Riley’s future appears brilliant
By Kathy Chaffin
“Oh, the miracles we have seen,” says Paula Haines of her infant grandson’s three-and-a-half-month battle with cancer.
Riley Brilliant, who will turn 5 months old on June 15, was diagnosed with glioblastoma multiforme ó a malignant brain tumor ó in February. Following a normal pregnancy and birth, Michelle Brilliant says Riley appeared to be a healthy baby, but he cried and fussed a lot. “We first thought it was colic and gas,” she says.
At times, she says he would cry almost all night. When Michelle went back to work as a chemistry teacher at Mount Pleasant High School, her parents, Paula and Bill Haines, who live next door, kept Riley and his 20-month-old sister, Elizabeth.
On Feb. 20, Michelle says her mother called during her lunch break with a daily report on the children. They had noticed Riley’s eyes getting really wide and then rolling downward toward his nose, she says, but on that day, her mother said they stayed in the downward position for about 15 minutes.
“She had seen kids with seizures that had symptoms like that, so she thought he was having seizures,” Michelle says.
Haines took him to see his doctor at Piedmont Pediatric, and Michelle left school to meet them.
Upon examining Riley, Michelle says Dr. Hall Levine noticed that the soft spot on top of his head was actually bulging. When he felt it, she says he left the room to make a phone call.
Michelle says she and her mother looked at each other, and one of them said, “This is not good.”
Levine made the call from an adjacent office, so they listened as he contacted the Jeff Gordon Children’s Hospital at Carolinas Medical Center-NorthEast in Concord and scheduled a CT scan for Riley. “So we left and went immediately to the hospital,” she says.
Jason Brilliant, who teaches Spanish at East Rowan High School, met them there.
As soon as they got the results from the scan, Michelle says doctors told them the bad news. “They said it was a mass and they couldn’t really tell what it was at the time,” she says, “but that the mass was very large.”
Riley was transported by ambulance to Levine Children’s Hospital at Carolinas Medical Center in Charlotte.
“I remember the ambulance ride was the worst,” Michelle recalls. Though she and Jason weren’t allowed in the back with their son, they rode along.
In the back, Riley was quiet, having been given a sedative at NorthEast in anticipation of surgery.
At Levine, Michelle says doctors ordered an MRI for Riley, which showed the mass covering most of the left side of the brain.
“By appearance, they believed it was malignant,” she says.
Dr. Mike Heffern operated on him the following morning. Ironically, the anesthetist, Dr. Barry Stowe, had gone to the same high school in Ohio as Jason Brilliant and Stowe’s sister had been in Jason’s class.
The surgery lasted five hours. Michelle says they didn’t hear anything for about three hours, when a doctor came in and told them that Riley was not doing well.
“They had lost him like three times on the table already,” she says. “He said by looking at the tumor that it looked malignant and it was going to be very aggressive and very mean.”
The tumor had grown into the tissue of the brain, Michelle says. “They said it was bigger than the size of my adult fist,” she says, “and I have a pretty big hand.
Surgeons removed almost all of the left hemisphere of Riley’s brain.
Riley lost so much blood during the surgery, his mother says, they gave him transfusions in the operating room.
“He received twice as much blood through transfusion as a baby should actually have,” she says. “I don’t think they thought he was going to make it through recovery.”
When Michelle and Jason saw their son again, he was on a ventilator.
The pathology report confirmed the doctors’ suspicions of a glioblastoma multiforme. The tumor was in Stage 4, Michelle says.
“They say in adults it’s almost always terminal because of how severe it is,” she says, “but for some reason in children, it has a different take.”
Dr. Chad Jacobson, Riley’s oncologist, told Michelle and Jason about their son’s treatment options.
“One was to go home with Hospice and pain management,” she says. “The other one was to do a hard-core chemotherapy approach and a stem-cell transplant … and that a lot of children actually die during the transplant because it’s harder on their bodies.”
Michelle says she and Jason said they needed time to think about their decision.
While doing research on the Internet, they found a treatment study at St. Jude Children’s Research Hospital in Memphis for which Riley was eligible. They called the brain tumor coordinator there, who explained the regimen.
When they told Dr. Jacobson about it, Michelle says he gave them a referral for Riley. The Brilliant family left for Memphis on Friday, March 13. Paula Haines went along so she could watch Elizabeth when Michelle and Jason were with the doctors.
The Levine Children’s Hospital had sent his records so they knew Riley qualified for the study before he arrived.
Of the 22 children enrolled in the study, Michelle says four have high-grade glioblastoma multiforme tumors like Riley’s. When she asked the doctors about their progress, she said they were told that three were in the consolidation or second phase of treatment and one was in the maintenance or third phase, when they can go home.
“The consolidation phase starts after four months,” she says, “so those patients had lived at least more than four months which gave us really high hopes.”
Riley has already shown improvements. Michelle says he wasn’t able to see after the surgery at Levine Children’s Hospital, but “his brain has rewired itself so that he is having some vision in both eyes. He will follow like a person’s face or a shape.”
Michelle says Riley’s motor skills were also affected by the surgery, so he has some difficulty with his right arm, hand and sometimes his leg. “If the brain wants to use that side, it has to kind of rewire itself,” she says, “and they say fortunately in babies, that it can.”
Her mother says God’s work is evident in Riley’s recovery. “We have received so many miracles,” she says.
The Brilliant family is staying in a Target House provided for patients’ families. Teachers from East and Mount Pleasant high schools donated enough sick leave to cover both of their salaries through the end of this school year.
Michelle says Elizabeth has adapted well to being away from home. Though Memphis is nice, she says they all miss their home in Rockwell. “We are just rural people,” she says. “We have chickens and bunnies and a cow and a dog and a kitten.”
Jason’s father, Frank, is helping to look after the animals. His mother died of colon cancer in March of 2007.
Paula Haines says the family is hoping to come home this summer. “They had originally told them November,” she says, “but Riley’s going through his chemo really well.”
In the meantime, Michelle says they communicate with family and friends through the Caring Bridge Web site. The Web site for the Brilliant family is www.caringbridge. org/visit/babybrilliant.
Paula Haines says the family is grateful for all the prayers and support. “We really believe in those prayers,” she says. “And little Elizabeth, she looks for the mail every day because she thinks she’s supposed to get boxes.
“That’s how good people have been to them.”
Contact Kathy Chaffin at 704-797-7683.