Christine and her boys in Turks and Caicos, March 2017, after Devin (green shirt) completed 33 rounds of radiation.
In October 2017, Christine’s life purpose changed overnight. She had spent the last eight months and three weeks fighting to save her son from brain cancer, but now she would spend the rest of her life fighting for a cure.
Christine Suau lived with her four sons and husband in Framingham, Massachusetts, leading what she describes as a “fun and chaotic” life, running between soccer games, lacrosse, and lessons at the ski hill.
Christine’s four active boys were born within five years of one another, and she didn’t want to miss a second of it. “I didn’t regret giving up my career for a minute,” says Christine, reminiscing of her time as a buyer for Bloomingdales.
One Friday evening when her sons were at skiing lessons, Devin, the youngest and the goofiest of her four boys, had a fall, and life as Christine knew it came crashing down along beside him.
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Thought to have a concussion, Christine took six-year-old Devin to the pediatrician. By Tuesday, she and Devin were at Boston Children’s Hospital with a diagnosis that would dictate the rest of her life. “I could see the panic in the doctor’s eyes, and it was the first time I was ever scared and knew something wasn’t right,” she says.
Devin was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), a very rare form of children’s brain cancer with no survivors. “We went back to the room and I had to look at my child knowing this diagnosis, and he obviously doesn’t know,” says Christine. “I was so torn between leaving the room and sobbing hysterically and not wanting to leave him for a second.”
“I was emotionally afraid of what it was going to be like to cross the finish line without him.”
Despite her devastation, Christine decided there was no reason why Devin couldn’t be the first to survive. The Why Not Devin Foundation for DIPG was born. “The facts are that there are no survivors...yet,” says Christine. “There is so much research that needs to be done.”
The morning of Devin’s diagnosis, Christine had gone on a 16-mile run in preparation for her very first marathon in just a few months—which happened to be the Boston Marathon. She had lost her mother to cancer years prior and her efforts to raise money earned her a bib in the race.
That 16-mile run would be Christine’s last run for months. After, her dedication switched to ensuring that she, her then-husband, and all four boys create as many memories as possible over the next eight months and three weeks of Devin’s life.
Devin underwent six minutes of radiation every morning. “We referred to [the cancer] as a rock in his head that we were doing everything we could to get rid of,” says Christine. During Devin’s 33 rounds of radiation, Christine says he never complained and always wore his mask that they turned into his favorite superhero, Green Lantern.
Follow Christine’s story @meanttobeeme
Green has been a significant color for the family and entire community of Framingham ever since. Dozens of neighbors changed their outdoor lights to green bulbs to show their support and love for the entire family.
In April, after months of practically living at the hospital with Devin, Christine still had her bib for the Boston Marathon. She hadn’t trained since the day of the diagnosis but decided to run just half of the marathon to support the cause she had raised so much for. Throughout the course, supporters wore green and held “Why Not Devin” signs to motivate Christine to keep pushing. Although unprepared, part way through the race Christine was told Devin would be waiting to run over the finish line with his mom.
“He jumped into my arms and wiped away my tears,” says Christine. “After a minute, I put him down and we ran hand in hand across the finish line where my other boys were waiting with signs.”
Devin’s story quickly went viral, capturing the hearts of many including Kim Kardashian, Tom Brady, Ellen, and generous others. With research and treatments being extremely limited in the US, Christine and the entire family took Devin to England for everything from experimental treatments, holistic alternatives, and even a blessing by the Pope.
The family spent $350,000 trying to save Devin’s life before he passed away just shy of nine months later.
After Devin’s death, the media attention turned to her personal life, as she and her now ex-husband went through a very public divorce. “It was a bit of a rollercoaster,” says Christine. “I thought we would be able to stay together, but it got much worse. I found out things that I don’t think I would have found out had he not unraveled after Devin died.”
But in spite of her tremendous heartache, Christine has continued on, both for her family and her cause. This past year, Christine finished her third Boston Marathon and plans to run again in 2020. “I was emotionally afraid of what it was going to be like to cross the finish line without him,” says Christine of her second Boston Marathon only six months after losing her youngest.
“Being able to finish my first marathon with Devin is something that will stay with me forever. It was so symbolic,” says Christine. “Devin and I went through it together, but I know I have to continue his fight. Life is supposed to be a marathon, not a sprint.”
Christine and her three boys are currently living in Massachusetts. Christine is dedicated to raising awareness for DIGP through the Why Not Devin Foundation, and her public speaking business, Meant To Bee.
“[Devin] was a miracle,” says Christine. “But not in the way I thought he was going to be.”