Written by Jen DeGregorio, Director of Communications
While brain tumors are the #1 cancer killer of children, DIPG (diffuse intrinsic pontine glioma) is the specific type of tumor responsible for nearly half of these deaths. Still, the disease is woefully underfunded and most of the world is still unfamiliar with DIPG.
Working in this field, my world is filled with gut-wrenching stories of young children, typically between the ages of 5-7, who endure their disease for roughly 9 months before their sweet, precious lives are cut short. Hopelessness is a word I hear often from parents who describe their journey with this cruel disease that robs them of their children.
But recently, after decades of little progress in understanding DIPG tumors and how to treat them, things are beginning to change. On May 17 of 2019, the disease struck an unlikely victim who would change the trajectory of the disease forever.
“There’s no easy way to say this. You have DIPG — an aggressive, cancerous tumor in your brain. It’s inoperable and it’s terminal. You have about 9 months to live.”
Jace Ward, who had just finished his sophomore year at the University of Kansas, listened to the doctor as if he were giving the diagnosis to someone else in the room. 9 months to live. How could that be, when he was just coming in for an appointment because his vision had become fuzzy? Quickly doing the math, he realized that in exactly 9 months he would be just one day away from turning 21.
“I began to feel like someone else,” Jace once told me. “Like everything I had ever done, worked for and accomplished was taken away from me in a single instance.”
On the quiet drive home with his family, Jace had one dominating thought: “What the hell am I going to do in these next 9 months that can make a difference?”
While I often interview parents of children who are fighting terminal brain cancer, this was the first time I’d ever talked to a young adult who understood all too well the horror of what he was about to face.
UP AGAINST THE WORST
In the weeks following his diagnosis, Jace had gone from thinking about football and law school to spending hours with his mom Lisa learning everything they could about DIPG. They were horrified to find that less than 1% of federal funding went towards research of the disease that typically strikes kids between the ages of 4-11. Progress in understanding and treating the disease was slow, and the survival rate has remained less than 1% for decades.
Jace and Lisa also learned of a new, experimental drug called ONC201. The drug was the first of its kind to show promising results for high-grade gliomas, offering just the slightest bit of hope for DIPG patients. However, the only two trials available were for either newly diagnosed children or adults in progression, disqualifying Jace from both.
Lisa battled to get Jace on the new drug but continued to run into obstacles. After getting the pharmaceutical company, Oncoceutics, to agree that Jace qualified for expanded access use of the drug, the family then received an email from their doctor at the University of Kansas Medical Center saying the center had decided to not allow Jace the use of ONC201.
As Jace’s symptoms continued to worsen, depression tried its best to settle in, battling the part of his soul that was still filled with passion and the need to do something important with the time he had left.
In July, two months after Jace’s diagnosis, Lisa received a call from Dr. Karen Gauvin of St. Louis Children’s Hospital. Finally, after countless roadblocks, Lisa was able to share the good news that Dr. Gauvin had agreed to treat Jace with ONC201.
Looking back at my conversations with Jace and Lisa, I realize now what a huge turning point that moment was, not just for them, but for the future of the disease.
I CAN’T DIE, I’M BUSY
After just a few weeks of taking ONC201, Jace’s vision had improved so rapidly that he could drive a car again. While he yearned to live a normal life while he could, Jace couldn’t stop thinking about all of the younger kids who faced the disease before him, and all of the kids who were battling along with him. What if someone had done something more, years ago, to raise awareness or create change?
Jace began to realize that he was in a unique position. Most DIPG patients are children, much younger than himself, and unable to articulate the horror of the disease. While he still had a voice, Jace decided to use it to speak up on behalf of all of the kids who couldn’t.
Amidst radiation treatments, Jace flew to Washington, D.C., to speak at the 2019 NIH Symposium on Genomic Data, pushing for patients to have control of their genomic data in order to seek treatments.
“While we’re sitting deciding whether or not it’s OK for people to share their own genomic data,” he said to the crowd, “300 kids are dying every year. And they’re going without a voice.”
While there, Jace passed on museums and special offers for tours, deciding to get up each day to raise awareness amongst lawmakers. He began every conversation with, “Do you know what DIPG is?” When the staff member would reply, “Not really,” Jace would say, “Up until a few months ago, neither did I. I’m planning to go to law school but am being told I have less than six months to live. This tumor will take away my sight, hearing, my voice, and finally my breathing.”
Anyone within earshot could see that Jace was making the impact he was so desperately hoping for.
On February 13, 2020, Jace traveled to Capitol Hill to be the closing speaker at the first Congressional Briefing and Summit to discuss the state of DIPG. That was just 4 days before his stated life expectancy expired. On February 18, 2020 Jace celebrated his 21st birthday surrounded by nearly 500 friends.
More conferences and speaking engagements ensued and Jace jumped on every opportunity he could to raise awareness for the disease that was killing him. He often brought other foundations together in partnership, funding access to the drug he had desperately needed, sharing visions he had of how to fill gaps in research and patient navigation. He could often be heard saying, “I can’t die, I’m busy.”
A SUPER BOWL DREAM
In May of 2020, due to the pandemic, the ChadTough Defeat DIPG Foundation was forced to cancel their most lucrative fundraising event, the Champions for Change Gala. The event brought in $1.3M in 2019 for pediatric brain cancer research, so when they announced they would be hosting a live, virtual event instead, Jace eagerly offered to participate.
During the ChadTough live event, Jace was interviewed by CBS sportscaster and former NFL football player, Jay Feely, about his journey with pediatric brain cancer.
Feely was struck by Jace’s commitment to do whatever he could in the time he had left to help future kids who would face his same fate.
“I was just smitten with him, you know?” Feely told The Kansas City Star. “Like, his attitude is unbelievable. He talked about how, for about the first week, he was depressed after he found out. Who wouldn’t be after you find out you might have nine months to live? But then, after that, he said, ‘You know, I made up my mind that whatever time I have left, I’m going to do whatever I can to help the people who come after me.’”
The two stayed in touch nearly weekly, and when Feely learned that Jace’s favorite football team, the Kansas City Chiefs, was headed to the Super Bowl, he put plans in motion to get Jace too.
At that point, Jace was nearly 20 months into his diagnosis. Throughout his journey, he had met many kids battling DIPG and heard countless heartbreaking stories from parents who had already lost their child. Jace saved the kids’ photos on his cell phone as a way to honor them and when he made it to the Super Bowl, he made sure to “bring” the kids with him.
Jace chronicled his incredible day by posting photos of himself in the stadium, holding pictures of other DIPG kids, so they could, in a sense, be there at the Super Bowl too.
By the fall of 2020, Jace’s symptoms had returned with a vengeance. His tumor was growing and it was taking a toll on his entire body. It was becoming increasingly difficult for Jace to walk or even eat, and he was losing his hearing.
The Ward family had been informed of a new clinical trial conducted by neuro-oncologist, Dr. Michelle Monje, and her team at Stanford.
The CAR T-cell trial works by drawing blood from the patient, separating out the T cells from the plasma, then reengineering them to attack cancer cells before infusing them back into the body. The procedure can be dangerous and exhaustive to patients who often suffer from fever, rigors, difficult headaches and chills after the altered cells reenter the body.
Jace knew, deep down, it was probably too late to save his own life. Still, the trial was offering hope for the future of the disease. What if, he thought, by going through the high-risk procedure himself, scientists could learn something that made it easier on the younger kids?
While undergoing the first and second dose of the CAR T-cell trial, Jace saw immediate improvement. His tumor had shrunk, lessening the symptoms of facial numbing and hearing loss. His walk improved and he was more motivated than ever to keep fighting.
Amid treatment, Jace was even able to take part in a video panel discussion on cancer research and policy. Reed Jobs’ son, who was on the panel, was so impressed with Jace that he immediately offered him a part-time job with his company, Emerson Collective, as a member of the health team advocating, investing and granting funds to combat rare cancer. The two grew very close over the next few months. Reed described Jace as “The best in all of us, if only we would be so brave.”
But while Jace’s body responded well to the CAR T-cell trial, it still wasn’t enough to defeat the disease. Unrelated to the trial, Jace experienced a tumor bleed in the early morning of July 1, 2021, and two days later, while in Lisa’s embrace, he took his final breath.
“During his 26-month battle with DIPG, Jace was a pioneer and a true hero,” said Dr. Michelle Monje. “His legacy will be the comfort he provided to others, the inspiration he sparked in everyone who met him, the awareness he brought to this terrible disease and – ultimately – in real progress for children with DIPG that he has helped to advance.”
The Ward family has vowed to continue to fight for a cure for DIPG. To date, Jace has inspired more than $5 million in donations and partnership funding for pediatric brain cancer research. Jace conceptualized a patient navigation continuum from his hospital bed that would navigate patients, provide tumor board direction, and funnel data to the Children’s Brain Tumor Network. The Wards have helped nearly 150 other families navigate their brain cancer journey. “How would I fight DIPG?” Jace once answered, “Make the circle bigger and urgently share ideas for real change.” This September, Jace’s family carried out his wish by hosting the inaugural Tough2gether Against DIPG/DMG breakfast, which was held in Washington, DC, bringing together 47 organizations and 200 participants eager to hear from clinicians, patients and advocates.
“Jace hoped that one day, when a child hears they have DIPG, it won’t mean a death sentence,” said Lisa. “His unique way to bring awareness will never die. He implored us to stay busy, to keep spreading awareness for the next family. We will never stop.”
If you would like to make a donation in honor of Jace, please click here.