Growing up as the son of a pastor, Adam Hayden had his ideas of what faith was supposed to mean.
Living for almost a year with a brain cancer for which there is no known cure has changed that meaning.
The diagnosis has also changed just about everything else for Hayden and his family, who have had to adjust to loss of income, changes in housing and much more. Faced with the grimmest of outlooks, Adam and his wife, Whitney, have had to ask some very tough questions about life and death. But the couple, which lives in Greenwood with three sons too young to really be aware of what’s happening around them, has also found a lot of answers.
Adam Hayden didn’t go to the doctor when he had what turned out to be a seizure on the day after Christmas in 2014.
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When another episode of dizziness and diminished motor function came three months later, he did go, and he was told that it was likely either stress-related or positional vertigo.
Months of physical therapy didn’t help, though, and as the seizures became more frequent and more debilitating, Hayden, now 34, went back to the doctor in May 2016. An MRI showed a 71-millimeter growth near the parietal lobe on the right side of his brain.
For comparison’s sake, that’s roughly the size of a regulation baseball.
The presence of such a large object pushing against the portion of the brain responsible for motor and sensory functions explained why Hayden’s difficulties in that area had become more frequent. But what the growth actually was remained a mystery.
On May 26, 2016, less than two weeks after his first MRI, Hayden underwent brain surgery, and that procedure removed roughly 95 percent of the growth. For the next 15 days, the Haydens were left to wonder about what the biopsy would reveal.
“That’s a really long time to wait,” he said. “You almost get the diagnosis twice.”
Finally, on June 10, Hayden received the diagnosis. He had glioblastoma — an aggressive and incurable form of brain cancer most commonly found in older males.
The average length of survival for patients with glioblastoma is about 12 to 15 months after diagnosis, and only 3 to 5 percent of people survive five years.
Hayden’s diagnosis was 11 months ago.
“We’re starting to get to that part of where, statistically, people start to do poorly around this time,” he said. “But here I am, doing all right … so we’re being positive.”
Though most of the mass was removed and he’s undergoing monthly one-week rounds of chemotherapy to try keeping its growth under control, Hayden knows that it’s likely a matter of when, not if, the tumor grows back. He’ll almost certainly die sometime in the next five years, leaving behind Whitney and their three young boys: Isaac, 5; Noah, 3; and Gideon, 18 months.
Finding an outlet
While he was in the hospital recovering from his surgery, Hayden decided to start documenting his attempt to climb back toward relative normalcy.
Though his left side was rendered almost motionless, Hayden had use of his dominant right hand, and so he began to write about his recovery experience — both big feats such as regaining the ability to walk, and small accomplishments such as being able to go to the bathroom without help.
“It’s just an invasion of privacy all the time when you’ve got to hit the call button to have somebody come in and help you go to the bathroom,” Hayden said. “So the first time I went to the bathroom on my own, I just wrote a little note about that on my legal pad, because that was a big thing.”
When he got home, Hayden started to put his notes together and record more of his thoughts. Throughout the months that followed, it grew into a blog — “Glioblastology: Graduate Trained Philosopher Documents His Battle With Glioblastoma.”
At first, Hayden’s intent was to leave a record behind for his sons, so that if he passes away while they’re still young, they can read his thoughts years from now and “see Dad was fighting like hell and working hard.”
“But as I started writing really honestly,” Hayden said, “I had friends who said, ‘You know, people might like to see this.'”
A fellow cancer patient told Hayden that “privacy is a luxury that the terminally ill are not afforded.” That idea, Hayden said, motivated him to share his thoughts publicly, and they’ve received a positive response — so much so that he’s taken on some speaking engagements as well.
His first, a public talk March 5 at his home church of Friedens United Church of Christ on Indy’s south side — where his father is a senior pastor and where he met Whitney — drew more than 250 people.
One of the items on Adam’s bucket list now is to give a TED Talk. TED is an organization which hosts a renowned series of conferences conducted twice a year featuring acclaimed speakers chosen to discuss a wide variety of topics.
He continues to write daily, though, and Hayden dedicates the first 15 to 20 minutes of every morning to another one of his goals — getting an academic paper published in a respected journal.
“That might seem like a weird bucket list item,” Hayden said, but it’s been a goal of his since he was studying philosophy in graduate school. Cancer has dashed many of his dreams — but he’s not letting it take them all.
Before the diagnosis, both Adam and Whitney were working full-time — she in the medical field and he at Briljent, a training and development firm.
After the diagnosis and surgery, Adam was physically unable to go back to work; in addition to the diminished physical capabilities that came with the damage done to his brain, the fluorescent lighting and such that come with extended hours in an office setting would have likely triggered more seizures. Whitney, meanwhile, scaled back to part-time work, spending more time at home because Adam was in no condition to be left alone with three young kids.
Though Adam was placed on disability, the Haydens still were taking a major financial hit with both incomes being significantly lowered. So they downsized, selling their second-story condominium and one of their two cars and moving in with his parents.
That situation, though, wasn’t sustainable. His parents, who had been adjusting to life as empty-nesters, were living by themselves in about 1,800 square feet. Adding a family of five in that space, Adam noted, “puts strains on everybody’s relationships.”
Through the course of about six to eight months, the Haydens had given up their home and a car, their full-time jobs — and their independence. That chain of events, Adam said, left him feeling helpless and emasculated — his sense that a man should be able to provide for his family made him feel as though he was “failing to deliver on the commitments of a husband.”
The power of community
The financial stress that comes with a major illness such as Hayden’s is heavy, to be sure — even with Whitney’s insurance covering the vast majority of the costs, the family has been forced to make some big changes due to the combination of increased expenses and decreased incomes.
But as word has gotten out about his illness and the family’s situation, others have stepped forward and offered support.
At his March 5 speaking engagement, Adam and his family reluctantly began accepting free-will donations from others.
“We’ve learned to accept help,” Adam Hayden said. “When you’re faced with a lot of medical bills and you’re not making the income that you’re used to, and you want the best future for your kids, you quickly get over pride and you learn to accept help and be grateful for it.”
Crabapple Creek, the Greenwood preschool that the Hayden boys attend, sent out an email to parents from every class telling Adam’s story. Among those moved to action by that email were Center Grove freshmen Dylan Godsave and Carson Wilhelm, the co-founders of a local business called Casual Cosmetics.
“From the beginning, I knew I had to do something,” Godsave said.
They reached out to the Haydens and asked if it would be okay for them to organize a fundraiser on the family’s behalf. That event will take place on May 26 at Independence Park in Greenwood.
A new religion
It would be an understatement to say that the Haydens’ faith, which has always been an important part of their lives, was tested by the diagnosis.
Something that’s been difficult, Adam said, is hearing what he calls the “knee-jerk reactions” from people of faith, who usually say one of two things — “God won’t put more on a person than that person can handle,” or “everything is a part of God’s plan.”
“I think those are comforting for people who are not facing illness,” he said. “To hear those messages, I think, well, listen — if this is God’s plan, it’s hard for me to think of a god and then to think, ‘Well, it was God’s plan for me to have cancer,’ or, ‘Is it God’s plan for my kids, at some point, to grow up without a dad?’ It’s hard to reconcile that cosmic view of the world with belief in God.
“So yes, it is a test of faith, and it’s a test of, how do you really understand God’s role in the world and God’s role in my life?”
Rather than abandon his faith because of these questions, Hayden found himself redefining what faith means. He recalled the letters of the apostle Paul, who would often address large gatherings of people — which made Hayden realize that while people within a group might disagree about how to interpret the idea of a higher power, the common thread through the history of organized religion has been people coming and gathering together.
“What I understand is that communities are important,” Adam said, “so my faith rests on community gathering around a common cause and supporting each other.”
Though he would still like to achieve the aforementioned bucket list goals, Hayden’s primary concern is ensuring that his wife and children will be secure after he’s gone — that the family’s housing and his sons’ college educations will be taken care of.
The strength of the community around him has given Adam Hayden faith that everything will turn out all right.
Casual Cosmetics, a Greenwood-based business, is organizing and sponsoring a fundraiser to help Adam Hayden and his family.
The #helpthehaydens event, which will take place from 5 to 8 p.m. May 26 at Independence Park, was put together to raise money for the family as 34-year-old Adam battles glioblastoma, an aggressive and incurable form of brain cancer.
The fundraising event will feature live music courtesy of the Center Grove High School choir, food from Brozinni Pizzeria, Chick-fil-A and Ella’s Frozen Yogurt, as well as shopping and a silent auction.
For more information, visit casualcosmeticsusa.com/helpthehaydens.