Following her interests, Emilia has earned a gold belt in karate. She’s learning gymnastics. She swims. She loves to romp with Daisy, her black cocker spaniel. And while most people don’t even notice that one of this little girl’s shining dark-brown eyes is different from the other, Emilia shares her story with a few. “I tell my teachers and my friends that I have a special eye,” she says.
In 2005, Sandy and Cristina McKibbin had never heard of retinoblastoma (RB), a malignant tumor of the retina (the back of the eye) that mainly affects young children. Like their son William, their almost-two-year-old daughter Emilia was a healthy and happy child. When a family friend noticed a white spot in Emilia’s left eye, no one panicked.
“Then one afternoon Emilia and I were in the basement, watching television,” Cristina remembers. “In the darkness her eyes were really dilated, and I saw the spot myself. My heart sank. I knew something was wrong.”
Her foreboding intensified when Cristina called a nearby ophthalmology group. Initially told that she would have to wait several months for an appointment, she described the spot in Emilia’s eye. That brought a different response: “Come in tomorrow morning.”
Emilia’s Friday appointment resulted in an immediate referral to the Emory Eye Center—and also an immediate appointment with Baker Hubbard, Thomas M. Aaberg Professor of Ophthalmology, a pediatric ocular oncologist. Cristina had steeled herself for a possible diagnosis of blindness in the left eye, but she was shocked by Dr. Hubbard’s news: “He said, with so much compassion, ‘I’m going to tell you something that’s very hard to hear. Emilia has a very aggressive form of cancer, and we will have to remove her eye.’”
The Emory Eye Center’s oncology team acted quickly: Emilia was scheduled for surgery on Monday morning. “The good news from our pathologist,” Dr. Hubbard recalls, “was that the tumor hadn’t invaded the optic nerve, so Emilia didn’t require chemotherapy.”
Retinoblastoma, though a rare form of cancer, is the most common cancer of the eye of children. It occurs in one in 20,000 live births and comes in two equally malignant forms. In about one-third of the cases, the disease is hereditary and can be passed down from one generation to another; it can affect both eyes and sometimes other organs as well. Emilia’s cancer was the more common non-hereditary form that typically affects only one eye. Thanks to medical advances, RB—previously fatal—has now surpassed a 95% survival rate in the United States.
Throughout Emilia’s treatment and follow-up, Cristina says, every person at the Emory Eye Center has been extraordinarily helpful and kind: “I can’t say enough good things about them. Everything is done so well there—you always feel they know you and care about you. A visit to Dr. Hubbard’s office is like a family reunion.”
The Emory Eye Center “family reunion” encompasses a huge group of parents, children, and staff members each year on RB Kids Day, when families who’ve faced an RB diagnosis come from throughout the Southeast and beyond to play together, share stories, and celebrate. Though the event receives some external funding, Dr. Hubbard says, “For the most part, it’s funded straight from the pockets of people who work in the Eye Center.”
Emilia, who has attended RB Kids Day for several years, lists her favorite activities—“jumpy castles, face painting, making sand bottles, and riding the ponies”—and also remembers receiving passes for a thrilling trip to see the animals at Yellow River Ranch.
A great lover of all animals, from those at the Ranch and her dog Daisy to the stuffed deer head on her bedroom wall, Emilia is also a voracious reader. She’s now zipping through a big book on raising kittens, and says she’d like to be a veterinarian when she grows up.
“We let her try everything, because we want her to be confident,” Cristina says. Emilia and William, both bilingual, are preparing for a two-month visit to their grandparents in Uruguay, where they will also attend school.
Cristina continues, “When you hear your child diagnosed with RB, at first you think the whole world has come to an end. But soon we realized that Emilia could still have a full and happy life. And I decided I would do exactly what my mother did for me: Every single day, I tell Emilia how beautiful she is.”
For more information about
retinoblastoma, visit www.eyecenter.emory.edu/eye_conditions/retinoblastoma.htm or
eye to eye | If a photograph of your young son or daughter shows a white spot in one or both eyes, it doesn’t necessarily mean retinoblastoma. But you should definitely have it checked out. Any abnormal appearance in your child’s eye is a warning sign, and early detection can save that little person’s vision—even her life.
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