Her eye’s on the future
Published 12:55 am Saturday, December 6, 2008
The notebook in front of her simply tells her story, “Julie-Layton Bryan. Retinoblastoma.”
The 5-year-old kindergarten student at Straughn Elementary School, who loves beauty pageants and riding her bicycle, is very candid about the cancerous disease that could rob her of her left eye.
“I got sick in my eye,” Julie-Layton said. “I got retinoblastoma. I learned to say it coming home from Montgomery the other day. I knew what I had and I said it straight out of my mouth.”
To look at her, one wouldn’t think she has cancer. Her eye is a little glassy and red around the eyes, like she had been rubbing it too hard, but she does have cancer — a tumor, in fact, that covers 50 percent of her retina, making it nearly impossible for her to see out of that eye. Additionally, the rest of the retina is covered with “seed,” or portions of tumor that have broken off.
Retinoblastoma is a rapidly developing cancer that develops in the cells of the retina, the light sensitive cells of the eye, and it is curable. Bryan’s mother, Stephanie, who is a teacher at Straughn High School, said the easiest way to explain the cancer is, “when you take a picture and you see someone with a red eye — that’s a healthy eye. When you see one that has white eyes, that’s retinoblastoma.”
That is exactly how the Bryans discovered Julie-Layton had the disease, Stephanie said.
“On Nov. 8, Julie participated in a local pageant to crown this year’s winner,” she said. “We had noticed recently, like within the last two weeks, some straying of her left eye and it was really obvious in pictures from the pageant.”
That following Monday, the Bryans called their eye doctor in Montgomery and he was able to work them in on Tuesday.
“Really, we just expected some glasses,” she said. “Never were we expecting to hear the word ‘cancer.’”
Stephanie said, in the U.S., there are only five treatment centers, and their doctor, Dr. Massey, recommended a center in New York — a 1,200-mile trip from their Florala home.
Less than a week after being diagnosed with the curable disease, the Bryans were on a plane set to see Dr. Abramson at Memorial Sloan-Kettering Cancer Center in New York.
The family was told that in order to save Julie-Layton’s eye, she would have to receive chemotherapy every three weeks in New York City.
The treatment, called intra-arterial chemotherapy, is experimental, but doctors are optimistic that Julie-Layton will respond well.
The Bryans said they were lucky, because their eye doctor had just returned from a conference dealing with disease and could lead them in the direction they needed to go.
“It’s really amazing,” said Brad Bryan, Julie-Layton’s father. “Dr. Massey, who is the eye doctor in Montgomery, had just been to a conference where Dr. Abramson had spoken on retinoblastoma.
“Usually, he said he would send people to Philadelphia for treatment,” he said. “Odds are they would have taken her eye (out) since New York is the only place that is doing this type of treatment.”
And since the type of chemotherapy Julie-Layton is undergoing is experimental — not to mention out of the insurance network since it is in New York — it is unknown if the Bryan’s’ insurance will cover the costs of the treatment.
That fact may prompt many to wonder why the family would elect to undergo expensive experimental treatment.
“The way the doctor explained it to us is that this type of cancer is treatable and curable,” Brad said. “If the treatment doesn’t work, they can take her eye and boom, no more cancer.”
“But,” Stephanie said, “we didn’t want to look at her when she was 15 and say we didn’t try to save her eye. We had to try.”
And besides, Brad said, they could always make payments to the doctor.
“We can make payments on the car and the house, so why not one more to the doctor?” he said. “The important thing is that it is curable.”
The family will travel back to New York next week for the second of eight rounds of chemotherapy, and the expenses are mounting.
The flight for the family of three is nearly $2,000 each trip, not to mention food and other expenses. Luckily, the family is able to stay in the Ronald McDonald House, so there are no lodging costs. However, that total does not include the yet unknown costs of the doctor bills.
But the financial costs are no “biggie,” Stephanie and Brad said.
“The biggie is that Julie is going to be just fine,” Stephanie said. “It’s not life threatening.”
Brad said, “Really at this point, it doesn’t matter how much it all costs. It’s curable. If they have to end up taking her eye, the doctor said she can do anything but fly for the Navy.”
Either way, Julie-Layton said she knows she’s going to be fine.
“God and Jesus help us,” she said. “They help my eye. The doctors put the medicine up my leg to my eye and it’s going to take (the cancer) away from my eye.”
And while the journey for the Bryans is not over, they know it will be a little easier after the community support they have received.
“Everyone has been so fantastic,” Stephanie said. “We couldn’t begin to tell you about all the wonderful things people have done for Julie.”
To make donations to help the Bryan family, contact any Wachovia Bank. An account has been set up under the name “Julie-Layton Bryan.”
Julie-Layton’s story is online on www.caringbridge.org/visit/julielaytonbryan.