Date of story:
Friday, April 24, 2015 - 10:15pm
This story is dated April 24th, 2015 but it does not begin on that date nor can it properly be said to end on that date. April 24th, 2015 is the date upon which this story is written down; the end has yet to be written and the beginning lies 26 years in the past but for the moment let us focus on today and get to the past in its own time.
Today is Relay Day at Virginia Tech and I joined my wife and three children in rounding the Drillfield along with thousands of students and faculty. It was there under the halcyon glare of the event lights that my wife gave me this bracelet and asked me to tell my story: the story of why we go to Relay and of the tales I tell on my way around the track.
Twenty six years ago on an April day not unlike today my family drove to the teaching hospital at -- ahem -- that Other Virginia University for a medical appointment. I had been feeling weak and tired and blood tests ordered by my home-town doctor had shown figures in the sub-basement; the good folks in the Hematology department should be able to shed some light on the situation. I was to have a bone-marrow extraction done so that the doctors could see how my body was making blood.
I won't go into the testing procedure save to note that I was nine and that things have come a long way since then. The important part is the result, not the road to it; in this case the result was a single word: "cancer."
I would later come to know that the particular cancer that I had was Acute Lymphoblastic Leukemia - then, as now - the most common form of childhood cancer. About 1 in 300 children are diagnosed with cancer and fully a third of them are ALL patients. As cancers go its a good one to have, particularly in my situation. I was male; I was nine; I was diagnosed early: these three things gave me a good prognosis for the time - between a 65% and 80% survival rate, but only with aggressive treatment.
I began chemotherapy almost immediately and the drugs hit as you would expect them to. I dropped weight; I lost my hair; my skin took on a sickly white pallor and my energy level plummeted. Gone was the vibrant nine year old that my parents had taken to Florida that previous Christmas; in his place was a pale, sickly, weak child with sunken eyes and a bald head.
My treatment became my life; the routine of it dominated my daily and weekly schedule: blood test Monday morning; methotrexate injection on Monday afternoon; pills morning, after-school, dinner, and at midnight; port-flushes and spinal taps monthly, sometimes weekly; and amidst it all the unnamed and lingering fear of death.
Mortality and the end of life is not something that a child should have to contemplate but it is of daily concern to children fighting cancer. I found myself increasingly alone; unable or unwilling to bring my friends or family into conversation about my fear that the treatments would be for naught and that I might eventually sucumb to the disease.
The next summer I attended a camp for children with cancer. My mother had regaled me with stories of her summer camp experiences and sent me off without an apparent care in the world. Looking back now, as a father, I realize how hard that must have been for her. Putting on a brave face made it possible for me to go and she knew it was the right thing for me.
Camp was life-changing. I spent a week with 80 other children, many of whom had the same diagnosis, even the same treatment protocols, as I did. We whispered in the dark after lights out or talked as our canoes drifted around the lake. We compared notes, after a fashion: which drugs make you feel the worst; how do you cope with the pain from the procedures; and - of course - what pranks have you pulled on the ward?
I may have taught some kids how to reprogram their hydration drips so they didn't have to get up to use the bathroom at night; I can neither confirm nor deny that.
I came back from camp a different child; I lept into my mother's arms and exclaimed "Mommy, I'm not un-normal!" And I wasn't, grammar notwithstanding, Camp showed me that there were other kids fighting the same fight I was. It showed me that cancer can be invisible - that there are survivors, heroes, inspirations and brothers in arms all around us if we only stop to take notice. It showed me that there were survivors.
But it also showed me how lucky I am. There are names from that camp that I will carry with me for the rest of my life: Allan, Chip, Becca, Levi - there are so many more but with years and distance some blur together more than others. Not everyone makes it. Not everyone gets to say "twenty six years ago I was diagnosed with cancer." So I spent today doing it for them.
As I rounded the track with my infant son I stopped to talk to the people drawn by the irresistible lure of snuggly baby. "This is Levi," I said, by way of introduction, "and he and I Relay for his namesake - a young man I knew at a camp for children with cancer. Levi had an osteosarcoma that cost him his leg before it spread to his lungs where it eventually cost him his life. He was and remains one of the bravest and most decent people I have ever had the honor to know and so I named my son in his honor."
Levi couldn't walk with me tonight but he rode along in the from of a blue-eyed boy with rosy cheeks in a blue snow suit. Each person we talked to heard his story and got an invitation to do something to help. I will share that invitation with you now:
On May 7th from 11:00 - 3:00 Virginia Tech professors and TAs will be at the New Res Quad on Virginia Tech's campus to take a pie to the face for Special Love, the camp that turned my treatment around and changed my life.