Everett’s Glow Story

Diagnosis: Bilateral Retinoblastoma

When Sierra was just three years old her mother started to notice a flash or glow in her daughter’s eye.  She could see this glow with the naked eye in dimly lit rooms when the light hit it at just the right angle.  Sierra’s mother had never heard of the Glow but knew something must be wrong with her daughter’s vision.  She covered Sierra’s non-glowing eye and asked her how many fingers she was holding up.  Sierra responded, “If you move your hand away I can tell you.”  Sierra’s mother was shocked, she knew right then that Sierra had very little if any vision in her right eye!

She immediately took Sierra to her local pediatrician in Arizona who referred her to a Pediatric Ophthalmologist.  Within three days of this visit, Sierra was diagnosed with Bilateral Retinoblastoma and immediately had her right eye enucleated.  In hopes of saving the vision in her left eye, and to prevent the tumors from spreading from her right eye, Sierra underwent six rounds of systemic chemotherapy and laser treatment.  Sierra was also given genetic testing where she discovered she carries the RB1 Gene.  

Once her chemotherapy was completed, Sierra had annual checks just to make sure there was no re-growth for many years.  Now Sierra is an adult and is considered cancer free and she has near-perfect vision in her left eye.   She is living a very full and happy life!  She is married and starting her own family.  

When Sierra and her husband decided to start a family, they had concerns.  They knew that having the RB1 mutation, Sierra could pass Retinoblastoma to her child.  Very early in her pregnancy Sierra went to a genetic specialist who referred her to Dr. Apart Ramasubramanian at Phoenix Children’s Hospital.  She began weekly visits with Dr. Ramasubramanian starting at just 32 weeks gestation to check for any signs of RB.  Dr. Rama found a small tumor near the eye of her unborn baby.  This tumor is now documented as the smallest to have ever been discovered in utero with ultrasound.  It was the size of a pin prick.  Dr. Ramasubramanian was concerned but decided to monitor Sierra instead of inducing birth.  At 37 weeks the baby’s tumor began to grow, the baby needed to be induced.

Baby Everett was born the very next day.  He was otherwise a very healthy and happy baby. The family was able to go home and spend a few days bonding.  But when Everett was just four days old he had his first Exam under Anesthesia and first round of systemic chemotherapy.  This was very hard on such a little baby so after this first round, Everett was given a few months break.

When Everett was three months old the family moved and started treatment at MD Anderson with Dr.Gombos.  Over the next six months Everett has had six full rounds of chemotherapy, two rounds of Intra arterial chemotherapy and several laser treatments.   Everett is still actively undergoing treatment but the doctor believes they are a long way from enucleation and that he still has a very good prognosis. 

Through all of his treatments, Everett has remained a fighter and still a very happy baby.  Sierra hopes Everett will soon be 100% in remission and will not even remember his time fighting cancer.  She also hopes that by sharing her story, other families will recognize and act on strange Glows that they may see in their children either in flash photography or the naked eye.