Braiden Norton has 'no room for negativity'

Ten weeks after a craniotomy, the 9-year-old Padanaram resident looks forward to the summer
Jun 23, 2015

It’s been about ten weeks since Padanaram resident Braiden Norton returned from a 14-hour operation to reduce his lemon-sized brain tumor. Now, almost fully recovered from surgery, Braiden’s father, Phil, describes him as “a typical 9-year-old.”

Phil Norton said the surgery went as well as could be expected. The challenge with operating on his son’s tumor, a noncancerous form of juvenile pilocytic astrocytoma, is its placement at the top of his brainstem.

“Although it isn’t as dangerous as many of the brain tumors out there, it’s the location for him that’s the problem,” said Phil. “There might be kids out there that have [a similar] tumor in the cerebellum and those are much more reachable with surgery. But with his, you can’t go in and mess around.”

Because Braiden isn’t outwardly symptomatic, his surgeon was concerned that prolonging the craniotomy would pose undue risk for the child. During the lengthy operation, the surgical team at Boston Children’s Hospital managed to remove only a quarter of the tumor.

As a result, Braiden lost the left portion of his visual field in both eyes — or about 50 percent of his vision.

“When they have to go into the brainstem, everything’s right there. There’s no promise. There’s no guarantee that something wasn’t going to happen,” said Phil.

“It was just a matter of time whether [his sight] would come back or not. Luckily, over the past 10 weeks, his vision is 90 percent recovered,” he said.

Currently, Braiden is not on any treatment for his condition. His doctors wanted to wait three months after his surgery before performing another MRI, which will happen sometime in the middle of July and help dictate future treatments. Meanwhile, Phil continues to research the next course of action for his son.

Because of the slow-growing nature of the tumor, and because it’s impossible to remove it outright, the growth poses a constant threat and must be monitored and managed. This constant vigilance has been a part of Braiden’s life since he first became symptomatic when he was about 18 months old.

“His eyes started doing weird things. But then he started losing his balance,” said Phil.

Doctors discovered that he had swelling on the optic nerve in the back of his eyes and immediately ordered a CAT scan.

“That indicates hydrocephalus, which is a blockage of CSF (cerebrospinal fluid) that’s supposed to go up and down your brain and your spine freely. It was plugged in his brain, so that causes pressure because your brain is continuously producing CSF. Then they said there was a big tumor blocking the channels,” he said.

Since that time, Braiden has had two craniotomies to reduce the size of the tumor, several central line placements to ward off infections, a shunt placement to help drain excess cerebrospinal fluid into his abdomen and 50 MRIs.

“He was on an intensive treatment for four years, from the age 2 to 6. He wore a backpack. It was a 24-hour, seven-day-a-week IV pump, pumping fluid into his body through a central line. That was strenuous. It was like full-time nurse duty,” Phil said.

All the effort and support from the family’s friends have resulted in a young man who appears happy and healthy.

The father and son’s vast network of supporters — often referred to as “Team Braiden” — held a fundraising event this past week at the Black Bass Grille to help pay for prior expenses and prepare for the next step in his treatment. Braiden’s Bash had live music, food and drinks.

“We kind of play a bigger role in taking care of him. We’re the support system,” said Kim Bancroft, who has known the family for three years and helped organize the event.

She said the night was a huge success and they surpassed their goal. She estimates that more than 75 people showed up throughout the evening.

“When I came into the situation, Braiden was doing well,” said Bancroft. “And then his tumor started growing and he had health issues. Now we’re trying to figure out what the next step is going to be in terms of treatment. He had a successful surgery, but he’s not out the woods.”

For now, Braiden plans to attend summer school and join summer camp at the Dartmouth YMCA. He went to Quinn Elementary for kindergarten before being transferred to DeMello. He said he’s looking forward to entering the fourth grade in September.

“The first day I went to DeMello for first grade, I was like ‘No, no! I don’t wanna go! I wanna go back to Quinn!’” said Braiden. “Now, I want to stay there for as long as I can.”

He remains optimistic about the state of his health and said that, for the most part, he’s no longer afraid before heading in for an operation.

“I just had a surgery two months ago, and I’m doing okay now,” said Braiden. “I’ve been to the hospital many, many times to have surgeries. I was scared before when they were talking about it. It made me a little scared . . . just the stuff that I didn’t even know about.”

Both he and his father are thankful for the support they’ve received over the years from the community and from their friends.

“We always have help if we need help,” said Phil. “Everybody’s raised him, this whole village. When they say ‘It takes a village to raise a kid,’ there actually has been a village to raise Braiden.”

With summer vacation beginning this week, Braiden is less concerned about future treatment options and more focused on archery at summer camp.

“We don’t think negative, put it that way,” said Braiden. “No room for negativity.”