Estimated read time: 5-6 minutes
This archived news story is available only for your personal, non-commercial use. Information in the story may be outdated or superseded by additional information. Reading or replaying the story in its archived form does not constitute a republication of the story.
SALT LAKE CITY — A Murray mom said she was looking at her son on a baby monitor about a year ago when she noticed his left eye was "pitch black."
Although an internet search pointed to a camera error, she kept researching. When she saw there was a possibility it was cancer, she called her son's pediatrician. A few days later, 6-month-old Benny was diagnosed with cancer — specifically retinoblastoma.
Benny's mom said the only thing she remembers asking at the appointment is, "will he live?"
Benny has experienced some developmental delays but is now cancer-free. He is learning how to transition to and from sitting at nearly 18 months, and he needs help learning how to move with reduced vision.
"He's very fearful of transitioning from a position where he feels very stable. So it's really impacted his ability to just be mobile," his mom, who didn't want to release her name, said.
New technology impacts detection
Dr. Eric Hansen, director of oular oncology at the University of Utah John A. Moran Eye Center and co-director of Primary Children's retinoblastoma program, said the cancer found in Benny's eye is most commonly caught by seeing pupils look different on cameras — one eye shows up red in the photo and the other doesn't — but with phone cameras automatically filtering out red-eye, it may be harder for parents to spot problems.
Doctors are not sure yet if improved camera technology will lead to more cases being found when the cancer is more advanced, but it's a possibility.
"In Benny's case, we were really fortunate … because (a baby monitor) doesn't have software built in to eliminate that red reflex," he said.
Hansen said when a child's eye looks cloudy or white in a photo or when light is shining on it, it is something to bring up with a pediatrician so it can be evaluated.
"If you're noting … any concerns about the eye, bring it up with your pediatrician — don't ignore it," he said.
He said most vision problems are not signs of eye cancer, but early detection is important because the cancer is a rapidly dividing cancer and it can leave the eye within a few months.
Hansen said it is a rare cancer, with about 300 to 350 cases each year across the country.
"Thankfully, it's rare, and it thankfully is also a cancer that if caught before it leaves the eye is curable and, you know, we're able to have good outcomes with these kids," he said.
Screening for retinoblastoma happens at the hospital when a baby is born and then typically at a visit between six and 12 months in the U.S., which he said leads to a 95% cure rate, compared to some countries with a 70% fatality rate.
Hansen said retinoblastoma most frequently presents itself when a child is between 1 and 2 years old, but it can be seen in newborns and older toddlers.
He said if the cancer is allowed to progress it can manifest itself through pressure in the eye and inflammation that is even more visible.
Benny's care
Hansen said Primary Children's has a team that focuses on retinoblastoma, so they were quickly able to line up an MRI for Benny and learn that his cancer was still contained in his eye.
The next step for Benny was an intra-arterial chemotherapy, which Hansen explains is a new procedure using a catheter about the size of a thread to apply chemotherapy directly to the eye through a blood vessel, starting in his leg. Because the chemotherapy is so localized, it has a better effect in the eye without causing as many side effects in other areas of the body.
Benny's mom, who asked to keep her name private, said Benny was one of the first at Primary Children's to receive the treatment, which was scary — especially after the procedure when he had to lay flat for six hours.
Hansen also said Primary Children's does genetic testing on all of its retinoblastoma patients, which helps to create personalized care plans involving physical therapy, occupational therapy, seeing a pediatric ophthalmologist and other holistic care.
He said typically a child's vision is impacted even when treatments go well, but the outcomes vary based on the location of the tumor.
"We do everything we can to preserve as much vision as possible, but certainly our first priority is curing the cancer and preserving the life," he said.
Because Benny's cancer was caught earlier, he has a functioning retina. Hansen said Benny has developed relationships with the nursing staff, and is very cheerful and resilient. He will come in for evaluations every month for a few years, and then less frequently until he is an adult.
"He has been an absolute champ through his treatment. He's beloved by all of us," Hansen said.
Benny's mom said they have therapists teaching exercises to help Benny gain some vision back from Utah Schools for the Blind's Parent Infant Program, which is "amazing to watch."
She is a children's therapist, and does play therapy with her young son to help him release any trauma he has from his medical needs. She also said they have routines to help him, like listening to "Hakuna Matata" on the way to the doctor.
She said the week after chemotherapy Benny would be really sick, but no matter how sick he was he would smile and interact with his doctors and nurses.
