Childhood Cancer Awareness Month brings up memories
September is Childhood Cancer Awareness Month.
I know I’ve spoken of this before, and I’m pretty open about my history on this point, but for anyone who doesn’t know, I am a childhood leukemia survivor. Consequently, while all the “awareness months” have value, this one is the most special for me.
According to the American Childhood Cancer Association, “In the U.S., 15,780 children under the age of 21 are diagnosed with cancer every year; approximately 1/4 of them will not survive the disease.”
It is hard to put into words what I felt when I was diagnosed with leukemia. I was 10 years old, and cancer was something I had barely heard of; it was something I never expected to happen to me.
We never do expect it will happen to us, do we?
When people find out I had leukemia, the usual response is, “I don’t know how you did it.” I tell them I did it because I had to – even though, looking back now, I am not sure how I did it either.
The day I was diagnosed is one I will never forget. I had been to see my pediatrician with infection and constant fatigue. After drawing blood, she directed us to East Tennessee Children’s Hospital that very afternoon. We waited for several hours to see Dr. Ray Pais; I waited still longer while he conferred with my parents in private.
July 19, 2000, I was diagnosed with acute myeloid leukemia.
I began chemotherapy that week, and with it came the worst of what you always hear about with intensive chemo; hair loss was soon the least of my problems. I spent weeks at ETCH undergoing multiple rounds of chemotherapy to try to destroy the cancer before it could destroy me.
Time and space would fail to be able to recount everything my family and I went through. Our motto was “one day at a time” – and although some bright spots punctuated the darkness of those times, they were few and far between.
One of those bright spots, however, was Dream Connection. I wasn’t far into my treatment when my family was contacted by Dream Connection, a non-profit organization that grants wishes for critically-ill children. I asked for a television – with a built-in VCR! – or a trip to Washington D.C.; they made both of those wishes come true.
My family and I went to D.C. in November 2000, in the break between my first rounds of chemotherapy and my bone marrow transplant.
As part of this amazing trip, we toured the White House, the Smithsonian, the Kennedy Center, and the Bureau of Engraving and Printing. It was the first time I had eaten at the Hard Rock Café, ordered room service, or ridden in a limousine. The effort Dream Connection put into this once-in-a-lifetime trip made it truly unforgettable.
I celebrated Christmas at home then started preparation for my transplant in January. Soon after my diagnosis, my younger brother had been tested as a potential bone marrow donor; praise God, he was a perfect match.
The days following the transplant dragged on as we all waited to see whether my body would accept the graft. I was at Vanderbilt by this time, confined to an immunosuppressant hospital room in deference to the obliteration of my immune system. We waited for daily blood work to show the cancer was really gone and my health was headed in the right direction.
Mom and I had a paper chain made of colored construction paper, and every day we spent in the hospital, we added another link. We always wrote something significant that had happened that day on each strip of paper.
Mom hung the chain from the ceiling; the intent was that when it reached the floor, I would be well enough to be discharged. Though in reality it took a bit longer, watching each link in that chain signify a day of recovery was encouraging. I still have that chain to this day.
I spent more than 100 days in Vanderbilt before being released to the Ronald McDonald House, where we lived for several weeks as my daily outpatient clinic visits decreased to every other day; to twice a week; to once a week. We got to go home then but still returned to Vandy every other week, and then every three weeks, and then once a month – for a long time.
Slowly, I regained my strength; slowly, my hair grew back; slowly, I came off my medications – slowly, I got better.
I remember being so excited when doctors gave me permission to return to school. Even though I had missed a year and a half, I was not behind in my classes. With my mom as my homebound teacher, I had completed all the same assignments as my classmates.
I’ll hit 20 years of remission Jan. 25, 2021. In some ways it’s hard to believe it’s been nearly two decades since I went through this life-defining experience; in other ways, it seems even longer, a lifetime ago.
This month I reflect back on my own struggle and also remember my friends from that time and the many, many people who were there for me and my family.
Some of you might not be “aware” of childhood cancer, but I would say most of us are. You probably know someone personally who has been affected, and our community has rallied together behind more than one child undergoing cancer treatments.
For those select few of you who aren’t aware, I challenge you to get aware.
For the rest of us, I challenge you to do more.
Here are a few websites for organizations that are dear to my heart following my own experience:
- knoxrmhc.org or www.rmhcnashville.com or www.rmhc.org
Find a way to help. Donate. Volunteer. Participate in a fundraiser. Cook a meal. Send a card.
You have my gratitude.