Diagnosis: Coats’ Disease
Maggie remembers the very first time she saw “the Glow” in her three year old son, Cameron’s, eye. She was in a dimly lit room giving him a bath. He looked up at her and for a second she noticed a flash in his eye. This grabbed her attention but was gone so quickly she didn’t know what to think. Over the coming days she saw that same Glow again. Her mother’s intuition told her this must be a sign of something more. She looked back at the wellness report from the 3 year pediatric visit they had just experienced a few weeks before. She read, “Eyes are healthy.” This calmed her concerns.
However, a few days later a friend also noticed the Glow in Cameron’s eye. She now knew this was potentially serious. Maggie began to search the internet for answers. She found the Know the Glow website, along with a few others that informed her that this Glow could be a sign of more than 20 different visual conditions in the eye. Maggie was determined to find an answer for Cameron’s Glow.
The next day Maggie took Cameron back to the pediatrician’s office. This time the doctor did a red eye reflex test in a dimly lit room after Cameron’s eyes had a chance to adjust. This test was not done at his previous appointment. The pediatrician told Maggie that she was seeing something of concern and made a pediatric ophthalmology appointment for the very next day.
Maggie took Cameron to see Dr. Deena Leonard at Premier Eye Care in Buffalo Grove, IL. Dr. Leonard did a thorough exam of Cameron’s eye. After the exam, she gently told Maggie that Cameron had a serious issue that needed urgent medical attention. Maggie was aware of Retinoblastoma and asked if this was her diagnosis. Dr. Leonard said that RB was a possibility, but that he could also have a condition known as Coats’ Disease. They were sent to Lurie Children’s Hospital the very next day.
At Lurie, they met with another pediatric ophthalmologist. After an Exam Under Anaesthesia, EUA, the doctor diagnosed Cameron with unilateral Retinoblastoma in his right eye. Cameron had a Grade E tumor. He had no vision in the eye except for the ability to detect light. They were advised that enucleation was their best treatment option. On July 8th, 2020, Cameron had his right eye removed.
Just days after enucleation, Cameron was back to his active, happy, healthy self. The doctors believe they were able to remove all of the cancer with the surgery. Cameron does not need any further treatment. They did discover that Cameron carries the genetic mutation for Retinoblastoma. He will be monitored closely until he is 5 years old to make sure there are no further signs of cancer.
Maggie says that Cameron has been a warrior through all of this. He is now back in school and has adjusted to his prosthetic beautifully. Maggie says it is very difficult to tell all that he has been through. They are looking forward to a long, healthy, and very active life for Cameron.
Maggie is determined to spread awareness of the Glow. The Glow was the only indication she had that there was cancer developing in his eye. Cameron’s eye never drifted and he did not show any sign of vision loss. Not even the pediatrician noticed that Cameron was in distress. The Glow she saw was only visible by the naked eye in dimly lit areas at certain angles. It did not show up in his flash photos.
Maggie knows that her outcome could have been much different if she had not followed her mother’s intuition about the Glow. She hopes that by sharing her story she will help other parents to be aware of the Glow and bring their child to the care they need.