Behind blue eyes
Bright eyes defy 6-month-old’s battle with cancer
Braylin Coville’s twinkling baby blues give no sign of the battle raging behind them. He giggles when his mom tickles him, just like any other 6-month-old, squeals, and hides his face in a baby blanket.
He doesn’t even seem to notice a plastic tube attached to the port in his chest. Today, a bag of intravenous antibiotics is connected to the other end of the tube — Braylin woke up with a fever early the morning before, and his doctors aren’t taking any chances with the infant’s fragile immune system. Everyone else in the family had caught a cold, an inconvenience for healthy people, but “it can be a bad thing for (Braylin),” mom Heather says.
She’s been through all this before — the endless doctors’ visits, hospital stays, laser treatments, chemotherapy and radiation. As children, both Heather and her 16-year-old daughter Shayna battled the same disease as Braylin. But when Heather and her husband Dan found out she was pregnant again, they hoped their youngest son would be healthy like his 10-year-old brother Brindan. Instead, doctors confirmed their fears when Braylin was just a month and a half old: like his mother and sister, Braylin has retinoblastoma, a rapidly growing cancer in the retina, the light-detecting tissue of the eye.
And like his mother and sister, Braylin has the bilateral version of the disease, meaning he has tumors behind both eyes — six on one eye and seven on the other, Heather says. The disease is found only in children under age 5, and 90 percent of new patients have no family history of retinoblastoma. So most parents, like Heather’s, don’t know to watch for symptoms.
Heather was born fourth of five children, and none of her siblings had retinoblastoma. There was no family history of the disease, and her parents didn’t notice any problems with Heather’s eyes until she was 2.
“They didn’t know what to look for,” Heather says.
Eventually her parents noticed an odd glare in Heather’s eyes in a family photograph, and took her to a doctor. She was diagnosed with bilateral retinoblastoma at age 30 months, and underwent six years of chemotherapy, radiation and cryotherapy, a treatment that freezes tumors. One tumor growing on Heather’s right eye was beginning to press on her brain, and doctors removed her eye. She wears a prosthetic eye, and says she’s excited to get a long-overdue replacement in April.
“I can’t wait. I call (the prosthetic) ‘my new personality,’” she says, laughing.
Retinoblastoma has left Heather legally blind, but daughter Shayna fared better. Shayna, who was born to Heather in a previous marriage, was diagnosed with the cancer at only 1 month old and underwent treatment until doctors removed her chemo port just before her third birthday. Her laser treatments were in Los Angeles, Calif., and chemotherapy and radiation were in Portland, Ore., so “we more visited home than visited the other places,” Heather remembers.
While Shayna lost central vision in her right eye, her peripheral vision is fine, and her left eye is “pretty good,” Heather says. Shayna was too young to remember the three years of hospital visits, needles and chemotherapy, and the family hopes the case will be the same with Braylin.
Although Dan and Heather’s first child, Brindan, escaped retinoblastoma, the disease is genetically linked, and the couple knew chances were a second child would be affected by the cancer. They decided the danger was too high, and Heather was on birth control when Braylin was conceived.
“Braylin was a definite surprise to us. We didn’t plan on having any more; we didn’t want to take the risk,” Heather says.
“(But) mom and dad just don’t know how the world turns without this kid in it,” she adds, smiling in response to a chuckle from Braylin.
When Braylin was diagnosed, he started laser treatments right away at Rocky Mountain Eye Clinic in Missoula. Over the next three months, Dan and Heather watched their infant son endure dozens of doctor’s visits and needle sticks, but the tumors kept reappearing. Then finally in late December, a visit to Braylin’s doctors at Doernbecher Children’s Hospital in Portland showed no new cancer growth.
“We thought, ‘This is finally our break,’” Heather remembers.
But by the end of January, two new tumors had appeared, and the Covilles found themselves back in Portland hearing bleak news from Braylin’s physician. A tumor was growing dangerously close to the optic nerve in Braylin’s left eye, and he would need to start chemotherapy immediately.
“That’s when everything went haywire,” Heather explains. “We were hoping he wouldn’t have to have chemo.”
Since then, life for the Covilles “just has been absolute chaos,” she adds.
Besides traveling back and forth to Portland two to three times a month, Heather takes Braylin to St. Luke Community Hospital twice a week to have his blood drawn and cell counts checked. The results are how Heather knows if Braylin’s strong enough to be in public and “if we can go grocery shopping,” she says.
Cell counts were up last week before Braylin’s brush with the family’s cold, and then he spent two days at St. Luke on IV antibiotics. Now he’s got until Friday to rest up at home before heading off to Portland again — his next chemo treatment is scheduled for March 30.
Braylin’s doctors have six chemotherapy visits planned for him, but they’re hoping he’ll only need three to beat the disease. After his first treatment, his mom says the only thing that’s changed is that Braylin doesn’t want warm bottles and baby food anymore; he likes his milk cold. And he still has a full head of hair.
“He’s doing remarkable with (the chemo),” Heather says.
But she worries that the next treatment will take a more drastic toll on the child. “We’ll just have to see how things go. It’s just a waiting game.”
Braylin’s next visit to Portland will start with a laser treatment, and then he’ll be admitted to the hospital for chemotherapy. He’ll take three drugs the first day, and a second dose of one the next day. Then, depending on how the baby’s system handles the treatment, the Covilles can return home.
Since Shayna and Brindan will be on spring break, they’ll make the Portland trip this time, too. Usually a family friend stays with the kids when Dan and Heather travel with Braylin, but the family’s planning some much-needed relaxation time along with the hospital visit next week. They hope to visit family in Coeur d’Alene, Idaho, and check out the Oregon Coast Aquarium in Newport, Ore., before Braylin’s chemo treatments. A tight-knit family, it’s obvious that Braylin’s brother, sister and parents dote on him.
“He’s like my world, and we’re like his solar system,” Heather says.
Braylin’s especially close to big brother Brindan — their faces light up when they see each other, and the two share an almost magical connection, their mom says. And baby Braylin makes a great listener for Shayna; “he’s like her little journal,” Heather says.
“Yeah, he can be sometimes,” Shayna agrees, smiling.
Easily, the hardest part of the situation for the family is watching their beloved son and little brother endure pain. Dad Dan would trade places with Braylin in a heartbeat.
“I can’t stand to see the needle sticking out of his chest,” Dan says, referring to Braylin’s chemo port — an ever-present reminder that something’s wrong with his son.
“(Braylin’s) dad and I would do anything for him. Right now it’s a battle, but he’s still a kid,” Heather says.
Like any parent, Heather looks forward to watching her son grow up happy and healthy. When Braylin was just 2 months old, an MRI showed that his brain was as developed as a 1.5-year-old — a sure sign that there are great things in her son’s future, Heather believes.
“The (radiology technician) told me, ‘Look out,’” she says, chuckling. “(Braylin’s) very intelligent.”
Dan and Heather moved to the Mission Valley just two years ago from Coeur d’Alene, where they were raised. Until last month, the family lived in an apartment in Charlo, but a blessing came in the form of an affordable, roomier house in St. Ignatius “that was just totally meant to be,” Heather says.
Add moving to the Coville’s already hectic spring, and “it’s pretty much just nonstop,” Heather says.
The financial burden of having a child with cancer is another major stressor for Dan and Heather. In Coeur d’Alene, Heather owned and operated a daycare, but her vision has deteriorated to the point that she can’t drive, which makes working nearly impossible. Heather’s on SSI (Supplemental Security Income), and Braylin is covered by Medicaid, “which has saved us,” Heather says.
But the family is struggling to keep up with the costs of frequent trips to Portland for Braylin’s medical care. Dan works as a mechanic at D&M Repair in Pablo, and it’s difficult for him to make up all the days he misses while traveling to Portland. He puts in as many weekend hours as he can, when there’s work, but that means he’s away from Braylin much more than he’d like.
Dan and Heather would like to be able to start flying to Portland — the drive takes them two days, and fueling their Suburban costs about $100 a tank. They also have to pay for food and lodging, both along the way and in Portland, bringing the grand total of each trip to nearly $1,000.
On their last stay in Portland, Dan and Heather slept in the hospital with Braylin — an opportunity they were grateful for, since it meant they didn’t have to pay for a hotel room. Last week, Heather priced flights from Missoula to Portland, and at nearly $500 a ticket, flying is out of the question, at least for now.
An out-of-state relative set up a “Braylin Coville Fund” at both Valley Bank and Community Bank, but as of Friday, the only donations were from a couple of family members, Heather says. Of course, every little bit helps, and the Covilles say they’re very grateful for any assistance.
Support of friends
While the Covilles are relatively new to the area, Dan and Heather are grateful for the new friends they’ve made and the support they’ve been given. Dan’s boss, Don Pierce, “bends over backward” to help the family any way he can and has been very understanding when Dan has to take off work, Heather says.
“(Don) is just the most wonderful man in the whole world,” she says.
And Heather has found comfort in sharing her and Braylin’s experience with Stacey Pule, of St. Ignatius, whose now 6-year-old daughter Brynn also had retinoblastoma. It helps to have another mom with a similar experience to talk to, Heather says. While retinoblastoma is a rare and rapidly growing cancer, it’s very treatable, and Heather hopes that one day soon all of Braylin’s troubles will be a distant memory. He already has a favorite family activity — attending the livestock auction in Missoula, where he’s fascinated by the sights and sounds of cattle milling about.
“(Braylin) loves the animals and the auctioneer … he just squeals,” Heather says.
Like a true Montanan, Braylin wears Levis and a plaid shirt to the auction, along with tiny work boots. He doesn’t have cowboy boots yet, but “he will,” Heather says, looking toward the future.
“I just haven’t found them yet.”