In 2021, Cameron Bendgen noticed a slow progression of seemingly disconnected symptoms: a cold he couldn’t shake, a newly necessary break in the middle of lawn mowing, increasingly frequent urination, and intense migraines that negatively impacted his vision.
But as a loving partner to his wife, Rachel, and busy father of five-year-old Sebastian, Cameron was able to easily explain these symptoms away as results of stress or overwork.
Within days of seeing his skin turn gray and green, Cameron was sitting in the emergency room, confident he’d developed diabetic ketoacidosis, would start to take insulin and shift his lifestyle, and everything would be okay. Instead, his blood counts showed that he had leukemia, and a bone marrow biopsy soon diagnosed him with Myelodysplastic Syndrome (MDS). This rare disease –where immature blood cells don’t mature to become healthy blood cells – is almost exclusively found in patients over the age of 70.
As Cameron adjusted to his new care routine, Rachel took over the responsibilities of caregiver. Since its beginning, their relationship has been one of teamwork, consistency, and open communication. Even this monumental challenge couldn’t change that.
“She took one for the team,” Cameron said. “My wife and I, we really don’t argue, and we didn’t start then. As soon as we thought of something, we’d tell each other and we’d deal with it then. Today, we still look at the pros and cons together and discuss how we can move forward.”
After extensive hospital stays, hours upon hours of treatment, and a bone marrow transplant, Cameron was officially declared in remission. Still, he continues to struggle with chronic graft versus host and has steroid-induced diabetes, causing him to need a continuous glucose monitor.
“I think the hardest challenge was the transition back to normalcy because it’s still not normal,” he said. “When you’re focused on a life changing diagnosis, there’s such comfort in the prioritization of your health. Then all of a sudden, the medical community says you’re okay to go back to your life. I don’t want to be resentful because I know that life goes on, but that shift really took a mental toll.”
One thing that’s never changed? The transparency that Cameron and Rachel maintain with their young son. Throughout treatment, they consciously kept him in-the-know, like with the timeline for Cameron’s hospital stay after the stem cell transplant, and what exactly a Hickman Line was doing for his dad.
While Sebastian is their firstborn, the couple doesn’t plan on him being their only child.
“Before we could start chemo, we had to talk about future family planning, about sperm cryopreservation because the treatment for MDS has a high chance you’ll become sterile,” Cameron said. “I think that was another big challenge – people on the outside don’t think about these other residual side effects, and it’s not discussed a lot in public, especially for males.”
Both during his battle with MDS and in the years since, Cameron has made a point to openly discuss other topics that often go unsaid. Whether in writing on his public CaringBridge or in conversation with friends, he makes a point to educate others on the unexpected realities his family had to overcome. This includes the fact that well-intentioned people focused on Cameron’s wellbeing and rarely asked about Rachel’s, and that he wishes he’d started therapy much earlier than he did to help cope with his illness.
“I think therapy’s important, whether you have crazy stuff going on or not. There might be things you’re subconsciously suppressing, and it helps to have an unbiased sounding board that you can talk to,” he said. “Like I’m still wrestling with the idea that none of my blood is my blood: 99.98% of my bone marrow is my donor’s.”
Now aged 33, Cameron is adamant about sharing his lived experiences with others. He highly recommends Suleika Jouhad’s book, Between Two Kingdoms, and is quick to accept any opportunity to more widely share his experiences. Both he and Rachel are providing exemplary models for Sebastian by fully embracing every single day.
“We look at life knowing that each day isn’t promised. So we’re gardening, we’re navigating being new beekeepers, raising monarch butterflies,” he said. “Life is not the same. We’ve dealt with mortality at a rate that’s much younger than the average person but, going forward, it’s so wonderful to be alive.”