Asher was diagnosed with Retinoblastoma in October 2016, three weeks after his first birthday. His left eye had always been a concern of mine. His first pediatrician dismissed my concerns and reassured me that eyes in infants are not symmetrical. By the time he was 10 months old, it was clear something was not right. He had a lazy eye, but the way it was presented was not typical. If he looked in any direction, his left eye would move in the same direction but lag behind. At his 12-month wellness check, his new pediatrician found that he failed the red reflex test. She was unsure what was wrong based on the presentation, but she referred us to a pediatric ophthalmologist.
Three weeks later, the ophthalmologist told me he could not diagnose it, but my baby definitely had cancer and we needed to go to Duke immediately. After our appointment at Duke where his cancer was confirmed, it was clear he needed to be treated at Wills Eye Hospital and CHOP in Philadelphia. His ocular oncologist, Dr. Carol Shields, had us review flash pictures that we had taken with our phones. In hindsight, we were able to see the white glow in pictures dating back to when Asher was just 6 months old.
He had 6 intraarterial chemotherapy treatments. This is a revolutionary delivery of chemotherapy through the artery that is feeding the tumor. Like with an angiogram, a catheter was inserted through his femoral artery and threaded up to the ophthalmic artery where the chemo drugs were delivered for about an hour. He was sedated for 6 hours after each procedure to ensure he would lay flat on his back to allow his artery to heal. In addition to these treatments, he has had several laser and cryotherapy treatments performed during his exams under anesthesia (EUA). Because of the location and nature of his tumor, his follow-ups included frequent EUA until recently. He also required sedated MRIs every 6 months until last year.
Because his diagnosis was so young, his cancer diagnosis was one of the establishing factors in our family. He and his brothers don’t know a life that is any different than cancer life. We are fortunate that he does not remember any of his treatments. Anesthesia, blood draws, and follow-up appointments have just become a normal part of life. I did quit my job and stayed home with him for four years.
We were just given the news that he is now in survivorship, and he has graduated to annual visits to Philly. This is huge!
Hope session by Shannon Anderson Photography | Instagram