'Hockey is his whole motivation': Gahanna's Phillips refuses to back down in medical fight
After being dealt a life-altering diagnosis in May 2018, Ian Phillips realized he had two options: sulk over the news or move forward with a positive attitude.
Phillips chose the latter, remaining upbeat nearly six years later and enjoying a productive life while battling Von Hippel-Lindau (VHL) syndrome, which can cause tumors to grow in the eyes, brain, spine, kidneys, pancreas and adrenal glands.
Phillips’ disease was detected on his final day of sixth grade. He had been squinting excessively, and his parents thought he might need glasses. But upon examination, multiple tumors were detected behind his left eye. As the result of multiple surgeries over the next two years, he’s now blind in that eye.
None of that, or other VHL issues that followed, has stopped him from pursuing his passion for hockey. Phillips, a senior forward for Gahanna Lincoln, has been playing since the second grade, and he wants to make a career of covering the sport as a journalist.
“When (the diagnosis) happened, I knew there were two ways in looking at it,” Phillips said. “It’s feeling sorry for yourself or only worrying about the things that you can control. It’s gotten harder in the past couple of years, but I think I’ve done a pretty good job of managing it because I was a pretty positive kid.”
On the ice, he learned how to adapt.
“I had to pick my head up a lot more and be cautious going to the right side of the ice since I didn’t have vision in my left eye,” he said.
VHL requires continuous care
Another tumor was detected in Phillips’ upper spine, just under his brain, in December 2021. However, doctors opted to forgo surgery because of its location.
“It’s a very invasive surgery in the spot where the tumor is,” he said. “If I end up going the surgery route then I might not be able to play hockey again. It’s a bunch of complications for the future.”
The tumors are considered benign, but Phillips must undergo full-body MRIs every three months to monitor his health.
“The tumors are not cancerous, but they’re dangerous,” he said. “Some of them can do unexpected things. It’s one of those diseases where you just have to monitor it. If anything comes up, you have to catch it early because it could spread and could grow pretty fast.”
Doctors check his blood regularly. He takes a chemotherapy medication and has an eye drop that helps keep his left eye “as healthy as possible,” said his mother, Sarah.
“He’s monitored very closely with bloodwork monthly and as needed based on how he’s feeling,” Sarah said. “He seems overall to mainly be struggling with fatigue but has really figured out how to manage it, mostly resting more intentionally prior to strenuous activity. He knows to listen to his body and take breaks when needed.“
Hockey is Ian Phillips’ passion
Phillips joined the Gahanna team as a sophomore. He previously played on travel teams for the Columbus Thunderbirds and Easton Youth Hockey Association.
His love for hockey also includes writing about it – and other sports. He has worked for several outlets, including Ohio Hockey Digest, Yamo Media and CBUSsports.com, and has written about the Blue Jackets, Crew and Clippers.
While his playing career likely will be over once Gahanna’s season ends, he plans on majoring in journalism at Ohio University and hopes to someday cover hockey full time.
“Hockey has been the one thing that has been pretty consistent,” Phillips said. “I’ve been able to go out there and forget about what was going on with my health. ... I love writing about hockey.”
On the ice, Phillips looks like any other player. He has 10 assists this season for the Lions (10-10-2-2, 2-7-1-1 CHC).
“I’ve known Ian since probably the seventh grade,” Gahanna teammate Liam Rice said. “You wouldn’t even know what he’s going through. He works hard, he’s a hustler. On and off the ice, he’s a guy you look up to. The (disease) might affect him, but he never uses it as an excuse. He just goes out there and plays hockey.”
Phillips’ resiliency impresses coach Kevin Schodorf.
“You see him around the rink and he has such a positive attitude,” Schodorf said. “Every shift, he grinds and competes. I see that as someone who is just the epitome of our team, and the heart and soul of our team.”
Ian Phillips refuses to give in to VHL
In his ongoing battle with VHL, Phillips was prescribed the chemo medication belzutifan beginning last April. The drug is intended for people 18 and older, but parents Brian and Sarah and physicians lobbied to enable Phillips to begin the medication as part of a clinical trial.
“It was a year-long fight to get this medication,” Sarah said. “It’s a brand-new medication. Because it’s such a rare disease, it’s even more rare for pediatric patients, so they didn’t have the information they needed to prescribe it at the time to a 16 ½-year-old kid. This drug was the only salvation to prevent surgery, which would subsequently put him out of hockey. Hockey is his whole motivation for getting better.”
Out-of-pocket cost for the drug is $40,000 a month, but since Phillips is taking it on a clinical-trial basis, the family pays only a deductible.
The tumor on his upper spine has decreased by 50%, his mother said, and other tumors previously found on the lower spine are no longer detectable.
“The drug has saved my hockey career,” Phillips said. “That drug has saved my life.”
This article originally appeared on The Columbus Dispatch: Gahanna hockey's Ian Phillips refuses to back down in medical fight
