Retinoblastoma Program

Patient Stories | Owen and Retinoblastoma

Owen’s Story: How a Toy Doctor’s Kit Led to a Rare Cancer Diagnosis

The first signs of a problem came on Owen’s third birthday. His grandma gave him a toy doctor’s kit as a gift, and while Owen and his mom, Chelsea, played with the eye chart, Chelsea noticed Owen became frustrated when she covered his right eye and asked him to use his left to read the letters.

“He kept saying, ‘I can’t see, I can’t see,’” Chelsea said. “I’d tell him, ‘You can do it, buddy. You just did it with your right eye. Now do it with this one.’”

After the same thing happened three days in a row, Owen’s dad, Andrew, suggested they make an eye appointment.

Chelsea and Andrew took him to an eye doctor in Miamisburg near their home in Carlisle, Ohio. She referred Owen to Cincinnati Children’s, anticipating they’d likely hear from someone in a few weeks to schedule an appointment. But an hour later, the doctor called again. She told Chelsea that Cincinnati Children’s could see Owen on Monday, and they should take the day off work.

“That’s when we started panicking,” Chelsea said.

Quick Answers and a Treatment Plan

At Cincinnati Children’s, an exam revealed a mass in Owen’s left eye. Additional testing confirmed he had retinoblastoma, a cancer that develops in the retina—the light-sensitive tissue at the back of the eye.

Thankfully, the cancer was confined to Owen’s left eye and had not reached his right eye or brain.

“That was the silver lining,” said Raehannah Jamshidi-Nezhad, MD, PhD, a pediatric oncologist who leads Cincinnati Children’s retinoblastoma team, which also includes Zeynep Gursel, MD, a pediatric ocular oncologist and Sudhakar Vadivelu, DO, a pediatric neurosurgeon.

Although the cancer hadn’t spread, Owen’s case was complex. The tumor had released many tiny clusters of cancer cells, known as vitreous seeds, into the gel-like substance filling his eye.

“There were so many seeds we couldn’t even see the back of the eye,” Dr. Gursel said. “It looked like a white cloud.”

The retinoblastoma team met with the family and outlined their proposed treatment plan: a combination of chemotherapy delivered straight to the arteries behind the eye, called intra-arterial chemotherapy, and chemotherapy administered directly into the fluid inside the eye, called intravitreal chemotherapy.

“Within a week, we had all the answers, all the tests done, and an idea of what the future would hold,” Chelsea said.

Targeting the Cancer from Two Directions

Because Owen’s cancer was limited to one eye, his team could treat it with localized chemotherapy rather than systemic chemotherapy that circulates throughout the body.

The team also coordinated Owen’s eye exams and both forms of treatment so each cycle would take place under the same dose of anesthesia. Dr. Gursel examined Owen’s eye and administered intravitreal chemotherapy to treat the vitreous seeds. Afterward, care team members took Owen to the interventional radiology suite, where Dr. Vadivelu delivered intra-arterial chemotherapy to the tumor by guiding a small catheter from an artery in Owen’s groin to the tiny artery supplying blood to his eye.

“By giving the chemotherapy directly to the blood supply feeding the tumor, we can provide a higher concentration with less volume and fewer systemic side effects,” Dr. Vadivelu said.

Over the course of about four months, Owen received six cycles of intra-arterial chemotherapy alongside intravitreal chemotherapy. After that, he only needed a few more months of intravitreal chemotherapy injections to treat the remaining seeds. Along the way, Dr. Gursel adjusted Owen’s chemotherapy doses based on how the seeds responded.

Thanks to the localized treatments, Owen had limited side effects. While he lost some eyelashes and part of an eyebrow, he avoided many of the typical side effects associated with traditional chemotherapy. Most importantly, the team preserved Owen’s eye.

“A decade or two ago, a child with a case like Owen’s probably would have had the eye removed,” Dr. Jamshidi-Nezhad said. “Today, we have the expertise, knowledge and technical skills across multiple specialties to deliver treatment directly to the affected eye.”

Making Hospital Days Feel Special

In addition to Owen’s frequent appointments and procedures, he stayed in the Pediatric Intensive Care Unit (PICU) overnight for monitoring each time he had an intra-arterial chemotherapy treatment. But his family and care team worked together to make his hospital stays something he came to look forward to—instead of something he dreaded.

Chelsea followed advice from a friend whose child had undergone cancer treatment. She filled a Spider-Man backpack with toys and activities Owen could only use at Cincinnati Children’s. And when the care team learned about Owen’s love for Spider-Man, they ran with it, even calling his IV a “Spider-Man web shooter.”

“Every time Owen comes in, he has a smile on his face,” said Michelle Sorrell, Owen’s care team manager. “He’s full of fun and energy. For everything he’s been through, he’s been such a pleasure to care for.”

From his family’s perspective, watching Owen build close relationships with his caregivers made the difficult months easier.

“He asks every day to go to the doctor,” Chelsea said. “Seeing how much he loves the care he receives has helped us through all of this. Cincinnati Children’s goes above and beyond to make him comfortable.”

The care team understood that life for the family didn't stop during treatment. While Owen was undergoing care, Chelsea was pregnant and welcomed his younger brother, Noah. With another young son, Levi, at home, the family's schedule was often full, so the team worked closely with them to make appointments and treatment as manageable as possible.

“We told the family, ‘You focus on having your baby. We’ll make sure Owen gets treated,’” Sorrell said. “We always try to be flexible and work with what families need.”

Back to Swimming and Being a Big Brother

Owen finished treatment a few months ago. His family says he’s now in remission, although his team continues to monitor him closely through regular eye exams and MRIs. And Owen is now regaining some of his vision.

“It’s been surprising how quickly it’s improved,” Chelsea said, noting doctors aren’t sure how much he’ll ultimately get back.

Owen’s routine these days is typical of a 4-year-old: He loves to swim, listen to records with his dad and make friends. He also takes his role as a big brother very seriously.

“He’s the most caring boy in the whole world,” Chelsea said. “He gives Noah kisses all the time. He’s sensitive, sweet and friendly.”

For Chelsea and Andrew, the timing of Owen’s diagnosis still feels remarkable. After all, Owen had shown no other signs or symptoms. He ran, caught balls and played like any other active child.

“Getting that doctor’s kit as a gift saved us,” Chelsea said. “We’re beyond grateful that we caught it when we did—and that Cincinnati Children’s acted so quickly. They’ve done so much for us.”