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Aug 18, 2016 Latest post:
Aug 1, 2017
I was diagnosed with chronic lymphocytic leukemia about six years ago. I went into remission after a round of treatment. The cancer came back about four years later and after a couple new treatments didn’t work, the doctor told me I needed a new immune system. I will be admitted to the hospital on Aug. 25 and will have a bone marrow transplant Aug. 31.
(His Daughter) Jesse’s version:
“Do your best and try to have fun.” According to my dad, that is the only answer to any question that starts with “What should I do?” or “How can I get what I want?” or “What if it doesn’t work out?” From the time we were small -- pee-wee shin guards and tiny tap shoes – my brother, sisters and I were told that the outcome didn’t matter as much as the effort we put in. We had the luxury of growing up in a home where it was okay to fail, as long as we tried our best and gave whatever “it” it was our all. How incredible! It instilled in each of us a love for learning (and not just getting the right answer), a competitive spirit (if you’ve heard one of us sing “Champion,” you know what I mean) and a resilient resourcefulness (any of us can fully outfit a home and stock a fridge with findings from a dollar store and Big Lots).
All my parents have ever asked of us is that we do our best: from riding a bike, to art class, to Psych 101, to child rearing. And now, to supporting them through this nebulous time that will surely shape us in ways we have yet to grow.
This all began about six years ago. Dad had felt a bit off and noticed swollen lymph nodes in his neck. Given our family history with chronic lymphocytic leukemia, he saw the doctor as soon as he could. A battery of diagnostic tests confirmed the fear. It was cancer. He worked with his doctors to develop a treatment plan and got his head around the situation before he and Mom spoke to us kids. They didn’t sugar coat anything. They spoke in plain English and said “I don’t know” when we asked them questions they didn’t know the answer to. But they never sounded scared.
As Dad said, “This isn’t a terminal illness, it’s just a disease to manage.” He likened it to diabetes. “It’s just a little ‘lump’ in the road,” he said.
So, on Dad went into the treatment plan, the chemo and ports and IVs for six months. And he didn’t complain. He just did as he was told. He brought hand sanitizer everywhere. He avoided germs when he could. He walked his daughter down the aisle. He danced at her wedding and toasted the family and friends gathered there. After a cleverly signed Valentine card gave him the news that he was going to be a grandfather, he received more good and awaited news: the treatment worked and the cancer was at bay. He was in remission and could expect to stay there for four to six years.
And he walked his next daughter down the aisle, and toasted her husband who was once “a little boy who walked around with a smile on his face because he had no idea what he was in for.” And more babies came. All of them boys. Of course. And then he walked his youngest daughter down the aisle and he celebrated. He celebrated her new life and the new life of the family he grew – all his kids found the people they would build their lives with. And he was happy. And he could rest.
But cancer is not so kind and emerged from dormancy four years into remission. Mom and Dad treated it the way they knew how. Sheer force of will and visits to Dr. Essell. A new plan was laid out. Only this time, things did not go according to plan. So the doctors changed the plan. Then they changed it again. And then again. I’m not sure what plan we’re on, but it wasn’t Plan A or Plan B. Cancer just doesn’t work that way.
Fittingly, it was around Easter, a holy day focused on rebirth, that we began to talk more seriously about a bone marrow transplant. The doctors spoke very positively and optimistically. After all, Dad is “The picture of health, except for the cancer thing.” And one by one, we all got on board and saw that this is a good path forward. The best path forward. This will allow Dad to have his life back and all of us to have our Dad (and PawPaw and BobBob) back as we know him. The quick-to-a-hearty-laugh guy, enjoying a good beer (and talking about it), jamming out to progressive rock (and talking about it) and reading a well-worn copy of a PG Wodehouse novel (and talking about it).
In short, this bone marrow transplant is the very real demonstration of the biggest lesson taught and greatest gift given: this is my dad showing us how to “just do your best and have fun,” even when it’s hard, even when you have to give up beer, even when you have to sit in a hospital room feeling cruddy.
Do your best. It’s as simple and difficult -- and fun -- as that.
Dad will be admitted to the hospital on Aug. 25 and his new birthday will be Aug. 31, day zero, when the bone marrow transplant takes place.