Saturday, May 25, 2013

A Boy Named Zach

On Monday Zach Sobiech, an 18-year-old boy from Stillwater, passed away after a long battle with osteosarcoma, or cancer of the bone.

Zach was a remarkable teenager who we all got to know through Children's Cancer Research Fund. CCRF had heard about Zach's story and diagnosis of terminal cancer and asked him to be a featured in the KS95 for Kids radiothon this past December. Turns out Zach has a talent for song writing, and he was saying good-bye to his family and friends through song. His song "Clouds" was played on the air as a part of the radiothon.

He signed a contract with BMI. He recorded more songs in a real recording studio with talented aritsts and producers surrounding him. He headlined at a concert at the Varsity Theatre in Minneapolis, with all funds going to the Zach Sobiech Osteosarcoma Fund. Doors opened for him -- quickly, because everyone around him could see that time was running out for Zach.

And finally, the predicted happened. On May 20th, Zach died at home, surrounded by his siblings, parents and long-time girlfriend.

Zach's sister has written since her brother's passing about how his family struggled to find meaning in his death. She finally acquiesced to let God have him, hoping that Zach's passing would have meaning.

Zach's song "Clouds" hit Number 1 on iTunes two days after his death. Each purchase raises money for the Osteosarcoma Fund, which at last count has $250,000 in it, all thanks to Zach. According to one of the researchers at the University of Minnesota, the money raised is enough to begin genetic mapping to determine the root cause of osteosarcoma and find new ways to treat it.

I don't think Zach's sister has to wonder if his passing has meaning. The money he's raised and the research they'll accomplish will have meaning for thousands of cancer patients yet to be diagnosed.

It wasn't until after he had passed that the reality of his situation and its similarity with one of a boy I knew 21 years ago hit me.

Minus the media attention, the signing contract, the rock star status, the hundreds of thousands of dollars in charitible gifts.

I don't mean to take anything away from Zach, but it doesn't seem fair. There are thousands of children across the United States struggling with cancer, and many of them will lose their lives. Only a few get to make a difference the way Zach did.

Two decades later, I wonder who outside of Paul's immediate family and friends remember him, or if his life and death mean anything to anyone other than those he left behind.

And then I remember that he had participated in a clinical trial at the University of Wisconsin. He participated in a new chemotherapy protocol that at the time held promise for his kind of cancer. Unfortunately it was not successful in stopping his cancer, but at least researchers had the data to add to their learnings. I wish I knew what happened to that research, if it eventually resulted in new treatments or was abandoned as unsuccessful.

When the cancer returned after that chemo treatment, the University offered to try a radical new treatment. It had only been done a handful of times before with mixed results. (At least they were honest in their assessment).  It was called a bone marrow transplant. BMT's are done today with great regularlity and success. There are people living today who have had TWO bone marrow transplants and have lived to tell the tale. But when it was offered to Paul, it was in clinical trials and only a couple of people had survived the procedure.

His choices were: 1) undergo a painful and difficult procedure which had a 50% chance of killing him or 2) enjoy life, treasure every second of it knowing it will be over before any of us want it to be.

He chose option number 2. And I'll be honest, I'm glad he did. We had a wonderful summer together in 1992, taking trips to Great America, driving out to the lake and walking out to the lighthouse, going on bike rides through the countryside. He took a vacation to Mexico with his family, the only time he'd been to that country.  I foolishly returned to school in the fall and four weeks later, on September 29th, 1992, Paul died on a hospital bed in the middle of his living room, surrounded by his siblings and parents, but not his girlfriend. I wasn't there, and I regretted that decision to return to school for years.

My memories of him live on in journals, a scrapbook, a box of letters. I think of him at least once a day, usually with a smile and a nod to the stars.

Zach's passing has brought Paul's back to me like it was yesterday. I know the pain of the days to come that face his family, and I wish them peace and healing in the days and years ahead. They will be able to look back on his life and last days with gratitude for those experiences, and I hope they can smile.


  1. I remember Paul. I do not think of him as often as you do, but I recall the tragedy. I was not with you during that time and I regret that. Not that I would've made a big difference but I would've been there. I remember Paul's family, not all, but his Dad Rolly, his Mom, and Sarah. There were a good family and have had to withstand several terrible times. It is the strength of the family ties that make it tolerable. You are privileged to have such a relationship in the past and to be able to write with such openness now. Thanks.

  2. Anonymous1:35 PM

    I remember Paul. And I remember your devotion to him. I remember how unfair his illness seemed - he was the fittest person I knew. I remember him running in his Oakley sunglasses, always smiling and friendly to everyone. You're right that the path is difficult and long for remaining loved ones. But you're also right to keep remembering and feeling what that person means to you. Thanks for helping us all do that. (Sharon Wolf)