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In January 2017, I took my 6-year-old son Devin to a private snowboard lesson at a local ski resort. During the lesson, he fell and hit his head — not particularly hard, but in a strange way, according to the instructor. Afterward, while we were inside getting food, Devin collapsed again as he tried to hand money to the cashier.
I tried to brush it off — maybe he was just tired or hungry — but a friend pointed out something unsettling: his eyes didn’t look right. Then he fell off the stool next to us. I scooped him up and rushed him to the resort’s first aid station. The doctor on site suspected a mild concussion, and so did his pediatrician after we returned home.
But that wasn’t it.
Devin went back to school, only to begin vomiting profusely on the bus ride home. Alarmed, we returned to the pediatrician, who urged us to go to the hospital immediately for an MRI. That’s when everything changed.
A doctor pulled me into the hallway, away from Devin. He looked me in the eyes and said, “There’s a spot on the scan in a place it shouldn’t be. We’re not equipped to deal with this here. An ambulance is waiting to take you to the children’s hospital.”
Devin’s father was out of town traveling for work, so I called him and told him to rush home. My cousin met me at the hospital. There, a team of twelve doctors whisked Devin away for more tests and scans.
The next morning, a group of neurosurgeons and neuro-oncologists sat us down and said the words that shattered our world: “Your son has diffuse intrinsic pontine glioma, or DIPG. He has eight months to two years to live — if you’re lucky.”
I don’t remember what happened after that. I only remember feeling like I was on the ground.
Our Community
We came home that day to a house full of family and friends. They cooked, cleaned, started a meal train — they did everything. One of my sons and I have Celiac, and our community made sure we never had to worry about what we were eating. Not once.
Before Devin’s diagnosis, I was the kind of person who tried to do everything myself. But this? This was bigger than me. We needed help, and we learned to ask for it.
Because of that support, we could focus on what mattered: trying to save Devin and making the most of the time we had left. In eight months and three weeks, we created more memories than most people do in a lifetime.
Losing Devin was the greatest heartbreak of our lives — but in the midst of all that pain, we also experienced an overwhelming amount of love. People we never knew became family. People we didn’t expect showed up. We weren’t alone.
What Do We Do Next?
When your child is diagnosed with DIPG — a disease with no cure, no treatment, no survivors — your first thought is: How is this even possible?
We were told to search ClinicalTrials.gov. At the time, one of the biggest questions was whether or not to do a biopsy. We chose to do it. Devin was only the 26th child to undergo a biopsy for DIPG and just the second in Boston.
I believed Devin was going to be the first kid to beat this. He was born on the five-year anniversary of my mom’s death from breast cancer. I truly believed she sent him to us to heal our hearts. There was no way he was leaving. I was so full of hope. Hope is the only thing stronger than fear, and I lived by those words with everything I have.
And that’s how our “Why not Devin?” saying came to fruition.
Steroids
Once he started steroids, Devin was starving all the time — he’d wake us up at 4 a.m. begging for cheeseburgers.
His humor shifted, too. He was still funny, but in a way that felt deeper, almost older. The steroids altered his appearance, and that was hard. It’s something a lot of kids with DIPG go through.
After radiation, he was able to go off the steroids. The tumor didn’t shrink much, but it stabilized. From May to July, we had three incredible months.
Clinical Trial
Devin, second from left, and his brothers
When Devin’s gait started to worsen again, I threw myself into research. Every night, I’d get all four boys to bed by 9:30 p.m. and stay up until 2 or 3 a.m., reading, reaching out to other families, doing anything I could.
We were excluded from every U.S. trial. That left two international options. We chose one in London. Devin had four catheters inserted through the front of his brain and two through the back to administer chemo into the tumor.
Today, DIPG trials are more accessible. But back then, the burden was on parents to find the options. And you have to trust your gut — which is so hard when you’re terrified.
Neil Armstrong walked on the moon in 1969. Seven years earlier, his daughter died of DIPG. We’ve made incredible strides in space exploration, but in over 55 years, we still haven’t found a cure for this.
Steroids, Again
When Devin had to go back on steroids, it was tough. He wasn’t himself. He became violent, and he directed it at me. It wasn’t who he was, but it was part of the side effects from the medication.
No one prepares you for that. No one talks about what it’s like to be screamed at, hit, or hurt by your own child, especially when you know it’s not really them.
His Final Days
Devin spent the last three and a half weeks of his life in the hospital before suffering a massive seizure. We knew then that the outcome wasn’t going to change.
We asked our other three boys, “Do you want to bring him home or stay here?” They chose home.
It was the best decision we made — and it was their decision. That matters.
Life Today
My second son is about to graduate from high school now. I pulled out an old photo from his first day of kindergarten — a picture with all my boys. It’s surreal. I wonder what Devin would be doing now, even when I try not to.
Between Devin’s birthday (Oct. 20) and his death anniversary (Oct. 27), we celebrate “Devin Day of Friendship and Kindness.” The boys use their own money and do acts of kindness. I feel Devin with them every time.
His legacy lives on in laughter, love, and the kindness we put into the world. Because hope is the only thing stronger than fear.
