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Aces for Adam

he Fronteras in 2014 (Joshua, Tara, Adam, and Mark). Image credits: Ashley Brown Photography

The Fronteras in 2014 (Joshua, Tara, Adam, and Mark). Image credits: Ashley Brown Photography

Eight-year-old Adam Frontera is full of energy and an irrepressible passion for life. Today he’s into the musical Hamilton, tomorrow it will be something else. He is always looking to try something new.

But in the summer of 2012, aged four, Adam began to experience extreme pain when he walked. He woke up at night in agony because of the pain in his stomach and bones.

On a Thursday afternoon that October, Adam was diagnosed with stage IV high-risk neuroblastoma.

“They say that you’re never a parent of a child with cancer, until the day you are,” remembers Adam’s dad, Mark. “After the emotional pain, our initial mindset was focused on, how do we make the best decisions with the information we have at the time without looking back and second-guessing. We were asked to make a lot of very serious life decisions about Adam’s care on very little experience.”

Neuroblastoma is a rare type of cancer that mostly affects babies and children under 10. It develops from nerve cells left behind from a baby’s development in the womb. Tumors most commonly occur in one of the adrenal glands that sit on top of the kidneys, or in the nerve tissue that runs alongside the spinal cord.

Tumors can spread to other organs such as the bone marrow, lymph nodes, liver and skin. The exact cause is unknown, and it generally doesn’t run in families.

Adam had a mass the size of a grapefruit sitting on his adrenal glands, and the cancer had already begun to spread throughout his bones.

Before Adam’s diagnosis, Mark had heard very little of neuroblastoma. Throughout Adam’s treatment, Mark worked at GE Global Research. But more recently, he joined the GE Healthcare Computed Tomography (CT) team to get more involved in the immediate clinical world. Mark’s current manager was the engineering program manager of the product that diagnosed Adam.

A CT scanner’s lights turned gold for Childhood Cancer Awareness Month.

“While I intuitively knew how important these tools are, it became crystal clear when Adam was diagnosed,” said Mark. “My sense of urgency and priority changed. The focus of my efforts became much more ‘real’.”

Within a given day, Mark would go from his lab at work, to the oncology clinic where Adam was, then back to work. “I could see the patients relying on the technology we were working on. My four-year-old was one of those faces.”

Treatment began almost immediately. After eighteen grueling months of chemotherapy, monoclonal antibody therapy, MiBG therapy, Radiation therapy, surgeries, and a stem cell transplant, Adam’s body responded. The tumors receded, and Adam was officially in remission as of August 28, 2014. Today, nothing can stop him.

Adam’s cancer was diagnosed thanks to some of the most advanced imaging technology available, developed by Mark’s predecessors and contemporaries in the field. Adam received ultrasounds, CT scans, MRI scans, Nuclear Imaging, and more to monitor the tumors.

“CT is in a very interesting state,” Mark added. “The focus has moved from chasing different technology paths to patient outcomes. The challenge for CT will be to continue to advance medical information and getting more answers for the doctor to make better decisions.”

Mark’s hope is that his teams’ efforts will, in a sense, pay forward Adam’s successful treatment to the next class of kids.

“My dream is that pediatric oncology research will make the treatment more effective, saving more lives and minimizing the harm needed to save that life,” he said.

Adam and Mark.

Adam and Mark.

“Knowing what the results of medical imaging mean to families fighting this battle, like mine, makes me work incredibly hard every day,” said Mark. “I want to help find more immediate and accurate answers to shorten the time associated with ‘scanxiety’, the sometimes crippling anxiety parents and children can feel while waiting for results. I want the diagnostics to cause fewer side effects. And, I try to think about how design can influence patient experience; before, during and after the exam.”

However, remission is not the end of the story. Adam had a 50/50 chance of making it through treatment, and he has a 50/50 chance of the cancer coming back. He will have to live with the side effects of the extremely harsh treatment, one of which will most likely be a secondary cancer.

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. Find their page here.