Outside, a brilliant sun shines on a day bursting with golds and reds of autumn, the last hurrah of color before winter sets in.
Inside, in a darkened bedroom, Benny Boes lies dying of a brain tumor. And like the season, he rallies for his last hurrahs.
When his sons come in the room, he summons the strength to show his love. He nods his head to 8-year-old Callan. Gives 4-year-old Stuart a thumbs-up.
His wife, Elise, bends over him for a kiss. With his right arm trembling, he reaches up, pulls her in close.
Above the bed hangs a sign: “Love never fails.”
Indeed, love triumphs here.
There’s a real beauty in leaving the world and in caring for someone and bringing them through their journey.
This is Benny’s victory over cancer―“Absolutely,” Elise says. “We are not letting cancer define us.”
When his death comes a day later, Benny lies surrounded by family and close friends.
“He was strong, brave and undeniably awesome through his very last breath,” Elise says in a Facebook post sharing the news on Nov. 1.
Finding peace and beauty
In his last days, as family and friends gathered, keeping vigil in the Boes home in Hudsonville, Michigan, there was life and laughter and sharing of memories.
And grace and dignity for Benny, a 34-year-old man who vowed to defeat cancer by continuing to live a full life in the face of a grim diagnosis.
“I think we are learning death doesn’t have to be scary,” says Elise, his 32-year-old wife. “It doesn’t have to be traumatic.”
In April, just six months ago, Benny learned he had a mass in his brain. The diagnosis: glioblastoma multiforme, a brain tumor considered treatable but incurable.
Benny underwent surgery at Spectrum Health Butterworth Hospital, radiation and chemotherapy at the Spectrum Health Cancer Center. And through his oncologist, Wendy Sherman, MD, he received an experimental immunotherapy drug, Keytruda.
Even as they fought the cancer, Benny and Elise also tried to prepare for his death. They vowed to make the most of whatever time they had.
“It’s going to be the best year of our lives,” Benny said.
That meant special times with their sons, their families and their wide network of friends. They bought a 1995 motor home, hoping to embark on a cross-country family trek.
They arranged a two-week vacation in October to Walt Disney World to celebrate Callan’s 8th birthday. But Benny’s health declined as the date of the trip approached. He lost the ability to walk. His short-term memory deteriorated. An MRI showed the tumor had progressed deep into his brain stem.
Too frail to travel, Benny insisted Elise take the boys to Disney World with her mother. He didn’t want cancer to take that trip from them.
“They need your time and attention,” he told Elise.
‘It hasn’t been that scary’
The day before Benny’s death, Elise looks through family photos as friends visit with Benny. Her sons play computer games nearby.
She holds up the Polaroid she snapped right after Benny proposed to her 12 years ago―they are all grins as Elise holds up her hand to show off the ring.
Losing Benny was always one of her worst fears, she says. But she has found the strength to cope with this loss by focusing on what Benny needs―the dignity to live out his wishes until the end.
And she admires how Benny, even in a weakened state, musters the energy to show his love to her, the boys and other loved ones.
“Benny’s always been very perceptive as to who needs what,” she says. “He is still caring for people, even when he’s in this other place.”
Like Benny, she tries to live moment by moment, making each one the best she can.
“There’s a real beauty in leaving the world and in caring for someone and bringing them through their journey,” she says. “It hasn’t been that scary. It’s been really peaceful and beautiful.”