Chantal Porter says the first time she considered her 3 year old son, Amir, may have a visual issue was the summer of 2023 when her 7 year old daughter told her that she was noticing a “Glow” in her brother’s eye. At the time, Chantal assumed her daughter was just seeing a normal reflection of light in Amir’s very dark brown iris. But about a month later, Chantal herself started to notice a grayish looking Glow in Amir’s eye. She says it was “sneaky”, not showing all the time. The strange Glow was only visible when Amir looked in a certain direction and it did not last long. It was more like a flash of light than a continuous Glow. It was so fast and infrequent that Chantal had a very difficult time getting anyone else to see what she was noticing. Still, she was determined to find answers and made an appointment for an eye exam for Amir.
One night before this exam while eating dinner with family, Chantal’s cousin also noticed this Glow in Amir’s eye. Chantal’s concern quickly escalated now that another adult was noticing the Glow. She immediately called her optometrist explaining the situation and asking for the appointment to be expedited. Luckily, the office had a cancellation for the next morning.
The optometrist did not see anything unusual in Amir’s eye during the initial exam as his reflex appeared to be normal. However, when they covered Amir’s non-glowing eye it became evident to everyone in the room that Amir could not see. Concerned, the doctor dilated Amir’s eye for further evaluation. Immediately Amir’s eye started to Glow. The optometrist was able to get a good look behind Amir’s eye and carefully explained to Chantal what he was seeing. Amir had “clumps” floating in the back of his eye. He told Chantal that he had never seen anything like it before. Amir was having a difficult time being still so the doctor sent them to Janeway Children’s Hospital in their hometown of St. John Newfoundland to be examined by a specialist.
At Janeway, the specialist thoroughly examined Amir and performed an ultrasound. After the exam Chantal was told that the floating “clumps” could be the result of three things; 1) injury, 2) Infection or 3) cancer. The only way to know for sure was with an exam under anesthesia (EUA). That procedure was scheduled for the following week.
Leaving the hospital, Chantal had a very bad feeling that something was terribly wrong. That night she began to research and learned all about Retinoblastoma (RB) and the dangers this eye cancer could present. In her heart she knew this is what Amir had. She did not feel comfortable waiting another week for answers! Chantal called Toronto’s Hospital for Sick Children (SickKids) explaining her concerns, just to be told to call back in the morning. She barely slept that night as she was so anxious to get answers and begin any treatment her son may desperately need.
That morning Chantal was surprised that the specialist at Janeway Children’s requested for them to return for further conversation. Once there, the specialist explained that she had sent Amir’s images to Dr. Ashwin Mallipatna at Toronto’s Hospital for Sick Children (SickKids), after their appointment (as that was the closest hospital treating RB). Chantal says the specialist became very serious and said that she was very sorry to inform them that Dr. Malipatna had confirmed her Retinoblastoma suspicion. They were told to fly to Toronto that very day.
Once at SickKids, Amir met with Dr. Mallipatna who performed an exam under anesthesia, an MRI as well as several other tests. Soon after, Amir was diagnosed with Unilateral Retinoblastoma – retinal cancer in one eye. Dr. Mallipatna told Chantal that Amir’s cancer was very advanced, graded D in size. His retina was completely detached and he no longer had vision in that eye and had no chance of ever re re-gaining this lost vision. His cancer was very aggressive. Dr. Mallipatna explained that untreated, this cancer would grow past the eye and risk Amir’s life.
Chantal was given three choices – 1) systemic chemotherapy, treating the entire body with chemotherapy, 2) Intra-Arterial Chemotherapy, targeting the tumor in the eye directly or 3) enucleation – removing the eye and the cancer contained within. Chantal said it took her less than five minutes to choose to enucleate. For her, the risks were too great in keeping the eye. She wanted the cancer removed as soon as possible and did not want to introduce chemotherapy into Amir’s little body if it could be avoided.
On December 4th, Amir’s eye was removed.
Chantal says that his recovery was quick! Amir was back on his feet the next day. She was shocked when Amir said that he could see better than ever! She assumes that removing the eye cleared up any blurry images that may have been entering his visual landscape from the affected eye. The very best news came about a week later when Amir’s pathology came back and they were told that all of Amir’s cancer had been entirely removed. He would not need chemotherapy! The good news continued when his genetic tests came back and they learned his cancer was spontaneous and sporadic.
Chantal is grateful for so many things. She is grateful that she, her daughter and cousin all noticed the Glow in Amir’s eye. She is grateful that she was determined to find a diagnosis for the Glow they were noticing. She is grateful for the amazing team at SickKids who acted so quickly to remove Amir’s cancer. She credits Dr. Mallipatna’s medical expertise for saving Amir’s life. But most of all she is grateful that her son is now cancer free and able to move on with what she hopes to be a long, happy life.
Today Amir is doing fantastic! He is an active, energetic and inquisitive three year old boy. He loves anything that has to do with mechanics. Having many tools of his own, he fixes things all around the house. He dreams of going on a moose hunt one day and brings his nerf guns on family walks just in case one crosses their path! Amir also loves to cook and makes the most delicious and tasty foods for his family to try. He is a fast learner and never forgets a thing. Chantal says he is an “old soul” in a little boy’s body.
Chantal is determined to turn Amir’s experience into something positive for others. She is actively spreading awareness of Retinoblastoma and the Glow to as many as possible. She has made car window stickers, sweatshirts and sweaters to help spread awareness. She is determined to advocate for earlier visual testing in Canada and beyond. All of us at KTG are so inspired by Chantal’s efforts and grateful for her determination to share in our mission of spreading awareness of the Glow and leading children around the world to more timely care.
