Jaclyn Murphy defeated the beast eight years ago.
When a precautionary CAT scan of her brain revealed a tumor on her cerebellum called a medulloblastoma, she underwent an operation to remove it. The operation was successful, but her recovery wasn’t easy.
Jaclyn grew up in a small town about two hours from New York City and was only 9 years old when she was diagnosed. She followed a grueling regimen of chemotherapy to destroy whatever remained of the cancer and radiation therapy to keep it away for good. The recovery process caused her hair to fall out, stunted her growth, damaged her hearing and eyesight and diminished her coordination so badly, she needed to relearn to walk. All of this came with a 60 percent chance of survival.
Yet what made Jaclyn’s story remarkable are the ones who fought with her: the Northwestern women’s lacrosse team.
Alongside a loving family and the seasoned doctors of Memorial Sloan-Kettering Cancer Center, the team and Coach Kelly Amonte Hiller adopted Jaclyn as one of their own, thanks to several twists of fate. When the Murphys realized the impact the Wildcats had on their daughter’s victory and recovery—and in turn, the life-changing one the team says Jaclyn had on them—they embarked on a journey to find a team for every child in the United States with a brain tumor. The Murphys knew their experience could be replicated across the country for children who may never live to their teenage years and for student-athletes who focus only on the field, the classroom and their social lives.
It’s a journey inspired by a girl wise beyond her years, a family devoted beyond restraint, an organization working beyond its means and a team that found inspiration and perspective in a little girl, all fighting together for love beyond the clutches of the beast.
“I was a tomboy, and sports were my life.”
Sixty miles north of Manhattan Island and nestled in the heart of New York’s Hudson River Valley rests Hopewell Junction and its 376 residents. This is the place Jaclyn Murphy calls home.
Born on Sept. 28, 1994, Jaclyn is a self-proclaimed “tomboy” who loved playing soccer. Highly active and incredibly skilled, she took to the sport quickly and flourished. But when she was 9, another sport caught her fourth grade eye: lacrosse.
“I grew up around it,” Jaclyn says, citing the influence of her cousins and the prevalence of the sport in New York. “I just wanted to start pick-up because it was a fun and interesting thing to play and I was a really good soccer player when I was little. So why not put a stick in the hand and see how it goes?”
Lacrosse came as naturally to Jaclyn as soccer had. Though the sport was popular in most of New York, it was relatively new to Hopewell Junction, and Jaclyn’s only option was a local clinic hosted by Matt Cameron, who was then an assistant coach for Major League Lacrosse’s Boston Cannons under head coach Scott Hiller. Jaclyn remembered being one of three girls in a group of 25 participants.
Jaclyn’s lacrosse experience soon halted, however, because of what appeared to be a persistent stomach bug. But it wasn’t a virus that was making Jaclyn sick: It was a brain tumor.
“We can’t tell you what we found over the phone.”
In late February 2004, Jaclyn spent two weeks throwing up every morning and feeling better later in the day. While Jaclyn’s parents, Denis and Lynda, waited for their daughter’s immune system to fight off what they thought was a stomach virus, they started to notice something was wrong.
It was March 19, Lynda remembers, when she first noticed the change in Jaclyn’s gait. Her feet dragged and her balance wavered, and Lynda was troubled by the lack of coordination afflicting her athletic daughter. That day, she took Jaclyn to the emergency room at Vassar Brothers Medical Center.
After ruling out Guillain-Barré syndrome, a rare nervous disorder that can paralyze its victims, the doctors at Vassar admitted Jaclyn. At first they insisted it was a persistent virus and then an eating disorder, promising the Murphys she could be released when she stopped throwing up.
“What nine-year-old has an eating disorder?” Jaclyn says. “I wanted to eat. I wanted to keep my food down.”
But she couldn’t, and the Murphys visited their pediatrician at home for a follow-up. The pediatrician ordered a CAT scan on March 26, 2004.
Later that evening, the Murphys received a phone call from a nurse.
“We can’t tell you what we found over the phone,” Lynda remembers the nurse saying. “We need you to come in.”
They had found a malignant brain tumor. More specifically, it was a medulloblastoma on the fourth ventricle of Jaclyn’s cerebellum, which had been causing the nausea and loss of balance.
Faced with the prospect of losing her daughter, Lynda’s mind went straight to what she could have done to prevent the cancer.
“You start thinking about, ‘Did I do something wrong as a mother?’ So many questions, so many emotions all at once,” she says. “And then you finally have to say to yourself, ‘Forget about the questions. This is what we have to deal with. We have to move forward now.’”
At the end of March, the surgeon removed close to 99 percent of the tumor, but the battle had just begun for Jaclyn and her family.
“Where heaven and hell meet.”
“I always say if you ever wonder when you’re walking around town or walking around campus, if you ever take a minute to think about the world and where heaven and hell are, heaven and hell meet on the ninth floor of Sloan-Kettering,” Denis says.
The ninth floor of Memorial Sloan-Kettering Cancer Center in New York City is the pediatric ward. One of the most prolific cancer hospitals in the world, Sloan-Kettering treats patients of all ages and cases of all severities.
“There are angels up there trying to help these children, doctors and nurses and all types of support people trying to help these children,” Denis says. “But then there’s also the beast trying to take their lives away. What we see up there is life-changing.”
After surgery, Jaclyn’s life drastically changed during recovery—for good and for bad. It began with six weeks of radiation to her head and spine to eradicate whatever remained of the tumor, followed by eight cycles of chemotherapy.
Not unlike the place where it was administered, cancer treatment itself is a combination of heaven and hell; heaven because it destroys the cancer, hell because it destroys the patient as well. Jaclyn dealt with several side effects: The radiation stunted her growth and slowed her cognitive ability, and the chemotherapy thinned her once thick brown hair, damaged the hearing in her right ear, made her gluten-intolerant and eliminated her appetite as she withered away to just 50 pounds.
“It was draining, tiring,” Jaclyn says. “It was eating my body away, and my parents couldn’t handle that.”
Along with the physical pain came emotional pain for Jaclyn. She missed almost half of fourth grade and all of fifth because of her treatments. She was unable to attend school in her weakened state, so a teacher visited to catch her up on coursework. Like many pediatric cancer patients, however, she was often socially isolated and lost her friends.
The emotional and physical burdens of Jaclyn’s treatment were too much for Denis and Lynda to handle. They stopped Jaclyn’s chemotherapy during the fifth week to salvage what was left of their daughter’s health.
The family used inspiring and soothing images to help Jaclyn through treatment, and as Jaclyn and her father walked through a hall in Memorial Sloan-Kettering plastered with pictures of athletes, Denis would always point to the photo of a group of young women from the University of Maryland’s women’s lacrosse team. Every time, he would say to Jaclyn, “One day you’re going to be healthy and you’ll be playing lacrosse again.”
One of the players in that picture is Kelly Amonte Hiller*, head coach of the Northwestern University women’s lacrosse team and wife of Scott Hiller, who oversaw the Boston Cannons with Jaclyn’s former coach Matt Cameron.
Cameron noticed how quickly she had picked up lacrosse, so much so that he felt disheartened when he learned that she hadn’t signed up to play the following year. That’s when he called the Murphys and found out that Jaclyn was preoccupied—not with another sport, hobby or activity, but with her battle against brain cancer.
When Cameron found out about Jaclyn’s sickness, he asked Scott Hiller if his wife’s team could do anything.
Around the same time, Denis’ brother Terrence Murphy, a chiropractor in their hometown of Yorktown Heights, N.Y., asked one his patients, Connie Venechanos, if her daughter could help out his sickly niece. Venechanos’s daughter, Alexis, was one of Amonte Hiller’s assistants at Northwestern.
Amonte Hiller and Venechanos eventually realized they were reaching out to the same girl. The coaches and their team then put together a care package with a get-well-soon card and signed media guide to send to Hopewell Junction.
“We knew this moment had changed our lives forever.”
Jaclyn received the package from the Northwestern women’s lacrosse team in 2005 while the squad was en route to an undefeated championship season. As her treatment wound down, Jaclyn started following the team. She used the media guide to scout players and upcoming matches, searching for one to attend.
She found the only relatively local game in April, but there was one problem: The game was against Johns Hopkins University in Baltimore, a five-hour drive away. Her parents were hesitant to travel so far, as she was still frail from treatment, but Jaclyn convinced Denis to let her meet the Wildcats.
Amonte Hiller invited Jaclyn to speak at the team’s pre-game dinner the night before. Until then, Jaclyn had never talked about her illness with anyone but family members and doctors.
Jaclyn and Denis opened up to the team about her diagnosis and difficulties, her symptoms and the side effects, and her long road to recovery. When Jaclyn’s story left the team speechless, both sides understood the full impact of the gesture.
“As Denis spoke, there was complete silence in the room, with everyone zoned-in and focused on this tragic yet heroic story,” Lindsay Owens (Comm ’07), a member of the team who became one of Jaclyn’s closest friends, writes in an email. “For a girl to go through so much at such a young age was unfair, unheard of and life changing.”
The players on the 2005 squad gained a new perspective and new purpose on and off the lacrosse field. The Wildcats had adopted Jaclyn.
Venechanos, who now coaches at Ohio State University, said the team’s focus shifted to not only winning a national title for Northwestern, but also winning every game along the way for Jaclyn.
On game day, the Wildcats wore shirts that sported Jaclyn’s motto: “Live in the moment, play in the moment.” They beat Johns Hopkins and every team afterward and won their first national title. Since the championship game against the University of Virginia was held in Annapolis, Md., Jaclyn could attend and celebrate on the field with her sisters.
But before confetti flew and championship rings were handed out (with one made especially for Jaclyn), the Wildcats called and texted Jaclyn on days she had treatment or M.R.I.’s, or whenever she wasn’t feeling well. They would leave her special messages on her CaringBridge website, a Facebook-like page for patients going through severe medical treatment.
Most importantly, they made her feel better.
“[They made] me feel somewhat normal and took my mind off of it,” Jaclyn says. “And then I started texting them ‘Good luck! Kick butt! I just got blood taken, you can give a little blood to this team.’ Pump up messages.”
On Christmas 2005, Jaclyn, who was still recovering from the effects of the tumor and treatment, felt too sick to open her presents. She stayed in bed until she got a call from Owens, which Jaclyn calls “the best Christmas gift I’ve ever gotten.”
“She would always call me when I was down,” Jaclyn says. “She was just a really great friend to me and she has a very special place in my heart. I feel like my best friends are the Northwestern girls because they were there for me … and they understand me.”
As for the Wildcats, they insist that Jaclyn did as much good for them, if not more, as they did for her.
Shannon Smith (WCAS ’12), the Wildcats’ all-time leading scorer who met Jaclyn in 2005 while being recruited by Amonte Hiller, felt the full force of Jaclyn’s story before even joining the team.
“I started crying when I first heard the story,” she says. “It was inspiring and it was truly incredible.”
Owens writes in an email that her relationship with Jaclyn gave her the mental toughness on the field to become an elite lacrosse player and the perspective off the field to appreciate her life.
“I can never thank Jaclyn enough for how much she has impacted my life,” Owens writes. “She has made me grow stronger mentally, made me more appreciative of all the things I have in life and [made me] cherish every moment. Jaclyn opened my eyes to life and what it’s really all about.”
Smith mirrors Owens’ sentiment.
“If I impacted Jaclyn the littlest bit, that would be an honor,” she says. “I think she completely turned my life upside down and impacted me in more ways than one, in ways that I can’t even describe to you.”
“We need to get this girl a team, Dad.”
Denis knew the influence the players had on Jaclyn, but he didn’t realize how much until Jaclyn made a peculiar request.
One day, Jaclyn sat in the ninth floor waiting room, texting the lacrosse team when a little girl sitting beside her asked why Jaclyn’s phone was constantly buzzing. Jaclyn matter-of-factly said she was texting her friends from Northwestern and returned to her phone.
“Here she is, sitting in the middle of hell,” Denis says. “Children running around with bald heads, IVs, crying on the pediatric floor, and she was oblivious to it all because the girls were communicating with her.”
After a doctor summoned in the little girl, Jaclyn turned to her father.
“We need to get that girl a team, Dad,” she said.
After two years of listening to his daughter tell him how happy the Wildcats made her, and the team members tell him how powerful she was to them, Denis decided he would replicate what Jaclyn had with the Wildcats for other kids and other teams.
“The [Northwestern] girls kept telling me they were getting more out of this than we were, and I couldn’t digest that or process it,” he says. “I would move mountains for what they were doing for Jaclyn. Because anything you do to see your daughter happy or smile is more priceless than any material object that you can ever think of.”
Just like Jaclyn gave the Wildcats a mission in 2005, she had now given her father one of his own: Give every pediatric brain tumor patient and family a college team to love and support them.
That’s when Denis started the Friends of Jaclyn Foundation in 2007.
“They’re not a mascot,” he explains. “They’re not there to go to a pizza party. They become a part of the team for as long as they live.”
Denis began by reaching out to families within the tightly-knit pediatric brain tumor community over listservs. He also contacted the support centers at cancer hospitals across the East Coast. Because of the Health Insurance Portability and Accountability Act, which limits the public use of personal health information, Denis often received scrutiny and dispassionate responses to his messages.
But through word-of-mouth contacts and seemingly endless meetings, Denis set the foundation upon which FOJ would grow to support more than 352 children in 42 states.
“The fact that the team is involved in these young girls’ and boys’ lives is a huge experience,” Venechanos says. “It’s tremendous. You can’t put into words what it means to the girls and the coaching staff just to be a part of that development for everybody. It’s special.”
“It took Denis a long time to realize how much effect the child has on some of the teams, how it impacts their lives,” Lynda says. “It’s life changing for them as well. It’s nothing you can learn about through a textbook or a school.”
As the momentum behind FOJ gathered, so did the media attention. Local newspapers and news stations flocked to cover adoptions, and the growing influence of the organization caught the eye of Pete Thamel, a sports writer for the New York Times. Thamel, who now contributes to Sports Illustrated, told Murphy that he lobbied for his May 2009 article about FOJ to appear on the front page of the Times’ sports section. The story eventually reached Chapman Downes, an HBO producer. Downes contacted the Murphys about doing a segment on FOJ that summer for the documentary show “Real Sports with Bryant Gumbel.”
FOJ was about to be hit with a storm—and they weren’t prepared.
“Live in the moment, play in the moment.”
The “Real Sports” special aired on July 21, 2009. The boom in attention and interest was so sudden and widespread that Denis is still sorting through emails from three and a half years ago.
“The response to that was like a tsunami,” Denis says. “We have over 1,200 teams that are waiting to adopt a child.”
Besides those teams, Denis says that each branch of the United States Armed Forces has contacted him, along with police departments, fire departments, models and even the Hooters franchise.
Though the storm has subsided somewhat, the pace at which FOJ is expanding is sometimes too much for Denis to handle. He never stops working, however, to keep up with the interest people around the country have shown and the ambition he has to touch as many lives as he can.
“I don’t come up for air,” he says. “I can’t think about it. I just keep going—probably too fast. I’ve got to slow down. It’s just too fast. There are too many children every single day. We’re understaffed, but it will come in time. It’s going to be a major organization one day and the benefit that these children receive is priceless.”
This benefit, he says, is what motivates him.
Tears well in his eyes as he says, “They shouldn’t have to go through this. I just turned fifty. I lived ten lifetimes compared to them. That’s what it is.”
But before he expands FOJ beyond the United States, Denis is working to strengthen the organization’s roots domestically. FOJ is headquartered in a small donated room in Colonial Terrace in Cortlandt Manor, N.Y.
The operators of the-mansion-turned-catering hall donated a rundown house Denis plans to remodel in the mold of The Ronald McDonald House in New York City. Children and their families will one day be able to stay at the FOJ house for easier access to New York City cancer centers.
FOJ’s mission also involves remembering the children, or “angels,” who were adopted by teams before they passed away. On Sept. 30 2012, the organization hosted the First Friends of Jaclyn Angel Walk at the Walkway Over Hudson State Park in Poughkeepsie, N.Y. The walk included a girls’ lacrosse clinic and a balloon release, with one balloon representing each of “Jaclyn’s Angels.” Each angel will also be commemorated in a memory garden at the Friends of Jaclyn house once it is complete.
While Denis says he isn’t formally qualified for non-profit work, he says he firmly believes that one day the efforts of FOJ will be as significant as wearing the pink breast cancer ribbon.
“I didn’t go to school for this, to go into the non-profit world, but there was something pulling me, driving me to do this,” he says. “I had to get these children teams. I had to get them teams.”
The Road Ahead
Jaclyn Murphy is now 18 years old and a freshman at Marist College in Poughkeepsie, N.Y. She’s majoring in sports communication and hopes one day to use her education to spread her namesake organization across the world, so children and teams can feel the same love and support she and the Wildcats felt for so many years. Because of the effects of radiation, she has an individual education plan that gives her more time to complete assignments when necessary, but, otherwise, she lives a typical collegiate life.
For many families fighting their own battles, Jaclyn serves as a symbol of hope. Chance connected her with the Wildcats, admiration strengthened her bond with the team and a love that started in Hopewell Junction, traveled to Evanston and Baltimore now reaches across the United States, connecting and uniting families and student-athletes.
But Jaclyn doesn’t dwell on her past. Although she says her journey has shaped her and made an incredible impact on her world, her eyes are focused on the present.
Sometimes the beast can’t be defeated. But for every moment that Jaclyn’s friends are living or playing, and not fighting, the beast is powerless.
That, after all, is the beauty of Friends of Jaclyn.
“I live by our motto,” she says. “‘Live in the moment, play in the moment.’ Take one day at a time.”
Disclaimer: Coach Amonte Hiller, and current Northwestern lacrosse players, was not cleared by Northwestern Athletic Communications to speak with NBN.