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After 2 brain surgeries, student athlete shares hope

Blakely Murphy, 19, in a practice session at

Blakely Murphy, 19, in a practice session at Adelphi University in Garden City, underwent two different types of surgery for benign brain tumors, and speaks to groups about her experience. Credit: Brian Ballweg

Collegian Blakely Murphy stood on stage at Adelphi University last year and talked candidly about a topic that her 11-year-old self had kept a closely guarded secret.

“You may not be able to tell this by looking at me,” she told the crowd at the school’s annual scholarship reception, “but I am a two-time brain tumor survivor.”

There was no such discussion in 2009. Murphy had missed a week of middle school after her first surgery and was prohibited from playing sports or participating in gym class. She wore a sling and pretended to have an arm injury so when classmates asked why she wasn’t playing she could point to her arm, hide the truth and escape reality. She wanted no one to know that she had undergone nearly seven hours of surgery — while awake — to remove a brain tumor.

“I was very secretive because I thought that people would look at me differently,” said Murphy, 19, a St. James resident and former member of Adelphi’s volleyball team. “I wanted people to look at me the same. I wanted to pretend that it wasn’t actually happening.”

Murphy’s first brain surgery was a conventional procedure, but the second operation was an innovative surgery using technology called BrainPath, a tool made by NICO Corporation which allows minimally invasive access in the subcortical part of the brain through natural folds and fibers.

Murphy has since talked about her surgical experiences on national television, in YouTube videos and as a keynote speaker before members of Congress, all with the objective of raising awareness of innovative alternatives and advanced technologies that offer minimally invasive neurosurgery options, and inspiring hope.

“I want to make people believe that there is always hope, even in situations where it doesn’t look like there is much,” Murphy said.

More than a seizure

It was apparent early on that Murphy was gifted academically, said her mother, Dawn Murphy, an attorney in Smithtown. She recalled her daughter writing in cursive before most children her age could write at all. She was in enrichment classes in school and got nearly perfect grades.

Murphy also excelled in athletics, particularly basketball and volleyball.

In 2009, during a Valentine’s Day basketball game with her youth travel team, Murphy, then 11, walked straight to the bench as her teammates began to run down the court. She said she remembers feeling like “something was off and not normal.” Her mouth had begun to twitch uncontrollably. She tried to drink water, but it dribbled from her mouth to the floor. When Murphy’s mother rushed from the stands and saw her daughter’s face, she knew she was having a seizure — but that it could be something more serious. She had seen it before with her husband.

Murphy never met her father, Brian Murphy, who grew up in Little Neck, Queens. Like his daughter, he excelled both academically and athletically. He was an engineer before becoming a lawyer, and was captain of the football team in high school and at Brown University. He died in May 1997 at the age of 31 from glioblastoma multiforme, an aggressive and invasive form of brain cancer. At the time, Dawn Murphy was six months pregnant with Blakely.

“It was my worst nightmare coming true,” Dawn Murphy said, recalling that day in 2009. “But had I not gone through everything I did with Brian, I never would have been able to ask the right questions and navigate through the process to find the best-case scenario to help Blakely.”

She consulted with neurosurgeons across the country and was informed that, because of the sensitive location of the tumor in the primary motor strip of the brain that controls movement and speech, performing the surgery while her daughter was awake was best to reduce the risk of deficiencies. Since Murphy was only 11, many surgeons believed she was too young to meaningfully participate in the process and refused to perform the surgery.

Steven Schneider, co-chief of pediatric neurosurgery at Cohen Children’s Medical Center in New Hyde Park, disagreed. He said it was her best option and was willing to perform the craniotomy while Murphy was awake.

“She was mature enough,” Schneider said. “We always have the ability to abort the operation. If she’s awake and she’s not tolerating it, we could stop and put her under general anesthesia if we have to. But the information that we gain when a patient is awake is invaluable.”

By being able to communicate with Murphy during the 6 1⁄2-hour procedure, Schneider could determine whether any speech or motor functions of the brain were being affected. Murphy remembers being instructed to move her hands and feet during the procedure, and being asked about her favorite television shows.

The tumor, which Schneider said had no clear genetic link or definitive cause, was benign, and Murphy spent five days in the hospital before returning home. She vomited often, slept a lot, and didn’t talk much. Post-surgery she had trouble holding a pen and silverware. She returned to school six days after the operation.

Murphy’s grades uncharacteristically began to slip. Her daughter had always been a straight-A student who was very focused and driven to do well, Dawn Murphy said, but her discovery of a crumpled-up test that Murphy had failed, and an online check of her grades revealed that Murphy had failed multiple tests and homework assignments.

“It was very difficult because I was so young and I didn’t understand that I wasn’t going to be fully back to normal right away,” said Murphy. “I didn’t fully grasp the concept that it was going to physically take time to heal and to mentally get back into things.”

Murphy said it took two years after the surgery before she felt fully recovered and a sense of normalcy.

In March 2013, while at home about 1 a.m., Murphy had another seizure, during which she lost consciousness, stopped breathing and was rushed by ambulance to Stony Brook University Hospital. MRIs revealed that Murphy had another brain tumor and would need more surgery.

“I was like, ‘I can’t believe this is happening again,’ ” Murphy said. “I was a different person after that first surgery. There had to be another way.”

A deeper tumor

Murphy was told that the new tumor was in the same location of the brain but deeper. She insisted that Schneider find a new surgical approach.

Schneider opted for BrainPath, a tool about the diameter of a dime that creates access in a minimally invasive way to tumors deep in the brain. The tubelike device — which came out in 2012 and wasn’t available for Murphy’s first neurosurgery — is inserted between the natural folds of the brain, which is far less traumatic and damaging to healthy brain tissue than conventional surgery. It forms a narrow corridor for the surgeon to work through in conjunction with the use of enhanced imaging and navigation.

“By being able to identify those [critical structure] areas, and preserve the vital ones, we can accomplish a very radical operation in a very delicate area,” Schneider said.

Murphy agreed to the procedure under the condition that she first could compete in a volleyball tournament with her traveling team. She continued attending practice, her teammates unaware of her situation. When Murphy got sick one day and had to leave practice early, she told her coach it was because of her grandmother’s meatballs. Murphy played in the tournament and helped the team advance to regionals.

“She made the situation seem light,” said Long Island Volleyball Academy coach Sarah Joy. “It’s like she put a strong face on so nobody else would be worried.”

Murphy underwent the 10 1⁄2-hour surgery in April 2013 to remove the tumor, which was benign. She was released from the hospital 23 hours after the procedure and returned to the volleyball court for competitive play two weeks after surgery.

“The first and second surgery were like night and day,” Murphy said. “There was no drop-off in any aspect of my life at all after the second surgery.”

Academically, Murphy graduated with a cumulative  GPA of 4.1. Athletically, she helped guide the Smithtown East girls’ volleyball team to a Suffolk County championship in 2013 and a league championship in 2014.

“I had so many doctors telling me that I’d never play any sport ever again,” Murphy said. “But I knew I was going to do whatever it took. I had dreams and goals to achieve.”

Murphy, a psychology major, earned a 4.0 GPA her freshman year at Adelphi. She was also a member of the university’s women’s volleyball team, which won the Northeast-10 conference championship. She elected not to return to the school team her sophomore year in order to focus on academics, internships and advocacy work. She competes weekly in beach and indoor leagues, and this fall was the assistant coach for the girls’ volleyball team at Elwood-John Glenn High School in Elwood.

Murphy’s resilience and determination made her a natural selection to speak to students, donors and faculty at Adelphi’s scholarship reception, said Adelphi President Christine Riordan.

“Her level of passion and her level of courage were just remarkable, in my opinion,” Riordan said. “Even the most difficult and daunting of obstacles can be overcome, and she was living proof of that.”

Murphy is a nonpaid public advocate for BrainPath, has appeared on the syndicated television talk show “The Doctors” and has twice been the keynote speaker at medical showcases in Washington, D.C., on behalf of the Coalition for Imaging and Bioengineering Research group.

She views each chance to share her story as an opportunity to inspire others to overcome their obstacles.

“I know there are so many people, kids especially, that are in the same position I was in,” Murphy said. “I want to be able to show them that I had two surgeries and I am the person that I am today. I’m reaching my goals and living the life I had always planned and imagined.”

Minimally invasive brain surgery

Blakely Murphy is recognized by NICO Corporation as the first patient in the world who can compare conventional brain surgery with a procedure using BrainPath technology.

The Indianapolis-based medical device company developed BrainPath, an access technology that became commercially available in 2012. BrainPath, which Sue Goin, the communications director for NICO Corporation, said has been used in more than 5,000 surgeries, allows minimally invasive access in the subcortical part of the brain through natural folds and fibers.

“Think of it like broccoli or cauliflower; they’re the florets that do all the processing,” said Steven Schneider, co-chief of pediatric neurosurgery at Cohen Children’s Medical Center in New Hyde Park, who performed both of Murphy’s operations. “We put a tube between the folds without causing damage, and once underneath, we can go right to the area.”

According to NICO’s website, when using BrainPath, surgeons are not required to cut through the brain’s white matter, tissue that is responsible for many cognitive and functional responses. A plastic sheath surrounds a cylindrical tool with a pointed tip that enters the brain through an opening the size of a dime and displaces tissue as opposed to cutting through it. When the cylinder is removed, the sheath remains, creating a narrow corridor for surgeons to reach the abnormality, along with the use of high-definition scopes and navigational systems.

Goin said more than 400 neurosurgeons have been trained in the technology and that BrainPath has been cleared by the Food and Drug Administration for primary and secondary tumors, vascular abnormalities and secondary bleeds.

— Michael Gavin

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