Madison’s journey with retinoblastoma: ‘Everything will be OK’

Girl with retinoblastoma after surgery to remove eye
Madison in 2018

It was New Year’s Eve, 2011, and Madison Garrett was a seemingly healthy 2 ½-year-old when she suffered a grand mal seizure at home. That night, at their local emergency room, Barbara and Tim Garrett were told that their daughter had instead a mild seizure as a result of a fever. They knew something wasn’t right, because their oldest daughter had experienced seizures.

On top of the seizure, Barbara was beginning to suspect something was wrong with Madison’s eye. Two days later they took her to their local pediatrician, but before they even left his office, Madison had another seizure. A second trip to the ER revealed that Madison had retinoblastoma, a rare childhood cancer of the eye.

Barbara fainted when she heard the diagnosis.

“Before her seizure, I had been noticing that her right eye was changing color, like the cloudiness of a cataract,” says Barbara. “That’s what doctors refer to as ‘the retinoblastoma glow.’” At that time, Madison only spoke sentence fragments, but in retrospect Barbara realizes her daughter had tried to describe that her vision was poor by expressing her fear about “the dark-dark.” “Not realizing what was going on, I had been insisting that she sleep in her own bed,” Barbara spoke of her regrets. “Madison bumped into things, too, but we thought that was a toddler thing.”

Retinoblastoma: Diagnosis and treatment

The Garretts were referred to Dr. Deborah VanderVeen, an ophthalmologist at Boston Children’s Hospital. VanderVeen told the family that Madison was blind in one eye, due to a large retinoblastoma tumor, and that there was a risk the tumor might grow through the outer layer of her eye. With no vision to preserve, the best treatment option was surgery to remove the eye completely.

Retinoblastoma worsens rapidly, but with our expertise and experience in ocular oncology, we are able to diagnose, plan and start treating patients within a day or two of diagnosis. ~ Dr. Efren Gonzalez, director of Boston Children’s Department of Ophthalmology’s Ocular Oncology Service

Having the disease removed, rather than treated, was not a difficult decision for the Garretts. “I asked, ‘Where do I sign to have that tumor taken out immediately?’” recalls Barbara.

Just weeks after diagnosis, VanderVeen performed the enucleation surgery to remove Madison’s eye. Afterwards, the family learned that the disease had spread to the optic nerve, so Madison underwent a 6-month course of chemotherapy and five weeks of proton radiation therapy. The radiation was especially difficult on Madison, but she was a fighter throughout it all.

Madison is thriving after retinoblastoma surgery
Before and after surgery: Madison with “the retinoblastoma glow” and with her new prosthetic eye.

Recovery after surgery

After surgery, Madison was fitted for a prosthetic eye at Jahrling Ocular Prosthetics, a family-run business in Boston. They hand-painted the artificial eye right in front of Madison to ensure accuracy, and Barbara remembers Madison impulsively asking the man to “make it purple.” “The poor guy looked over at me, and I said, ‘Go ahead, let her have some fun with it!’” says Barbara.

Genetic testing after surgery revealed that Madison had a mutation in her RB1 gene causing the retinoblastoma, which means that tumors could recur at any time and that Madison’s children may inherit the gene mutation as well.

Seven years later, Madison still goes for yearly MRIs, exams and tests to keep her healthy. In the years since her diagnosis, she’s had one small tumor, which VanderVeen treated with cryotherapy. Today, the confident 9-year-old wants to encourage other kids with retinoblastoma. “Although things might seem scary,” she says, “Everything will be OK.”

Learn more about Boston Children’s Department of Ophthalmology.