Catching up with Poppy: Life after an eye tumor

retinoblastoma
Poppy with her little sister Hazel (Courtesy of Dana Biagini)

When Poppy Biagini was just four months old, her family got news no parent wants to hear — that she had a rare, rapidly growing tumor in her right eye called a retinoblastoma.

That was almost three years ago. But if you looked at Poppy today, you’d be hard pressed to tell that she’s anything other than your average 3-year-old who loves Curious George, swim class and playing dress-up.

“She knows that there’s something a little different with her eye than everyone else’s,” her father Dana says. “But she’s handling it well.”

Retinoblastoma is really rare; only about 300 children in the U.S. are diagnosed with it every year. But it does have a telltale sign: in photos, instead of red eye a child with a retinoblastoma will have a flash of white in the back of the eye.

After finding the tumor, Poppy’s care team — including Boston Children’s ophthalmologist Dr. Ankoor Shah, neurointerventional radiologist Dr. Darren Orbach and oncologists from Dana-Farber/Boston Children’s Cancer and Blood Disorders Center — recommended she receive a kind of treatment called intra-arterial (IA) chemotherapy.

Poppy and Dana (Photo courtesy of Dana Biagini)
Poppy and her father, Dana, during her intra-arterial chemotherapy treatments (Courtesy Dana Biagini)

Treating retinoblastoma

Three times over four months, Orbach threaded a very thin catheter from an artery in Poppy’s groin all the way up through the blood vessels into the head, right to the main artery at the back of her eye. The process let Orbach deliver a concentrated dose of chemotherapy straight to her tumor, keeping the side effects of treatment low and the chances of salvagPoppy_Biagini_360x544ing the affected eye high.

And salvage it they did, though Poppy still has some lingering vision problems. The remains of the tumor are still in her eye, so she has no central vision on her right side. But her peripheral vision is strong. She also has a little bit of a lazy eye, which her family and doctors are monitoring.

“If it wasn’t for the lazy eye, you wouldn’t know anything had been wrong,” Dana says. “You can’t tell.”

As Poppy gets older, she’s started to notice a difference, though. “She does ask sometimes, ‘Why can’t I see as good out of this eye? What happened?'” Dana explains. “It’s getting harder to tell her about it.” He adds that Shah, who still checks Poppy regularly, recommended she talk to a psychologist to make sure that she understands what makes her different and why.

Late last year, Poppy’s family got a little bigger with the arrival of her little sister Hazel. Wanting to make sure they avoided a repeat of Poppy’s experience, as soon as she was old enough, the Biaginis had Hazel’s eyes checked. The result: all clear.

“The chances of Hazel having retinoblastoma also were almost impossible, because Poppy’s wasn’t a genetic problem,” Dana explains. “We were a little nervous at first, and once Dr. Shah took a look we were relieved. But it’s always in the back of our minds.”

They family comes to Dana-Farber/Boston Children’s for regular follow-up visits to make sure that Poppy’s tumor doesn’t return.

“For the last two and a half years it’s been fine, no change,” Dana says. “The tumor is still in her eye, and it shouldn’t come back, but that’s why they do the exams.

“Every six months we go in for the appointments, and it’s a little stressful,” he adds. “You hope that each appointment is the same as the last ones. And so far, so good.”

Learn more about how Dana-Farber/Boston Children’s treats retinoblastoma.