Written by their mother, Denice Lopez
Soon after our first child, Jaylen, was born we noticed that his left eye started to shift bit by bit as he grew. Then, around two or three months of age, we began to notice a glow in Jaylen’s eyes in the pictures we took with my iPhone. We were concerned and expressed our worries with his pediatrician, Dr. Richard Switzer at the time. We were assured time and again that Jaylen would “grow out of it”. We now know that Jaylen was not thoroughly tested at his appointments, but at the time, not knowing better, we decided to trust his pediatrician’s word because he was the doctor and we were new parents.
Noticing this unique glow in his eyes in the pictures, and his left eye wandering more and more, we decided to push for answers at his four month appointment. Unfortunately when the day came his pediatrician refused to see Jaylen because I did not have an interpreter with us (I am deaf and communication can be limited at times). However, we didn’t have an interpreter for Jaylen’s previous appointments so I was unclear as to why he could not be examined. I begged for him to see Jaylen because I knew something was very wrong yet he still refused. They asked for us to come back with an interpreter two weeks later! I knew I could not wait another minute so I searched and found a new pediatrician for Jaylen.
Thankfully his new and current pediatrician, Dr. Patricia Hughes-Juarez, was willing to see Jaylen and examined him thoroughly. She determined there was something wrong with his left eye so she referred us to an eye specialist that very same week.
After attending that appointment we were again referred to another specialist. This doctor discovered tumors in both of Jaylen’s eyes. We were shocked and devastated to learn that Jaylen had bilateral retinoblastoma, cancer in both eyes.
We immediately took Jaylen to see Dr. Amy Schefler, an ocular oncologist at Houston Methodist. After thorough testing Jaylen’s RB diagnosis was confirmed and a treatment plan was put in place. Jaylen received a series of treatments including intra arterial chemotherapy, lasers and cryotherapy under Dr. Amy Schefler’s care. Genetic testing was done on Jaylen and we discovered that he carries the RB1 gene. His cancer was genetic. We also discovered that my husband carries this same gene.
A few years later, when I became pregnant with my second child, I knew I had to take precautions. When Ayla was born, we had her cord genetically tested to determine if she too carried the RB1 gene like her dad and brother. She too was a carrier. We immediately brought Ayla to Dr. Schefler where she was diagnosed with bilateral retinoblastoma, just like her brother. We wanted to make sure to catch any developing tumor early, and we felt confident that we did. Ayla was carefully monitored to make sure nothing developed that was not treated in her eyes.
However, soon after her second birthday, there was a mysterious discovery on her EUA. They found blood in her right eye and the cause was unknown. Dr. Schefler decided to treat her with several rounds of intra arterial chemotherapy to try and clear the blood. Unfortunately, the bleeding did not stop. We decided to enucleate her right eye as a result. The risks of keeping the eye were too great.
Today, both children are thriving. Jaylen is seven years old and is in remission! He has recently graduated from EUAs (exams under anesthesia). He still sees an ocular oncologist, pediatric ophthalmologist and a local oncologist every six months. He is doing really well in school and is involved with Live Oak Soccer Zone and Children’s Ballet of San Antonio. Because of the scar tissue in Jaylen’s eye, the glow is still present in his photos.
Ayla is four years old and in remission as well! She is still being monitored with an EUA regularly in Houston. She will graduate from EUA soon like her brother later this year. Just like Jaylen, she sees all the same specialists. She’s also involved with Children’s Ballet of San Antonio and loves going to gymnastics class. She has two prosthetic eyes. One is a perfect match to her left eye and the other is a cool glitter pink iris eye that she has worn since the day it was made! It is by far her favorite!!
As their Deaf mom, their vision is very important to me because I speak through my hands. My only language is American Sign Language. When Jaylen was officially diagnosed, I was beyond devastated to learn that Retinoblastoma may cause vision loss as I knew this would inhibit our communication. I’m happy to say that both of my children now speak American Sign Language fluently. We communicate quite beautifully!
I am so very grateful that we noticed the Glow in Jaylen’s photos as well as the other signs that something was wrong. We are also very grateful that we listened to our parental instincts despite the reassurance of our pediatrician. We know that by doing so, we saved Jaylen’s life. We hope that by sharing our story we not only educate others of leukocoria, the glow, but we also encourage others to advocate for their child even when they are being told everything is normal. Please, listen to your inner voice and find answers for your concerns. It could not only save the vision, but maybe even the life of your child!