In Saint Augustine, Florida, a little girl named Ellie is now seven years old and full of life! She swims, plays baseball, practices karate, and adores her pets (including dogs, goats, chickens, and even a bearded dragon!). Her joy is infectious. Her strength is undeniable. But her journey here was one filled with extraordinary challenges. And it all began with a mother’s intuition and a mysterious glow.
Ellie was born prematurely at just 25 weeks after her mother, Jessica, experienced a tear in her uterus that led to a slow leak in amniotic fluid. As a premature baby, Ellie underwent frequent medical evaluations, including screenings for Retinopathy of Prematurity (ROP) during her NICU stay. After returning home, her eyes were examined and dilated often, and everything initially appeared normal.
But when Ellie was nine months old, Jessica noticed her daughter’s right eye beginning to turn inward. This was a sign she recognized immediately from her own childhood experience with amblyopia. Trusting her instincts, Jessica took Ellie to the pediatrician. The doctor was not overly concerned, agreed that Ellie was developing a “lazy eye” and recommended patching therapy.
However, while patching something didn’t sit right with Jessica. Ellie would cry inconsolably when her strong eye was patched, seemingly unable to see even a toy in front of her. Then, she began to notice a new unusual symptom. She began to see a strange glow in Ellie’s eye, especially visible at dawn and dusk when the light was dimmed. At first, she was the only one who saw it.
Jessica brought her concerns to Ellie’s pediatrician. But again, she was reassured there was nothing to worry about. Since Ellie’s eye wasn’t dilated, and no thorough exam was performed, Jessica’s worries were not put to rest.
Everything changed one evening at her son’s baseball game. Jay, Ellie’s father, also noticed the glow Jessica had been describing. It was fleeting but unmistakable, like a “cat’s-eye” reflection. Now that someone else had witnessed it, Jessica knew she had to act.
A late-night Google search for “cat’s eye glow” led her to the Know the Glow’s (KTG) website. There, she learned that more than 20 conditions could cause this glow, the most serious being retinoblastoma (Rb) , a rare pediatric eye cancer. The website suggested trying to capture the glow in a dark room flash photo. Jessica did. The glow was there.
Her urgency skyrocketed. Though the earliest local appointment was a week away and a specialist’s waitlist stretched four months, Jessica wouldn’t take no for an answer. She called the specialist’s office, explained her concern, and asked to speak with a nurse directly. She sent the photo she had captured of Ellie’s glow. Less than an hour later, the nurse called back saying the doctor had seen the photo and wanted to see Ellie the very next day!
The urgency of this visit confirmed Jessica’s deepest fear. After a dilated eye exam, the doctor informed them that Ellie’s retina was completely detached. He felt this detachment was likely caused by something growing inside the eye and that immediate intervention was needed.
The next step took them 5½ hours away to Bascom Palmer Eye Institute in Miami, where pediatric retina specialist Dr. J William Harbour performed an ultrasound and confirmed the heartbreaking diagnosis: Ellie had bilateral Retinoblastoma, cancer not just in her glowing eye, but the other eye as well. One eye was Stage A (the least severe), but the other was Stage E, the most advanced.
Ellie began treatment right away. The Stage A tumor was treated with laser therapy. The Stage E eye underwent five rounds of Intra-Arterial Chemotherapy (IAC). IAC is an intensive treatment targeted directly at the tumor. Though rare, IAC carries risks. In Ellie’s case, she suffered a severe reaction during two of the five rounds where her heart rate dropped dramatically, requiring emergency adrenaline shots to stabilize her.
Unfortunately these life saving IAC treatments couldn’t save the eye. Scar tissue and retinal detachment made it impossible to restore vision. Worse, the cancer had begun seeding, raising the risk it could spread beyond the eye. The family faced an agonizing decision, but with Ellie’s safety in mind, they chose enucleation (the surgical removal of the affected eye).
It was the right choice. Ellie recovered, adapted, and now thrives! Her initial follow-ups were every three months, but have now stretched to every year. She remains cancer free and has put her cancer journey in her rear view mirror. Her spirit is unstoppable and we are excited to watch where life takes her!
Jessica and Jay are forever grateful, not only for the incredible medical team that treated their daughter but also for the moment they saw “the glow” and refused to ignore it. They credit Jessica’s instincts, their persistence, and the life-saving information they found on Know the Glow’s website for helping them catch Ellie’s cancer before it spread.
Their hope now is that Ellie’s story will reach another parent, another child, and lead them to the life saving care they don’t yet know they need.
Jessica and Jay hope to instill in others that If you see something unusual in your child’s eye, a misalignment, unexplained vision loss, and especially a glow, trust your instincts. Don’t settle until your inner voice is content with answers for what you are noticing. They know things could have been very different for Ellie had they relented.
“The glow” may be the first and only sign of something developing. Catching it early can save sight, and even a life.
