One day, the sun shone through the living room window directly onto Austin’s 4-year-old face. With the light hitting his eye in just the right way, a friend noticed she could “see through” Austin’s eye when looking at him from the side. I too noticed what she was referencing. However, we could see nothing abnormal looking at him straight on. From the side view, his eye looked similar to a snow globe. I soon came to believe God was shining His light on Austin’s eye. But knowing this could be a sign of something more, I was prompted to call our ophthalmologist.
After describing what I was noticing, our ophthalmologist told us to come in on his “emergency on-call shift”. He seemed to know immediately what this might be but wanted us to see a specialist to confirm. He reached out to Dr. Stout, a pediatric ocular oncologist at Casey Eye Institute in Portland, Oregon, whom he had studied under. We were given an emergent referral.
We met with Dr. Stout a few days later for a thorough exam and an ultrasound of the eye, which took an hour as Austin wanted nothing to do with it. That evening Dr. Stout advised us that Austin had either A) Coats Disease or B) Retinoblastoma (cancer of the eye). The next day Austin had an Exam under anesthesia (EUA) to determine the diagnosis. Those results concluded he did in fact have Retinoblastoma.
The following day he had a brain/orbit MRI to reaffirm the diagnosis and the extent of the cancer. It was determined that Austin had a tumor that had caused him to be almost blind in his right eye. He was diagnosed with Unilateral Retinoblastoma/Stage D, with Optic nerve and choroidal invasion.
Looking back we found only two photographs showing the “glow”. I remember him running into our room at night, screaming “Monsters, monsters in my room”. We later learned that blindness was causing shadows in his vision. He really had no other symptoms. We truly believe God was watching over him.
We sat down with Dr. Stout who advised that the best course of treatment would include right eye enucleation due to the extent of the tumor. Just one week later, his right eye was removed. The following week we learned his cancer had invaded the optic nerve and also choroidal invasion. His medical team felt they had removed the line in the optic nerve however referred us to the Doernbecher Children’s Hospital Oncology Department. Here we met with Dr. Melanpoti who advised Austin to receive six cycles of systemic chemotherapy.
The years of treatment and after were often difficult. He had much difficulty with his prosthesis and we struggled to get him to keep it in. He also suffered from neutropenia, broken ulna and radius, multiple teeth removed, body rash from soaps due to chemo, tongue-tied, and finally a sebaceous cyst on his scalp. But through all of this, Austin persevered.
Austin attended a cancer camp from age six on. When he “graduated” from camp, he went back as a counselor. Austin is now nineteen years old and thriving! He chooses not to wear a patch, glasses or prosthetics which is difficult for us but as a 19-year-old young man, he gets to choose. His heart is wide and his spirit resilient. He found strength through love and humor. Austin knows he is still here for a purpose, and will be attending Western Governors University (WGU) to become a post-secondary teacher. He then plans to move on to academic administration.
The story is so much deeper than what I have shared. The multiple other challenges our family had between October 2009 and June 2010 reminded me of Moses and the Ten Plagues. But God redeems. His joy saw us through those difficult times. His story helped create the CRADLE app. We are deeply grateful to the team who created this app, to his medical team, and to family and friends. We are also very grateful to those that live and work so hard to create awareness around Retinoblastoma. We hope that by sharing our story we will help spread awareness of the Glow and possibly reach another family who has not yet discovered their own diagnosis.
