By Ray Biggs
D3Hockey.com Managing Editor
Utica,NY- By any stretch, Diffuse Intrinsic Pontine Glioma is not a common ailment.
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| Former Morrisville head coach Brian Grady, now an assistant at Utica, drops the puck. Photo: Michael Lupo for Utica College |
A mere 100 to 150 diagnoses are given each year, almost exclusively to children. It's a complex,debilitating form of pediatric cancer that slowly shuts down the nervous system, and is among the most resistant to current treatments, with the five year survival rate standing at a minute one percent, and just three percent living to three years past diagnosis.
It may not affect many, but DIPG is a disease that hit home as recently as this year for many of us at the D3sports network, and millions of people worldwide. Lauren Hill's brave battle with DIPG captivated a nation, as the Mount St. Joseph freshman fufilled a lifelong dream of playing College Basketball. Beyond the hardwood, Hill had started a movement that brought a little-known disease into mainstream society for the first time. Hill passed away on April 10th, leaving behind an incomparable legacy of awareness.
Even amongst tragedy, there are those chosen few who survive. Those who live with the responsibility of carrying on firsthand a fight that nobody enters by choice. Laurel Simer, who has lived with DIPG since 1999, is one of them. Simer has walked among us in the Division III hockey community for years. She once did so as a player, suiting up for four years between the pipes at Utica College. These days, she watches a new generation from above the ice as the school's assistant sports information director, recently receiving a full-time promotion at her alma mater.
The 26-year-old Simer has had, without question, some terrific opportunities. She's a graduate of Shattuck St. Mary's school in Faribault, Minnesota, where she lived and learned alongside elite hockey players like Derek Stepan. She's gotten to know many others who walked the halls before and after her as well, a laundry list that includes three-time Stanley Cup Champion Jonathan Toews and Sidney Crosby.
However, what has become an incredible journey to life after college hockey would never have been possible if the odds had their way.
It all started in the summer of 1999, when a ten-year old Simer had bumped her head at a school function. What started as a run-of-the-mill childhood injury instantly transformed Simer's life into one that was anything but ordinary. While she was being evaluated for concussion symptoms, doctors ordered a CT scan upon noticing an imbalance in eye dilation.
That scan revealed a life-changing diagnosis. The onset of DIPG had created a tumor the size of a lemon on Simer's brainstem, a tumor that possessed the ability to rapidly deteriorate the body's basic functions. At the time, Simer admittedly could not fully understand the magnitude of her situation.
"When I was first diagnosed, truthfully, I didn't really know what was going on," Simer said. "I remember being in the doctor's office and him saying "we found a tumor on the MRI, and we believe it's cancerous." I didn't know what that meant, but my mom immediately started crying, so I knew that it couldn't be good."
It was the beginning of more than one exhausting battle for Simer. There was the fight to live to see the other side of a disease that has claimed so many lives, and within that struggle lay the challenge of maintaining any semblance of a normal childhood amidst constant doctor visits, regular travel to see specialists that were hours away on occasion, and fufilling the normal academic obligations required of a typical fifth grade student.
In addition to lifestyle changes that would overwhelm most ten year olds, Simer was also left with the devastating prospect of having to leave the game of hockey behind.
"I think my biggest fear at that point was that I wouldn't be able to play hockey," Simer said.
Against the advice of medical professionals, the Simers agreed that as long as Laurel was in physical condition to be able to do so, they would continue to let their daughter play hockey, in an effort to improve the status quo beyond the doctor's office.
"Hockey was kind of my escape," Simer said. "It was where I could just kind of be a normal kid again, not the "sick kid". And I'm grateful that my parents realized that and let me keep playing."
Occasionally, Simer's medical needs and hockey obligations would collide. Appointments with in-demand specialists in the twin cities would sometimes fall on game days, and it was not out of the question for Simer to have a treatment or radiology appointment tightly sandwiched between two tournament games.
Simer's commitment to her battle with DIPG, and her commitment to the game that allowed her the chance to fit in amongst her peers would pay almost unheard of dividends. With the successful usage of alternative non-radiation treatments, Simer's condition stablilized, and has remained stable to this day. Her survival remains a remarkable medical mystery, as she has outlived 99 percent of her peers.
Defeating the virtually insurmountable odds of DIPG survival gave Simer a new lease on life. She continued her hockey career through the end of her time at Shattuck St. Mary's and into college, concluding her prep career as part of a 2006-2007 USA Hockey National Championship team that included future international superstars Brianna Decker, Amanda Kessel, and Monique and Jocelyne Lamoureux.
As she progressed in college at Utica, Simer, who had often maintained a low key demeanor about her battle with cancer, began to see the increased value of telling her story to others to raise awareness on behalf of those who did not live long enough to tell their stories.
"After the years I spent in doctor's offices, and seeing all the other sick kids, I decided I needed to do everything I could to help them out," Simer said. "I needed to use my story to raise awareness and help out kids and their families affected by this disease."
When Simer's playing days concluded, those efforts intensified further. A crusade against the often-underrepresented disease that had once threatened her future began to take on a life of its own, with help from a few friends. In the fall of 2011, Utica College women's head coach Dave Clausen was looking for a fresher take on a charity hockey game. The team had participated along with the Pioneer men in the school's "Pink the Rink" fundraiser for several years, and while that was considered a productive event for the program, Clausen went in search of something that the Pioneer women could truly call their own.
He didn't have to look far in the long run.
"We've always been trying to give back at Utica College and be part of the local community," Clausen said. "We did Pink the Rink for a couple of years… I don't want to say it was overdone, because it's such a positive thing for charity, but it had grown a bit stale with our players. We were kicking the tires on some new ideas, and nothing immediately came up. I was having a conversation with Laurel one day, who had a little bit of a fundraiser for childhood cancer four years ago, and I said to myself "This is it. How can we do this with hockey?"
With that conversation, a new tradition was born. The following season, the Pioneers were to debut the Gold Ribbon game for childhood cancer, a fundraiser that includes an annual game-worn jersey auction.
While Clausen and the Pioneers found a cause to support with relative ease, finding a beneficiary charity was an equally expeditious process. In fact, they went no further than to their own backyard, to an organization founded and run by a father and son tandem of former Division III head coaches with close ties to the Utica area.
The Shawn Grady fund was established in 1991 by longtime Hamilton College head coach Phil Grady and his family in memory of his son, Shawn, who had lost a two-year-long battle with cancer at age 16, Throughout the young Grady's struggle, countless families in the Clinton, NY area had pitched in to help defray the family's tremendously high medical costs. Shawn's brother, Brian, attended college with Clausen and Utica men's head coach Gary Heenan, and later went on to become head coach at Morrisville State, a position he held until the fall of 2012.
As the inaugural gold ribbon game, a February 2013 non-conference game with ECAC West rival SUNY Cortland, approached, Clausen and the Pioneers, many of whom had played with Simer when she was a junior and senior, knew little of the long-term life the event was about to take on.
"Originally, I thought we'd just do it once as something a bit different," Clausen said.
The Pioneers defeated the Red Dragons 5-2 in the first edition of the gold ribbon game, with the charity jersey auction raising $2,010 for the Grady fund. Within 24 hours, the on and off ice success of that February afternoon had Clausen setting his sights on increasing the event's footprint for the following season.
In an effort to increase the event's visibility in the community, the Pioneers left the confines of the Utica Memorial Auditorium to return to the roots of the Grady Fund's existence. The historic Clinton Arena is where the younger Gradys cut their hockey teeth from childhood through high school. With Hamilton College, an institution well-connected to the event's roots, in agreement to be the opponent while wearing their own set of fundraising jerseys, the second gold Ribbon Game set the standard for the event to become an annual tradition, with a record $3,979 raised.
After a successful third year that saw more money get raised per jersey than the previous two editions of the event, Simer harbors great expectations as the Pioneers get set to go gold for a fourth consecutive year, with hopes that other institutions will adopt the cause, and that Utica's event will someday rival the magnitude of the Utica men's hockey program's signature charity event.
"I just hope that every year this event gets bigger and better," Simer said. "Our men's team has had so much success with the Teddy bear Toss, I hope that one day this is event is similar in magnitude to that. When the teddy bear toss first started out, they got 400 bears and 1,500 people. Now, it has sold out the last four years and they get around 4,000 bears a year. It takes time, but I think we're moving in the right direction."
This season's edition of the Gold Ribbon Game, the fifth, will take place on Friday, January 29th, 2016, as Utica College plays Neumann in an ECAC West contest.