Photo on Unsplash
By Jen DeGregorio
One year ago, the Ward family received the kind of news that hopefully most of us will 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, twenty-year-old Jace Ward had been involved in a horrible roll-over car accident caused by black ice in his hometown of Wamego, Kansas. When the Kansas University freshman walked away unharmed, the family felt truly blessed. But over the next ten weeks, he began to notice a change in his vision. The family expected that what Jace was experiencing would be understood through a standard vision test. That was not the case. His journey quickly led to a CT, then an MRI, and then hearing the words “terminal cancer.”
Jace was diagnosed on May 17th 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 National Awareness Day.
What Is DIPG?
No one knows what causes pediatric brain cancer, but we do know that DIPG is the deadliest kind. It’s an inoperable and 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 part of the brainstem called the pons. The pons 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 five and seven years. It’s the worst form of pediatric brain cancer, and the one responsible for almost half of all pediatric cancer deaths with a staggering 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 families in the room. After running some tests, Jace suddenly noticed a change in the doctor’s disposition, and the mood in the room shifted. “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’s terminal. It’s the worst type of brain cancer to have, and unfortunately we have not found ways to treat it.”
“This is too much for Jace,” Lisa remembered thinking to herself. She began to shake and cry. “He’s only 20. I have to be strong, I told myself. Just breathe, stop shaking. He needs my 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, Jace calmly responded without a single tear. “So what you’re telling me is that you, the best neurosurgeon in Kansas City, can’t help me. This is aggressive and it will kill me. I guess what I’ll need you to tell me is how long do I have to live?”
Lisa recalled that the doctor locked 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 nine months.” That would have been one day before Jace’s 21st birthday.
When I asked Jace how he processed such devastating news, he reflected on the fact that how he felt and how he reacted were two very different things. “Listening to the doctor, 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 being an ornery college sophomore who had big dreams of graduating law school, starting a family, and growing old to being the cancer kid.
“What the hell am I going to do in these next nine months that would make a difference in others’ lives?” 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 that something was very wrong. Jace forced a smile and joked, “What are you guys looking at?” They stared at him in silence, and Jace quickly blurted out, “I have brain cancer.” then he went to the car to have a moment alone.
Over the next several days, Lisa googled DIPG for the first time. She was utterly deflated to read the desperation that other families felt. Many had been so frustrated that there hadn’t been enough research done to find a cure. The Ward family was determined to learn all they could, stay strong in their faith, and help Jace find the best course of treatment.
Like so many parents who’ve just been told their child has cancer, Lisa found guidance after posting on Facebook. Many people who’d been affected in some way by the DIPG monster began reaching out to Lisa. Amanda Monhollon, who lost her daughter to DIPG, offered helpful advice. She 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 things she would have done differently regarding her daughter’s treatment, Amanda responded with a few things that Lisa believes changed the course of Jace’s journey.
She told Lisa that she would’ve fought to not use steroids if at all possible, she would not have rushed into radiation, and she would’ve explored CBD or other anti-inflammatory alternatives that would not harm the immune system to control swelling. She also would have looked into a biopsy to determine the viability of 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 that 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 that Jace has the mutation known as H3K27M, which is found in about 70% of DIPG cases.
The Ward family learned about a new drug on trial called ONC201. This drug was starting to become known as the first effective drug for high-grade gliomas. It 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, the family received an email from their doctor at the University of Kansas Medical Center saying they would not allow Jace to use ONC201.
At this time, Jace was very sick, vomiting daily and 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 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. 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 getting 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 work-out, 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 of the DIPG Advocacy Group reached out to the Ward family. In September, the DIPG Advocacy Group was planning to propose H.Res 114 to Congress. The purpose of the resolution was to expose the deadly nature of pediatric brain cancer and the lack of adequate research funding. Janet explained that their goal was to have the resolution pass and make May 17th (which was also the day Jace was diagnosed) DIPG National Awareness Day. She felt that because of Jace’s age, he could speak about DIPG in a way other affected children could not.
“The idea of telling lawmakers about a disease 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 DC 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 I’m being told I have just six more months to live. This tumor will take away my sight, my hearing, my voice, and finally my breathing.”
Jace continues to speak out every chance he gets. This past February 13th, he travelled to Capitol Hill to be part of a panel on the state of DIPG. That was only four days before his original 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 I’m 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’s 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.”