Unbroken: Husband and wife battle rare cancers

Posted at 3:10 PM, Apr 16, 2015
and last updated 2015-04-16 15:15:26-04

CALEDONIA, Michigan (CNN) — Ben and Shelby Offrink met in college. 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.

Shelby Offrink was diagnosed at 30 with rare inoperable brain cancer. Then, her husband, Ben, was diagnosed with Hodgkin’s lymphoma, which had been in remission 15 years.

“He was sneaky,” says Shelby.

“Yeah, I wanted to meet her,” says Ben, “and that was the best way I could figure out.”

Fast-forward eight years to 2014. Ben, now 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 says 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 explains. “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.”

The couple, who have two young daughters, are fighting for their lives, looking for clinical trials and new treatments

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 says. “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 says. “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 says. “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.”

Suddenly, 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 admits. “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, taking over updates to the family’s online journal, and running fundraisers for medical expenses and building supplies to make the house wheelchair-friendly.

“We’d had an amazing support group,” Ben says. “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,” adds 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. What is Shelby’s reaction?

“I’m not giving up,” she says. “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 says. “You have to fight it and you have to beat it because there is no option.”

Maeve, who is 4 years old now, and Hazel, 1, will have a home with Ben’s brother if the worst is to happen, and friends are setting up fundraisers for the girls’ education. But that’s not the focus of Ben and Shelby’s fight. They want to get well.

“Yeah, we have two little ladies we have to take care of,” Shelby says, “and lots of family and friends that care about us.”

“She’s not just doing it for herself, she’s doing it for her whole family, especially her girls and her husband, Ben,” said Jay Tomczak, Shelby’s older brother. “She’s not going to ever give up. What we really need is hope.”

The Offrinks would like help finding clinical trials to address the rare cancers they are fighting, as well as access to cancer centers with more advanced techniques than are available in Michigan.

“We’re going to get all of our information and would like to go to Harvard or Mayo (Clinic) or places where maybe they do have more experience, and act in a shorter time frame,” Shelby says.

“If, right now, we can find two or three trials that maybe Shelby can get into, or a trial drug for me to try instead of the path I’m on right now, it could definitely benefit us,” adds Ben.

“We just can’t wait,” Shelby says. Her prognosis is about six months, she says, and a year for her husband.

“Never give up, because there’s no reason to. Just keep fighting,” Shelby says. She breaks into tears: “Especially when you have someone special to fight for and everyone has someone special to fight for — there’s no one who doesn’t.”