Evie’s Glow Story

Diagnosis: Retinoblastoma

The first time Kaitlin remembers her “gut feeling” that something may be wrong with her little girl, Evie, was when Evie was just a little over four weeks old.  Kaitlin remembers seeing a little yellow glow in her daughter’s eye when she looked at Evie from an angle.  She also noticed that Evie’s left eye was not tracking along with the right.  She addressed her concerns with her pediatrician at Evie’s two month well visit, but her doctor said that this slight disconnect was perfectly normal for her age.  He did not perform a red eye reflex test at this exam.   

Despite the reassurance of her doctor, Kaitlin could not ignore the little voice telling her there was more going on with her child’s vision.  Around the time that Evie turned three months, Kaitlin started to notice a Glow in her flash photos.  At the time, she did not know that the Glow was an indicator of potential eye disease, but knew it was unusual.  She decided to cover Evie’s non-glowing eye to see if she could tell any difference in her demeanor.   Evie became very agitated as soon as the eye was covered.   Kaitlin then knew Evie really was having difficulty seeing out of her left eye and so she took her back to her physician. This time her doctor did the red eye reflex test and discovered the likely mass behind Evie’s eye and immediately sent them to Nemours Children’s Clinic in Jacksonville.  Here they did an ultrasound of Evie’s eye where the mass was confirmed.  The next day she had a CT scan and an exam under anesthesia. 

It was determined that Evie had a grade E tumor that covered 90% of the back of her eye and her retina was 60% detached.  They were given the choice of treating with chemotherapy and laser treatment, or removing (enucleating) the eye.   After careful consideration, Kaitlin decided it was in Evie’s best interest to enucleate, removing the eye, to prevent any further spreading of the disease.  After this procedure, she underwent six rounds of chemotherapy.  With the six rounds behind her, Evie has had no additional evidence of disease.  

Evie is now six years old and full of life!  She loves dancing, watching funny movies, riding horses, swimming, and, of course, anything princess related!  Kaitlin says that Evie is her hero and that through it all she has shown strength, kindness, and love.   We would bet that if you ask Evie she would say Kaitlin is her hero as well for refusing to ignore her “mother’s intuition” and making sure Evie received the critical care she needed.