Sophia’s “Glow” was first noticed as photographs were being uploaded from our camera to the computer. She was three months old, but some of the photos had been taken a month or more prior. Photo after photo revealed a pearly white glow in her left eye. This glow was alarming enough that we immediately took her to the UAB Callahan Eye Foundation Emergency Room. The doctors there told us that “The Glow” looked like Retinoblastoma. Sophia was seen the next morning by a retina specialist who confirmed the previous findings and referred us to St Jude in Memphis, TN. Once at St. Jude, she was quickly entered into the retinoblastoma treatment protocol, which included chemotherapy and monthly EUA (examination under anesthesia) with cryotherapy as needed for suspicious new lesions. After nine months of regular treatments, the doctors felt the tumor had calcified and was inactive. Although her left eye now has no vision, we are thankful it was saved.
We were so blessed to have wonderful team of caring doctors, nurses, therapists, volunteers, The Grizzlies House that accommodated us for extended stays with meals included. We were so appreciative of the supportive atmosphere at St. Jude that felt like being surrounded by a “family” of others struggling with the same fears and hopes.
Update: Sophia is almost 10 years old now, and is as normal a little girl as can be. We are happy to share her story in hopes others can be diagnosed earlier. We hope that through awareness no more children will be lost to this dreadful cancer.
Know The Glow is excited to share an update on our own Sophia who has grown into an amazing young woman since we first met her over a decade ago! Sophia was diagnosed with retinoblastoma when she was 3 months old, but is now almost 16!
While Sophia has been able to keep her eye, she did require a procedure in kindergarten to strengthen her affected eye. Her family is grateful to the team at St. Jude’s and all the doctors who have helped Sophia. Dr. Hoen performed the original surgery and Dr. Matthew Wilson has been Sophia’s surgeon for her past EUAs (Exams Under Anesthesia) and continues to work closely with Sophia and her family.
She continues to be followed by her team at St. Jude’s and has been cancer free ever since she completed chemotherapy. Sophia and her family are thankful for all that KnowTheGlow does to raise awareness!