Couple battling rare cancers: Mom loses fight, dad continues alone
KENT COUNTY, Mich. — A West Michigan woman who was battling cancer with her husband has died.
Shelby Offrink, a Lowell native, died Sunday, according to an announcement on the couple’s medical fundraiser page.
“It is with completely broken hearts that we need to let you all know that Shelby passed away yesterday. She was at peace, surrounded by her closest family,” the post reads, in part.
Offrink was diagnosed in February 2014 with Grade IV glioblastoma of the spine, one of the rarest forms of cancer. Just months later, her husband Ben learned his Hodgkin’s lymphoma had relapsed for a third time since 2002.
Ben and Shelby, who met in college, were battling cancer while raising their two young daughters.
When they met, it wasn’t the most romantic setting — a study group for calculus-based physics — but Ben managed to turn it into a story worth telling by cheating.
“I set up a study group and ended up telling the other people not to come so it would be just the two of us,” said Ben with a smile.
“He was sneaky,” said Shelby.
“Yeah, I wanted to meet her,” said Ben, “and that was the best way I could figure out.”
Fast-forward eight years to 2014. Ben, then 34, and Shelby, a newly minted 30-year-old, were married and raising little Maeve, 3, and baby Hazel, 3 months, in Caledonia, Michigan, when life suddenly turns upside down.
“I thought it was sciatica,” Shelby said of the back pain and the “odd” feeling that prompted her to go to the hospital. “But I couldn’t get the doctors in the ER to pay attention. So I went back the next day and told them that I was incontinent, and they did an MRI and there it was.”
“It” turned out to be an intramedullary glioblastoma, a highly aggressive form of brain cancer. Shelby’s version was extremely rare because it was lodged in her spine instead of her brain.
“So it’s actually tangled into the spinal cord itself,” Ben explained. “If you’d imagine a meatball inside of bunch of spaghetti, you can’t just easily take it out without damaging a bunch of the spinal cord itself.”
Shelby Journal, March 10, 2014. “People have come from everywhere to help and I am so, so lucky. I don’t know how to express how grateful I am for every little thing. I have been speechless more than once this past week and everyone knows that is rarer than this stupid tumor! ”
Surgery removed 75%. The rest was treated with a combination of oral chemo and radiation. But suddenly a second spot above the first grew worse and the area of radiation had to be broadened. After a week of treatment, Shelby suddenly lost feeling in her legs.
Shelby Journal, April 1, 2014. “My numbness has gotten worse in both legs. They’ve been able to ambulance me over to the treatments. I’m riding in style for sure. The good news is I don’t think it’ll be possible to get much worse! Wish me luck — think shrink and think walk!”
Unfortunately, the numbness became permanent. Before long, Shelby was paralyzed from the belly button down. But that didn’t stop her fighting spirit or her sense of humor.
Shelby Journal, April 7, 2014. “My friend has decided a honey badger is my new mascot. The honey badger is considered to be the most fearless animal. I need to be fearless. His mantra: ‘Honey badger don’t care’. I don’t care what anyone says — I will beat this nonsense. Blast the tumah!”
Shelby nicknamed her tumors and decided to “terminate” them. “You pronounce it as ‘tumah tumah-nator,'” Ben said . “Like how Arnold Schwarzenegger would say it if he had a tumor.”
Shelby Journal, June 20, 2014. “My MRI results were better than I expected. The ‘tumahs’ (especially the little one I call the ‘little poop’ at T9) had faded a lot since just a month ago. The surgery spot has also faded significantly (I call that affectionately ‘the donut’). I am karate chopping the snot out of those buggers!”
As Shelby continued to fight and improve, in August 2014, Ben got some terrible news. The Hodgkins lymphoma he had fought and battled into remission when he was 20 had reappeared. And it probably had been hiding in his body for a few years, making it extremely hard to overcome.
“I thought it was never a concern again,” Ben said. “The procedures I went through, having a bone marrow transplant, I thought there wouldn’t be any issues. It’s been over 15 years. It caught everyone completely off guard.”
Ben was slated for a clinical trial with an experimental drug, but his alkaline phosphate levels were too high to meet the requirements. With no other options in the Grand Rapids, Ann Arbor or Detroit areas, he is now on generalized chemotherapy, hoping it will force the cancer into remission so he can undergo a bone marrow transplant. Two donors have been found that are a perfect match, if the cancer will respond.
“As it goes on, they are saying it’s getting harder and harder to treat,” he said. “It’s just like a car picking up speed. Eventually you’re going to have 5 million cells, it’s just going to keep growing and growing.”
Both parents were undergoing the nausea, fatigue and discomfort of chemotherapy while trying to raise two small children.
“Some days it does feel like a battle,” Ben admitted. “The days you are feeling absolutely horrible you don’t even want to get out of bed, but you know you have to because you have to take care of the girls or help Shelby. Some days it’s just way tougher than others.”
Friends and family became critical to the family’s success, and took over updates to the family’s online journal, and ran fundraisers for medical expenses and building supplies to make the house wheelchair-friendly.
“We’d had an amazing support group,” Ben said. “Shelby has friends from high school who will drop everything to help us out at a moment’s notice. And the community, it’s just amazing for people to help that much. ”
“Even outside of our community, people we don’t even know,” added Shelby, wiping a tear from her eye. “We’ve had care packages sent from Ireland, Sweden and Australia. It means a lot.”
This January came the worst news yet. Shelby’s cancer, which had retreated from her spine, suddenly appeared in her brain. Three tumors. Inoperable.
“I’m not giving up,” she said at the time. “Ben and I have a long road ahead of us. We know it’s going to be hard, but we’re going to do it.”
“For me it’s just something that you have to do,” Ben said. “You have to fight it and you have to beat it because there is no option.”
“Never give up, because there’s no reason to. Just keep fighting,” Shelby said several months ago. “Especially when you have someone special to fight for and everyone has someone special to fight for — there’s no one who doesn’t.”