affected his parents’ outlook on life as well.
“As awful as this has been, it has been rewarding at the same time,” Rachel Quincey said. “Axl has taught me to live in the present. It’s easy to say you’re going to live in the present, but it’s really hard to do. I never have lived that way until now, and it’s a totally different way to live. And I think it’s the most rewarding way to live.”
So the Quincey family will continue Axl’s battle against cancer, and Team Ax will continue to fight for more funding and research to better battle the disease.
“We have a lot of momentum right now, but I think the challenge is going to be to keep that momentum going,” Kyle Quincey said. “It’s going to be a long process to make the changes we want to make. We’ve done amazing things already, but we have a lot of ideas — and a lot of way to go.”
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