The nightmare often begins with something small and seemingly insignificant: a bruise that won’t heal, a persistent head cold or just a routine visit to the pediatrician. For the Cassidys of Millis, life changed forever the day they moved the couch.
Their only child, Declan, was 2 at the time and was running around the house like a Jack Russell on Red Bull. “It’s what he does,” said his dad, Terry. “He runs around.” On this day in early June 2011, Declan was having trouble with his running route through the living room. His parents had rearranged the furniture, and the poor kid kept banging into the couch.
Mom and Dad didn’t know what to think so they made an appointment to see an eye doctor. “We thought he might need glasses,” said his mom.
Annette Cassidy then reels off the sequence of events like all Jimmy Fund parents do, like it happened yesterday or like it happened every minute of every day since they heard the news: The eye doctor sent them to a pediatrician, who recommended a neuro-ophthalmologist, who sent them to Children’s Hospital, where they immediately ordered an MRI. Finally, Dr. Nicole Ullrich, a neurologist with a big heart, sat them in her office, where the walls then came crashing down on the young parents of Declan Cassidy.
“She said he had a brain tumor,” Annette said. “It was the size of a mandarin orange.”
Dr. Ullrich said it was called optic tract glioma, and it was inoperable. Their little boy was blind, and there wasn’t much they could do about it.
“It was devastating,” said Annette. “I can’t put into words the feelings you have. You don’t sleep for days. You have so many questions. They said it was in the center of his brain. It was just surrounded by too many vital things. You can’t remove it. He started chemo right away.”
He also started visiting the Jimmy Fund Clinic, which meant the place would never be the same. Declan is 4A now, and two rounds of chemo have done little to slow him down. Like Dad said, he runs around. It’s what he does. He also laughs and hugs and talks and makes colorful bracelets that he hands out to everyone he meets.
When I met Declan at the Clinic two months ago, the place was bustling. There were 35 or 40 people, patients and family and visitors, all coming and going. There was a lot of action, and it all seemed to revolve around the 4-year-old boy with the goofy glasses and big smile. When Declan would accidently run into someone’s legs, he would stop long enough to give them a hug before darting off in another direction.
“Declan has a special gift of bringing everyone he meets close to him and making us all smile,” said Lisa Scherber, the Jimmy Fund Clinic’s patient activity coordinator — aka the Play Lady.
Two years ago, after his first round of treatment, chemotherapy had slowed the growth of Declan’s tumor and given his family some hope. It was difficult on Declan, but he was 2 years old. He didn’t know any better. And he was doing great until this past June, almost exactly two years from the day of his original diagnosis.
A routine MRI revealed some growth in the tumor, which can happen when the rest of the body is growing so quickly. His parents heard the dreaded R word: relapse. Declan had to go back for another long, painful round of chemo. And this time he wanted to know exactly what they were doing to him.
“It’s probably harder this time because now he understands what’s going on,” said Annette. “He’s 4A now. He’s smart. He knows he has a brain tumor. I can’t imagine what it’s like to go through this with a teenager, but then I think: Declan is going to be a teenager someday.”
Declan can live with his tumor, but he can’t do all the things the other kids can do. He’ll never drive a car. He probably won’t be able to hit a fastball. All the usual hopes and dreams of a parent change instantly when a child is diagnosed with cancer, but the Cassidys have learned to adjust.
Declan went to his first Red Sox game recently and wanted to know why he couldn’t play baseball. His mom said he’s hoping to try Beeper Ball, which is baseball for the blind with a ball that makes noise. He’s learning to ride a bike and to read Braille.
The Cassidys are looking at a life full of challenges and obstacles for their only child, and like most Jimmy Fund families, they are doing it without a hint of anger and resentment. Annette says the clinic has allowed them to meet families who are worse off than they are, and kids who aren’t as fortunate as their little boy.
“Declan had a close friend who passed away — same age, another boy from Massachusetts,” said Annette. “It was just heartbreaking. It’s strange. Sometimes I find myself saying, Oh, we’re lucky. Our son ONLY has a brain tumor.’ He’s still here with us. We know it could be so much worse.”