Emilio’s story: Finding hope through comprehensive, personalized care

Throughout February 2018, Emilio Such, then almost 3, had been vomiting and suffered from recurring headaches. His parents, Jesse and Dení, had taken him to the doctor about these symptoms in the past, but one chilly night, a headache prompted Emilio to let out an ear-piercing scream unlike anything the Such family had heard before. After an overnight stay in the emergency room, Emilio was diagnosed with a craniopharyngioma, a rare, benign brain tumor near the pituitary gland. Craniopharyngiomas are surrounded by fluid-filled cysts that can put pressure on brain tissue and nerves if they are not drained regularly or removed. Without treatment, craniopharyngiomas can affect hormone production, growth and vision.

Two days later, Emilio had a craniotomy to remove as much of the tumor as possible. The next few months were dedicated to curtailing additional tumor growth until an MRI scan in October 2018 showed that he needed radiation to shrink what remained of the tumor. The Such family went to 13 different doctors in various states for opinions until arriving at the Francis H. Burr Proton Therapy Center at Mass General for Children (MGfC), the only proton therapy facility in New England and an international referral center for pediatric radiation oncology.

“What we found at MGfC was an incredible sense of clarity, honesty and transparency. No matter what the chance was of something working or not working, we wanted to know, and MGfC gave us that,” said Jesse. “There is a certain level of intimacy here. It’s not like a factory with patients in one door and out the other.”

Proton therapy is a unique form of radiation therapy that concentrates the dose in the tumor than traditional radiation, and preserves more healthy tissues surrounding a tumor or growth. “This is especially important for children so their growth and development remain as unaffected as possible,” said Torunn Yock, MD, director of Pediatric Radiation Oncology at MGfC and member of Emilio’s care team.

Despite the long and rigorous six-week treatment course ahead, Emilio marched into the Proton Center with a smile – a smile that his care team was determined to keep on his face whenever possible. It started with a tour of the cyclotron, the futuristic machine that delivers proton therapy, and meeting everyone on his care team. Emilio also had the opportunity to customize the protective mask he wore during treatments.

“His neurosurgeon spent 45 minutes with us showing us the tumor on a model brain,” said Jesse. “MGfC is so organized and structured. It was a whole new sense of time and attention.”

When children receive treatment for craniopharyngiomas, it can often involve collaboration with Mass General physicians who care for adults with the same diagnosis. “In a lot of ways, craniopharyngiomas encapsulate the strengths of what we do as an institution beyond what a standalone children’s hospital can do,” said William Butler, MD, a neurosurgeon at MGfC who cared for Emilio. “At any time, we can leverage our resources from the adult realm and transcend what we can do for children. We have the great advantage of being integrated into a larger hospital that cares for patients along the entire lifespan.”

Throughout his six weeks at the Proton Center, MGfC provided guidance for Emilio, now 4, and his family and collaborated with his care team at home in New York. As a result, his tumor shrunk and the cysts no longer need to be drained. In February 2019, the Such family returned home.

“Emilio has been doing remarkably well. He has this new sense of confidence and happiness. MGfC is honest and experienced with their treatments, and they are passionate about helping to provide families with a good quality of life. It’s a place to provide hope, which is just what they gave us,” said Jesse. “At a certain point, after all the second, third and fourth opinions, the internet searches and the alternative therapies, we realized that MGfC was the end point. None of the other measures were necessary. We can go on and live our lives as it used to be.”