Trying to keep sight
SALISBURY — The first sign that something was wrong with baby Akira, her mother Kenyetta Taylor said, was how the light shone in her eye.
Akira, now 21 months old, was born in August 2011. In almost every respect, she was a happy, healthy baby — “perfect,” her father, Phil, said.
But, when the light hit her right eye in a certain way, there was a reflection.
“They call it the cat’s eye, or leukocoria,” Kenyetta said. “That’s what set off alarm bells for my husband.”
On April 15, she took Akira to a local pediatrician who saw, but couldn’t pinpoint the cause of the color change.
The next day, a cancer specialist in Concord examined Akira’s eye, and delivered the bad news.
“You never expect to hear someone say your child his cancer,” Kenyetta Taylor said, as she and husband Phil sat in the living room of their home on Thursday.
But an emergency MRI and CT scan the following day confirmed the specialist’s diagnosis.
Akira has retinoblastoma, a rare cancer of the cells that form the retina within the eye.
It is a rare form of cancer, affecting about one out of 20,000 births.
Caught early, it can be treated and cured. Left undetected, the cancer typically develops and spreads rapidly.
Thankfully, Akira’s tumor was caught in an earlier stage. Otherwise, Kenyetta said, “she might not have made it to five years old.”
The next two weeks were a whirlwind. The Taylors went to the Duke Cancer Center for examinations, and Kenyetta said they were presented with two options:
Chemotherapy could shrink the pea-sized tumor in Akira’s eye so that it could be destroyed, but could also have serious side effects and complications in one so young.
Or, they could choose enucleation — removal of the eye — which takes away the risk if the cancer has not yet spread.
Then again, about a third of children go on to develop the cancer in the other eye as well. If that happened, Akira could grow up blind.
To see her in the living room of the Taylors’ home — running in and out, laughing, carrying favorite toys around — you wouldn’t know anything was wrong. She laughs and smiles a lot, and has no trouble getting around the room.
“Her right eye is functioning,” Kenyetta said. “She has some vision in it.”
So, the Taylors started searching online, trying to find out if there was an alternative.
“When she grows up, we want to say we did everything we could to save her eye,” Kenyetta said.
While they searched online, reading everything they could about retinoblastoma, they found out about Dr. David H. Abramson.
Dr. Abramson is chief of the ophthalmic oncology service at Memorial Sloan-Kettering Cancer Center in New York, and one of the doctors who has found success with a technique called intra-arterial chemotherapy.
In a phone interview, Abramson said he heard about Akira “almost simultaneously” from both the staff at Duke Cancer Center, looking for guidance on her case and the Taylors themselves, who had found his contact information online.
On Wednesday, May 1, Phil sent a photo of Akira’s eye scans from North Carolina.
On Friday, May 3, the Taylors were in New York.
Phil said they aren’t wealthy — “we live paycheck to paycheck” — but his employer, an aviation services company in Greensboro, allowed him time off so they could have Akira examined.
A month later, Abramson and his colleague Dr. Pierre Gobin, of New York Presbyterian Hospital Weill Cornell Medical Center, are providing hope that Akira’s eye might be saved.
Intra-arterial chemotherapy, Abramson said, is specialized, targeted treatment.
Originally, radiation was used to kill retinoblastoma tumors, Abramson said, but the therapy increased the chance of other deadly cancers later in life.
The alternative, systemic chemotherapy instead, has many side effects, Abramson said.
“And, since the eye represents less than one percent of the weight of the body, that means that 99 percent of the drug was going to places that you didn’t want it to go,” Abramson said.
In general, chemotherapy alone isn’t enough to cure cancer, he said.
“Cancer cells are clever, mischievous and devious,” Abramson said. “The way they get to be cancer cells is they learn how to survive.”
The technique Abramson and Gobin use involves inserting a catheter into an artery in the groin, running it through the body to the single blood vessel that serves the eye.
“The dose of chemo is lower than the dose of Tylenol your kid gets if he has a cold, but locally, it’s an extremely high concentration,” Abramson said.
Abramson said he and his colleagues have performed the technique more than 800 times in the last seven years.
Once the chemotherapy shrinks the tumor, it can be destroyed by a laser, a cryogenic probe or other means, without harming the rest of the eye.
“And of all of those patients, we have no patients who have had a death or complication from the procedure itself,” Abramson said. “Overall, about 90 percent of the eyes we’ve treated, we’ve been able to save.”
As for Akira, “I would say we saw her at a stage when we think we can save life, cure the eye and save some vision,” Abramson said.
The idea for this treatment is not new, and didn’t start with him, Abramson said.
But, he added, the successful intra-arterial chemotherapy procedures used on retinoblastoma required years of study and the development of new technologies and drugs.
Looking forward, Abramson said, there is hope that this procedure might help save the lives of people with other types of cancer, such as spinal tumors and brain tumors, “where surgery is difficult without complications.”
The technique could also be used to deliver radioactive particles, or particles that are only activated by localized heat, instead of just chemotherapy drugs, Abramson said.
“It’s absolutely amazing,” said Gobin, who performed the actual intra-arterial procedure on Akira Taylor on May 13.
“Rarely does a physician have a chance to change a disease so profoundly,” Gobin said.
At one time, Gobin said, 80 percent of retinoblastoma cases resulted in enucleation.
Today, he said, treatments have reduced that rate to 20 percent. “So, we have reversed the proportion of the eyes we can save,” Gobin said.
While the procedure itself went well, Akira has experienced side effects, family members said.
Her white blood cell count dropped to alarmingly low levels before her body began to recover.
In fact, Phil said, Akira had been scheduled to have her second dose of chemotherapy today, but it was canceled for that reason.
Locally, the Taylors have been getting assistance from the Levine Children’s Hospital at Carolinas Medical Center.
The biggest worry is that Akira, whose immune system is depressed by the first round of chemo, might become ill.
“That’s why we have bottles of hand sanitizer everywhere. That’s why we just got a new washer and dryer,” Phil said.
“We have become part-time doctors, learning about blood counts,” Kenyetta said. “We know the treatment works, but we want to make sure that the treatment works.”
There’s also the cost factor. On Saturday, Kenyetta said, they got the first medical bill for Akira’s treatment: $48,000.
“Our jaws are still dropping,” Kenyetta said.
The Taylors have gone online to try to raise funds, and Kenyetta said Wells Fargo bank has set up an account for the family, the Akira Taylor Foundation, to accept donations for medical and travel expenses.
Abramson said the average retinoblastoma patient needs three intra-arterial treatments to shrink the tumor, while some require as many as 10 doses.
The Taylors are returning to New York next week, regardless, for another checkup, Kenyetta said.
“This first treatment was a test,” Phil said. “If (the tumor) shrinks, we’ll get a better understanding. It could be six months, three months, a year.”
Then, he said, Akira will have check-ups every six months for the next five years, and annual check-ups indefinitely.
Kenyetta said they’re trying to keep things in perspective.
“I try to tell myself, ‘There are kids out there who know they won’t live past 10 years old,’” Kenyetta said. “Life is too short. We want to cherish each moment with her.”
At the same time, she hopes parents will take time to check their children’s eyes for the “glow,” or other warning signs of retinoblastoma.
She said she and Phil feel blessed to have learned what they learned about their daughter’s cancer.
“We’ve been led the whole way. I don’t think there’s any way we would have come across this on our own,” Kenyetta said. “God’s put in overtime for us.”
Contact Hugh Fisher via the editor’s desk at 704-797-4244.