Diagnosed with brain cancer as infant, Riley Brilliant about to turn 5
Like any kid who’s about to turn 5, Riley Brilliant is happy — and excited. In the living room of his Salisbury home, he dances and sings and reads and colors and jabbers about a mile a minute.
“I’m happy!” Riley repeats.
Which makes you happy, because to tell you the truth, there was a miniscule chance Riley would ever reach his fifth birthday.
“This is a day we never thought we’d see,” says mom Michelle.
When Riley was eight-weeks-old, he was diagnosed with a stage 4 brain tumor. Doctors in Charlotte said there was nothing they could do, so Michelle and husband Jason took Riley to St. Jude Children’s Research Hospital in Memphis, Tenn.
Riley ended up having the majority of the left side of his brain removed. Doctors won’t yet say he’s in remission, but reaching his fifth birthday is a huge milestone.
“Doctors told us he had a 5 percent chance of survival, and that was being optimistic,” Jason says.
To celebrate, the Brilliants are planning a party — a big party.
“Birthdays are big for us,” Michelle says.
“That’s just how we roll,” Jason adds.
Riley will have, as his sister Lizzie, 6, says, “a birthday party slash blood drive.”
The event — complete with superhero theme — is set for 1 to 5 p.m. Sunday, Dec. 22 at Grace Bible Church, where the Brilliants are members. In addition to the blood drive, there will be activities for kids and refreshments.
“It’s so cool!” Riley says, again with his trademark enthusiasm.
Jason, 38, is a Spanish teacher at East Rowan High School. Michelle, 30, taught high-school science, but now homeschools their children so she can take Riley to all of his therapy sessions. He takes physical therapy, occupational therapy, speech therapy and pool therapy.
“They said he would never walk or talk,” Michelle says, but Riley has accomplished both, even though he didn’t do either until he turned 3.
Lizzie is flying through the homeschool curriculum, her mother reports.
“She’s in first grade, but I really think she’ll start second grade before the end of the year. There’s no reason not to.”
With Riley, Michelle has found there is no special-needs group for homeschoolers, so he attends many of Lizzie’s activities.
“It’s all uncharted territory,” Jason says.
As the sibling of a special-needs child, Lizzie craves attention, her mom says, so Michelle makes sure that Lizzie has some activities that are hers alone, including gymnastics and art lessons. She especially enjoys lunch with her granddaddy, Frank Brilliant.
Although he wears hearing aids and glasses, Riley doesn’t miss much.
He and Lizzie are fascinated by photographer Wayne Hinshaw and his camera, and constantly want to check out the pictures he’s made. Lizzie runs to get her own camera, and shows off some pretty good selfies.
“Riley wants to know what everything means,” Jason says. “It’s his new phrase of the month. He spouts off a lot of phrases. He’s building up a larger repertoire.”
The left side of the brain, Jason explains, controls memory, speech, motor control and social understanding.
Riley tends to repeat phrases over and over, and doesn’t like using his right hand, which is on his weaker side.
He wears braces on both legs. He tends to fall a lot, and cannot get up from the floor on his own. Michelle encourages him to get to a chair so he can pull himself up.
Because he’s had some vision loss, there’s a line in the hallway made out of duct tape to help Riley walk straight, and colorful laminated footprints taped on the back steps, to remind Riley to go down each step one at a time.
“I got Botox!” Riley says.
Indeed he has. Jason explains that botox injections help relax the muscles on the right side of Riley’s body, as well as both legs. He’s had two treatments so far. Within a week, Michelle could tell a difference in Riley’s muscle tone, but it does wear off.
Riley and Lizzie both adore books. Lizzie is an excellent reader, and Riley likes nothing more than being read to. They visit the library once a week. Lizzie is allowed to pick out six books because she’s 6, and Riley four because he’s 4.
“I’m 5!” he says, rounding up like every other kid does before a birthday.
Michelle also picks out books relating to what they’re studying that particular week, so she’s one of those moms who leaves with armfuls of books.
Because Riley lacks the part of the brain that controls social understanding, he wants to strike up a conversation with everyone he meets. That can make for long trips at the grocery store, Michelle says. But people tend to be gracious, Jason says.
The family found out during a recent rare outing to Wendy’s that Riley knew all the senior patrons there, and they knew him, thanks to frequent visits with his grandparents, Bill and Paula Haynes.
“He’s a sweet, happy kid,” Michelle says. “He’s still a toddler in many ways.”
“It’s a struggle because he’s not doing things you wish he could do,” Jason says. “We just don’t know what he might do, and we don’t want to put limits on him. But it can be real discouraging.”
Jason and Michelle tend to focus on the positives, however.
Like watching Riley dance around the living room.
Michelle pulls up a favorite song on the iPad, “Wagon Wheel,” by Darius Rucker. Riley sings along and strums a pretend guitar with his left hand. He doesn’t get all the words but he’s definitely got the tune.
“I’d like to dance with you but I’m not in the right outfit,” says Lizzie, who by now has changed into a leotard, tutu and cape she’ll wear for the superhero party. She’s dressed as Violet from “The Incredibles.” It’s not long before she’s dancing along with Riley, however.
“Rock me, momma, like a southbound train!” Riley sings.
Then Michelle switches to “Steady My Heart,” by Kari Jobe, and Riley and Lizzie sing their lungs out on the chorus.
Even when it hurts
Even when it’s hard
Even when it all just falls apart
I will run to you
Cause I know that you are
Lover of my soul
Healer of my scars
You steady my heart
“Wasn’t that fun?” Riley says.
To sign up for the Superhero Blood Drive, you can contact Michelle Brilliant through Facebook or call the American Red Cross at 704-633-3854.
Freelance writer Susan Shinn lives in Salisbury.