Sylvia’s Glow Story

Diagnosis: Retinoblastoma

Not many people were aware of the Glow in 1967,  let alone the dozen or so conditions it could represent.  Therefore, when Sylvia’s parents first noticed a Glow in their daughter’s eye, they were far more intrigued than alarmed.  

Not only was Sylvia the firstborn child to her mother Madeline and her husband, she was also the first grandchild in the family on either side!  Because of this, everyone in the family spoiled her and took many, many photos of her during her first year of life. Over time, the family noticed that a Glow would often show up in her right eye in flash photographs.  They found the Glow unusual, but did not have an explanation for it … nor really even a concern about it.

This relaxed attitude changed dramatically when Sylvia was about 18 months old.  

Her mother, Madeline, went to retrieve her daughter who was playing in a darkened closet.  Madeline was shocked to see Sylvia’s Glow with her naked eye! She describes it as seeing a cat’s eye reflection when it looks at you in the dark.  This Glow was so pronounced that it took Madeline by surprise and really frightened her! She knew in that moment there was more to this Glow. Madeline covered little Sylvia’s non-glowing eye and could instantly tell by her child’s demeanor that she was not able to see.  

Sylvia was immediately taken to see her pediatrician.  The pediatrician was equally concerned and sent the family to see a specialist at Children’s Mercy Hospital in Kansas City, a three hour drive from their home in Wichita.  Here Madeline and her husband were told that little Sylvia was completely blind in her right eye and that she had a very rare form of cancer that attacks the eye. She was diagnosed with Retinoblastoma.  Then doctors told Sylvia’s family that they would need to remove her eye to save her life. A few days later Sylvia underwent surgery and had her eye enucleated, removed. No chemotherapy was necessary.

Sylvia says that once she recovered from surgery, her life then continued as normal.  She grew up feeling just the same as all her peers and excelled in many areas. She was a cheerleader and a softball player.  She spent a year as an exchange student in Sweden, went to college, moved to Houston, started a career and raised two beautiful children.

Sylvia is now 52 years old and feels it is very important to share her story.  She hopes that by doing so she will not only spread awareness of the Glow, but will also reassure those families who are currently battling the disease and especially those facing the decision to enucleate.

She knows that this can be a very frightening time and that the removal of the eye is often a very difficult decision for parents. She wants them to know that “normal” life is still more than possible for their children.  Sylvia says that she has had a very happy, loving and active life and has never once felt handicapped in any way. She is grateful that her mother recognized the signs of her disease and that her parents were able to provide the care she needed to save her life.