All together: Siblings both overcome retinoblastoma

In some ways, PJ and Jovi Fisher couldn’t be more different. PJ, 9, is quiet, laidback, and loves playing Minecraft and other video games. Younger sister Jovi, 8, is outgoing and obsessed with all things Harry Potter. But there are similarities, too: Both are tall, both enjoy playing soccer — and both were diagnosed with a rare type of childhood eye cancer called retinoblastoma.

The Fishers are no strangers to retinoblastoma. PJ and Jovi’s father, Paul, also had the disease as a child and was treated at Boston Children’s Hospital. When PJ began to exhibit symptoms of retinoblastoma as a baby, testing revealed that he had tumors in both of his eyes.

A second challenge

Fortunately, this type of cancer is highly curable, especially if it hasn’t spread beyond the eye. At just 3-and-a-half months old, PJ began chemotherapy at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center. The process went smoothly, says the siblings’ mother, Kate. “He did really well; you couldn’t even tell he was undergoing treatment.”

But the Fisher family was about to grow. Because of PJ’s condition, the Fishers had already been working closely with Jaclyn Schienda, lead genetic counselor in the Pediatric Cancer Genetic Risk Program. When Kate became pregnant with Jovi, Schienda helped guide them to the proper prenatal screening tests and supported them during the pregnancy. She also referred the family to Boston Children’s Maternal Fetal Care Center, where fetal MRI scans confirmed a lesion in Jovi’s right eye.

It’s support that the Fishers are grateful for. “Things felt like a blur during this time,” says Kate. “This team was such an important resource for us to have on our side.”

Making a difficult decision

When she was 1 week old, Jovi began her own chemotherapy journey for retinoblastoma with Dr Junne Kamihara. Unlike her brother, “We could tell she just didn’t feel well,” says Kate. As time passed, Jovi began to recover from treatment — but PJ experienced more challenges. Despite chemotherapy, proton radiation, and other approaches, the tumors in his eyes ultimately continued to grow. His left eye was particularly resistant to treatment.

Concerned that cancer might spread beyond his eyes, Dr. Deborah VanderVeen, PJ’s ophthalmologist at Boston Children’s Ocular Oncology Center recommended that his left eye be enucleated. In this procedure, the affected eyeball is removed, then later replaced with a prosthetic eye.

“We fought so hard to avoid enucleation, but in the end, it was the right choice,” says Kate.

Busy being kids

Today, both PJ and Jovi are cancer free and have annual check-ins with Dr. Kamihara. Because intraocular retinoblastoma typically occurs before age 6, they are in the clear for further tumors of the eyes. As they get older, they’ll continue to talk with the team about early detection to look for other cancers and with a genetic counselor about the potential for their own future children to inherit the disease. Fortunately, early detection of retinoblastoma and treatments continue to improve, so that more vision and eyes are saved for children with this condition.

Jovi has good vision in one eye and partial vision in the other. She recently had surgery with Dr. VanderVeen to correct strabismus, and loves showing off her new glasses. PJ also wears glasses and has adapted to his enucleation; he’s starting to think about prosthetic designs. “He knows he looks different and we’re still working on his confidence,” says Kate. When he’s ready, he can choose from cool options inspired by dinosaurs, superheroes, and the like.

For now, PJ and Jovi are just busy being kids. This past summer, they visited Disney World and camped their way back up the East Coast to their home in Massachusetts. “Things were scary when they were younger,” says Kate. “Now we’re trying to enjoy it all.”

Learn more about the Ocular Oncology Center.