Before he dies, Benny Boes wants to sit beneath the stars with his family and watch the northern lights dance across the sky.
He wants to take his sons to Disney World. He wants to travel cross-country with his family in a motor home, going wherever the road takes them.
Mostly, he wants to help his boys find joy in the moment, even while their dad’s health declines, and create memories they will carry into the future.
He hopes, of course, that he will outlive the tumor that has taken root in his brain. But he doesn’t count on it.
“Realistically, Benny probably has a year left with us,” his wife, Elise says. “That’s super sad, but―”
“It’s going to be the best year of our lives,” Benny says.
“The best year of our lives,” Elise agrees. “Absolutely.”
It’s been five months since his diagnosis with glioblastoma multiforme, a cancer considered treatable but not curable.
Under the care of his Spectrum Health oncology team, Benny has undergone the standard treatments of surgery, chemotherapy and radiation as well as experimental treatment. Through his neuro-oncologist, Wendy Sherman, MD, he receives the immunotherapy drug Keytruda, which is under study in a clinical trial.
(This is the time for) those lofty dreams, those really taking-the-step-out-of-your-comfort-zone dreams. Those taking-the-leap kinds of things.
But from the beginning, he resolved to make quality of life more important than cancer treatments. Now, he and Elise are putting some of their dreams into motion.
Dr. Sherman admires that attitude.
“Unfortunately, since this isn’t something that’s curable, you have to make the most of the time you have left while also trying to treat it the best you can,” she says. “I think they are balancing that really well.”
Benny and Elise and their sons, 7-year-old Callan and 4-year-old Stuart, have already ticked several big goals off their wish list.
They have spent lots of time with their extended family.
With donations and garage sale proceeds, they bought a motor home for future trips―a 37-foot, 1995 Fleetwood Arrow that sleeps six. Elise will take the wheel while Benny sleeps and recharges for the next adventure. Wherever that will be.
That free-spirited approach didn’t come easily for Benny.
A 33-year-old man with a young family, he takes responsibility seriously. He worked hard as a computer technology salesman to provide a secure life for his family. They had just moved into a comfortable, spacious new home in Hudsonville when his cancer diagnosis upended their plans in April.
It was hard to suddenly shift gears, to focus more on fun than finances.
But this is the time for “whacky dreams,” Elise tells him. “Those lofty dreams, those really taking-the-step-out-of-your-comfort zone dreams. Those taking-the-leap kinds of things.
“This isn’t normal life anymore.”
With support from a wide network of family and friends, Benny agreed to make the leap.
“I am just trying to let go and be adventurous,” he says.
Medically, Benny has been on a roller coaster lately.
An MRI scan showed changes in his brain. But what that means is uncertain. Dr. Sherman says the cause could be swelling from the radiation treatments or tumor growth.
“With the next MRI, we may be able to distinguish between the two,” she says.
He developed blood clots in his lungs and spent five days in the hospital.
The real enemy is false hope. They don’t want that at all.
And at one point, he suddenly lost the ability to walk. During the trip to Atlanta, he collapsed as he entered a restaurant with his family.
He couldn’t put one foot in front of the other after that―for several weeks. He went everywhere by wheelchair.
His ability to walk returned as suddenly as it had vanished.
“I just said one day, ‘I’m just going to do it,’” he says. “I wanted to do it too badly. I wanted my independence back.”
He rose from the couch and took his first shaky steps as his wife rushed to help. He now gets home visits from physical therapists through Spectrum Health Visiting Nurse Association to work on balance and coordination.
On a recent afternoon, the Boes family headed to Holland State Park to spend an afternoon on the shore of Lake Michigan. Accompanying them were Benny’s brother, Matt, his wife, Katrin, and their 5-year-old son, Travis, who traveled from their home in Germany for a visit.
The kids played in the sand and Benny rested on a blanket as waves rolled in and wispy clouds drifted above.
Benny’s older brother, Matt, an informational technology director at a research institute, admires Benny’s direct approach to his prognosis.
“The real enemy is false hope,” Matt says. “They don’t want that at all. And that has really helped us with the process, as well. When you start talking frankly about death, it’s a shock. But you move on.”
It was tough to be far away as his brother battled cancer. Before he came to West Michigan, Matt did his best to prepare for the trip.
“I went through my stages of grief in advance,” he says. “When I got here, I was pretty much ready.”
Once here, he was able to focus on Benny. On sharing meals and long conversations and a day at the beach.
“So far, we have just had a really good time,” Matt says. “I couldn’t dream that it could be this good. I was telling people this was going to be a really difficult trip. But it hasn’t been. They’ve been brilliant.”
Enjoying each day―whether it’s at the beach, on the road, or at home―has become the all-consuming goal for Benny and Elise.
“When mortality stares you in the face, you can cower and you can hide and you can become depressed,” Elise says. “Or you can say, ‘We are going to make this the best year of our lives.’ We’ve chosen the latter.”