Tuesday, February 18, 2014

Dear Neal, I'm Shaving My Head

When our first son was delivered 23 weeks prematurely, several things happened. Perhaps the most alarming was the way many moms and moms-to-be started pulling away from us...as if our condition of miscarriage was catchy.

Oh, you're going over to the Miller's tonight? You should be careful...y'know they lost one. Don't drink their tap water.

And maybe it was just me being overly-sensitive to how people reacted to the news and how uncomfortable they felt around us afterward, but also I think it was a real thing that really happened and it's human nature.

It's the same way with "putting things out into the universe".  Oprah talks about it, but so does my biffy Shana. When you put your thoughts toward something, it perpetuates into something tangible...good or bad. Focused on losing your job at work? Do not be shocked when you get canned. Obsessed with the possibility that your spouse is cheating on you? Eventually there may be thongs that were never yours wedged between the couch cushions. If I say something horrible aloud like "well if Blue ever got diagnosed with leukemia", Shana does this spitting thing on her fingers. I think it's supposed to expel whatever evil spirits I've beckoned with my what if. But don't we, as parents, have to think of these things? My mother and my husband would say no...that there is no point in spending time and energy worrying about something that may never happen. One is a psychologist and one is a logistician, so...a little heavy on the left-brained side of things. But I agree...to a point.

But what IF Blue was diagnosed with leukemia? Where would we turn?

And that brings me to the first of many posts over the next 4 weeks about St. Baldrick's Foundation and their mission to cure pediatric cancer, one head shave at a time.

I first learned of St. Baldrick's as Neal, Blue and I were pacing the local community center, trying to decide if we truly wanted to pay $6 to enter an event called The Bucksnort Longhorn 18th Century Market Fair. (On the one hand, I would get to use the word bucksnort in a blog post at least a dozen times...on the other, we would be paying money to unleash our grabby, curious, energetic 18 month old into a 1000 square foot room full of swords, knives, rifles, and leather. Lots and lots of leather. We decided to pass.) On the main bulletin board was a small poster about the upcoming St. Baldrick's event. It mentioned pediatric cancer and head shaving. I concluded that this needed more in-depth research.

The mission behind St. Baldrick's is to help fill the funding gap in pediatric cancer research. Since adult cancer is more prevalent than pediatric cancer, it receives the majority of the money. If you combine all the types of pediatric cancer, they still only receive 4% of federal funding for cancer research. And yet, when a child dies of cancer, they are robbed of decades of life that they could have grown up, gotten married, had kids of their own and, yes, perhaps even cured cancer. When St. Baldrick's collects money from their head shaving events, it goes directly to cancer research...to the research that has the very best chance of generating a cure.

So let's talk about the numbers to make it real:
  • More children are lost to cancer than any other disease in the US.
  • Before they turn 20, 1 in 300 boys and 1 in 333 girls will have cancer.
  • Worldwide, a child is diagnosed every 3 minutes.
  • Due to the research that St. Baldrick's has helped to fund, 85% of the kids diagnosed with Acute lymphoblastic leukema (ALL) will live. (Later this week we will meet Corinne, who is currently battling ALL.) 
  • Kids (infants, children, teens, and young adults) who are diagnosed with cancer are often given adult cancer treatments. But if you're a mom, you know for a fact that kids are not just mini-adults. 30% more kids would live if age-appropriate treatments were available. 
  • Although many adult cancers are diagnosed early, in 80% of the pediatric cases, the cancer has already spread and affected other areas of the body by the time it's diagnosed.
  • Even children who beat cancer will have medical issues later in life so much of the research that St. Baldrick's is funding focuses on preventing the lifelong damage that results from surgeries, radiation and chemotherapy given while young bodies and brains are just developing. 
Am I doing this to scare you? To make you play the what if game? To turn you into a complete hypochondriac where your children are concerned? No. (And for the record, I don't know that anyone is as much of a hypochondriac as I am when it comes to their offspring. I once spent 5 minutes awkwardly explaining the bowl movements of our son to a rather perplexed nurse.) I think it's important to not stick our collective heads in the sand and pretend like these numbers don't exist. I think we need to know that it can happen and that it might happen and that if it does, there is a foundation like St. Baldrick's that is helping in every way possible to speed up the discovery of a cure. And then we need to help the helper. And that brings me to this:

The main way St. Baldrick's raises money from mom and dads and kid-warriors like us is through head shaving events. Although it's quirky and provides a path for some of us to check off a bucket list item, it also shows pediatric patients who have lost their hair that they are not alone. They may have lost their hair but we are giving ours up...to say that bald is beautiful and we've got the chrome dome to prove it. I've had several people offer to donate money so that I will not shave my head and while I appreciate the sentiment, I think it's important to remember the kids who weren't given a choice. I think it's important to teach our own children that there are other people in the world...people who are suffering and surviving and that we need to offer support and solidarity. You lost your hair and I'm going to shave mine and now you aren't alone anymore. We are in this together. We've got this. You and me. When the end of our time comes, it isn't about power or influence or money...it's about relationships and how we behaved toward each other. That's the true indicator of a life well-lead. That's why I'm shaving my head and that's why I'm taking Blue with me. And, hopefully, we'll have a pocketful of money! 

Over the next few weeks, I'm going to introduce you to several kids in various stages of treatment and life after cancer. I invite you to read their stories. I know it's hard. Reading them in my email is hard. It feels like I'm making friends with cancer....inviting it in for tea and asking it to stay for supper. I feel like if I know too much...if I meet these kids and hear their stories and know their moms...if I let Blue around them, he'll catch it. And then it will be all my fault. If we are being honest, that is how this project could feel. But I'm choosing to embrace it differently. If we meet these kids and hear their stories, we find perspective and hope and encouragement. We find life being lived to the fullest between radiation and chemotherapy treatments. We find kids, just like Blue, who love pirate ships and Thomas the Train and tea parties. We find a network of amazing people who have been given difficult circumstances and are meeting each challenge head-on with faith and a smile. We find our heroes and that is definitely something I want to put out into the universe.

St. Baldrick's Shave for the Brave takes place here on March 15th. Between now and then, you can find me and Traci (AKA The Pixie Chicks) on Facebook, raising money through an online craft auction and various other out-of-the-box ways (I'm very seriously considering asking Neal to sing Cyndi Lauper while in an Uncle Sam costume when we reach the 1/2 way point of our $1000 goal. I think I can post that video straight from my phone.). Traci is a breast cancer survivor and has graciously agreed to shave her head, too....from her house 10 hours away. So, yeah...we are for real. We are looking for dolla bills y'all and you can send them here. Or make a little something crafty for the auction. We aren't picky, but we do want your help!


  1. Not as brave as you, but i have plastic. Hope you raise $5000! Sadly amazing stats. You go, Girl!

  2. I think this is amazing. What you're doing and the message you are getting out there to everyone. Thanks for including me!!! ox


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