On average 45 parents in America are told each day that their child has cancer. Amy Nolan Terrell has become an advocate for those children and parents after experiencing that terrible pain herself prior to the Aug. 3, 2018 death of her daughter, Gentry. This past week was the five-year anniversary of Amy hearing Gentry's diagnosis.
"Some days it doesn't seem that long," Terrell said. "Some days seem like an eternity."
Gentry was diagnosed in 2017 with DIPG, diffuse intrinsic pontine glioma, a fast growing brain tumor. The doctors gave Gentry six to nine months to live. Terrell said she looked out at the Mississippi River and thought, "Nope. This is not the end. This is not a death sentence. We're going to live it up for the time we have even if it's only two days."
Gentry was strong and went through radiation with no sedation and tolerated it well. Terrell said she hopes she can be as strong as Gentry one day.
"She touched more lives in six years than I have in 36 years," Terrell said.
Terrell now spends a lot of her time advocating for parents in many ways. She is preparing for the first nationwide moms retreat in March with 50 moms from 25 states represented. She works with groups advocating for safer and different treatment options. She was part of the group that got the Star Act passed for safer and newer treatments for childhood cancer. She even goes on Zoom meetings with congressmen regularly because she isn't afraid to talk.
She wants to be a wish granter for the Make A Wish Foundation and do more volunteer work at Disney World, where Gentry had her Make A Wish granted.
"A very stinky world led to some awesome support. Volunteering more has helped my grief. I could easily be that person who spirals into a very bad place. Paying it back is a suave for my soul. Taking the focus off of self helps you process. I have to stay busy," she said. "If I stop, it opens up the possibility for depression. One day I'll have to stop and deal with those demons, but while I can stay busy, I'll stay busy."
Terrell knows firsthand just how devastating the grief from losing a child is. She takes it one day at a time.
"It's so hard to give advice to someone who has lost a child," Terrell said. "You don't know where they are. What you say can be seen as wrong or cynical. People say take one day at a time, but that one day can be so long. Take one second at a time. Before you know it, you've made one minute. Then one hour and then one day."
Her faith and her sons give her the reasons to keep on working and volunteering.
"Grief is such a heavy weight," Terrell said. "Sometimes you have to shift it. My other two are my driving force. They've already experienced the worst thing. I don't want them to experience more. Grief affects the whole family. God experienced the grief that I felt. She's in heaven, and I have a choice to see her again. I don't see her now, but we still take family pictures with her picture in them. She happened. That love happened. I don't know how people grieve without hope. There have been days I didn't want to get out of bed, but I have two children that deserve to have my love and support. They are fiercely lovable."
Terrell said she ran from teaching at first but has now taught at Columbia High School for 14 years.
"I have a strong personality," she said. "I can come across as very abrasive, but my teaching career has been my biggest ministry after my family. My students become my children. I fix ponytails. I'm there for them to confide in. I keep hair spray even though I haven't had hair for four years."
Terrell said she never thought she would shave her hair, but she participates with St. Baldrick's, the largest privately funder of cancer research. She now colors her hair and let's her students pick the color if she raises enough money. She plans to shave her head again in June.
Terrell said she can't imagine being anywhere else than Columbia.
"I love to travel, but I love coming home," she said. "I never got to travel as a child. I read so much, I felt like I was traveling. You can't teach someone to love to read, but you can hack into their passions."
Terrell met her husband, Brydon, the first day of first grade. They started dating at Columbia High School their senior year when he was her husband in family dynamics and consumer science class. They share two sons, Wyatt, 12, and Waylon, 7.
"We've been trying to budget together since 2004," Terrell said.
They are also trying to make their lives and those of their children good ones, even if there is a hole that can never be filled. But they do what they can and make sure that hole is never forgotten, nor alone. They travel as much as possible, taking Gentry with them wherever they go.
