In 2013, Danielle was a busy single mom suddenly launched into the unknown by her son's cancer diagnosis. Here she reflects on that chaotic time and shares what it’s like on the other side.
HUNTSVILLE, Alabama — Devin, my youngest, just finished his freshman year of high school. He did great, especially considering how the pandemic changed everything. Maybe being able to learn in his pajamas from a hospital bed at St. Jude Children’s Research Hospital prepared him for remote learning.
See, Devin was diagnosed with pineoblastoma — a rare brain tumor — when he was just 7.
All these years later, I still worry. Even after the successful treatment at St. Jude, and the clear scans on our return visits, there’s still a tiny part of me concerned the cancer may return, no matter how long he’s been free of it.
It’s a part of our lives we end up explaining to new teachers, new coworkers, new friends, because it’s part of who we are. That’s the reality of life after cancer. But that’s the blessing of it, too.
Life. Devin’s life.
Doing well at high school, despite having had cancer — and his autism, diagnosed in kindergarten. Displaying a typical teen’s hearty appetite, especially for the local barbecue, and passion for video games. Cheering Auburn, because that’s grandma’s team. Clowning around, making us laugh.
And reminding his big brother, Donovan, that he was “St. Jude famous,” from appearing in several fundraising campaigns.
So, sure, I still worry. I guess I always will. But even a semblance of normal is something to savor. Because it means Devin is still with us. He survived.
And there was a time when I didn’t know if that was possible….
It was back in the summer of 2013. Devin had a bad headache and a runny nose: signs of another sinus infection. Where we live in Alabama is terrible for allergies — there’s tree pollen, grass pollen, weed pollen, spanning March to September.
By the third day of antibiotics, though, Devin didn’t want to play with Donovan, he was sleeping a lot, he wasn’t eating, and that’s not Devin. He was crying in the middle of the night in pain, this kid who would jump off anything and was totally unfazed by the resulting bumps and bruises. So I took him back to the doctor for stronger antibiotics.
Because Devin was so sleepy, the doctor sent us to the emergency room, where a CT scan found a huge tumor in Devin’s brain. We were referred to St. Jude immediately and told an ambulance was on the way.
There was no 'go home and get some stuff.' I had left dirty clothes all over because my plan was to do laundry while Devin napped. Now I had to call my mom and say, 'Could you please pick up Donovan from daycare, and oh by the way, we’re going to Memphis.'
The first couple of days, all I had were the clothes on my back.
Devin was diagnosed with stage IV pineoblastoma. For more than a month, he was getting radiation under sedation five days a week, and during this time, I would sit and wait in one of the hospital common areas, alone with my thoughts.
I probably looked calm, in the comfortable blue armchair, surrounded by cheery, child-like mosaics. But my worries were swirling. Was Donovan doing okay, staying back in Alabama with my mom? Was Devin going to fall behind in school? Could I keep my finances in shape while not working?
And the big one: Devin was doing extremely well, but I knew what could be. I had a friend back home whose daughter was treated at St. Jude, and had passed away.
St. Jude did so much to carry us, but the fact is, when your child has cancer, a lot of your world is worry. What was our future going to look like?
Well, I’m happy to say it looks like this: Devin is turning 15 this year. He’s coping with his autism — succeeding in a classroom setting, just coming out a couple of times a week for occupational therapy.
He’s an extremely funny, energetic kid. Some children with autism are not very social. He is. It takes him a second to feel people out, but once he’s seen them a few times and gotten used to them, you cannot get him to shut up.
I look at him now and feel blessed to say it. The future, like Devin, is full of life.