Behind a Baby's Smiles: A Family's Generational Battle with Rare Cancer

Remington Still loves his stuffed animals, crawling through the house and splashing in the pool. In many ways, he’s a typical 1-year-old boy. But behind the giggles lies a battle few toddlers face: bilateral retinoblastoma, a rare cancer that doctors at Baptist Health Miami Cancer Institute are treating in the hopes of saving his eyes and his vision.

Understanding Retinoblastoma

Retinoblastoma originates in the retina, the inner layer at the back of the eye that captures light and transforms it into signals that the brain processes as visual images. Only 200 to 300 children in the U.S. are diagnosed with retinoblastoma each year, according to the American Cancer Society. About one in four cases — like Remington’s — occurs in both eyes, which is known as bilateral retinoblastoma.

“Retinoblastoma causes lesions, or tumors, to develop,” says pediatric hematologist/oncologist Doured Daghistani, M.D., with Miami Cancer Institute. “We use chemotherapy to shrink the lesions and to prevent them from metastasizing to another area, and we can use local treatments like lasers to destroy the cancer cells.”

Early diagnosis of retinoblastoma is critical for preserving vision, according to Dr. Daghistani. “Treatment aims not only to save the child’s life and eyes, but to protect their sight as well,” he explains.

Mother’s History Leads to Early Detection

Remington was diagnosed when he was just 6 months old. Because his mother, Taylor Still, had lost one eye to the condition as a child, she and her husband, Hunter, had lined up an evaluation with a vitreoretinal specialist near their home in Central Florida even before Remington was born.

“I was 3 when I was diagnosed,” Ms. Still says. “My parents said I never brought anything up to my right eye and they thought it was odd, so we went to the doctor. I lost my right eye, but they were able to save my other eye.”

Although Remington’s first eye exam was normal, the doctor detected an abnormality at the next appointment, and he referred the family to Timothy Murray, M.D., a comprehensive ophthalmologist at the Institute. It was the same physician Ms. Still had been treated by years before.

“It wasn’t the way I wanted to be reunited with Dr. Murray,” she admits. “But everyone at the Institute has been the best. So sweet.” Remington loves the doctors, nurses, social worker and child life specialist, not to mention the new toy he is given at each visit, she says, laughing.

Coordinated Treatment Approach for Retinoblastoma

Dr. Murray and Dr. Daghistani work hand-in-hand, with Dr. Murray doing an eye exam while Remington is under anesthesia and then performing transpupillary laser ablation if lesions are seen. Dr. Daghistani handles chemotherapy. They’re also in close communication with Remington’s physicians in Central Florida.

“Remington’s treatment consists of nine cycles of intravenous chemotherapy, one every four weeks, at Miami Cancer Institute,” Dr. Daghistani says. “He has a port for the chemotherapy. If all continues to be well, he’ll have his last chemotherapy next month. When we finish, sometimes patients still have small lesions that Dr. Murray continues to treat.”

 One-year-old Remington Still was treated for retinoblastoma by experts at Baptist Health Miami Cancer Institute

If left untreated, the tumors grow, eventually filling much of the eye and sometimes spreading to the brain. Bilateral retinoblastoma often comes from a hereditary condition caused by a defect in the RB1 gene. Ms. Taylor’s paternal grandmother lost an eye as a young child, but the cause was either not determined or not shared with her. Her father, however, was not affected.

For many children who have retinoblastoma, there is no family history. There is also no known prevention. Retinoblastoma occurs about equally in boys and girls and appears across different ethnicities.

Seeing a Bright Future for Her Toddler

Remington comes out of treatment a little cranky and tired, his mother says. But his prognosis is good. “The goal is to keep the eye. Having a prosthetic eye myself, it’s not something I want for him. And so far, his vision is good.”

He will continue to be followed regularly by the doctors to ensure that there is no recurrence, and, if something is found, a quick laser treatment will usually take care of the problem, Dr. Daghistani says. “As soon as you find the tumor and zap it, that’s the end of it.”

Remington’s parents are looking forward to their son’s next milestones. “He’s a scooter and is so fast that he doesn’t want to walk yet,” his mother says. “When I tell him not to go a certain way, that’s where he immediately heads and he giggles along the way. He’s a sweet, kind and loving little boy.”

September is Childhood Cancer Awareness Month. Click here for more information on pediatric cancers and the treatments available at Baptist Health Miami Cancer Institute.

Doured Daghistani, M.D., a pediatric hematologist/oncologist with Baptist Health Miami Cancer Institute

Timothy Murray, M.D., a comprehensive ophthalmologist at Baptist Health Miami Cancer Institute