By Stephanie Choate
Facebook took on an unlikely role for a local family—lifesaver.
Williston resident Alice Gonyar said her five-month-old granddaughter, Aayla, was diagnosed with a rare eye cancer based on a symptom spotted in Facebook photos of the baby.
When she was two months old, the infant’s uncle, a medical student, noticed a distinctive white glow on her left eye in several Facebook photos posted by her parents and recognized them as a possible symptom of retinoblastoma, the leading eye cancer in infants and children.
Aayla’s father, Chris Gonyar, said her eyes—especially the left eye—had already awakened a parental instinct.
“Even with this being our first child, it’s amazing how you have innate instincts,” he said.
Both parents had noticed that Aayla seemed to look past them and have trouble focusing and making eye contact. Her left eye, in particular, seemed to be out of sync. Though they were assured that babies often go cross-eyed, they still had a feeling something wasn’t quite right.
So when Aayla’s uncle alerted them to the possibility of retinoblastoma, they took immediate action.
The Gonyars, who now live in North Carolina, took Aayla to the emergency room. A doctor happened to be working whose daughter had undergone several prior eye surgeries. He was able to get them in to see a specialist within days.
“I can’t say again how lucky we were in finding it when we did, because who knows what another month or six weeks, particularly for that left eye, would have meant,” Chris Gonyar said.
Approximately 250-300 children are diagnosed with the pediatric cancer each year in the U.S. According to information compiled on the website of the Wills Eye Hospital in Philadelphia—which treats approximately half of the children in the United States diagnosed with retinoblastoma—retinoblastoma is a cancer that “presents itself very quietly.” Children have no pain or complaints. Most often, retinoblastoma is diagnosed when parents notice a white or yellow glow in their child’s eye. “Early diagnosis and treatment is important for preventing metastasis and death of the child and additionally preserving the eye and vision,” according to the Wills retinoblastoma website.
Like red-eye, the white glow shows up in photos taken with a flash, when light is reflected out of the eye.
Parents who suspect a child may have retinoblastoma should see their pediatrician or ophthalmologist, who can look into the back of the eye to see if there is cancer. Children who are diagnosed will be sent to one of the major treatment centers, such as Wills.
Doctors found tumors in both of Aayla eyes, with a larger one in her left eye, and diagnosed her with a bilateral retinoblastoma, a genetic and more rare form. Within days from the first visit to the ER, she was finishing the first round of chemotherapy.
“I cannot tell you the nightmare,” Alice Gonyar said. “At the time there was the question of will she even live?”
Aayla is responding well to treatment—the tumors in both eyes are shrinking and calcifying, and doctors think she will have “intermediate” vision in her left eye and normal vision in the right eye.
“Everything is going well and the doctors are really happy with her progress,” Chris Gonyar said.
“She’s got both eyeballs and her life,” Alice Gonyar said.
Still, Chris Gonyar said, Aayla is not out of the woods yet.
Aayla has so far had one MRI—which was clean—to make sure she does not have the most serious form of the disease, trilateral retinoblastoma. Trilateral retinoblastoma is where tumors form in the brain, and it can exhibit itself up until age 5. She is also at a higher risk for secondary cancers like soft tissue, blood and bone cancers.
“Obviously, it’s something that we’ll have to monitor and look at for the rest of her life,” he said.
Aayla has two rounds of chemotherapy left. After that, she will need monthly eye exams and biannual MRIs to monitor the retinoblastoma.
“It flipped our world upside down,” Chris Gonyar said. “We’re trying to take things day by day right now. She’s doing great right now, so that’s what were leaning on.”
Chris Gonyar said parents who notice an odd reflection in one photo don’t necessarily need to race to the emergency room, but he did advise parents to trust their instincts.
If parents have noticed the reflection or something odd with their child’s eyes, it’s not a bad idea to push for a test, he said.
“Since it is so important to catch it early, I think it would be absolutely fair at a first checkup with your pediatrician to ask them to take a deeper look,” he said.