Diagnosis: Retinoblastoma
This is our hero, Walker. He is currently twenty-one months old. Walker was born with two congenital heart defects, TAPVR & ASD, and had open heart surgery at only six weeks of age. Since Walker’s repair, he has had clear echos and we are now only asked to return for annual cardiologist appointments.
Just when we felt we were getting over that huge hurdle, our baby boy was hit with another devastating diagnosis. At five months old, Walker was diagnosed with Bilateral Retinoblastoma which is a form of eye cancer.
I noticed a white glare on his right eye a few weeks after his heart surgery but didn’t think it was anything to be concerned about. I mentioned this Glow to our pediatrician office on a few occasions but they didn’t know what it was. Finally the third time I brought up my concern, Walker’s main pediatrician suggested we see an ophthalmologist. We couldn’t get in with an ophthalmologist right away so I just scheduled a regular appointment with an eye doctor. There they said they believed Walker had either Coates Disease or Retinoblastoma. We were immediately sent to Children’s Hospital in Dallas.
The Ophthalmologist there did a quick exam and told us they believed Walker had Retinoblastoma, cancer of the eye. They suggested doing an exam under anesthesia and MRI to confirm this diagnosis.
Even after they explained what Retinoblastoma was, I had no idea what they were talking about. I just didn’t get it. I couldn’t comprehend what they were saying. It was not until the ophthalmologist said the word chemotherapy did it hit me, Walker has cancer. At that moment, I just blacked out. I didn’t hear anything they were saying and I just started to cry while holding Walker. How could this be happening?
The next few days were a blur. He had his exam and MRI and they confirmed it was Bilateral Retinoblastoma. Not only was there a tumor in his right eye but also his left. I remember sitting in a cold, small room with the oncologist going over a ton of paperwork and discussing getting started with systemic chemotherapy.
We left later that day and just didn’t feel right about the plan. We knew what chemotherapy could do to his little body and we were scared what it could do to his recently repaired heart. We went home and started researching as much as we could. A friend of ours found a doctor in Houston that was performing a different form of chemotherapy called Intra-Arterial Chemotherapy (IAC). We decided to drive down to Houston and meet with Dr. Schefler and Dr. Dannenbaum at Memorial Hermann Children’s hospital.
During that first appointment, we immediately knew we were where we needed to be. Dr. Schefler and her team were so comforting and really made us feel like they would do the best for Walker. They scheduled us to return the following week to start Walker’s first round of IAC. Walker ended up having two rounds of IAC but ran into some complications after the 2nd round. Walker’s right eye had some swelling and his optic nerve seemed to be enlarged. Our Doctor was concerned about this and continuing treatment on the eye without knowing if the cancer has spread. She suggested enucleation, removal of the eye. Her goal is always “life over eye” and since Walker still had vision in his left, this was the best decision. We had a really hard time deciding but we agreed to have his eye removed. He was eight months old at the time.
Since then Walker has received countless rounds of laser chemo treatment, received his prophetic eye and for six months, he had no active tumors! Then on May 12th, we received some news that the cancer could possibly be back. There was a new spot found during his exam that is concerning to our Doctor. The spot is very small and difficult for them to even know if it was a new tumor. However, they did another round of laser chemotherapy just to be safe. We will return in five weeks for another exam.
Looking back at our flash photos we have found three that clearly show the Glow. I am very grateful that I was able to see Walker’s Glow with my own eye and that I followed my “mother’s instinct” to find a reason for it. We are so incredibly grateful for the support from our friends, family, strangers, and for all the prayers! Our little warrior is not going to let anything stop him! He is brave, resilient, and a true fighter!
Please consider donating to Walker’s GoFundMe page. This little superhero deserves our super-support!!!
