Saturday, September 6, 2014

A new challenge

I was challenged to complete the Ice Bucket Challenge to raise awareness and money for ALS. As a student of sociology, I had been watching the challenge gain momentum on Facebook and had pondered the reasons why we, as a society, seem to need personal attention (a/k/a posting a video of ourselves doing something silly) before we will donate to a cause. Some folks took my ponderings to mean that I was against raising awareness for ALS, which I could take another look through a sociology lens to evaluate. I won’t do that here.

The fact about my relationship to ALS is that it has been my worst fear since January 2, 2002. I’ll get back to that date in a moment, but I have had an awareness of what ALS is and does for a very long time. It is my worst fear because I cannot imagine being “here” in mind but unable to express love for my family because my body won’t cooperate. It seems to me like it would be the worst thing that could happen to me – since 2002.

Before ALS, I had a different, deep fear. When I was an introverted old soul making my way through my 5th grade year, I read a book by Erma Bombeck entitled “I want to grow up, I want to grow hair, I want to go to Boise.” In it, she told stories about children who were battling cancer. As a fifth grader, I somehow wasn’t worried at all about having cancer myself, but I did develop a deep fear of having a child with cancer sometime in my adult future.

Even in college, I studied Biology with a focus on cancer and micro-biology. Always in the back of my head was that remembrance of the fear that I had. My senior year of college, I had my youngest son during the week before fall finals and I returned to school that next week to take my exams. I didn’t know then that I would learn more about pediatric cancer than I ever wanted to know in just over a year.

January 2, 2002, was the day that I learned my son, who had just celebrated his first birthday, had alveolar rhabdomyosarcoma (RMS). RMS is a rare form of cancer, and the alveolar subtype is one of the most aggressive. Through a year of surgery, chemotherapy, and radiation therapy, my son fought the battle with this disease and won. Today, he is 13 years old and, although he continues to have surgeries to correct skeletal issues as a result of the radiation, he is very healthy and I am thankful for each day that I get to be his mom.

The outcome is not always that good for the families whose lives are forever changed when a doctor tells them their child has cancer. Cancer is the leading cause of disease-related death among children ages 0 to 19, even though it is rare enough that (aside from leukemia) drug companies do not see it as being an area of strong need for research. In the United States alone, 37 children are diagnosed with cancer every day. That is 37 families whose lives are forever changed. Of those 37, 9 of them will die.

My reason for writing this is to issue a new challenge. Because we all found it incredibly easy to open our wallets and be silly for a good cause, I believe we can continue to do that on a regular basis. My challenge to you is to find a cause each month that you will open your mind and your wallet to. Whether that is a continual donation to ALS, a new donation each month, or whatever you decide to do, don’t let the ice bucket challenge be something you did just for a Facebook video opportunity.

Open your minds. Open your wallets. Change lives ALL year, not just for a challenge, but for good.

September is Childhood Cancer Awareness Month. My donation this month will be to St. Baldrick’s Foundation, which I have found to be an organization who puts a very high percentage of the money it raises directly into childhood cancer research.