Lola’s Glow Story

Diagnosis: Retinoblastoma

Kelli worked as a Certified Ophthalmic Assistant for a few years before and during her pregnancy with her second child.  At the time, Kelli would tell you her path to this career was unconventional.  But now, she believes it was a “God thing” that she found herself in this role.  The skills she developed helped her to identify the condition and track down the care her child would critically need. Little Lola was only three months old when Kelli first felt there could be a problem with her vision.  Every so often she would catch Lola’s left eye “wiggling”. 

She describes the movement as if the eye wasn’t connected and was floating in the socket.  Kelli explained this unusual behavior to Lola’s pediatrician during her three month wellness visit, but was reassured that everything was completely normal.  He did not perform a red eye reflex test. However, Kelli continued to notice these moments of unusual movement in Lola’s left eye.  Over the following months, Kelli also noticed that Lola would turn her entire head to follow a person or object on her left side.  Her “gut” was telling her something was off.  At Lola’s six month wellness check she again expressed her concerns and specifically asked for an eye exam.  She was told that Lola was too young for an acuity test and that Lola would have a proper eye exam once she was school age.  The doctor told Kelli that she was overreacting to behavior that was completely normal. Frustrated by his dismissal and unwillingness to examine Lola’s eyes, Kelli knew in her heart that something was very wrong.  

She told the doctor that if he was not going to test her eyes that she would be taking her to an ophthalmologist, and she took her straight to the one ophthalmology office that she knew so well. Kelli remembers every detail of that day on November 30th, 2007.  All of the people who worked in the office were friends.  They had all been co-workers for the past year.  They were excited to see Lola and the mood was cheerful and welcoming.  That all changed just a few minutes into Lola’s exam.  Kelli remembers how suddenly serious and quiet Dr. Treft became. 

He took his time checking and re-checking Lola’s eye.  He then asked Kelli if she happened to have any photos available for him to look at.  Kelli had her camera with her and Dr. Treft scanned several photos of Lola.  He pointed out a consistent white Glow in Lola’s left eye in the flash photos on her camera.  He then handed her a tissue, reached for her hand and said, “Lola has cancer.”  Kelli said that at that moment her entire world changed. They were immediately sent to Primary Children’s Hospital in Salt Lake City, Utah to see Dr. Robert Hoffman.  Here Dr. Hoffman confirmed the Retinoblastoma diagnosis and told them that the most likely treatment would be enucleation, removal of the eye.  They were scheduled for surgery three days later.   The surgery began with an exam under anesthesia. 

This exam was to determine just how close the tumor was to Lola’s optic nerve.  Just 20 minutes into that procedure, Dr. Hoffman returned to the waiting room.  He explained that Lola’s tumor was not as close to the nerve as they first believed.  They were given the option of keeping the eye and treating her with chemotherapy.  Kelli and her husband were only given a few minutes to make this agonizing decision, but after careful consideration decided to give chemotherapy a chance.   Lola started a chemotherapy regimen that lasted six months.  During the course of the treatment her tumor shrunk by 40%.  Although she has never re-gained any additional vision in this eye, the tumor has stayed the same size for over 10 years now and has had no signs of re-growth. She has been left with very little usable vision and limited depth perception. Lola is now eleven years old.  She is a very gifted student and a voracious reader.  She loves to run and has completed several 5 and 10Ks with her father.  She is also a talented ukulele player.  When Lola isn’t busy with these favorite activities, she spends her time giving back.  Lola wants more than anything to help other children who are working through their own special needs.   Kelli is very grateful that she had the courage to stand up to the pediatrician who tried to dismiss her.  She refused to ignore the voice inside telling her to fight for her child’s health.  This was never more clear than when Dr. Hoffman told her that if she had waited even three weeks longer, Lola may have had a completely different outcome.  Kelli now never hesitates to speak up and to be an advocate for herself and her family. 

She strongly encourages other parents to follow their intuition and to not stop until the voice inside them has been answered.  She will be entering 7th grade this fall and just placed 3rd I’m the Ogden Marathon 5K in her age group. She is a budding entrepreneur and singing ukulele musician.