9 minute read
The Survivor
As a child, Laurel Simer ’11 was diagnosed with a potentially-fatal brain tumor and given just a few months to live. Today, UC’s assistant sports information director is happy, healthy, and determined to make the most of her second chance.
It’s hard to tell Laurel Simer’s story without reverting to cliché.
She’s beating the odds. She’s a medical miracle. She has defied all expectations.
Cliché, but also true.
At age 10, Simer was diagnosed with DIPG, a rare and fatal type of brain tumor. Doctors estimated she wouldn’t live another year, even with treatment. Today, almost 20 years later, Simer, a UC alumna, former ice hockey player, and now the College’s assistant sports information director, is most certainly alive—and acutely aware of just how unlikely her path has been.
The Devastating Diagnosis
It started with a bump on the head. It was the summer of 1999, and Simer and her older brother were goofing around in the bouncy house at their school’s carnival. She fell, smacking her head on her brother’s knee. Once the swelling went down, Simer and her parents thought nothing of it. But severe headaches soon followed, and lasted for days. Her school nurse noticed that the pupil in one eye was dilated—a telltale sign of a concussion—and suggested she see a doctor.
That day, Simer, her mom, and a family friend visited St. Paul Children’s Hospital, an hour’s drive away from their home in Fairbault, Minnesota. She got an MRI (her first ever) and was examined by a neurologist. After reviewing the results, the doctor took Laurel’s mom, Cyndy, into a private office, while Laurel returned to the waiting room with her friend. As they waited, she remembers feeling confused and a little scared, but mostly anxious to get back home for soccer practice.
In the doctor’s office, Simer’s mom was living every parent’s worst nightmare. Laurel had a brain tumor the size of a lemon, the doctor said; a diffuse intrinsic pontine glioma (DIPG), among the most aggressive and rarest forms of brain cancer. There’s no treatment that has proven effective, and the statistics were mind-numbingly grim: Only 10 percent of children diagnosed with DIPG survive more than two years. The median survival time from diagnosis is less than nine months. Without treatment, the doctor said, Laurel wouldn’t live six months.
The rest, says Simer, was a blur. Her mom emerged from the office in tears, and her dad, Peter, rushed home from work to be by his daughter’s side. Within days, her parents, shell-shocked but determined, began to explore treatment options. Doctors had recommended the standard cancer arsenal of radiation and chemotherapy. But as Simer’s parents learned about the dismal outcomes and side effects, they reconsidered. One doctor warned that a single round of radiation would drop Laurel’s IQ 50 points. Another dismissed their concerns about the long-term side effects altogether, explaining that “with DIPG, there is no ‘longterm.’”
Cyndy and Peter were desperate to find another way.
“My dad took a month off work just to research different treatment options,” Simer says. “He talked to over 100 doctors to learn as much as he could.”
What he found was a unique clinical trial that involved the anti-acne drug Accutane. In the early 1990s, scientists at UCLA discovered that Accutane, which works as a skin medication by altering chemical signals, also targets the specific chemical signals that go awry in glioma cancer cells, limiting tumor growth and prolonging patient survival.
Her parents discussed the experimental treatment with Simer’s new doctor who, unlike other oncologists she’d seen, “was open-minded to trying new things.” They decided to move forward.
The treatment required Simer to take 50 times the normal dosage of Accutane prescribed to an adult—27 pills per day—and wasn’t without its own side effects. Simer remembers painful bleeding from her ears and nose. She continued the Accutane for 21 months.
By her 12th birthday, Simer’s MRIs revealed no tumor growth; more than two years later, her scans were “carbon copies” of the images taken at her initial diagnosis. It was an astonishing result for DIPG, a notoriously fast-growing cancer.
Even more astonishing: The tumor hasn’t grown since. Simer visits the National Cancer Institute in Washington, D.C. once a year and, so far, hasn’t needed any additional treatment. She has remained stable—and by all accounts, healthy— since 2001.
Still, Simer’s doctors are careful not to attribute her tumor’s stability to the Accutane regimen, which hasn’t produced reliable results in clinical trials and is still being researched.
“What works for one kid might not work for another,” Simer says. “That’s what makes DIPG so challenging.”
A Future on Ice
Ice hockey was always part of Laurel Simer’s life as a kid growing up in Minnesota. She first remembers being on skates at four years old, when her older brothers relegated her to the position of goalie in their backyard rink. She loved the game, and went on to play both forward and goalie in the local youth league.
“That was the thing that worried me most when I was diagnosed,” she says. “I didn’t want to stop playing hockey.”
And despite a brief hiatus during her treatment, she hasn’t.
“My doctors and my parents always said, ‘if you feel OK, you can play,’” says Simer. Hockey, her parents knew, was an important part of maintaining normalcy in their daughter’s life, which could have easily been derailed and defined by her cancer.
“My parents did everything to help me have a normal childhood.”
Simer went on to play goalie at Shattuck-Saint Mary’s, a boarding school in Minnesota known for its ice hockey program. In fact, the school’s Wikipedia page denotes its reputation as “the Hogwarts of Hockey,” with dozens of alumni going on to play for the NHL.
Collegiate hockey, says Simer, was her next big goal. In the spring of her senior year of high school, her coach at Shattuck-St. Mary’s introduced her to Dave Clausen, the head women’s ice hockey coach at Utica College. Thanks to her brothers, who had both attended college in central New York, Simer was familiar with the area, and liked the idea of heading northeast to play for UC’s Division III team.
Clausen remembers meeting Simer for the first time.
“Laurel just brings a good vibe when she enters a room,” he says. “She was pleasant, intelligent, and I knew she’d be a good fit at UC.” Clausen offered her a spot on his team, and Simer played goaltender as a Pioneer from 2007-2011. But more than her skills on the ice, Clausen recalls Simer’s ability to bring the team together—especially after tough losses.
“As a coach, you want someone like Laurel on your team. She has this positive attitude that makes everyone else want to be there,” he says. “She was the concrete that held the bricks together.”
Initially unaware of Simer’s diagnosis, Clausen said he learned her story “piece by piece. Laurel is not the type of person to want a dramatic, sit-down conversation about her health,” he says. “But when I learned she had this cancer and her life expectancy was so short, things clicked. You realize why she’s so positive, how she’s overcome these obstacles, and you appreciate her that much more.”
At home between the posts, a young Simer (far left) strikes a pose with her brothers in Minnesota.
Celebrating a UC victory with teammates in 2010
The Dream Job
Off the ice, Simer was finding her niche in the classroom. She hadn’t declared a major when she enrolled at UC, but classes with public relations professor Paul MacArthur helped her discover a passion for sports journalism—a natural fit for the lifelong athlete and talented writer.
“When I started studying sports communication, it was the first time in my life that I looked forward to going to class,” she says, laughing.
She declared a public relations major with a sports communication concentration, and in her senior year, scored an internship in UC’s sports information department, working closely with Sports Information Director Gil Burgmaster. She kept stats, wrote about teams, organized media interviews, and helped manage the department’s website and social media.
“I loved it right away,” she says. “I didn’t realize until then that sports information could be a career option for me.”
As her supervisor, Burgmaster was impressed.
“We had a lot of interns in my office at the time, but Laurel stood out as someone who was really driven,” he says. “She worked hard and caught on quickly. I knew I could send her off to games and she could cover them by herself.”
By December 2011, Simer completed her internship and graduated from UC. And though she was sad to leave Utica, she headed back to Minneapolis to start job-hunting. Within a week, she got a phone call from Burgmaster, who had exciting news: He had been approved to hire a full-time assistant to help in his department.
Burgmaster thought she’d be a perfect fit for the job. Simer was thrilled, and packed up her bags once again for a trip back to Utica, where’s she lived and worked since 2012.
“Laurel has the perfect demeanor for this job,” says Burgmaster, now her supervisor and friend. “We deal with intense atmospheres, and she’s calm under pressure. Her life experiences have given her a better perspective than most people.”
Since 2012, Simer has managed the UC Pioneers’ web presence from her office in the Harold T. Clark Athletic Center.
Sharing Her Story
Despite her outgoing personality, Simer wasn’t always eager to talk about her cancer. In college, some of her closest friends and roommates knew her for years before they learned she had a brain tumor. When Simer found ways to slowly open up, she discovered a community of support among her teammates, coaches, and friends.
One friend, Marissa Vomer ’14, was so inspired by Simer’s story that she started a social media campaign to get her friend featured on The Ellen DeGeneres Show in 2013. The hashtag “#GetLaurelonEllen” generated hundreds of Tweets from Simer’s friends in the UC community and beyond. Though DeGeneres never extended an invite (not yet, at least), Simer said she was touched by how her UC family rallied around her, and the experience has encouraged her to speak out more.
“Everyone at UC was incredibly supportive. It was a good feeling to have so many people behind me,” she says, even though she’s still not sure many of her UC friends grasp just how serious her diagnosis is—or how improbable it is that she’s still alive.
For Simer though, the fact of her unlikely survival is never far from her mind— especially during those yearly trips to the National Cancer Institute. Because DIPG is mainly a pediatric cancer, Simer, now 30, is monitored by an oncologist in the pediatric unit, where seeing parents and sick children brings her own survival into sharp focus. In hours spent in waiting rooms and labs, Simer finds herself making connections with these families and, sometimes, sharing her story.
“I try to tread carefully,” she says. And for good reason: To others diagnosed with DIPG, Simer’s story is a Rorschach test. She’s either a beacon of hope in a world of devastating statistics, or a reminder of just how unlikely it is that a DIPG child reaches adulthood at all.
“It weighs on me, because I wish there was some magic answer I could give them,” she says, knowing full well how hopeless the diagnosis can feel, and how her story doesn’t offer the cure DIPG parents so desperately want.
Instead, she’s committed to raising both awareness and funds for her type of cancer, which receives a relatively small percentage of the government funding allotted for pediatric cancer research. For years, she has quietly contributed to DIPG charities online and participated in Facebook groups advocating for increased awareness. In 2011, encouraged by her teammates and Coach Clausen, Simer helped organize the first Utica College Gold Ribbon Game, an annual fundraiser hosted by the UC women’s ice hockey team at one home game each season. Donations and proceeds from auctions and raffles benefit local children with cancer and help ease the financial burden for their families. Now in its 8th year, the event has raised nearly 30,000 dollars.
These efforts, Simer explains, help combat the dark and fearful places her mind can go when she prepares for her annual MRI, or feels the visceral gut punch of learning that another DIPG child and friend has passed away.
But, true to form, Laurel Simer does her best to remain positive.
In September 2018, in a Facebook post commemorating the 19th anniversary of her diagnosis, she shared something her family, friends, coworkers, and teammates already know:
“I was given a second chance at life,” she wrote. “And I intend to use it to help others.”
