Brain surgery and proton therapy in Jacksonville help Scottish Boy return to a normal life
Even though his favorite team wasn’t predicted to win, Brandon Bell felt victorious as he took the field for the coin toss before the Jacksonville Jaguars-San Francisco 49ers game in London with Baptist Health President and CEO Hugh Greene by his side.
That’s because Brandon had already won the biggest fight of his life: surviving a life-threatening brain tumor that was affecting his vision and impairing his pituitary gland. Through the Make-A-Wish Foundation, Brandon got to serve as honorary team captain for the Jacksonville Jaguars at famed Wembley Stadium – a dream come true in many ways. For those who saw him standing on the field looking like the picture of health, it was hard to imagine what Brandon had endured over the past three years.
Brandon’s battle began in 2010 while his mother was studying brain tumors as a radiography student at Queen Margaret University in Scotland. Sara Bell started to notice that her then-12-year-old son was extremely tired and complaining of headaches – some of the same symptoms she was learning about in college.
“I was hoping I was just being paranoid, but I had a bad gut feeling about what was happening to him,” she said
After a trip to the eye doctor ruled out vision problems, a CT scan revealed a mass on his brain. Brandon was diagnosed by his UK doctors with a craniopharyngioma, a rare tumor derived from embryonic pituitary gland tissue. Although these tumors are typically benign, they can have devastating effects because of their location near the pituitary gland, which affects growth, sexual development, and metabolism.
Brandon had brain surgery in the UK, but not all of the tumor could be removed safely. His doctors recommended traditional radiation therapy to shrink the remaining tumor. In her studies, Sara had learned about proton therapy, the most precise form of radiation that can often spare healthy brain tissue, so she applied to have Brandon treated in the United States. Unfortunately, although Brandon was a suitable patient for proton therapy, he was too old for the UK’s health system to cover the cost.
Knowing proton therapy was the best option for Brandon, Sara and her husband Malcolm launched a massive grassroots fund-raising effort to help them pay for the treatment in the United States. “How could I allow my son to have conventional radiotherapy treatment when I knew there was a better option that would cause far less damage to healthy cells?” Sara asked.
She and her family went to every TV and radio station in Scotland’s North Lanarkshire area, created and passed out flyers, and told everyone they could about Brandon. “The outpouring of support was amazing,” Sara said. “We even had children knock on our front door to give us their pocket change.”
As they began to raise money, Brandon’s cystic tumor began to grow again. While this is not uncommon for these tumors, this development made Brandon’s treatment even more urgent. “We felt like it was a race against time,” explained Sara.
After five weeks of full-time fundraising, the Bells had collected $300,000 – enough to cover the cost of the proton therapy, supportive medical care and living arrangements for the two months of treatment in Jacksonville.
However, surgery to remove the cyst was necessary before Brandon could begin daily proton therapy. Through a partnership between the University of Florida (UF) Proton Therapy Institute and Wolfson Children’s Hospital, Brandon was referred to Philipp Aldana, MD, a pediatric neurosurgeon with the University of Florida College of Medicine-Jacksonville.
“Brandon’s tumor cyst was near his temporal lobe and close to the carotid artery,” explained Dr. Aldana, medical director of the Lucy Gooding Children’s Neurosurgery Center at Wolfson Children’s Hospital. “To limit the amount of radiation to the brain, it was necessary to remove the cyst before starting the proton therapy to shrink the tumor.”
Dr. Aldana had to go under the lobes of Brandon’s brain to remove the tumor cysts, yet he had to be careful enough to preserve the blood vessels. Dr. Aldana also placed fiducial markers in Brandon’s skull to help guide the proton therapy precisely to the mass.
“Every two hours, someone would let me know how Brandon was doing during the surgery,” said Sara. “The staff at Wolfson Children’s Hospital really gave me peace of mind. When the surgery was over, Dr. Aldana came to me personally to tell me the surgery was a success. That meant so much to me.”
Brandon was able to begin proton therapy just three weeks after the surgery. “With proton therapy, it is easier to spare important tissue around brain tumors from radiation,” explained Danny Indelicato, MD, who directs the UF Proton Therapy Institute pediatric proton program. “This is particularly important in children because they are the most sensitive to the harmful effects of radiotherapy.”
Brandon had proton therapy every day at the UF Proton Therapy Institute for six weeks during the fall of 2010. “To help pass the time, he got interested in watching American football on TV,” explained Sara. It wasn’t long before Brandon became a full-fledged Jaguars fan, and he jumped at the chance to be on the field for the coin toss before the team’s recent game in London.
With successful completion of proton therapy behind him, Brandon was well enough to return to Scotland with a healthy prognosis. “The cure rate for craniopharyngioma patients like Brandon typically exceeds 80 percent and, following proton therapy, most of these children have the opportunity to live a full life free of major radiation side effects,” said Dr. Indelicato.
The family comes back every year so doctors can monitor him for tumor growth and side effects. Three years later scans suggest the tumor has stopped growing.
“Brandon is a healthy 16-year-old with a great future ahead of him,” Dr. Aldana said.
The annual trips to Jacksonville have a medical purpose, but mean a little more to the Bells. They developed close bonds with Brandon’s doctors and now consider Jacksonville their second home.
“We look forward to visiting Jacksonville and seeing Brandon’s doctors every year. We make a holiday of it,” said Sara. “We are forever grateful for the compassionate care we received at Wolfson Children’s Hospital and the UF Proton Therapy Institute. Most of all, we are thankful that our son can live out his dreams.”