On their last day of spring break, Benny and Elise Boes sat down in the wee hours of the morning and recorded a video about the news that turned their world upside down.
“We just found out Benny has a brain tumor,” Elise said.
“Oops,” Benny said. “My bad.”
Elise looked at him and laughed. “Way to put a damper on the holiday.”
Bleary-eyed and dazed after a long visit to the emergency room, the young couple ate Captain Crunch as they vowed to defeat cancer.
“We don’t have time for tumors,” Elise said.
In the weeks since that brave beginning, Benny has gone full-throttle into treatments: brain surgery, chemotherapy, radiation and immunotherapy. They have become frequent visitors to Spectrum Health Cancer Center at the Lemmen-Holton Cancer Pavilion.
Life has changed dramatically for Benny and Elise and their two young sons. But they face their challenges the way they did that first night―with a bold mix of courage and honesty, leavened by humor.
At 33, Benny does not expect a long life. His brain cancer―glioblastoma―is considered treatable but not curable. He and Elise plot their course to victory simply by the way they live their lives.
“We can’t change the inevitable,” Elise said.
“We have control over the quality of life that I want to have while I have it,” Benny said. “And the manner in which I live during that time period.”
That means making memories. More memories to add to the treasure trove they have built since the day Benny and Elise met in 2004, at Skelletones, a former music venue and coffee shop in Grand Rapids’ Heartside.
Good news and bad news
Looking back, Elise said the early signs of Benny’s brain tumor emerged about 18 months before his diagnosis. He became emotionally flat and seemed detached from life.
“He didn’t notice it,” she said. “But everyone else did.”
They eventually met with a counselor and explored the possibility of depression.
In March, they moved to a new home in Hudsonville, Michigan. It was a busy time, but Benny seemed especially exhausted.
He works in sales for a computer technology firm, MCPc. She works as an executive assistant for Spectrum Health. They have two sons, 7-year-old Callan and 4-year-old Stuart.
As they juggled jobs and family duties, packed up one home and moved to another, and enrolled the kids in new schools, Benny struggled with fatigue.
Two weeks after moving day, they took their boys to Pensacola, Florida, for spring break. Sunshine and visits with relatives seemed the tonic they needed.
“We hoped I would just relax in Florida, and we’d have a lot of time to spend together,” Benny said.
From the moment he stepped off the plane, however, they noticed problems with his left side. His grin became off-center. His left foot dragged a bit. He fumbled with his left hand.
On April 8, their last night in Florida, Elise’s aunt persuaded them to go to the hospital. She worried that he could have a stroke.
At the emergency department, Benny had a CT scan. The ER doctor came into the room.
“The good news is you don’t have a stroke,” he said. “The bad news is there’s a mass on your brain.”
Elise gasped. It was as if all the air had left her body.
“I’ll never forget that gasp,” Benny said.
Again, they received a mix of good and bad news. Dr. Vitaz was able to remove 95 to 99 percent of the tumor. But tests showed it was grade 4 glioblastoma multiforme, an aggressive, highly advanced form of brain cancer.
On average, patients live 15 to 16 months after diagnosis.
That prognosis seemed incomprehensible. Benny, a trim 6-foot-4, had no prior health issues.
“He is one of the healthiest people you would ever meet,” Elise said. “His vitals are always at athlete level. This is the only thing he has.
“We don’t know why. We’ll never know why.”
Glioblastoma, a rare cancer with no known cause, affects 2 to 3 of every 100,000 people in the U.S., according to the Brain Tumor Foundation.
“It’s more common in older people, but we do see it in all age groups, unfortunately,” said Wendy Sherman, MD, a neuro-oncologist with Spectrum Health Medical Group.
There are moments of breakdown and moments of pure joy with one another.
After surgery, Benny went to the Spectrum Health Inpatient Rehab Center at Blodgett Hospital to relearn how to do basic daily tasks―walk, tie his shoes and feed himself.
When he returned home, he and Elise recorded a video update to post on their blog, #TeamBoes. Benny showed off the zipper-like scar along the right side of his head. They had shed plenty of tears by that moment. But their resolve to fight the cancer stood strong.
“We want to hit this super hard,” Elise said. “Hopefully, this will give us more time and give us some more memories.”
In mid-May, Benny began taking an oral chemotherapy pill every day and received radiation treatments five days a week.
His energy zapped by the treatments, he rallies his strength for time with the boys. They play games and go out for ice cream. He meets Callan at the bus stop.
He makes plans for the four-week break he will get from chemo. He hopes they can go to the Georgia Aquarium in Atlanta to see Stuart’s favorite creature, the whale shark.
Benny sums up his basic plan: “When I’m feeling good, let’s have fun with the family. When I’m not feeling good, then let’s just relax as a family.”
“This is one of the hardest points of the journey,” Dr. Sherman said. “If they can pull through this time, they can develop a new routine, what we call the new normal.”
‘He didn’t let it break him’
Benny and Elise continue to chronicle their journey in videos and posts on their blog. The support they have received from friends and family―in prayers, donations, meals and hugs―overwhelms them.
“I’m not really one for asking for help,” Benny said. “It’s been a learning experience to learn how to just accept it. I didn’t know I knew so many people.”
He and Elise work to remain positive, for their kids and for each other. And to share their support with loved ones facing their own struggles.
“There are moments of breakdown and moments of pure joy with one another,” Elise said in a video. “We choose to live an awesome life and make awesome memories, and I hope you do, too.”
One morning a few weeks into chemo, Benny woke up to see clumps of hair on his pillow. He decided it was time to shave his head. He went to Rogue Barbershop on Grand Rapids’ West Side.
He bantered with longtime friend Jazz Johnson as she put a striped cape around him and buzzed clippers across his head. As hair accumulated on the floor, Elise recalled the day they met, when he played drums in a rock band and had hair that fell to his shoulders.
“Oh my gosh, I didn’t think I’d ever see you bald,” she said.
Johnson shaved the last stroke, and then turned the chair toward the mirror.
“The big reveal,” Benny said.
He ran a hand over his smooth scalp and teased Johnson: “I did not ask for this. I was very clear. You used your creative juices, and I am not happy with it.”
Elise rubbed his head and kissed him. “I love you,” she said.
Benny is the eternal optimist, Elise said. And that is coming through even as he battles cancer.
“He wants his legacy to be someone who didn’t let the prognosis and this diagnosis and this horrible disease change him. He didn’t let it break him. He used it to love other people.”