‘You never know’

Daniel Johnson started noticing problems in 2014.

They were small then.

He struggled to keep the pinky and ring fingers on his left hand steady as he typed.

He tried doing strength exercises with a stress ball, but they didn’t help. As time passed, it seemed like the problem went deeper than his fingers.

After he suffered a back injury, the physical therapist he was seeing told him his whole left side was weak. He had electromyography done on his left arm, and was told that slowing of his ulnar nerve was the cause of his dexterity problems.

He was convinced it was more, and finally saw a neurologist, who performed an MRI on his brain.

“He called me that evening and said, ‘I need to see you tomorrow,’” said Johnson, 34.

That’s when he knew for sure the news wasn’t going to be good.

The diagnosis, just after Christmas 2016, was cancer. A biopsy the following month confirmed he had medulloblastoma, with a tumor about the size of a fingertip in his brain, and spots elsewhere on his brain and spinal cord.

“I guess I just kind of let most of that … roll off my shoulders,” Johnson said. “When I got the phone call and he said he wanted to see me the next day, I knew it wasn’t going to be good news. But I already had a feeling … that it was going to be cancer.”

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Johnson is a Jay County native who played tennis and golf for the Patriots in high school, a member of the class of 2003. He went on to graduate from Indiana University in 2008 — “I did, you know, the victory lap,” he said — with a bachelor’s degree in biology.

His first job was in apartment leasing in Bloomington before he moved back to Jay County and spent some time at Bell Aquaculture. Eventually he got recruited for selling life insurance, but didn’t feel comfortable with the fit.

He started asking around locally and found that Bob and Sons Insurance in Portland was looking to expand its staff. He added property and casualty insurance licenses to the life and health licenses he already had and started at Bob and Sons in 2014.

Then the health problems started.

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Medulloblastoma is a form of embryonal tumor that starts in fetal cells in the brain and typically spreads through cerebrospinal fluid. Symptoms include headaches, dizziness, unsteady walking and other issues. While it can occur at any age, it’s most typical in young children. And doctors have no explanation as to why it struck Johnson in his early 30s.

But when it did, his family, friends and co-workers were there for help and support.

“Family is huge. They’ve been awesome the whole time,” he said, noting that his parents Darwin and Carla have been with him at every appointment.

“Everyone (extended family, friends and co-workers) contacted me and has been like, ‘Ya know, if you ever need anything, even if it’s just a ride or something like that, just let me know.’”

Following his biopsy, Johnson began getting radiation treatments at Northwestern Medicine Chicago Proton Center in March 2017. That daily regimen lasted six weeks, with chemotherapy involved as well.

Then came six months of intense chemo.

“That’s just the worst stuff in the world,” said Johnson, describing the strange experience of having staff put on coats and gloves to protect themselves from the substance that was being put directly into his veins.

The chemo resulted in hair loss and weight loss.

“I drank Ensure. That was all I drank, all I ate. That was a couple months,” he said. “I didn’t want anything.”

He still doesn’t enjoy much hot food, and his taste buds have changed to the point where he no longer enjoys items like cookies.

That’s been OK, because he’s also changed his diet to eliminate most meat and sugar. He’s not sure changing his eating habits will help, but figures they are worth trying.

The treatments and tumor have also effected Johnson’s balance and left his feet numb, which makes small tasks like navigating his way through an office difficult.

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The tumor in Johnson’s brain is still there. Because of its location, it is inoperable.

But the spots on his spinal cord are mostly gone.

The chemo that he went through last year is too harsh to continue, so now he’s taking a pill form instead. It’s meant to contain the tumor, but is unlikely to destroy it.

Beyond that, doctors don’t have much to offer him in terms of a prognosis.

He still works full-time at Bob and Sons. Upon returning home after college, Johnson also coached tennis at JCHS, first helping his former coach Barry Weaver with the boys team and then becoming the head coach for the girls team. He’s had to step away from the girls program because of the cancer while continuing to help the boys.

But his balance issues make tennis difficult now. His alternative for physical activity has been going to Jay Community Center to play pickleball, which is easier for him because of the smaller court.

He’s also found himself visiting Loblolly Marsh Nature Preserve in northern Jay County more frequently, hiking around and taking pictures.

And he spends more time with his family, especially his 3-year-old niece Gretchen.

“I think you try to be nicer to people,” said Johnson. “You don’t know what anybody’s going through. Try not to be as judgmental about things.

“I guess just appreciate things, because you never know.”