Diagnosis: Retinoblastoma
In March 2017, our world came crashing down when we were told our sweet 9-month-old daughter, Braelyn, was diagnosed with an eye cancer called retinoblastoma.
We scheduled an appointment with a pediatric ophthalmologist after noticing that her eyes would shake when she tried to track an object, one of her eyes was crossed inward, and she was not hitting her milestones. At this appointment the ophthalmologist saw tumors in both of Braelyn’s eyes while doing her eye examination. She confirmed it was bilateral retinoblastoma via ultrasound.
We then flew from Anchorage, Alaska, our home at the time, to Wills Eye Hospital and the Children’s Hospital of Philadelphia in Pennsylvania to seek treatment. At Wills Eye Hospital we met with Dr. Carol Shields who provided us with more information regarding Braelyn’s health. Both eyes were classified at grade D tumors. At that time, we also found out that Braelyn has a genetic disorder called 13q deletion syndrome. This genetic disorder caused her to develop retinoblastoma as well as experience developmental delays.
She has completed six rounds of systemic chemotherapy, two rounds of intra-arterial chemotherapy, laser, cryotherapy treatments and Avastin injections. Braelyn is currently being seen by Dr. Hakan Demirci at the University of Michigan where she has eye exams under anesthesia every 3 months and MRI’s every 6 months. She will need to be monitored closely her entire life, not only for her retinoblastoma, but for secondary cancers as well. She has had no cancer activity since June 2018!
Her sight is affected by the calcified tumors and treatments she’s had done. She’s had hemorrhaging in her left eye recently that she’s needed treatment several times but seems to be reacting well. She wears prescription glasses to correct her vision and patches on the days she doesn’t wear her glasses for a one-hour time period. Her ophthalmologist is very impressed with how well her vision is despite all her treatments she’s had.
Braelyn is currently a joyful, independent, sassy, and kind-spirited toddler. Despite all the obstacles she has faced in her short life, she remains so happy and strong. She is enjoying having appointments spaced out so she can focus on just being a kid. She will be starting preschool this fall and is very excited to tackle this new milestone in life!
Before Braelyn’s diagnosis we knew nothing about the Glow and thought it was nothing serious when it appeared in her photos. Looking back at pictures before her diagnosis, I now notice the Glow in both eyes in nearly every photo with a flash.
Spreading awareness about the Glow is very important to our family. If we had known about the Glow, Braelyn could have been diagnosed much sooner. We are always looking for ways to share her story in hopes to help others!
