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Johnson County man living with a terminal cancer diagnosis spends time advocating for patients and research

Adam Hayden and his wife Whitney with their three
Posted at 5:00 AM, Mar 09, 2023
and last updated 2023-05-17 16:37:05-04

JOHNSON COUNTY — After a devastating diagnosis in 2016, a Johnson County father vowed to make memories count with his wife and three young boys.

Since that time, Adam Hayden has proved to be an outlier to the statistics for people with this type of cancerous brain tumor and he's making the most of his time here.

In 2016, Hayden searched for answers to his frequent dizzy spells. The 34-year-old husband and father to three says he was healthy on paper.

Doctors originally thought it was a case of Vertigo, or maybe stress from working full-time while also being a grad school student and parent, but when the dizzy spells impacted his ability to safely drive, Hayden pushed physicians to dig deeper.

It was at that time when he received an MRI, which revealed a seven centimeter primary brain tumor, cancerous, with near universal chance for recurrence after treatment.

"After a long time trying to figure out a diagnosis and then you get a result like that, then it's like go, go, go," Hayden said.

It was on a Friday when he got the results.

"The nurse had held my hand and my wife's hand in each of her hands as we heard the diagnosis," Hayden said. "Like this must be serious."

The following Monday Hayden met with a neurosurgeon and that Thursday he was having brain surgery to remove the tumor, which left his with paralysis on his left side. While the surgery itself was successful, the prognosis for his condition was very vague from his doctors.

Based on the type of cancer, and other factors, Hayden and his wife began researching how much time he would have left on this Earth.

"Most of the statistics were saying it's about a year and a half of overall survival," Hayden said.

They came across a story of someone who survived five years and decided to make that their big goal.

"I mean our youngest was only 8-months-old when I was diagnosed. So as we learned about these grim statistics, I think our first thought was, will our youngest even remember dad?," Hayden said.

WRTV met up with Adam in Spring 2017, almost a year after that initial diagnosis. Hayden was in the backyard playing with his three boys. He and his wife Whitney sat down with us to talk about how they are working to make memories with the boys with the time they have left.

He said then, "So just day to day living is just to try to approach everything with sort of that outlook about what is the great memory that is going to emerge from this experience."

READ MORE | Father inspires others through cancer diagnosis

Now in 2023, Hayden is still living each day to the fullest and finding a bigger purpose for his extra time here. This summer will mark seven years since his brain cancer diagnosis, and Hayden reflects on the goals he has accomplished since that time.

"You can have big goals and then break them down into day to day things, so that is important," Hayden said.

He says his goals have evolved over time.

"I even said to friends like, I am not going to be the cancer mascot," Hayden said. "I remember saying that to some people."

But after spending time in a brain trauma unit, with many other patients with traumatic brain injuries who could not speak for themselves, Hayden felt a calling to advocate for those who cannot do the same for themselves.

"I need to sort of rise to the occasion here and tell the story on behalf of those who can't tell the story in the same way that I am able to," says Hayden.

That call to advocacy brings Hayden to Washington D.C. multiple times a year to advocate on behalf of patients with brain tumors and to push for funding for research.

"I think the science side and the legislative side has been interesting," Hayden said. He also speaks at conferences and in research settings across the country.

He also, with a friend, started a virtual support group for people with this condition. Over the years, that group grew from 7-8 people a session, to nearly ten times that size on a giant zoom room.

"All of us are going through something," Hayden said. "I think brain tumors, particularly, it is an invisible disease because it is inside of our brains."

He says his message to other people is to remember people may be battling something you cannot see on the outside.

"It's like compassion and empathy and connection to understand those of us with invisible disabilities, still need some support," Hayden said.

His best advice for others going through a terminal diagnosis, "Find things that give some meaning and purpose day-to-day."

And Adam also finds purpose in being a loving father, husband and raising money for research. This April you can support Hayden and his family by raising money to support the National Brain Tumor Society.

Hayden is hosting their annual Hayden Tumor Takedown Tailgate from 2 - 5 p.m. on April 30 at Folktale in Greenwood, which is a newer event venue and historic site run in connection with the local restaurant Revery and Dashboard Food Truck.

There will be food, live music, and more. It is a family-friendly event.

In year's past, Hayden says they have been able to raise nearly $20,000 at this event to support research for brain tumors.