A Mother’s Intuition Leads to Picture-Perfect Treatment of Eye Cancer

The abnormality in Julia De Vos’ left eye was later identified as retinoblastoma. Julia’s mother, Amanda De Vos, took the photo and was quick to alert the family pediatrician when she noticed the white dot.

Some pictures are worth much more than a thousand words.

Like the picture Amanda De Vos took of her daughter Julia, which helped to identify retinoblastoma, a rare eye cancer that was stopped in its tracks with an innovative treatment at Seattle Children’s.

De Vos, a professional photographer, was reviewing shots she took of her 15-month-old identical twin daughters, Julia and Jemma, when a photo of Julia caught her attention. The image shows an excited toddler in dinosaur pajamas, her open mouth featuring three new bottom teeth.

An off-white glow in Julia’s left eye gave De Vos pause. It was an abnormality De Vos hadn’t seen previously in any of the thousands of pictures she had taken. The pupil in Julia’s right eye had a red dot in it—a common photographic nuisance that results when light from a camera flash reflects off the retina in the back of the eye.

“I am aware of other issues that could have caused the discoloration in Julia’s eye in the photo,” De Vos said. “But I was pretty certain I knew what it was based on some of the courses I had taken in college.”

Concerned with the discovery, De Vos took the photo to Julia’s primary care physician, who sent them immediately to a pediatric ophthalmologist. With Julia on her lap, doctors confirmed De Vos’ fear—her daughter had retinoblastoma.

“They were afraid to tell me what I already knew and no one wants to be the one who delivers the news that a child has cancer,” De Vos said.

Decisive action

Retinoblastoma accounts for 4% of all childhood cancers and is most often detected during an eye exam or by a family member. The cancer forms in the inner lining of one or both eyes and normally presents itself before the age of 5, often by age 2.

Julia’s father, Justin De Vos, a sergeant in the U.S. Army, came home early from the National Training Center in California. Since the cancer can be hereditary, Jemma also underwent a battery of tests, which revealed she was cancer-free.

The De Vos parents consulted with doctors and did days of their own research before deciding to come to Seattle Children’s for intra-arterial chemotherapy, a specialized treatment that infuses medication directly into the tumor through the ophthalmic artery at the back of the eye, maximizing potency and minimizing side effects on the rest of the body.

Seattle Children’s is the only hospital in the Northwest and one of less than 10 hospitals in the U.S. to offer the complex treatment, which requires interventional radiologists to maneuver through patients’ arteries to deliver medicine to the tumor.

“From what we had read, the side effects were a lot less taxing on the patient and the effectiveness seemed unparalleled” De Vos said.

A match of cancer and treatment

Julia experienced minimal side effects from her intra-arterial chemotherapy treatments.

Retinoblastoma treatment evolved from surgical removal of the eye, to radiation and cryotherapies, and widely-used systemic chemotherapy that had greater side effects before the emergence of intra-arterial chemotherapy.

“The problem with systemic chemotherapy is that you expose the entire body to side effects when the cancer is solely in the eye,” said Dr. Russ Geyer, an oncologist at Seattle Children’s. “That has led to the use in recent years of intra-arterial chemotherapy in retinoblastoma.”

Retinoblastoma contains itself to the eye in its early stages, so it lends itself to a best-case scenario for treatment: a localized dose of medicine with few side effects.

“The main goal with all cancer therapies is to preserve life and to do so with as few side effects as possible,” Geyer said.

Seattle Children’s successfully treats about 14 retinoblastoma patients each year from around the country.

Julia’s treatment

Julia and her identical twin sister, Jemma, were only separated for brief periods of time during Julia’s three rounds of treatment.

Julia’s experience at Seattle Children’s began with visits to ophthalmologist Dr. Avery Weiss and oncologist Dr. Thomas Pendergrass. Weiss and Pendergrass then worked with interventional radiologists Dr. Danial Hallam and Dr. Eric Monroe, who perform all intra-arterial chemotherapy procedures at Seattle Children’s, to develop a treatment plan.

Three to four rounds of intra-arterial chemotherapy are typically needed to treat retinoblastoma tumors.

For each round of treatment, Julia was put under anesthesia. A thin catheter, no thicker than a strand of angel hair pasta, was inserted into an artery in her thigh. Monroe and Hallam would navigate the catheter through Julia’s arteries until it reached the carotid artery in the neck. An even smaller catheter was fed through the main catheter and guided into the ophthalmic artery to administer the medicine.

“We’re giving a super-high concentration of medicine to the tumor,” Monroe said. “Yet the total dosage we give to the eye through intra-arterial chemo is about 5% of what would be given through systemic chemotherapy for the same treatment.”

A picture-perfect outcome

Julia’s cancer was in remission after three rounds of intra-arterial chemotherapy. Her side effects were minimal, De Vos said.

“They were able to save Julia’s eye and some of her vision,” Amanda said. “She no longer has to run with her head turned sideways to watch where she is going and she is able to grab small objects when her right eye is covered.”

Photo courtesy of Amanda De Vos Photography

While De Vos is quick to thank those who helped Julia at Seattle Children’s, Monroe cites motherly instinct for the great outcome.

“I was touched by Julia’s story and I credit how well she has done to her mom being so savvy to identify the abnormality and seek this treatment,” Monroe said. “This is a great treatment that works best when the tumor is in its earliest stages.”

De Vos is back to photographing Julia and Jemma. One of De Vos’ favorite photos shows her daughters holding hands as they walk down a path toward tree-covered mountains, healthy and happy.