My family took its first and only Disney trip in the summer of 1990.
We rode some rollercoasters. Went to one of the waterparks. Decently fun trip from what I can remember as a 4th grader.
The strange part was that my older brother Jon was lethargic the whole trip. I still remember a picture of him taking a nap on a bench in the middle of the day. Something was off.
I was nine, so I didn’t think anything of it. My mother, a registered nurse, knew something was wrong so when we got home, they took Jon to the doctor.
He was diagnosed with a rare form of leukemia just before heading into the 7th grade.
It was a gut punch for our family.
There were no specialists in our area, so my mom and brother were forced to move to Minneapolis to receive treatment. The Ronald McDonald House became a home away from home.
The prognosis wasn’t good.
Jon endured months of chemotherapy and radiation, after which the only solution was a bone marrow transplant. My parents weren’t a match. Luckily, my sister and I were both were.
I was the bone marrow donor. There was no guarantee it would work, but miraculously, it did. Jon’s cancer went into remission.
It was a terrible year for our family but Jon was a trooper. He never once complained. Even though he lived in the hospital on and off for months at a time and lost all of his hair he never felt sorry for himself.
He was so strong.
Although it was a difficult period for Jon and our family to endure, we moved on and tried to put it in the rearview mirror. We felt like we dodged a bullet.
Jon wasn’t so lucky.
In his 20s, he contracted pancreatitis. There was a lengthy surgery that seemed to jumble up his insides for years to come. Something never felt right after that.
Unfortunately, life can be cruel.
Last year, he was diagnosed with stage 4 pancreatic cancer. Last week he passed away just shy of his 46th birthday.
Jon was a tough son of a bitch and went out swinging.
The original plan was to manage the pancreatic cancer with chemo until Jon died but he didn’t want to just wither away. He called specialists all over the country, finally finding a doctor who would give him an experimental drug that allowed him to stop receiving chemo.
And it actually worked for a while. The cancer spread slowed. Eventually it would stop working but it gave us an extra six months or so.
He looked normal again — started riding his bike, traveling and living life. You wouldn’t have been able to tell by looking at him that he was sick.
A surgeon in New York said they would operate, which wasn’t on the table at the outset. It was a very low chance of success but he didn’t want to sit around waiting to die. Jon was going out fighting.
All of the treatments and illnesses finally caught up with him and he died from complications in surgery. No regrets. It’s what he wanted.
We all feel like his soul was too big and powerful for his body.
I’m feeling all of the emotions one would expect from a tragedy like this — numb, depressed, some shock mixed with a little anger and bitterness. I’m mostly sad for his wife and three kids who didn’t deserve this.
Grief is strange. Although you know millions and millions of other people have felt it, it still feels like the most personal of all emotions. I guess it is in some ways depending on the person and how they were lost.
At times, I’ve felt like there’s a black cloud hanging over my head. Other times, it’s as if there is a dull knife stuck in the back of my head. Sometimes it crashes into you all at once like a wave.
But it also forces you to reminisce about the good times. These past few months, it’s almost felt like my life has slowly flashed before my eyes through the lens of all the memories of my brother.
I also keep thinking about the kind of person he was. Jon was a one-of-one.
After his bone marrow transplant, Jon was approached by the Make a Wish Foundation — anything he wanted, within reason.
He could have asked to meet his favorite celebrity or athlete. He could have asked for a room full of video games. He could have asked for a four-wheeler or a jetski or some other fun toy like that.
Instead, Jon requested a two-week all-expenses-paid vacation to Hawaii for our entire family. We got to swim with dolphins, fly in a helicopter, see some volcanoes, play on the beach, and more. They even sent a limo to our house to drive us to the airport.
I didn’t realize it at the time, but it was like Jon instinctively knew our family needed that after what we all went through. I still can’t believe a 12-year-old had the foresight to be so selfless, especially when no one would have blamed him for being as selfish as he wanted.
Jon was wise beyond his years and valued experiences with loved ones more than material possessions.
My brother was the king of peer pressure in the best way possible. At any kind of party or gathering Jon wasn’t happy if everyone else wasn’t having fun. He went out of his way to make sure everyone joined in on the party.
Experiences shape us all in so many ways but I didn’t realize how much Jon’s early cancer experience shaped so much of his life.
I’m not good at having overly emotional conversations. No one in my family is. We’re Midwesterners. We bottle things up.
So when he got diagnosed this time around, Jon and I immediately jumped into his finances. That’s my thing and he speaks the same language. It was the number one priority. Money and finances take a back seat at a time like this. That stuff really doesn’t matter in the grand scheme of things. But it also does matter.
Jon is leaving behind a wife and three children. He needed to ensure they would be taken care of. Jon has always been a saver and planner like me but I was surprised by the margin of safety he created.
As we worked through his financial situation it became abundantly clear he was more than prepared for something like this than I ever could have imagined. There was a large life insurance policy. He was holding far too much cash for a person his age.
Jon why do you have so much cash?
Ben, I knew something like this was going to happen. I’ve known it since I was 12 years old.
That bout with cancer changed his entire perception of risk. He’s been working and saving since age 19 because there was always a voice in the back of his head telling him something like this could happen again.
Jon was always right — annoyingly right about most topics. Over the years, he always joked that he wasn’t going to live past age 50, but he was halfway serious. I really wish this was one of the few times he was wrong.
Jon was insanely smart and could have done just about anything he wanted in life. I always said that if I ever appeared on Who Wants to be a Millionaire, Jon would be my phone-a-friend. Yet he decided to hold a stable job with the federal government because he knew they had excellent healthcare and retirement benefits. He never wanted anyone else to be on the hook for him if something went wrong.
Although he had a conservative streak, Jon was adamant about spending money and enjoying the present. Just before he got sick, he took his family to Maui. During the pandemic, he had a beautiful pool installed in their backyard like a modern-day Clark Griswold.
I love that about him. He was a walking contradiction.
Conservative in some ways, adventurous in others. He loved hiking, kayaking, biking and being outside.
It’s easy to be angry at times like this.
When we were growing up my mom always said life isn’t fair.
Life certainly wasn’t fair for Jon. It’s unfair his three children have to grow up without their dad. It’s unfair for his wife. It’s unfair my parents had to watch their son go through cancer twice.
I debated even writing about this experience, but I don’t really know what else to do. I’m heartbroken, but we have to keep moving forward. That’s what he wanted.
Jon certainly wasn’t happy about his prognosis. He was fucking pissed. But he was also resolute about celebrating his life instead of mourning his passing. So that’s what I’m going to do.
I’m going to remember all of the good times.
His unforgettable best man speech at my wedding (it was an all-timer I still re-read once a year). Countless one-on-one games on the basketball hoop in our driveway (I never beat him even once). Family card games that would last until three in the morning. Texting each other complaints about play-calling during Michigan football games. Tubing down the Pere Marquette River. Seeing how happy he was watching his kids go tubing behind the boat.
I’m so grateful Jon was my big brother.
I wouldn’t be the man I am today if Jon wasn’t there to offer advice, give me a swift kick in the ass when I needed it and give me a pat on the back when it was deserved.
We’ve spent the past week or so going through everything and getting organized. Jon made that part easy by leaving behind plenty of lists, instructions and guidelines.
He also left behind some life advice for his kids that helps explain the kind of guy he was:
Be happy with what you have, you don’t need as much as you think.
Never leave anyone behind.
Life is way better than a screen, go live it.
Our mantra is to go live like Jon. I’m so lucky to have him as part of my life while he was here.
Rest in peace big brother.
I’ll see you on the other side.
