“It was God’s divine intervention”.
This is how Kristin Bell begins telling her son Oliver’s medical journey.
In October of 2021, Oliver was two years old, when Kristin started to notice a white “glow” in his eye. She would only notice it when he would turn his head a certain way. After seeing it a couple of times, she became very concerned, as just a few weeks before she had watched a TikTok story of a man showing off his collection of prosthetic eyes. This man had been diagnosed with Retinoblastoma (RB), cancer of the eye, when he was 2 years old as well and used TikTok to spread awareness and his story.
Oliver’s glow was very infrequent and only lasted a second or two. She informed her husband, Christopher, of what she was noticing, but he was not able to see the glow himself. Kristin searched old photos of Oliver on her phone trying to find the glow and even took several flash photos trying to capture it, but the glow did not appear. She also tried to shine a flashlight in Oliver’s eye, but was not able to see the glow. Kristin says that at times she felt like she was going crazy!
When her mother came for a visit, Kristin described what she had been noticing and asked her mother to be alert. Later that day, while she was sitting in the living room with Oliver, her mom suddenly yelled out that she could see it! She was able to turn Oliver’s head in just the right direction that showed the glow. They called Christopher in the room and he could now see it too. Kristin knew she needed answers for her son.
They immediately took Oliver to his pediatrician. His doctor did a red eye reflex test on Oliver and was surprised that his right eye had a white reflex. Just two months before Oliver had a healthy red reflex. Oliver’s pediatrician referred them to a pediatric ophthalmologist in the Tucson, Arizona area where they lived.
Kristin was excited to have a thorough exam and possibly answers, but the family had to wait two weeks to be seen. Finally the day came for this specialist appointment. As soon as they dilated Oliver’s eye the glow was clear. Kristin says that she could visibly see the tumor and knew right away that Oliver had Retinoblastoma. They did an ultrasound on his eye and you could see how large the tumor was. The Ophthalmologist could not formally diagnose Oliver without an EUA (exam under anesthesia) though, so she sent them to Phoenix Children Hospital.
Three days later they arrived at Phoenix Children’s and were met by Dr. Aparna Ramasubramanian’s (Dr. Rama) team. Here Oliver was given an EUA. Soon after he was formally given a diagnosis of Retinoblastoma, stage D. Oliver began chemotherapy the next day. Oliver was given four rounds of intra arterial chemotherapy in hopes to target the tumor directly and reduce the effects of chemotherapy that systemic chemo usually brings. After the fourth round they were told that the tumor was inactive, however there were some small pieces floating that still needed to be treated. They decided these small pieces could be best treated with four rounds of intravitreal chemotherapy. All was going as planned until the 3rd round. At this time they found that the main tumor had begun to grow again, and the growth was aggressive.
There were 3 options at this point 1) proceed with more chemotherapy in the hopes of reversing the growth, 2) try an experimental procedure that was being done in Canada where they put the chemo medicine in a slow release vessel that is attached under the eyelid to slowly deliver chemo into the eye for a few weeks or 3) enucleation (removal of the eye). Oliver had been through so much already. He had no vision, or hope of vision in his eye. His retina had begun to detach at some point and his cancer was aggressive and at risk of growing past the eye socket. With all of this, Kristin and Christopher wholeheartedly agreed that enucleation was the best step. One week later on April 19, 2022 Oliver had the surgery to remove his eye.
Kristin says that she was surprised at how quickly Oliver recovered from surgery. The very next day he was playing as normal. She was further surprised over the following weeks to notice a complete change in his demeanor. He was so much happier. His sleeping and eating habits all improved dramatically. She believes that Oliver was in quite a bit of discomfort that he could not articulate. Without the pressure and pain in his eye, he began to thrive!
Oliver is now a healthy, happy, rambunctious 5 yr old. He loves ninja turtles, Pokémon, paw patrol, spiderman and anything where there is a good guy fighting a bad guy. He tells everyone he meets about his prosthetic eye and loves to shock people by taking it out (he calls it his party trick).
Kristin says she thanks God every day for His intervention showing her the glow and that it helped her bring Oliver to the care he desperately needed. She is so grateful for the story on her TikTok alerting her of the glow and its possible ramifications. Kristin is especially grateful for the care she received at Phoenix Children’s with Dr. Rama and her team. Kristin is determined to share Oliver’s story in the hopes of reaching another family in the same way she was reached. She knows very well that had she not been alerted to the dangers that could present with the glow, Oliver’s outcome could have been much different.