Diagnosis: Bilateral Retinoblastoma
Asher was only 13 weeks old when he was diagnosed with Bilateral Retinoblastoma. In his first few weeks we knew he had visual issues, we knew there was something else going on we couldn’t put our finger on, he had other health issues we were sorting out, and we were on the phone and in offices trying to get answers.
When we caught an odd flicker on video Easter Sunday, it led within days to an appointment with Neurology and then with Ophthalmology. The new young tech came out of that second office room to blurt, “Your son has Bilateral Retinoblastoma, do you know what that means?” And promptly sat down. Only later did I discover that was his first experience with Rb and he didn’t handle it well himself. For me, having dealt with medical issues many times over, my brain went to the roots of the words and I realized very quickly my little boy had cancer in his eyes. Both. Only later did we know about the Glow – and we could see it back in photos as far as two days old, when he first opened his eyes. There was no available treatment in our area, or in our state. In fact, not even our neighboring states! We traveled to Utah where he was ‘followed’ by a doctor in Boston. This amazing physician, Dr. Aparna Ramasubramanian, became our lifeline of hope. She moved to Utah not long after our son started chemo, and we traveled regularly for rounds of chemo, IAC, MRI, laser and cryo treatments. He even had a direct shot of chemo into his eyes. For just over a year we continued treatment in Utah, and then Dr. Ramasubramanian moved to Kentucky.
We had to fight insurance over ‘continuity of care’ when they wanted to then send my son to California or Texas. While waiting for answers we worked with Miracle Flights, the hospital, cancer center and the Ronald McDonald House. We found a limo company that also ran a small shuttle van, eliminating the driving headaches with a small sleepy child and luggage on our many trips. While in Kentucky my son underwent continued treatments to include radioactive plaques on both eyes (at different times!), more injected chemo, and more IAC in Utah. My mind was reeling at times with the progression of treatments, and I was thankful for one specific nurse who had Rb as well as did his son and his granddaughter. He was a blessing of comfort. Our family will never forget my son and I being in Kentucky for a treatment only to learn he would need direct radiation. Thank goodness for cell phones and online capabilities!
We flew back to our home state, had a few hours with the rest of our large family and immediately drove to Utah the next morning. That began a nearly two-month stretch of radiation, over the holidays. The Ronald McDonald house was amazing. My husband drove down every other weekend, leaving a different child or two with me. I drove up twice with permission and exchanged children. It is a blur, with lasting affects to this day, but we made it through as a family with then no support system other than my parents and one other family from our former church. We finished those nearly two months and had less than 24 hours before flying back to Kentucky. And then flying home to drive days later back to Utah for enucleation.
I grappled with that last word. I had prayed for months for another answer. But at barely two years of age, on Good Friday, my husband and I sat in the waiting room while our son had his left eye removed. I was heartbroken. I had no one to lean on other than God and my husband. Our little team. We took our little guy back to the Ronald McDonald house where he promptly decided he was DONE with napping, he was going to run around. Have you ever tried to keep a recently anesthetized toddler still?! This child was RUNNING! He was laughing! And we quickly discovered he had a sense of incredible humor we had never seen before.
What we took to be a horrible thing was a blessing to him. He could SEE out of his right eye! And in his toddler language he joked on Easter Sunday with his little class, “Where’d my eye go?!” Since enucleation we have had follow ups every six months in Kentucky. When we moved in 2018 our new insurance denied Kentucky, and we were thankful to find that although we could not continue under Dr. Ramasubramanian we would have the opportunity to be seen by her colleague and friend, Dr. Miguel Materin. Asher is seven now, and is gearing up for his third prosthetic eye in five years. He’s a growing boy! While his other medical issues have caused global delays, he is still learning to read, riding a bike without training wheels, tending animals, and living life to the fullest. He loves pictures, animals, and anything with wheels. He loves going camping and on hikes. He’s just a boy…with a remarkable story of hard days and easy days, and a family who adores him and fought for him. He’s not just a survivor, he’s our super hero. While Retinoblastoma may have changed things in our lives, it has also made us ALL stronger, more aware, and knit us closer together.
