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Neuroblastoma

A Journey No Child Should Take

Mark Frontera’s cellphone wouldn’t stop ringing. It was Thursday afternoon, Oct. 11, 2012, and the engineer was in a meeting with a manager. Whoever it was on the other end could wait, so he sent the caller to voicemail.

A moment passed, and again it rang. He looked at the caller ID. It was Tara, his wife. He excused himself and answered. He could hear the panic as her voice trembled in hysterics.

The pediatrician called with the results of an ultrasound taken earlier that day, Tara told him. The two of them must get to Albany Medical Center, she said.  A pediatric oncologist needed to speak with them immediately.

“Nothing rattles your cage like a phone call like that,” says Frontera, the manager of the High Energy Physics Laboratory at GE’s Global Research Center in Niskayuna, N.Y.

With little else to go on, he rushed out of the building into a fall day and jumped into his Toyota Matrix. On the drive over, his head swam with what he might hear.

More than a month before, Frontera’s four-year-old son, Adam, had started to experience extreme pain when he walked. He woke up at night in agony because of the pain in  his stomach and bones. The family did their rounds with the doctors every week, hoping to find an answer to their boy’s unknown malady. At first, they thought it was the flu. Then they questioned whether Adam suffered from food allergies. The Fronteras grew more and more frustrated, finally compelling their physicians to do an ultrasound.

Now, on this cool, overcast Thursday, the Fronteras got their answer: Adam had a solid tumor sitting on his adrenal glands. “The mass was the size of a grapefruit in the body of this little 40 pound, four-year-old kid, if you can imagine,” Frontera says.  As well as the mass on his adrenal gland, the cancer had spread throughout his bones.

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Top image: Mark Frontera with Adam. Above: The Fronteras in 2014 (Joshua, Tara, Adam, and Mark). Image credits: Ashley Brown Photography

Adam’s body was overtaken with stage IV high-risk neuroblastoma, a cancer that starts in the nervous system and occurs most often in infants and children younger than 10 years old. According to the American Cancer Society, there are roughly 700 new cases of neuroblastoma in the U.S. every year. The average age of children when they are diagnosed with the disease is one to two years old.

Struck with the news, Frontera felt an unusual sensation—helplessness. Engineers, after all, solve problems; they don’t get stuck in them. “It’s a life-changing moment—all of a sudden, you’re on a different life trajectory,” he says. “There’s a saying in this community that goes, ‘You’re not a parent of a kid with cancer until you are.’ You just don’t consider something like this until it’s you who is dealing with it.”

The survival rate for those like Adam in the high-risk group has risen from nearly certain death a few decades ago to around 50 percent today. While the word “luck” shouldn’t be used within 10 feet of a child suffering from his disease, at least Adam had the better fortune of being born in a time when he and his parents could nurture an ember of hope.

Within 48 hours of receiving the diagnosis, Adam’s doctors had him on chemotherapy. “That started a two-year journey that included a massive number of therapies, some still in clinical trials,” Frontera says. “The good thing is that there has been breakthrough after breakthrough in the last decade to fight this cancer.”

Those breakthroughs mean Adam might have a shot at beating neuroblastoma. Therapeutic cocktails countered the cancer’s advance and, slowly, sent it into remission. He officially ended treatment on August 28, 2014. Advanced imaging with X-rays and isotopic tracers found the disease before it was too late and now monitor Adam every three months for signs that it is still being held at bay.

It just so happens that Frontera is on the frontlines of improving one of the devices that is helping Adam survive. Since graduating with a master’s degree in mechanical engineering from Cornell University in 2002, he has been on a team improving an advanced medical imaging machine called a computed tomography (CT) scanner, which produces virtual slices of patient tissue using X-rays. When pieced together, these slices give doctors a three-dimensional look inside the body without performing surgery. The CT scanner that his manager’s team had developed several years ago was the one that diagnosed, monitored and helped doctors treat Adam’s cancer.

Frontera’s development group is now working to make a step change in diagnostic capabilities while also lowering the dose of radiation a patient must receive to get CT imagery. His work, he says, has taken on new urgency. His family’s private battle has not only changed everything in their personal lives, but has fundamentally altered how he looks at what he does for a living.

“Before Adam got diagnosed, of course I knew that these CT scanners we work on were important for people, but it was a very generic feeling,” he says. “But when you enter the world where your four-year-old is getting scanned every week, or you sit in the waiting room and see all these other families doing the same thing, you see it directly. You know these families and your own kid is counting on this machine.”

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Adam, left, with his 8-year-old brother Joshua. Image credit: Ashley Brown Photography

Even though Adam, now 6, is cancer-free, the treatment course has been tough on him. The powerful drugs caused him to lose some of his hearing, and he now wears hearing aids in school.   The drugs made it unlikely that he’ll be able to have children.  His heart, kidney, and liver will be monitored closely to look for potential long term effects.  He also has problems with his teeth due to decay from the chemotherapy, though thankfully he hasn’t yet sprouted his adult set.

Adam’s parents are still holding their breath. The five-year survival rate of children with high-risk neuroblastoma hovers at 40 to 50 percent. Even if it stays away, six-year-old Adam will need to be monitored for recurrence for the rest of his life.

“Medical science has at least gotten to the point where kids like Adam have a chance. He’s now in the first grade,” says Frontera. “He sat in a hospital bed for two years, and now he’s making up for lost time—he’s got so much energy that we can’t keep pace with him. He’s a phenomenal little guy.”

Go to the family’s Facebook page, Aces For Adam, to keep up with Adam’s fight. The Fronteras are also raising funds to continue advanced research on neuroblastoma at the Dana-Farber Cancer Institute. 

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