Jaeger Portscheller

It’s hard to articulate and summarize our family’s last five years. Ever since we were fortunate enough to hear back from the Carelines team, our journey — the rough times, the memories — have been on my mind more than ever.

It all started with stomach pains. After two appointments at our small-town clinic, I took the phone call no parent ever wants to hear: “Your son has leukemia — and we have a team ready for you in Bismarck.” Bismarck was a two-hour drive away, and we had to leave right then. The following days were a blur. Being October 2020, this was all in happening in wake of Covid and accordingly, only one of us could go with Jaeger. We quickly, but begrudgingly, decided that I would go with Jaeger first, and my wife and our three kids would follow later.

Well, they had to follow farther than we ever imagined. Once in Bismarck, Jaeger’s counts were so high that doctors warned if they started chemo, his kidneys could fail — and that hospital wasn’t equipped to handle it. Before the sun even came up the next morning, they loaded us up in an ambulance and sent us to the specialists in Fargo.

From there it was nonstop — tests, scans, blood draws, a bone marrow biopsy — the first time I’d ever seen my son come out of anesthesia. It was terrifying then, and honestly, it still is when I think back on it.

From that point forward, everything changed. We had to sell the only home we’d ever actually owned. It wasn’t big or perfect, but it was ours. We closed the business we had built and scraped to establish, and left a community we were deeply ingrained in. We walked away from board positions and a network of people who were like family — all to be closer to Jaeger’s care team, five hours and a full state away.

The bone marrow transplant was even farther from our roots, taking us to Minneapolis — where Jaeger endured some of the most brutal chemo in existence. He was closer to death in those moments than he’s ever been. He lost the lining of his mouth, esophagus, and stomach — through both ends. He was on so much morphine that he developed a dependency, and after going through with-drawls, he had to be slowly weaned down. The hives, the pain, the daily brushing of his mouth with a sponge while he was hoarse from screaming — those were some of the darkest days we’ve ever lived.

My wife, Steph, was there with Jaeger every single day through the bone marrow transplant and all the aftercare that followed. She firsthand witnessed what it truly took to bring our son back to life. For 142 days she was there between the hospital and the Ronald McDonald House — being his nurse, his mother, and his lifeline. She faced the worst of it mostly alone, while I was hundreds of miles away trying to manage a job, care for our three other children, and maintain some sense of normalcy at home.

Every weekend we’d drive three hours each way to see each other. Steph and I would meet in the belly of the hospital’s parking ramp, go over the week, share a brief kiss, and swap places. Then it was my turn to step up and watch our son go through literal hell. Words fall short of what I experienced — let alone what my son and wife has endured. To avoid the Sunday night traffic, Monday mornings I’d wake up at 4 a.m., load the Yukon, and get the kids back to Fargo in time for school. I don’t miss those days at all.

On top of everything else, we had to rehome our two dogs — Bosa, our Saint Bernard, and Crosby, our mixed mutt— because Jaeger’s immune system couldn’t handle the risk of infection. We said goodbye to Bosa on Christmas Eve, and Crosby a few weeks later. Those were his best friends. Since the transplant, Jaeger has developed severe allergies to both dogs and cats, which has only made that loss harder. Our boy has always been an animal lover — and watching him grieve his pets while fighting for his life was crushing.

The only known cure for Jaeger’s leukemia — CML BCR-ABL with the 210 gene — is a bone marrow transplant. So when his blood came back showing it was reappearing in the summer of 2023, we were devastated. In all reality, we should be done, but we aren’t. Each time it tries to come back, the timeline extends. We’ve had to increase his dosage once already, and as parents, we see the toll — physically and mentally. We see his size compared to other kids his age, his maturity, the weight he carries. And we can’t help but wonder: what does this mean for five more years? Ten? Do we even have that long? These are the thoughts that never leave my mind.

He’s been through countless blood draws, bone marrow biopsies, and more specialist visits than I can count. He’s been part of case studies and clinical trials — our son has truly been through the ringer.

All we want is to feel normal again. We want to give our kids the kind of life they deserve. I want to be able to afford to take my wife on date nights again. And I believe we’ll get there — I don’t know when — but it won’t stop.

Thankfully there are organizations like the Bone Marrow & Cancer Foundation, helping families like ours with programs like Carelines and CancerBuddy. They listen, they help, and are willing to roll up their sleeves and lend a hand up.