For a while now, I’ve been thinking I should reinvent myself. After all, I have been known as “Harley’s Dad” for almost two decades.
Harley began his journey as a big, strapping kid. He was near the 100th percentile for growth and development. Then, the unthinkable happened. The diagnosis was cancer and all the heartache and drama that went with it.
His brain tumor required brain surgery, chemo therapy, and caused blindness, all about when he started kindergarten. It also affected his growth. One thing cancer never affected was his humor. The same could be said for his drive and his concern for family members and others. Harley was interested in everything, and that never seemed to wane either.
Multiple surgeries and two rounds of chemo appeared to insure a long and happy life; he was done with all treatments! One semi-annual check showed abnormalities in the blood, which quickly became leukemia. Our exhaustive search for a lifesaving bone marrow donor struck out, here and internationally,
Desperate, we were transferred to Houston for a haploid bone marrow transplant. They would use “Harley’s Mom” as the donor. (He received her cells during last year’s St. Baldrick’s event) When that transplant was declared a failure he was given cord blood that recently had been harvested. Again, Harley’s body looked like it rejected the new cells. During this time, his body was losing the battle. His kidneys, pancreas, and other organs were damaged from the excessive chemo and radiation being administered to prepare for these treatments. His body was weak, but his spirit was so strong.
Once again, they collected from Beth and took us up the roller-coaster by telling us her cells were robust enough to survive toxins and other cells being transfused so it has to be win-win, right? Wrong. Now the neuropathy in his feet and hands was so severe that he couldn’t stand or play any of his instruments or even read braille.
The doctors told us, and an hour later they told him the only thing they could do for him now was make him comfortable. He consoled them first by telling them not to feel bad; they did all they could do, and if they made any missteps, maybe they will get it right on the next patient. Harley tried to comfort us by telling us he wanted to be kept alive long enough to say goodbye to his family and requesting songs to play on the iPod. He told several visitors to watch over us because he worries about us.
Harley Franklin Fetterman died four weeks after he turned eighteen. He had been on constant oxygen, dialysis, bladder irrigation, and nearly constant whole blood transfusions for the majority of that final hospital stay. He graduated from high school, with honors, after spending most of his senior year in a hospital bed. During that time, he also qualified for the National Braille Challenge, entertained other pediatric oncology/bone marrow patients and their caregivers, and raised money and shaved for St. Baldrick’s.
He was always empathetic and taught me to be a better person by example. We know that every two minutes a child is diagnosed with cancer and a bunch of other facts, but those are numbers. These are our kids! We love them and don’t want to see any harm or pain come to them! We need to do what we can so kids do net get subjected to this… ever.
I’m so proud all of Harleys accomplishments and the way he lived his life and what he taught me, “Harley’s Dad” is the best I could hope the be called. The name stays.
