One year ago, the Ward family received the kind of news that most of us will hopefully never experience — the kind of news that takes the air out of your lungs and drives you to your knees like an invisible gut punch.
A few months earlier, 20-year-old Jace Ward had been involved in a horrible rollover car accident caused by black ice in his hometown of Wamego, Kansas. When the college freshman walked away unharmed, the family felt truly blessed. But over the next 10 weeks, he began to notice a change in his vision. The family expected a standard vision test to shed light on the trouble Jace was experiencing, but that was not the case. Instead, his journey quickly led to a CT, MRI, and hearing the words ‘terminal cancer.’
Jace was diagnosed on May 17 with Diffuse Intrinsic Pontine Glioma (DIPG). This is the same form of brain cancer that took the life of Chad Carr, and the diagnosis ironically came to the Ward family on DIPG Awareness Day.
What Is DIPG?
No one knows what causes pediatric brain cancer, but we do know that DIPG is one of the deadliest kinds. It is an inoperable, currently incurable cancer located in an area of the brainstem known as the pons. The name Diffuse Intrinsic Pontine Glioma refers to how the tumor grows, where it is located, and what kind of cells give rise to the tumor.
- DIFFUSE means the tumor is not well contained. It grows out into other tissue, mixing with healthy cells. This growth pattern makes it impossible to surgically remove the tumor without damaging healthy brain tissue.
- PONTINE refers to the location of the tumor in the pons, which is responsible for breathing, sleeping, bladder control, balance, and other important functions that are part of survival.
- GLIOMA is a word used for tumors that originate from glial cells. These are the cells that support the neurons that carry messages in the brain.
DIPG primarily affects children, with most diagnoses occurring between the ages of 5 to 7. It is one of the worst forms of cancer, responsible for almost HALF of all pediatric brain cancer deaths — with a staggeringly low survival rate of nearly 0%. Worst of all, until recently there had been no change in the standard of treatment in more than 50 years.
Jace, who was otherwise very healthy and active, was told his life expectancy ended before his 21st birthday.
When Lisa and Jace went to speak to the doctor about Jace’s vision changes, they fully expected that he was suffering from a possible brain bleed or some other “fixable” problem. The office didn’t allow any other family members in the room. After running some tests, Jace suddenly noticed a change in the doctor’s mood in the room. “This was the moment I knew it was going to be the worst news. I just didn’t know how bad ‘the worst’ really was,” said Jace.
It was just mother and son when the doctor told them, “There’s no easy way to say this. Jace has DIPG — an aggressive, inoperable cancerous tumor in your pons. It is terminal. It’s the worst type of brain cancer to have, and unfortunately we have not found ways to treat it.”
As Lisa began to shake and cry, she just remembers thinking, “This is too much for Jace. He’s only 20. You have to be strong. Just breathe… stop shaking. He needs your strength right now.”
She wrote down every word the doctor said in a notebook, thinking she had to learn as much as possible. She was in total shock, and even though she stopped processing the doctor’s words, she continued to write. As the doctor finished, without a single tear, Jace calmly said, “So what you are telling me is that, even though you are the best neurosurgeon in Kansas City, you can’t help me. This is aggressive, and it will kill me. I guess what I’m going to need you to tell me is, how long do I have to live?”
Lisa remembers the doctor locking his kind eyes with hers, silently wondering if he should answer bluntly. Jace continued, “I’m not afraid to die. I know where I’m going after this. I want to know how long I have to make an impact before I die.” The doctor replied, “Hopefully 9 months.” That would have been one day before Jace’s 21st birthday.
When asked how he processed such devastating news, he reflected on the fact that how he felt and how he reacted were two very different things. “I began to feel like someone else,” he said. “Like everything I had done, worked toward, and accomplished was taken away from me. I’d gone from an ornery college sophomore, who had big dreams of graduating law school, starting a family, and growing old to being the cancer kid.”
Jace reflected on the doctor’s estimation that he only had 9 months to live. “What the hell am I going to do in these next 9 months that would make a difference,” he wondered. “And how can I get it done going in and out of the hospital.”
As he joined the rest of his family, he felt an overwhelming need to be strong. They could tell that Lisa was visibly shaken, and knew immediately something was very wrong. Jace forced a smile and joked, “What are you guys looking at?” They stared at him in silence, and Jace remembers quickly blurting out, “I have brain cancer,” then going to the car to take a moment alone.
Over the next several days, Lisa googled DIPG for the first time. She was utterly deflated to read the desperation other families felt that there had not been enough research done to find a cure. The family was determined to learn all they could, stay strong in their faith, and help Jace find the best course of treatment.
As with so many parents who have just been told their child has cancer, the next steps were incredibly overwhelming. Lisa found guidance after posting on Facebook. Many people who had been affected in some way by the DIPG monster began reaching out to her. Amanda Monhollon, who lost her daughter to DIPG, offered helpful advice and reminded Lisa, “You don’t have time to wish this wasn’t happening. You only have time to find the best doctors for the best treatment you want to pursue.”
When Lisa asked Amanda what she would have done differently regarding her daughter’s treatment, Amanda responded with several things that Lisa believes changed the course of Jace’s journey.
She told Lisa she would fight to not use steroids if at all possible, she would not rush into radiation, and she would explore CBD and other alternatives that would control swelling but not harm the immune system. She would also determine whether a biopsy would lead to better clinical trial options.
Over the next week, while Jace’s symptoms were getting progressively worse, Lisa learned everything she possibly could about DIPG and possible treatments and trials. After consulting with multiple doctors, they decided a biopsy would be the best option to learn more about Jace’s tumor and how to best treat it. The biopsy, performed at University of California, San Francisco, showed Jace has the mutation known as H3K27M found in about 70% of DIPG cases.
The Ward family had learned about a new trial drug called ONC201. The investigational drug was starting to become known as the first effective drug for high-grade gliomas that works by blocking dopamine from feeding the deadly cancer’s growth. The problem was there were only two trials available — one for children and one for adults. Jace, being 20 years old, did not qualify for either trial.
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 compassionate use of the drug even though he was in between the ages of the two trials, 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.
At this time, Jace was sick, vomiting daily, having trouble walking, and losing an excessive amount of weight. “In my head, I believed I would die in February. Depression and anxiety were the only two moods I had,” said Jace. “Learning I didn’t qualify for the ONC201 trial felt like my struggle was useless.”
Feeling defeated, there were days when Lisa didn’t want to get out of bed. All she wanted to do was hold her son, who had shown such resilience, and fix everything for him. One morning, she received a call from Dr. Sabine Mueller, one of the leading pediatric neuro-oncologists in the country. “She was the only doctor in months who gave us a path to follow,” said Lisa. “She was compassionate, matter of fact, and calmly laid out what we should consider.”
“It was during that conversation with Sabine, that I watched my hero, my mom, find her hero, Sabine,” said Jace.
In July, after help from many of the connections she had made — including Amanda Haddock of Dragon Master Foundation, Jenny Mosier of Michael Mosier Defeat DIPG Foundation, and Dr. Sabine Mueller — the family received a call that Dr. Karen Gauvin of St. Louis Children’s Hospital would treat Jace and allow the use of ONC201. By the end of the month, Jace’s vision had improved so rapidly that he could drive a car again.
“I suddenly felt like the power was shifting in my battle,” said Jace. “My physical therapy became a workout, chemo and radiation became routine, and my whole mood changed. I started to get stronger and felt inspired to fight.”
By January 2020, after five months on ONC201, the family became almost certain the drug was making a positive impact on Jace’s cancer. His tumor had begun to shrink. Since that time, Jace and Lisa have made it their priority to do everything they can for other families who need help accessing the drug.
Making an Impact
After reading about Jace, Janet Demeter, founder of the DIPG Advocacy Group, reached out to the Ward family. In February 2020, the advocacy group was planning to propose House Resolution 114 in the U.S. House of Representatives and wanted Jace to attend. The purpose of the resolution is to expose the deadly nature of pediatric brain cancer and the lack of adequate research funding. Janet explained that the group’s goal was to have the resolution pass and make May 17 (which was also the day Jace was diagnosed) National DIPG Awareness Day. She felt that because of Jace’s age, he could speak to DIPG in a way other children battling could not.
“The idea of telling lawmakers about a disease that no one really knows about except families who have watched their children suffer spoke immensely to Jace,” said Lisa. “He felt it might be the impact he hoped to make.”
The Ward family spent three days in Washington D.C. with lawmakers. Still exhausted from having just completed a round of radiation treatments, Jace passed on museums and special offers for tours, but continued to get up each day and try to make an impact. He began each 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 just six more months to live. This tumor will take away my sight, hearing, my voice, and finally my breathing.” Lisa could see Jace was making the impact he so wanted.
Jace continues to speak out every chance he gets. On February 13, he again traveled to Capitol Hill to be part of a Congressional Briefing and Summit to discuss the state of DIPG. That was just four days before his stated life expectancy expired and he celebrated his 21st birthday.
February was a special month for Jace indeed, but one of the things he treasures most was meeting Dr. Sabine Mueller in person. “I was able to thank her in person and am only sorry she isn’t able to help every child’s mom the way she did mine,” said Jace.
While Jace continues to do well on ONC201, he is still fighting every day. “There are days Jace seems so normal and looks so good that we forget our time with him might be shortened,” said Lisa. But she still watches his eyes, his walk, his waves of nausea for any hint of the tumor progressing. He’s still maintaining a 4.0 GPA and will be a senior at Kansas State University this fall.
“I can’t die yet,” Jace can often be heard saying. “I’m too busy.”