When you first meet 6-year-old Karli Costley, the first thing you notice is her big, blue eyes.
In 2008, Karli’s mother looked into those big, blue eyes and she knew there was something wrong with her daughter.
“You would catch a little bit of a glow in her eye when she would look at you a certain way,” said Amy Costley, Karli’s mother. “It just flashed at you, kind of like when you see a cat in the dark, and you catch that shine in their eye.”
When the family was out to dinner near their Mt. Juliet, Tenn., home, Costley, a nurse, tried covering Karli’s eyes, who was then 3-years-old.
“I turned her around and said, ‘Where is daddy?’ and she pointed way off from where he was,” Costley said. “I kind of went towards her eye to touch it and she didn't blink at all, and so I think I pretty much knew at that moment, something is very, very wrong here.”
Costley and her husband, Kevin, called their doctor immediately.
“When they dilated her eyes the next morning, there was no question,” Costley said. “You could see it.”
Two days later, a retina specialist confirmed that Karli had retinoblastoma in her left eye.
After hearing from a number of doctors, the Costleys were told that Karli’s left eye would have to be removed, and that she may need systemic chemotherapy after.
“I mean it's very surreal, picturing our baby losing one of these God-giving, big, blue eyes and having that very thing about her that was notable to everyone becoming the very thing about her that was notable to everyone in a another way,” Costley said.
Karli was about to have surgery to remove her eye, when her doctor asked if her parents wanted to know more about intra-arterial chemotherapy, a treatment mostly done in Japan.
But the procedure wasn’t so far out of reach.
Dr. David Abramson, the chief of ophthalmic oncology service at Memorial Sloan-Kettering Cancer Center in New York City, and his team had been performing intra-arterial chemotherapy on children with retinoblastoma since 2005.
“We basically just said we have to do what we have to do to make this work and at least give her a chance,” Costley said.
Abramson met with the Costleys the next week and after careful evaluation, Karli was approved for the treatment.
“We were afraid he was going to turn us down— he had told us that Karli’s tumor was larger than what he likes to take, but he would give it a shot,” Kevin Costley said.
Intra-arterial treatment, which is only five years old, delivers a very high concentration of chemotherapy to the cancer while delivering a lower load of chemotherapy to the patient.
The treatment is delivered directly into the eye through a tiny catheter –about the size of a piece of hair—which is placed in the groin. The procedure is extremely delicate.
“What we didn't realize when we started is that it would actually save eyes that we, and everyone else, had been removing for years,” he said.
Abramson had removed more than 1,000 eyes in children with retinoblastoma before starting the intra arterial procedure.
Retinoblastoma occurs in about 300 children every year in the United States.
“It's almost always picked up by a parent, and it's almost always picked up by the mother, and what the mother notices is that in the black pupil of the eye, she sees a white or creamy color, and although she may not recognize it at the time, she's actually seeing the cancer itself,” Abramson said.
One hundred years ago in the United States, this cancer killed nearly all of its victims.
After receiving intra-arterial chemotherapy at Sloan-Kettering, 98 percent of children survive; 90 percent retain at least one eye and 90 percent of them have 20/20 vision.
Abramson said Karli will be able to use her vision just as anyone else would.
“She will be able to drive a car,” he said. “She will be able to fly a plane. She'll be able to be anything she wants to be and with her family, she will be something.”
People still can’t help but notice Karli’s blue eyes.
“If we go somewhere public, it's every, you know, 10 minutes, someone will say something to her and that's kind of always been that way and of course, now I try and remind her that that is your way to tell your story,” Costley said. “You know, we have a lot of people to thank for the fact that you have these beautiful blue eyes.”
And Karli has something she would like to say – to Abramson:
“Thank you for saving my eye.”