Personalized care for optic nerve gliomas helps Addison feel like ‘the star of the show’

Addison Gould loves visiting with her friend Tom. Every time her family makes the drive to Boston from their home on Cape Cod, the 5-year-old can’t wait to see him. “She runs across the bridge from the parking garage to clinic,” laughs her mother, Jillian. “I’ve never seen a kid so excited to go to the hospital.”

“Tom” — or “Dr. Tom” — is Dr. Tom Rosenberg, a pediatric neuro-oncologist in the Brain Tumor Center at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center. He’s been treating Addison since mid-2020, when she was diagnosed with an optic nerve glioma, a type of brain tumor that forms in or around the optic nerve, which connects the eye to the brain.

One diagnosis — and then another

Addison has been coming to Boston Children’s since she was just 6 months old, when she was diagnosed with neurofibromatosis 1 (NF1), a genetic condition that causes symptoms including tumors that form from nerve tissue. During one of her regular checkups in the hospital’s Multidisciplinary Neurofibromatosis Program, Dr. Nicole Ullrich noticed that one of Addison’s eyelids looked different.

Further testing, including an MRI scan, revealed the cause: an optic nerve glioma behind each eye. These tumors are fairly common in children with NF1 and sometimes don’t require treatment. But after monitoring Addison with MRI scans and quarterly vision exams, Dr. Ullrich found that the tumor in her left eye had grown significantly. She referred the family to the Brain Tumor Center.

Making a treatment decision

That’s how Addison met Dr. Rosenberg. He offered her family two choices: intravenous chemotherapy or an oral medication that was being studied as part of a clinical trial. Because Addison had trouble swallowing pills consistently, her parents opted for chemo.

After 14 months of treatment, the tumors had stopped growing, but her vision hadn’t improved. In fact, her ability to perceive light and dark had declined. Factoring in the side effects Addison had experienced from chemo, Dr. Rosenberg and her parents decided that it was time to try the experimental medication instead.

Taking the pressure off

Since March 2022, Addison has taken the twice-a-day medication — supported by a training video that helped her get used to swallowing pills by practicing on candy. “She’s learned really quick and takes the pill like a champ,” says Jillian. The results so far have been positive: Although her vision hasn’t improved, the vision loss has leveled off.  Addison still has “perfect” vision in her right eye, according to tests by her neuro-ophthalmologist, Dr. Gena Heidary. The family and their care team plan continue to monitor closely to evaluate her progress with this treatment. 

Meanwhile, Addison is in high spirits, whether she’s coloring or playing with her dollhouse. And her friendship with Dr. Rosenberg might be having a lasting effect: Her favorite toy is a doctor kit, and she loves covering her stuffed animals with Band-Aids. “She has to have a lot of tests, and 5-year-olds can be moody,” says Jillian. “Dr. Tom has a great way of keeping things feeling carefree and fun for her, without the pressure.”

With check-ins every three months, Addison is no stranger to the hospital. But her grandmother was still amazed when she accompanied Addison to a recent appointment and saw how the care team greeted her with excitement. “They make Addison feel like the star of the show,” says Jillian. “They help every kid feel special and seen.”

Learn more about how we care for kids like Addison in the Brain Tumor Center.