September has ended. And I feel guilty for not doing more to promote Childhood Cancer Awareness month. Some years I’m more involved than others. Mostly I just get tired of trying to raise awareness about a situation that if it hasn’t affected you or your family directly you’re likely to just shy away from it. I get aggravated as we roll into October and every woman’s magazine on the shelf is decorated pink and features some celebrity who has either battled Breast Cancer or had a family member who battled Breast Cancer. What articles did they feature in September? Who knows? But I know one thing – their covers weren’t gold and they weren’t featuring kids with cancer.
It’s not just magazines either it’s everywhere. All October long you can buy everything from Chicken Noodle Soup to Chapstick to Mopeds decked out pink with pink ribbons and Breast Cancer awareness labels. It’s not that I don’t understand the importance of Breast Cancer awareness – my mom has had Breast Cancer TWICE. And because of that I’ve got a better than average chance of being diagnosed with Breast Cancer sometime in my life. I GET IT!! But I also want the all the media and consumer attention that gets directed towards Breast Cancer in October to be directed towards Childhood Cancer in September.
Wow I sound like a diva… I want all the media attention.
But the reality of it is….. I’m not going to get it. I haven’t in the past six years and I’m probably not going to get much more in the upcoming six. It’s not that there aren’t national organizations or major companies that support Childhood Cancer it’s that there aren’t enough. Off the top of my head I can name the ones that support Childhood Cancer: Hyundai Motors, Chili’s, Glad, Asics, OXO, Volvo, Rita’s, Applebee’s, Old Navy, and Northwestern Mutual. Hyundai is one of the major contributors with their Hope on Wheels project. The other companies are involved through other childhood cancer organizations like Cookies for Cancer and Alex’s Lemonade Stand.
I shouldn’t be such a negative Nellie, because the list of supporters is growing. But it’s growing slowly and I want an explosion. I need to learn to be patient. However in the six years I’ve been patient nearly 81,000 children in the United States were diagnosed with cancer and approximately 15,000 died from the disease. But sadly Childhood Cancer is still considered and “orphan” disease – meaning a disease that has not been “adopted” by the pharmaceutical industry because it provides little financial incentive for the private sector to make and market new medications to treat or prevent it. “Orphan Diseases” are ones that are affect less than 200,000 people – only 13,400 kids each year are diagnosed with cancer. ONLY… listen to me! For the 13,400 kids and their families it’s EVERYTHING.
From the day you hear “your child has cancer” everything changes going forward. Your outlook on life, on death, on parenting, on family, on love, on friendship, on jobs, on faith, and on hope all change. Anything you thought was important to you or in your life changes after a child is diagnosed with cancer. And all any of us mom’s and dad’s out there who have experienced this is for other people to see what we see. We want better treatments if not for our own children who are in remission for the 13,400 new kids next year. We want more options for treatment, less invasive procedures, more specialists in our area …. We want our kids to have a better life and a better chance for the future. So every September we dust of our soap boxes and pound our drums and hopefully recruit a few more followers to help us promote our cause.
But back to reality.
The reality is simple. People don’t like to be reminded that kids get sick. They don’t like to think about the hurt and pain kids go through while doing treatments. It’s scary for parents to think that something like that might happen to their kid. And because it’s scary and sad and heartbreaking people shy away from it. Ok to be perfectly honest sometimes I shy away from it too. But this year I saw something positive in our journey with cancer. Teagan was asked to be a guest speaker at an elementary school for “Hero Day.” Twice she stood up in front of 3 classes of second grade students and answered questions about having cancer, chemotherapy and being partially disabled on her left side. Yes I stood up with her and helped her out with a few answers – things like medical terms and dates and timeframes – but she stood up and eloquently (for an 11-year-old) and very matter-of-factly explained what happened to her.
This year a group of 2nd graders. Maybe next year a whole school. Maybe the year after that an auditorium full of people. Maybe eventually Congress. She is charismatic and has big things in store for her even though she can’t see that yet. As usual through this journey she is my guide.
I’ve come up with a new plan for next year and hopefully I can get organized before next September.
GOLD is the new BLACK. (hashtag) : D