Skylar’s Glow Story

Posted on 2018-07-30
Laura and her husband had concerns when their first child was born.  Laura’s husband, Dennis had battled Bilateral Retinoblastoma as an infant.  He was told that it was possible to pass this cancer along to his children.  Their firstborn, a little boy, was born without any visual issues and they were understandably relieved.
 
Once again, Laura and Dennis were concerned when their second child, Skylar, was born.  Once again, though, Skylar was given a clean bill of health.  They were told that her eyes were perfectly normal and that they should have no worries about Retinoblastoma.  They were very relieved.
 
When Skylar was about 8 months old, Laura noticed a Glow in her left eye.  This Glow appeared only for a brief moment.  Laura says “chills ran down her body”.  She immediately knew something was wrong.  Over the next few weeks, Laura saw this Glow time and again but only in certain lighting and only at certain angles. 
 
Concerned this could be a sign of Retinoblastoma, Laura told her pediatrician what she was noticing at her next visit and asked for her eyes to be checked.  The pediatrician did the red eye reflex test and found nothing unusual.  He did not believe there was any reason to send Skylar to an ophthalmologist.
 
Laura was comforted by the doctors exam.  But this calm did not last long as she kept seeing the “flash” in Skylar’s left eye.  Her intuition was telling her that something was wrong.  During her son’s well visit with another pediatrician, Laura asked if he, too, would take a moment to look at Skylar’s eyes.  This pediatrician again told her that everything looked normal.  A few weeks later Skylar made a visit to the Emergency Room for an unrelated illness.  Again Laura asked the doctors there to check Skylar’s eyes and again she was told all was fine.  
 
Laura was frustrated as she was the only person to see the Glow in her left eye.  Her husband never saw the Glow.  Skylar’s daily sitter did not see the Glow either.  She was not capturing the Glow in her flash photos and so three separate doctors on three separate occasions told her everything was fine.  But Laura knew in her heart her baby was in need of help.  She was determined to find it for her.
 
Around this time, Laura noticed the Glow had now changed.  It had developed a red ring around the white glow she had been seeing.  She was now determined to find someone to take her concerns seriously and to give her an answer.  Laura’s husband worked as a police officer at a local hospital.  She decided to take her daughter to the ER at this hospital and ask some of the doctors there who were familiar with her family for help.
 
It was here at  University Hospital that an ophthalmologist dilated Skylar’s eyes and discovered that in fact not only did Skylar have an abnormal reflex but there was indeed a mass behind her left eye.  She was diagnosed immediately with Retinoblastoma.  Skylar was now 22 months old, 14 months after Laura had first asked for an explanation for her Glow.  
 
Skyler was referred to MD Anderson, as it is the closest hospital able to treat Retinoblastoma.  However, they had difficulty getting her an appointment due to financial constraints and problems with insurance.  Time was passing and Laura was again not willing to wait.  She contacted St. Jude’s in the hope that they would be able to assist and assist they did!
 
Within days St. Jude’s flew them in, put them in housing, and set them up for evaluation.  They met with Dr. Brennan who was able to confirm Skylar’s RB diagnoses.  They were told Skylar had unilateral RB with a large tumor and seeding in her left eye.  Dr. Brennan felt with treatment she would be able to keep her eye, but would not regain any of her vision.  Dr. Brennan told Laura that her first goal was to save Skylar’s life, second to save her eye, and third to save her vision.  She set up a treatment plan that included systemic chemotherapy, cryotherapy, and laser. Skylar began the treatment regimen that very week.  
 
Skylar has chemotherapy every three weeks.  She is now in her fifth treatment and is scheduled for 6 more.  Although the day after chemo is difficult, Skylar has handled most of the treatments very well.  Since starting chemotherapy, Laura has never again seen the Glow.  
 
Laura wants to tell her story to encourage parents to listen to their parental instinct and to not give up until they are given answers to what concerns them.  Despite being the only person to see the Glow in her daughter, Laura did not allow others to dissuade her.  She knows that if she had not listened to the voice telling her to search for answers her daughter may not be with her today.
 
Laura is yet another example of the incredibly brave and determined mothers we are honored to know.  We are hopeful that in sharing Skylar’s journey we can help to give other mothers out there the courage to continue to ask questions until they receive answers that resonate with them.  
 
Please share Skylar’s story and help us find more children in time.