Former Brookfield resident and 1989 (BHS) grad Dave Wilson and his family are going through an unimaginable ordeal: a stage-three brain tumor that has ravaged his body and mind, brought his family to the precipice and may soon claim his life. Though Dave, his twin brother Bob and their younger brother Chris have not lived in Brookfield for many years, those who grew up with them are rallying to the cause, coming together to help Dave Wilson fight.
[If you would like to help with the fight, see the attached flyers about upcoming fundraising events, check out the website HelpDaveWilsonFight.com and read more below under the subheading Help Dave Wilson Fight.]
“Everyone who knows Dave knows he’s very outgoing,” Bob said of his brother, pointing out that Dave was awarded ‘Most Outgoing’ during his senior year at BHS. “Everyone who knows him a little feels like they really know him.”
“He’s a give-the-shirt-off-his-back kind of guy,” Dave’s wife Jen agreed. “Everybody loves him.”
Jen, who met Dave at Natchaug Hospital in Mansfield where they both worked, said she “valued him first as a coworker, then as a friend and then we decided to start dating.”
In 2006, less than a year after they started dating, Dave began complaining about not feeling well, with a metallic taste in his mouth, tunnel vision and a sharp, distinct pain in his head.
“We had absolutely no idea” what was really going on, Jen said, but they knew it was something serious.
One night, Dave began to get “very upset,” Jen said, saying he wasn’t feeling well and pointing to a painful spot on his head. Later that night, he suffered his first massive seizure.
An MRI at Yale New Haven Hospital showed a glioma woven through his brain tissue, sprawled out and interwoven like a spider web in the area that controls the personality, in the exact spot Dave had pointed to that night.
“We knew when he was going into surgery that he wouldn’t be the same,” Bob’s wife, Dave's sister-in-law, Lauren said. “But they had to take it out — there was no way around it.”
Dave came out of a successful surgery in May 2007 strong and determined and immediately began chemotherapy in an attempt to shrink the remaining cancerous tissue that couldn’t be removed without damaging essential brain functions.
After a year of treatments, the tumor had shrunk significantly but not at the rate that doctors and family members had hoped. They continued to manage and monitor his condition, and in August 2009 Dave and Jen were married.
“The doctors were using words like ‘stable’ and ‘benign,’” Lauren said, however, as the family gathered for a Christmas celebration in 2011, Dave began to have seizures again. He returned to Yale New Haven for tests and in January 2012 was told that the cancerous tissue had begun to grow again.
The side effects of the growth were immediate. Dave lost peripheral vision on the left side of both eyes and, as the tumor was growing on the right side of his brain, the motor skills on the left side of his body began to deteriorate.
“Three months ago, all of the sudden he told me he had no peripheral vision,” Jen said, and it has “been a steady and rapid decline” since.
At that point, Dave voluntarily gave up his job driving school children, just before he was officially categorized as legally blind.
“He was always fun-loving, sometimes obnoxious in a funny way, but always the life of the party, always had something to say,” Jen said. Though, now, “over the past month, he barely talks at all.”
Dave can still speak, is observant and understands what is going on around him, however his cognitive ability has slowed and his sentences and thoughts often drift off midway through.
“He’s still mostly himself, just a little bit more subdued,” Bob said. “He hasn’t lost it, he just talks less now,” though less is really just a matter of degrees.
“He still has the greatest sense of humor,” Jen agreed. And now “it pops up at the oddest times,” though she admits she misses the talking.
In May 2012, the family received a soul-crushing determination from the doctors, Lauren said: We’ve done all we can do. Though the tumor had been labeled benign after the surgery in 2007, it was now stage-three cancer.
By the time of that diagnosis, the tumor had so interwoven itself into Dave’s brain that surgery was no longer an option.
“He’s gone downhill so much — he doesn’t look the same, doesn’t act the same,” Lauren said. “We saw him at Christmas  and he was running around with the kids in the yard… He went downhill before our eyes.”
Dave was still walking under his own power when he arrived at their home in Florida, Lauren said, but by the end of their visit he wasn’t even able to hold his brother’s baby.
“By mid-trip he was using a cane to walk,” she said. “By the end he was in a wheelchair,” which he has been restricted to since.
Dave’s doctors told them it was a matter of months, not years.
But there might be a “light at the end of the tunnel,” as Lauren put it, in the form of Dr. John Boockvar from Cornell Medical in Manhattan, a young, fourth-generation physician that she called the “thoroughbred of doctors,” who they met with in late July
Dr. Boockvar confirmed that the tumor is growing and currently inoperable but gave the family some hope in the form of a three-drug chemo cocktail that might be able to shrink it enough to give the surgeons a chance at removing a significant amount.
“That’s our last wing and a prayer,” Lauren said.
As Dave’s condition deteriorated, Jen began to take more and more time off of work, eventually using all of her vacation and sick days. Bob spent a lot of time at his brother's home in Willimantic, helping with the day-to-day, but without constant support, Jen has all but stopped going to work.
“We’ve always lived paycheck to paycheck,” she said, but by the end of July the paychecks stopped coming.
A number of insurance claims were recently rejected, many due to discrepancies in paperwork, and their home had to be refitted to accommodate handicap access and living entirely on the ground floor.
Though she has worked in the medical field for over 10 years, “When you’re dealing with a loved one who needs help, it’s frustrating to learn that it’s really all about the money,” Jen said.
With the flow of unpaid bills growing, Jen and Dave are precariously close to bankruptcy.
In an effort to help her brother- and sister-in-law, Lauren decided to begin by buying “Lance Armstrong kind of bracelets” for family and friends to show their support.
The bracelets are gray and red — gray, the national color for brain cancer awareness, and red, Dave’s favorite color (when they were babies, their parents would dress Dave in red and Bob in blue to set them apart) — and, at $5 apiece, Lauren sold more than 200 in the first 24 hours. Realizing that this could help ease one of their problems, Lauren decided to take to the Internet.
She got in contact with fellow 1989 BHS graduate Vernon Howard, who works as a director of interactive media in Wilton and freelances building websites in his free time. Howard jumped at the chance to help and built the website HelpDaveWilsonFight.com to take donations and spread the word.
“I’ve known Dave since we were really, really little,” Howard said, reminiscing about riding the bus to school together. “The twins were a fixture in my life when I was younger,” though they grew apart with time after high school.
They had reconnected briefly through Facebook when Howard learned of the brain tumor.
“I was shocked when I learned what he was going through,” he said. “If you needed help, they were always there when we were younger… Now they need help, so I wanted to step up.”
Howard built the website and it raised over $8,000 in the first week, rising to over $11,000 as of August 21 from over 175 donors.
"I'm looking at the names coming on the website and saying, 'I knew that person,'" Howard said, in awe of the response. "It's renewed my faith in people"
“It’s so overwhelming that people are so willing to take the time, that there are still good people out there,” Jen said. “There are times when you are proud and it can feel a little awkward,” she said about accepting charity, “but when it comes to saving my husband’s life, I have no pride.”
She said the support has been “incredible” and has allowed them to catch up on some of their outstanding bills.
“People have been coming out of the woodwork that haven’t seen him in 22-25 years,” Jen said.
“It validates — not that I need it — how I’ve always felt about him,” she said. “It’s incredible, but it doesn’t surprise me in the slightest bit.”
Besides donating through the website, BHS alumni and friends have organized two upcoming fundraisers [see flyers attached above]: a party Wednesday night at Two Steps in Danbury and a garden party/carnival at a friend’s home in Scotland, CT on September 8.
Doing It Differently
Though they cannot go back and rewrite the past, the Wilson family has learned much from the experience and hopes that other families beginning this tragic journey can learn from them.
“I’ve always had that person right there,” Bob said of growing up with a twin. “On the bus, at the lunch table — no one would pick a fight because there were always two of us — I always had another me right next to me.”
“It sounds like a cliché thing, but when you care about somebody, try to stay in touch,” he added. “Pick up the phone and reach out.”
Looking back, Bob said he is “disappointed in myself that I never looked into it,” wishing that he had been more proactive during the early stages. “I feel like if I had done my research on the side I could have pushed him,” however, even though the two brothers are as close as can be, they rarely talked about the most pressing issue in front of them.
“His nature was just to make people happy and he knew this would bring people down,” Bob said, so his brother tried to shoulder the burden himself. “He didn’t want to bother anyone — an awesome trait, but I wish I would have looked into it more, pushed more.”
In the early stages, “we were led to believe that this was a pretty manageable tumor,” Jen said, explaining that the cancer was “a part of our lives, but not right out in our faces.”
As she watched the disease progress, she said she began to wish she “would have asked more questions,” and urged families coming to grips with similar ordeals to “just ask as many questions as possible.”
Despite the challenges that appeared early in their courtship and marriage, Jen said she wouldn’t have done things differently.
“I never felt like I would have,” she said, grateful just to “have the opportunity to have someone like him in my life to love.”