In May 2019, Jace Ward noticed a change in his peripheral vision — a symptom which ultimately led to a terminal diagnosis with Diffuse Intrinsic Pontine Glioma (DIPG). Determined to make an impact with the time he had remaining, Jace began fighting to live as long as he could to keep that promise.
Over a year following his initial diagnosis, Jace enrolled as the second patient in a CAR T-cell clinical trial for DIPG at Stanford University’s Lucile Packard Children’s Hospital. While Jace responded well to the treatment, he suffered an unrelated brain bleed and passed away in July 2021.
In September 2021, Jace’s parents Lisa and Roger shared their son’s story as part of the Emily Whitehead Foundation’s virtual Believe Ball. Today, the Ward family continues to advocate on behalf of their son’s determination to make a difference for kids with DIPG.
Jace Ward was, as described by his father Roger, “a tremendous athlete as a child — who grew to be a great young man who put a lot of people ahead of him in his journey”.
Jace was your very typical college student, enjoying life and friends. He was 20 years old and had just finished his sophomore year at the University of Kansas when, in May of 2019, he noticed a little change in his peripheral vision and went to an eye doctor. That visit then led to a CT scan, followed by an MRI, and then Jace and his mother Lisa found themselves inside a neurosurgeon’s office where their worst fears were confirmed.
Jace had an inoperable, aggressive, terminal brain stem cancer known as Diffuse Intrinsic Pontine Glioma (DIPG). Ironically, the date was May 17 — DIPG Awareness Day.
In that moment Jace asked one question: How long do I have to live?
He wanted to know, not because he was afraid to die, but because he was afraid that he would not have enough time to make an impact before he died.
Immediately, Jace and Lisa set out to learn everything they could about DIPG. The diagnosis was grim — on average, the survival rate for DIPG is less than 1%, and only 10% of children diagnosed with DIPG will live to two years.
The doctor’s answer was that Jace had only about 9 months left to live.
DIPG is a tumor that, unlike most brain tumors, cannot be surgically removed. It originates in a section of the brainstem called the pons. This area controls most of the body’s essential functions, including hearing, eye movement, taste, the ability to chew and swallow, facial expression, breathing, heart rate, and balance.
In July of 2019, Jace was admitted into a program at St. Louis Children’s Hospital to receive an experimental drug called ONC201. In the time that had passed since his diagnosis, Jace’s symptoms had continued to worsen. The turnaround in his symptoms after receiving ONC201 was remarkable.
At that time, Jace embraced the opportunity to make good on his promise to have an impact on the world. He met with other DIPG patients and attended speaking engagements, including trips to the NIH and Capitol Hill in Washington, DC to advocate on behalf of kids fighting DIPG.
Jace’s motto became, “I can’t die, I’m too busy.”
By the fall of 2020, Jace had surpassed his doctor’s estimation of the amount of time he had left. He was over a year into his diagnosis — however, his symptoms would soon return. This time, it was much more aggressive. His ability to walk, hear, and use his facial muscles diminished rapidly.
It was at this time that the Ward family learned about a CAR T-cell clinical trial for DIPG that had just become available at Stanford University, led by pediatric neuro-oncologist Dr. Michelle Monje. Determined to keep fighting, Jace agreed to enroll as the second patient at Stanford to try it.
Understanding that this was a high-risk experimental treatment, Lisa and Roger asked the doctors, “What would you do if he were your son?”
In response, they were told that it would be a tough trial, but that it could restore quality of life and reduce Jace’s symptoms (while most of the combination drugs for DIPG patients could only stabilize the tumor and hold them at bay for a while).
So, Jace began four days of depleting chemotherapy and then received his infusion of CAR T-cells. By late October, his symptoms had started to reverse. He could walk better, his face didn’t droop as much, he could hear fine, his eyesight was a bit better, and his smile was straight again.
By December, his symptoms started to return. He received his second round of CAR T-cell therapy in early January, and this time the impact was tremendous. Jace couldn’t walk into the hospital when he arrived for his infusion on January 9, but now, three weeks later, he was walking out on his own.
In March, he received his third CAR T-cell infusion, followed by a fourth and fifth in May and June. In January the trial revealed that Jace’s tumor had reduced in size by about 35 percent, as well as by almost 50 percent in the lower pons area, which affects breathing and heart rate. These were numbers that had never been heard of other than in initial radiation treatment for DIPG.
However, with Jace we won’t ever know how well his tumor could have continued to respond to the CAR T-cell therapy. Jace suffered a brain bleed on July 1, 2021 — a very common occurrence in older DIPG patients — and passed away on July 3.
There is no data to show that it was related to the clinical trial. But, what the team at Stanford does know is that Jace’s brain tissue showed far less DIPG cells in his tissue than in a typical DIPG tumor.
While sharing Jace’s story as part of the Emily Whitehead Foundation’s virtual Believe Ball in September of 2021, Lisa Ward shared the sentiment that, “I really believe the experience that we had and the time that we got to spend together was priceless. This is something that they’re getting down to a science and they’re learning from every single patient, but I wouldn’t be afraid to try it and I think it’s important for those of us that walk this journey to say that.”
Today, Lisa and Roger continue to share Jace’s story and advocate for increased research funding and resources for DIPG patients — including assistance to keep Dr. Monje’s CAR T-cell clinical trial at Stanford going. Their initiative is called #Tough2Gether Against DIPG/DMG.
In honor of Jace’s memory, and in recognition of the Ward Family’s bravery, the Emily Whitehead Foundation has contributed a donation to support the expansion of the DIPG CAR T-cell clinical trial at Stanford University’s Lucile Packard Children’s Hospital. We continue to support this program and the Ward’s #Tough2Gether initiative.
Jace Ward is a pioneer, and his contribution toward the advancement of CAR T-cell therapy for DIPG will forever be impactful.
Learn more about the DIPG CAR T-cell clinical trial at Stanford.
We receive messages from families around the world with experiences similar to the Ward family. We do whatever we can to be a resource for these families to help them get enrolled in a clinical trial or find an eligible CAR T-cell therapy treatment center.
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