John and Ali Shadock had only been married for a few years (a romance that began in an Ikea furniture store) when he suddenly began suffering from severe headaches.
He was 35 and healthy, and the couple enjoyed adventures: hiking, traveling and road trips with their dogs.
A health problem, let alone a potentially fatal crisis, therefore seemed unlikely.
However, the headaches, which started unexpectedly in the spring of 2019 and would not go away, were worrying.
“I thought they were migraines,” John Shadock, now 41, tells TODAY.com.
“It was excruciating and extremely painful,” Ali Shadock, 48, recalled of her husband’s experience.
“In the middle of the night, he would ask me, ‘Can you bring me an ice pack?’ and I would put one on his head. (…) We said to ourselves that this was not normal. We had to go to the doctor.”
Their primary care physician referred Shadock for a brain scan in April 2019. At the imaging center in Kansas City, Missouri, where the couple lived at the time, they saw other people leave right after their scans but were asked to stay.
“Mr. and Mrs. Shadock, the doctor needs to speak to you in the back,” Ali Shadock recalled being told by staff.
“He was a young doctor, and he looked like he was about to cry. He said, ‘There’s something in your head that looks like a big tumor. You need to get out of here and go to the emergency room right away.’”
Five days later, John Shadock was on the operating table for his first brain surgery. A biopsy of the tumor confirmed it was glioblastoma, “one of the most complex, deadly and treatment-resistant cancers,” warns the National Brain Tumor Society. It’s so aggressive it’s been nicknamed “the Terminator.”
The average survival time is eight months, but John Shadock is doing well more than five years after his diagnosis.
“His survival is pretty extraordinary,” Dr. Peter Forsyth, chairman of the neuro-oncology program at Moffitt Cancer Center in Tampa, Florida, where Shadock is being treated, told TODAY.com.
“There is something special about him, in his brain or in his tumor. (…) John shows what is possible. It is very, very important, edifying.”
“Instantly, your life changes”
John and Ali Shadock met and fell in love while both working at an Ikea in Long Island, New York.
They got married on July 11, 2014, partly because they chose the date to be easy to remember: July 11. After their wedding, they stopped at a 7-Eleven to take a photo, and it became an annual anniversary tradition.
“We were living our lives, having a lot of fun,” she said. “And then, instantly, our lives changed.”
After John Shadock’s first brain surgery in April 2019, the couple was told he had six months to a year to live.
“It was terrible,” John Shadock recalled. “It was heartbreaking.”
What causes glioblastoma?
Glioblastoma can strike anyone at any age, although the disease is more common in older people, Forsyth says.
Doctors don’t know what triggers this phenomenon: there is no clear environmental or genetic cause, he notes.
July 17, 2024 marks Glioblastoma Awareness Day. Nearly 15,000 Americans will be diagnosed with this aggressive cancer this year. There is no cure. Persistent headaches are among the most common symptoms of glioblastoma.
Standard treatment begins with surgery to remove as much of the tumor as possible, which is extremely difficult because the cancer is growing tentacles into the brain.
John Shadock was awake during his second brain surgery in July 2019, so he could answer questions during the procedure. This allowed doctors to map critical areas of his brain that control speech and movement, and remove more of the tumor without causing damage.
Radiation therapy and chemotherapy are the next options, but they only extend life by a few months for most patients, according to the National Brain Tumor Society.
Clinical trials to test promising new therapies for glioblastoma may be essential.
Long-term survivor of glioblastoma
John Shadock was able to participate in a clinical trial at the Dana-Farber Cancer Institute in Boston and then at Moffitt Cancer Center. The couple moved to Tampa, Florida, so their patient could be treated there.
The trials involved two different immunotherapy approaches, including one where a slightly modified polio virus was infused into his brain tumor to act as an alarm signal for his immune system.
Glioblastoma cells lie silent and unnoticed, evading the body’s defenses. But when the polio virus targets them, it causes inflammation that “starts a little fire that attracts all the immune cells,” Forsyth says. “The virus is a way of getting the body’s attention to this problem.”
John Shadock has held up well in clinical trials and his immune system fights the cancer by attacking the cells that grow back, the doctor notes. He thinks there may be something special about Shadock’s body that helps him live. Maybe it’s like a soil that is hostile to the seed (the tumor) and doesn’t allow it to grow.
John Shadock was also fit and active at the time of his diagnosis, which helps, and he has good family support, which is “extremely important,” Forsyth adds.
John Shadock attributes one thing to his success: “Ali’s positive attitude, without a doubt,” he says of his wife. “She’s incredible.”
“It’s not a death sentence”
Ali Shadock remembers visiting the impressive glass Thorncrown Chapel in Arkansas after her husband was diagnosed and thinking, “Give me something we can manage and work with.”
“We’re going to figure it out,” she said of her mindset. “What’s next? What can we do? What are our options? There’s always options. There’s always some kind of hope. There’s always a different way to think or go about it.”
She has never missed a single doctor’s appointment and makes a point of celebrating every bit of progress. She says being proactive and trusting her instincts has been key in advocating for her husband.
Glioblastoma “hit the wrong couple,” the Shadocks write on their Instagram page, which is named after their motto, “Strong All Along.”
He says he feels physically fine, but suffers from short-term memory loss. He has retired for medical reasons and no longer drives.
Ali Shadock has good health insurance through her job, but it doesn’t cover everything. She has to pay out of pocket for a caregiver when she leaves the house, “an astronomically expensive necessity,” for fear that her husband won’t take his medication on time, will try to cook and leave the oven on, or will go for a walk and not know how to get home.
The couple is struggling with medical debt, but are grateful that life goes on.
“It’s not a death sentence,” says Ali Shadock.