How Adelphi's Blakely Murphy Battled Brain Tumors And Came Back Stronger

Through everything, including two brain surgeries starting at age 11, Adelphi's Blakely Murphy has found peace on the volleyball court. Brian Ballweg

Imagine being told you have a brain tumor.

You're 11 years old.

Imagine being awake while surgeons drill inside your head to remove it.

You recover, only to hear these same words four years later: "You have a brain tumor."

Imagine you never met your father because he died of a brain tumor.

If you're Blakely Murphy, you've lived this story, and instead of being scared, you're irritated when any of that gets in the way of a life that combines high achieving academics with a passion for athletics, specifically volleyball.

"I'm living proof you can come out of brain surgery better than when you went in, and it is possible to be successful without any deficits," the Adelphi University freshman said from her dorm room at the small liberal arts college in Garden City, New York, a 45-minute train ride from Manhattan.

You can only imagine how much wearing No. 8 for the Division II Panthers means for the decorated outside hitter, graduate of Smithtown (New York) East High with a 4.1 GPA.

One of a kind

"I know how my head feels because it is obviously MY HEAD and not anyone else's. I know that you have been in neurosurgery for however many years and I find that to be a big accomplishment, but even you, yourself said that never in all your years have you seen anyone like me."

Eleven-year-old Murphy typed those words to neurosurgeon Steven Schneider, who chuckles at the memory of emails and texts like that one received at random hours from his patient, berating him for failing to clear her fast enough for sports after brain surgery.

"Blakely's a very unique young lady," said the co-chief of pediatric neurosurgery at Long Island Jewish/Cohen's Children's Medical Center in Long Island. "You could say she's precocious, but I didn't find her precocious. I found her mature and a well-balanced child who took this task head on."

Today, juggling a full plate of classes with collegiate volleyball, Murphy concedes, "I didn't understand a lot of things back then, like how long it would take the brain to heal. All I knew was I spent 99 percent of my time playing sports, and I was frustrated when I couldn't."

Murphy grew up embracing everything from a gym class to recreational basketball to what became much more than a game to her -- volleyball.

"There have been several instances where I've felt the need to retreat from everything," Murphy wrote in a high school essay. "Volleyball would always be my escape. As soon as I step on the court, everything goes blank. I feel powerful in mind and body and a serene feeling encases my state of being."

Blakely's father, Brian, was also an athlete. He was captain of the football team at Brown, where today a scholarship is established in his name. His wife, Dawn, said that much like Blakely, he was relentlessly active, unwilling to let anything slow him down.

When they had been married two months, Dawn Murphy wasn't surprised when Brian dismissed the prospect of anything serious being wrong after headaches became a daily occurrence for him.

"He was the strongest person physically that I ever met," Dawn said. "He was built like a monster, always playing in some baseball league or basketball after college. He was never sick, not even a cold, so there was no indication of what was to come."

Initial blood work showed nothing. Then a charley horse in Brian's right leg lingered. A limp developed, and finally Brian visited a neurologist, who ordered an MRI. Multiple sclerosis maybe, the Murphys were told, yet IV steroids had zero effect.

Then Brian woke up Dawn in the middle of the night.

"I can't move," he told her.

A trip to Memorial Sloane-Kettering confirmed the worst. Brian had inoperable brain cancer.

Brian Murphy was 31 when he died on May 14, 1997. Blakely was born 13 weeks later, on Aug. 19.

"I was probably the most shocked of all when he died and I know that sounds silly," Dawn said. "But somehow I thought if anyone could, he'd find a way to beat it."

Blakely doesn't remember a time when she didn't know about her father, with whom she shares many characteristics, including an intense love for athletics and an intrinsic stubbornness when a roadblock gets in the way of that.

"I was always curious about him because I had heard what a great person he was," she said. Her wallet holds a card he wrote to Dawn reading, "Keep the faith and just keep smiling."

"I always wished I could meet him."

Scary case of déjà vu

On Valentine's Day in 2009, Dawn sat in the stands watching Blakely play basketball in their Smithtown, New York, hometown.

At one point, Blakely abruptly beelined toward the sideline. Dawn sensed something amiss, hurried toward the bench and watched her daughter's mouth twitch, drool dripping onto her uniform. She recognized instantly what was happening.

"I knew it was a brain seizure," she said. "When I saw her face, it was the same way her dad had seizures. It was spooky."

The seizure ended as quickly as it started. Not wanting to alarm Blakely, Dawn actually let her return to the game, and over ice cream afterward, casually asked if anything like that had ever happened before.

"Yes," was Blakely's nonchalant response.

Stunned, Dawn listened as Blakely described years of charting unusual activity dating back to fourth grade. Nothing had ever happened during sports, but sometimes she had a bad taste in her mouth; her lips occasionally tingled. Once, she said, she could see her pencil but was unable to pick it up.

Blakely thought none of it was a big deal, and she never imagined she was having seizures.

"When you think of seizures, you think of 'Grandma's on the floor.' Most of the time it was pins and needles," she said. "Then I started getting the twitch in my mouth with the pins and needles in my hand. That's what happened in the basketball game."

As with Brian, initial tests were inconclusive, but Dawn pressed for an MRI, which revealed Blakely had a tumor in the primary motor and language strip of her brain -- the Times Square of the central nervous system.

"It was in the same spot as her father's," said Dawn, who got an early peek at the films. "But it looked different. I had learned if it's a wormlike structure, that usually means it's cancerous, whereas if it's round, it tends to be better. I knew she had a brain tumor, though."

A neurologist confirmed Dawn's conclusion the next morning.

Blakely was almost relieved to have a definitive diagnosis, though all of it embarrassed her. She didn't want anyone knowing that at 11 years old, she was a candidate for brain surgery.

"I thought my friends would look at me differently," she said. "I guess that was my way of pretending the whole thing wasn't happening. I just wanted my life to resume the way it was before."

Schneider, one of numerous surgeons consulted, explained candidly what could go wrong during surgery -- paralysis, speech problems, vision loss. "We were told horrific things," Dawn remembered. The best way to minimize the deficits was by Blakely undergoing surgery awake, something no surgeon was willing to take on except for Schneider.

"She wasn't just any 11-year-old," he said. "She had to buy in. She had to participate and welcome the experience. She did that. She's one of the youngest patients I had ever done awake; there are many adults I couldn't operate on awake."

"There were risks, great risks, with being awake and being asleep," Blakely explained. "But having a lot more risks that could happen from being asleep, I knew that wasn't an option for me. I knew it would be scary to be awake during surgery, but I knew that's what I had to do to have the best result possible."

Blakely remembers pieces of the 6 1/2-hour procedure on March 19, 2009, particularly the banter that kept her alert and adept at responding to prompts: "We were talking about my favorite shows, Obama, school, and Dr. Schneider would ask me to move my hand or make a fist. If he would touch the spot on the motor strip where the tumor was, I remember not being able to clench my fist."

Schneider emerged from the operating room with his own fist pump, a reassuring sign to Dawn. "I remember him saying she was a star and did everything she was supposed to do," Dawn said.

After six days, Blakely returned to sixth grade, her arm in a sling. The arm was fine, but she didn't want her friends fishing for what was wrong. But her normally perfect grades slipped in the months ahead as she struggled to organize her thoughts. Her right hand weak, she couldn't draw. And unbeknownst to her mother, she hassled Schneider by text and in emails because of his refusal to clear her for recreational basketball.

"After this email, do not take me for a stubborn, know-it-all bitch. Everyone takes about 100 risks a day, (as we learned in science) I feel that the small risk you are taking with me not playing sports again is stupid. Wake up and realize that I am not in the WNBA yet. I am playing with 10 and 11 year old GIRLS! Boys are soooo much more aggressive. And I mean what is the worst that is going to happen to me I get hit in the head with a basketball??? What is that going to do... make my head hurt a little like it has in the past when I got hit with a ball. Get real!!!!!!!"

Schneider cleared Blakely that summer with understanding from her mother that some risk remained.

"She became happy again, doing the things she loved to do," Dawn said.

Brain tumor, Round 2

Almost two years passed before Blakely felt completely well, returning to basketball and volleyball and ready to tackle the AP classes at Smithtown East High.

All was normal for nearly four years. The occasional tingling, she was told, stemmed from scar tissue. But when her mouth twitched over Christmas break, she knew the seizures had returned.

She dismissed the symptoms, but Dawn didn't. When Blakely got unusually sick in April, Dawn pushed for an MRI. Schneider called Dawn with news of another brain tumor on a Sunday night.

Dawn waited until the next morning to tell Blakely, who was enjoying a bowl of cereal in front of the TV before school. Both recollect this conversation word for word.

"We got the MRI results back."

Blakely never looked up. "When did you get them?"

"Last night."

"I have another tumor, don't I?" Blakely asked, her eyes never leaving her show.

Although the tumor was in the exact same area as the first one, this time it was embedded deeper in the brain.

"Really? Again?" Blakely disgustedly thought to herself. But what wasn't going to happen again -- and she was adamant -- was another years-long recovery that derailed so much of what she wanted to do athletically and academically.

Blakely was a sophomore in high school, captain of her Academy Volleyball club team with regionals approaching. When her mother told her they were going to schedule surgery, her response?

"Absolutely not," she recalled telling her mother. "Either you call up Dr. Schneider right now or I'm going to. There's got to be another way."

There was, but it was new, so progressive that Schneider had not performed the procedure on a patient. He had just returned from Canada, where he had been trained in what is called NICO BrainPath. The minimally invasive surgical technique for removing growths rooted deeply in the brain without disturbing any of the critical nearby structures did not exist when Blakely was 11.

"I haven't used it on any patients," Schneider told Dawn. "She would be my first."

"I was anxious, of course," Dawn said. "But Dr. Schneider said he would stack the deck for her so it would be the best possible scenario."

One more time, the odds were best if Blakely would agree to be awake. Of course, she said, adding her own condition: "But you're not shaving my head."

Schneider agreed to leave untouched her thick, dirty-blond mane with hints of red that reached well beyond her shoulders. He only needed to work through an opening the size of a dime.

The second surgery lasted 10 hours. Blakely watched her own brain on a big-screen monitor much of the time. She answered questions about high school. She clenched her fist when prompted. She actually began to feel pressure from the drilling in her head and requested more pain medicine.

"She sailed through the procedure," said Schneider, who sees no genetic connection between Blakely's tumors and her father's. "She had a goal. She wanted to get back to the court as quickly as possible."

Blakely was exhausted afterward. But 23 hours later, she was home, feeling close to 100 percent.

"My head was sore," she said, "but I didn't feel nauseous like the first time. There was no pain."

The surgery was on a Wednesday. Blakely felt well enough to attend Thursday night's volleyball practice, as a spectator. On Friday, she went to the movies. By the weekend, Blakely was in New Jersey, watching Academy compete. Dawn didn't tell her, but Schneider actually cleared Blakely to play. Dawn, though, wasn't ready for that yet.

"My mom was a little conservative," Murphy lamented.

Blakely returned to her team two weeks after surgery. Essentially, she hasn't stopped playing since, and explored colleges that would allow her to play volleyball and flourish academically. Her grades made her an attractive candidate for an Ivy League education, but visits to Columbia and her dad's alma mater, Brown, left her unfulfilled. In ninth grade, she had attended a camp at Adelphi.

"After I visited here, I canceled all my other ones because I knew this was the place for me," said the clinical psychology major, who plans a career working with the mentally ill. "I wanted that feeling that when you step on campus you belong. That's what I immediately felt after my visit to Adelphi."

Changing the world

Today the teenager who was so remiss to share the details of brain surgery so many years ago is a spokeswoman, sought after not just for her personal story but because she is the lone patient who can compare traditional brain surgery with NICO BrainPath.

"Eventually I think BrainPath will become the standard," said Schneider, who estimates he's operated on more than 100 patients using that technique since. "I don't think twice about using it, but she was the first."

Blakely has a Facebook page as a patient advocate for BrainPath. She's appeared on "The Doctors," a syndicated show focusing on health and medicine. She was the keynote speaker for a Coalition for Imaging and Bioengineering Research conference in Washington, D.C., last May.

"The first time I wanted to pretend it wasn't real," she said. "The second time I knew I had to accept what was happening to move forward. Being the first one to compare and one of the first people to ever have BrainPath surgery, I want to help people going through the same thing as me. I want to share my story because I have the ability to do good for other people.

"I always knew I was meant to change the world and make a difference. This is a way I can do that."