As a writer, I really like words and particularly enjoy learning new ones.
But sometimes, words are scary.
Two years ago, in October 2020, our family learned two words that will be with us forever.
The first was “retinoblastoma,” which means a tumor in the eye.
It was Monday, Oct. 5, 2020 when I took our not-quite-2-year-old daughter Hazel to the optometrist. My husband and I thought she might need glasses because her left eye wasn’t tracking correctly. I had also noticed a white glow in her eye when she looked up into our kitchen light during meal times, though at the time, I thought it was just a strange reflection. I guess technically, I wasn’t wrong.
It was the light reflecting off the white of the tumor inside Hazel’s eye. This is called “The Glow,” in the retinoblastoma community and is a key indicator of the disease.
We saw Dr. Tiffany Brink at Sioux Falls Family Vision. She examined Hazel’s eye and became visibly concerned. She said that she had made a call to Dr. Geoffrey Tufty at Sanford, the only pediatric ophthalmologist in Sioux Falls. She had pulled some strings and had gotten us scheduled to see him the very next morning.
With that one phone call, she saved Hazel’s life.
Tuesday morning, Oct. 6, we found ourselves in Dr. Tufty’s office. Through a series of exams and an ultrasound, he confirmed that Hazel did appear to have retinoblastoma in her left eye.
Dr. Tufty referred us to his colleague, Dr. Jill Andesron at the Fairview Masonic Children’s Hospital in Minneapolis, who specializes in pediatric ophthalmology issues.
By Thursday, Oct. 8, we were in Dr. Anderson’s Minneapolis office, getting the official diagnosis.
Ironically, Oct. 8 is our wedding anniversary. We spent the evening talking about how our pledge “in sickness and in health” went beyond just the two of us.
We were back in Minneapolis the next week for Hazel to get an exam under anesthesia that would help Dr. Anderson know the best course of action.
People are also reading…
It was then that we learned the second word.
“Enucleation,” or the surgical removal of the entire eye.
The size of the tumor and the amount of seeding was massive, taking up over two-thirds of her eye. We could try chemotherapy, but even with double the rounds, there was still a roughly 50% chance that Hazel would end up having to have her eye removed. Even if the chemo was successful, Hazel would never regain vision in that eye.
Chemotherapy, as wonderful a cure as it is, is brutal on the body, especially little ones. So we opted to spare Hazel’s little body the torture of chemo and chose to have the eye removed.
So, three weeks to the day from when I took her to the eye doctor, simply thinking she needed glass, on Oct. 26, 2020, Hazel had her left eye removed.
Now, two years later, we’d make the same decision in a second.
The very next day, she was up and playing just like normal.
After her eye socket had healed, she was fitted for a prosthetic that is hand-painted to match her right eye perfectly. Now, if one didn’t know Hazel’s story, I don’t think they’d be able to tell her eye is fake.
Since it was around Halloween when Hazel’s eye was enucleated, we decided to make the best of it. She went as a pirate that year, complete with a Jolly Roger drawn on her eye-patch.
We’ve decided humor is one of the best ways to deal with the situation. We never want Hazel to feel ashamed of her eye, but rather embrace it as her own kind of special super power.
That’s why, each year, on Oct. 26, we make eye-ball cookies to take to her daycare classmates, celebrating the day that Hazel kicked cancer to the curb.
Today, Hazel is the happiest, smartest, silliest little girl in the world. She’ll be able to play sports and drive a car. She’ll be and do anything she puts her mind to.
She sees the world in an extra special way, and not just because she has only one eye. She sees and feels with her whole heart, mind and soul and perceives the world in ways I can only imagine.
If you see a child with a white glow in their pupil, please reach out to your pediatrician or eye doctor immediately or visit knowtheglow.org.
Melisa Goss, Assistant Editor for the Tri-State Neighbor, is a South Dakota farm girl whose love of travel has allowed her to see ag’s vital impact around the world, from America’s heartland to the rice paddies of Southeast Asia and many places in between. She makes her home in Hartford with her husband, daughter and miniature schnauzer. You can reach her at email@example.com.