Written by Courtney Ingle
Taylor was a bright girl, right out of the gate. She was talkative, with an extensive vocabulary. She loved music, books, and dancing, and had all of our family wrapped around her finger… She was spoiled, and we were unashamed of it.
And she had the most beautiful eyes.
When Taylor was just one month over her 2nd birthday, I was changing her diaper and noticed a glow in her right eye. I thought for sure it was the reflection from the new ceiling fan in her room. At least, that’s what I kept telling myself as my anxiety-ridden Mama’s heart kept skipping beats.
I saw it again the next evening. We were sitting at the table with my husband’s family at a restaurant. In the dim light of the restaurant, the glow could be seen. My husband told me he could see it, too.
A Google search named off all the possibilities: Cataracts. Glaucoma. Retinal detachment. Retinoblastoma, a pediatric cancer of the eye.
My heart sank. I just knew it was retinoblastoma, without even having a diagnosis. I don’t know why it gripped me, but it did. Looking back, maybe it was God preparing me for the storm ahead.
On Monday, October 7th, 2019, we were at Crawford Eye Care in Ridgeland, Mississippi. Karmen Crawford confirmed what I had been fearing. There was a mass on Taylor’s retina.
Taylor was referred to the Mississippi Children’s Hospital for an eye exam under anesthesia the next day. The doctor came out and told us there was a tumor; it was malignant, and it appeared to have started spreading… The tumor had little seeds around it.
Within two hours, we were called and told Taylor would have appointments the next day at St. Jude Children’s Research Hospital in Memphis.
The next morning, Taylor was under anesthesia again, this time at St. Jude’s. Dr. Matthew Wilson performed another EUA. We felt that the timing was absolutely God-directed; you don’t just get a world-renowned cancer specialist at your disposal on a random Wednesday.
“Unfortunately, you have options,” he told us, as Taylor was in recovery. He explained that her tumor was graded a “D,” her retina was all but obliterated, and she was blind in that eye with no hope for restoring any vision. The seedlings could be headed for the optic nerve, which could then lead to the brain. Further testing would reveal whether or not that was the case.
Dr. Wilson and Dr. Rachel Brennan walked us through the options. We could try chemotherapy. Eighteen months of chemo, laser, and cryotherapy to the eye would calcify the tumor and stop it from spreading. There would be side effects, of course, but they could be mitigated. Loss of hearing, loss of muscle tone in the face, and subsequent cancers were possible. If she didn’t respond as well as hoped, the eye would be enucleated.
Or, we could choose enucleation from the get-go. Assuming she didn’t carry the RB-1 gene, (which limits tumor suppression and could lead to bilateral retinoblastoma and potentially other subsequent cancers), removal of the eye could mean removal of the cancer. Of course, after surgery, they’d have to send off her eye and optic nerve and still wait to see if the cancer had spread beyond her eye. The genetic testing could take up to six months to reveal if she had the gene or not.
It was an impossible choice.
We truly believe that other parents in the waiting room were God-sent to comfort us and guide us. One family was there, waiting for their daughter to wake up after treatment, and they told us, “you should do the surgery.” To them, the risk was too much to bear. They had fought against enucleation, unsuccessfully.
When the MRI revealed that the tumor had not spread beyond the eyeball itself, we were ready. We chose for Taylor to have the enucleation. Taylor had suffered so much with the inconsistent schedules, the constant prodding, and the general icky feelings after anesthesia… and though she kept her usual playful spirit, we couldn’t justify going the chemo route to save an eye that would never have vision just to keep her physical eye.
On October 16, 2019, less than two weeks after the nightmare began, Taylor was placed on an operating table. She had two eyes when I laid her down while she screamed through the gas mask. When she was given back to us, she had one eye.
Two weeks later, on Halloween, we got the call that her optic nerve had been studied, and no cancer cells were found. She was cancer-free.
This year, Taylor Scott will celebrate five years cancer-free, which is considered cured by the medical community. She is thriving in kindergarten. She won her school’s Student of the Month when kindness was the featured character trait. She’s mature, she’s loving, and she has beautiful eyes, though one is a prosthetic.
If you looked at her, you wouldn’t be able to tell she has monocular vision. Unless you were told, you wouldn’t know there’s anything about her that sets her apart from other kids physically. She is just like any other child.
But, she also isn’t. She’s a testament to God’s faithful love when the trials and tribulations come. She’s a testimony. Every milestone is a miracle.
It is our hope that Taylor’s journey will also inspire others to watch for the glow in their child’s eye and follow their instincts, staying alert to those little messages to help guide them through.
