Alex's Story: Family-Centered Care Helps Kids Be Kids Throughout Challenging Treatments

What Alex Sheehan remembers most about his visit to Mass General for Children (MGfC) isn’t his radiation treatments, but his time spent playing games, making duct tape wallets and completing puzzles in the waiting room. It’s these moments of fun that added a sense of normalcy to a challenging time in Alex’s life.

In 2010, Alex was diagnosed with a craniopharyngioma, a noncancerous tumor near the pituitary gland in the center of the brain. If left untreated, craniopharyngiomas can spread to surrounding healthy tissue and cause debilitating symptoms. They can also disrupt normal growth and development.

The Sheehans received Alex’s initial diagnosis at home in Nazareth, Penn. “We were in shock and disbelief,” said his mother, Lynn. “Fortunately, we found out quickly exactly what Alex had and what his course of treatment would be. I think once we knew what we were faced with, we became stronger and we knew that we’d get through it.”

Alex first had surgery in Pennsylvania to remove as much of the tumor as possible. To shrink the residual tumor leftover from surgery, Alex then traveled to Boston with his family to begin eight weeks of proton beam therapy at the Francis H. Burr Proton Therapy Center at Massachusetts General Hospital.

Proton beam therapy is a form of targeted radiation therapy designed to shrink tumor cells while helping to preserve more surrounding healthy tissue. This is especially important for children, who are more vulnerable to the effects of radiation because their brains and bodies are still growing. By preserving more surrounding healthy tissue, there are fewer long-term effects on growth and development.

“At the Burr Proton Therapy Center, I meet the most incredible families from all over the country and, in some cases, from all over the world. This includes the Sheehans, who are a remarkable family,” said Torunn Yock, MD, director of Pediatric Radiation Oncology at MGfC and a member of Alex’s treatment team. “Alex is a perfect example, given his down-to-earth personality. Throughout his entire treatment, he took everything in stride and handled everything so well. Looking at him now, you’d never guess he had a brain tumor and received this type of treatment.”

From the day the Sheehans arrived at MGfC, Yock and her staff made every effort to comfort, inform and involve Alex and his family in all aspects of his care. “From the minute we met Dr. Yock, we knew we were where we needed to be,” said Lynn. “We never felt rushed. We always felt like Alex was her only patient. She and the staff became like family to us.”

As for Alex, MGfC began to feel like home away from home. “The staff at the Burr Proton Therapy Center were all very nice and they helped me through it,” said Alex. “For other kids coming here for treatment, I’d tell them not to be scared. It doesn’t hurt and everyone is there to help them.”

Nearly six years after his last treatment, Alex is now a happy, completely healthy 16-year-old high school student. “My experience at the Burr Proton Therapy Center was excellent. I was nervous at first, but the treatments were only 10 minutes. The staff let me listen to my favorite music while I received treatments and there were fun activities to do every day,” said Alex. “There were many times when my family and I would stay for hours after treatment just to finish a puzzle. When the last treatment came, I was actually pretty sad because I didn’t want to leave.”

When the Sheehans come back once a year for Alex’s check-up, it’s like visiting family, according to Lynn. “His last visit for treatment was really bittersweet. We were happy that it was over, but we spent eight weeks there with the same people every day. They really became like family to us,” she said. “We’ll be forever grateful for everyone at the Burr Proton Therapy Center.”

For the Sheehans, having the chance for Alex to simply be a kid and have fun throughout his treatment meant so much, said Lynn. “Everyone there, especially Dr. Yock, was able to let us keep our son with no significant deficits,” she said. “Alex hasn’t had any setbacks and he’s a completely normal teenager who just happened to have a brain tumor six years ago.”