Ryder’s Glow Story

Posted on 2018-05-14

There are times that Ryder’s mom, Andrea, believes his adorable little shirt, “Born to be Wild,” perfectly describes Ryder’s energy level as a busy, bustling two year old!  But all of us at KTG believe it should actually read “Born to be a Fighter,”  … and what a fighter Ryder is! 

Andrea discovered Ryder had Down Syndrome when she was pregnant.  With this news, the family educated themselves on Down Syndrome and prepared for all of the health issues that could be associated with the condition. However, when Ryder was born, he had no additional issues and was sent home from the hospital with a healthy report.

At three months of age, Andrea started to notice a strange Glow in Ryder’s left eye when taking flash photos of him.  At first she believed the glow was due to a glitch with her camera phone.  However, once she purchased a new Nikon camera and still saw the Glow, she remembered a story she had seen several years before of a little girl whose eye was glowing. 

Concerned, Andrea mentioned this recurring Glow to her pediatrician at Ryder’s four month well visit.  Her pediatrician did a red eye reflex test in the office and discovered that Ryder had an abnormal reflex.  She was sent to see a pediatric ophthalmologist the next day.  Here she was informed that Ryder had a mass in his eye and she was sent to see a specialist where they were informed that Ryder had Retinoblastoma.  After an exam under anesthesia the next day, they discovered that Ryder had a class C/D tumor without seeding.  An MRI revealed that the cancer had not spread to his brain and was contained to the left eye.

Living in Scottsdale, they were admitted to Phoenix Children’s Hospital.  Here they were advised to start systemic chemotherapy immediately to fight the cancer.  However, when they were told that one of the side effects of systemic chemotherapy is an increased risk of developing leukemia, Andrea and her husband took pause.  They were very concerned, as  children born with Down Syndrome  already have an increased risk of developing leukemia.  They were given the weekend to research all of their options.

Andrea said it was frustrating as they could not find another child who has both Down Syndrome and Retinoblastoma.  There was not a clear course of action to follow.  During their research, they discovered that Sloan-Kettering Cancer Center in New York offered an alternative to systemic chemotherapy.  They were treating many cases of RB with Intra Arterial Chemotherapy.  With this type of treatment the chemotherapy travels directly to the tumor in the eye allowing the medication to go directly to the eye and not throughout the entire body.  Both Andrea and her husband believed this was the best course of action and reached out to Sloan Kettering.  They were accepted by Dr. Abramson, Chief of Ophthalmic Oncology.

The decision to treat Ryder with this form of chemotherapy proved to be a very good one.  Ryder and Andrea traveled back and forth to New York for eight months while Ryder underwent two rounds of chemotherapy.  After these treatments, his tumor was completely calcified and he was considered cancer free! Dr. Abramson called it a rare miracle. Ryder was released back to the care of Phoenix Children’s Hospital, which has now also started to treat many RB patients with IAC.  

Ryder is now checked every twelve weeks to make sure there is no re-growth of the tumor.  He also has an MRI every six months to further check that the cancer is contained. 

He has very limited peripheral vision in his left eye, and this vision is not likely to improve.  But this vision loss does not slow him down. Ryder has been doing great achieving many milestones. He is a super busy little guy who loves to chase his big brother and anything that has to do with Bubble Guppies.  Ryder has been a fighter since he was just a few months old.  Andrea and Joey are amazed by his resiliency and are looking forward to when his only fight is wrestling with his big brother.