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a·ware·ness
noun
 1.knowledge or perception of a situation or fact.
  1. “we need to raise public awareness of the issue”

With tomorrow being the start of Childhood Cancer Awareness month, I sit here on the eve of September 1st eating my dinner with my family.  I am chatting with my husband Stuart about how I should write something for the month of awareness.  Then I say, “Awareness.  What a bullshit word.  That word is the problem.”  And just like that, my   blog post comes to you today.

I’m sure the word awareness comes from back in the day when no one spoke of cancer. The “C” word as it was called.  People died quietly.  Very rarely was a child with cancer was even seen.  Probably because there were no real treatments for them so they died so quickly.  Even 20 years ago they were barely saving one child who was diagnosed with neuroblastoma, so I was told at our initial MSKCC consultation.  Hell, we were told that Isabella wouldn’t have survived her brain relapse if it would have been just three years earlier.  So there you would have had it.  Isabella, dead 9 months after her initial diagnosis.  There wouldn’t even been enough time for me to get her story out to you.  So awareness month was a good thing back then.. hey, meet this little 3-year-old with cancer.. Nope wait.. She’s already gone.

But now times are changing.  These kids are fighting harder and longer.  Their stories are getting out there because the chemo drugs are not curing kids, they are extending their lives.  People ARE aware of them.  The awareness of pediatric cancer is out there.  But now we are getting stalled because the movement is not moving.

Here is what a typical pediatric cancer looks like this month.  You “like” a couple of Facebook posts about childhood cancer or maybe even “share” one.  You think about signing up for a childhood cancer 5k but your life is busy so you don’t get around to it.  You take your kids to soccer practice and do homework and have drinks with girlfriends and go to work and church and read People magazine to catch up on your favorite celebrities and how short Lindsey Lohan’s shorts were in NYC the other day.. Oh no she didn’t you say.  And then you are running errands in late September and start noticing the city turning pink and think, “I need to schedule that mammogram.”.

Then it is October 1st.

Did you know that the 2012 cost of government elections was more than 6.2 billion dollars.  Did you know that in 2012 the cost to RE-ELECT the SAME president was estimated to be 2.6 billion dollars.  That is something you should be aware of.  Because in 2012, we spent less that 10% of that 2 billion dollars funding childhood cancer research or less that 5% of the 6 billion dollars cost of 2012 government elections.  And just 4% of the total cancer funding goes to pediatric cancer.  Also scary to think about, 60% of all funding for drug development for adult cancers comes from pharmaceutical companies.  What is the percentage of funding for drug development from pharmaceutical companies for childhood cancer research?  Almost zero.  Why?  Because children’s cancer drugs aren’t profitable.  Ouch.

There is some awareness for ya!

So back to my issue with this awareness word.  The movement I want to start is this.. Let’s maybe change what your September looks like.  Print off a picture of my daughter.  Tape it to the back of your doors in your house.  That’s right, the front door and the back door.  Every time you walk out the door, take a look at her.  She died in my bed on a Thursday morning around 9:30 while her little brother was at camp at the YMCA.  She was 7 years old.  She died about 80 years early.  She also died because she ran out of treatment options.  She died because her cancer has very little funding and her drugs aren’t profitable.

Look at her picture when you walk out the door for your awareness.  “Awareness”.  Check.  But then when you get in your car to take the kids to school, go to work, go to the gym..  think about something you can do that is ACTION.  Forget awareness.   September is childhood cancer “ACTION” month.  Do something that day that is action to save a child’s life.  Sign up for race, make a donation, research what is really going on, ask your friends to help, talk about it, have a lemonade stand, write your congressmen, help a family who has a child with cancer.  Can’t think of something to do for 30 days?  Email me, I’ll help you with your list.

Cancer is an epidemic in this country and I’m confused as to why people aren’t freaking out more than they are.  Probably because they don’t have it.. yet.  Or maybe because we are all so “Aware” of cancer but aren’t taking action against it.  Maybe we are all waiting for the future of cancer.  They show it in the new Matt Damon movie as a scan on your body that just “SNAP”, get’s rid of it.  Truth is, that is not even a remote possibility in your life time.

Every day I’m aware.  I’m aware that she’s no longer with me.  I’m aware that my 3 year old daughter, Sophia is inside coloring a picture for her right now.  I’m aware that Isabella should be in the third grade this year.  I’m aware that my husband lives in fear that he will never be able to love his children as much as he loved her.  I’m aware that  my 6 year old, Grant has nightmares about her.  I’m aware that every day for the rest of my life I’m going to feel like there is something missing.  I’m aware of a lot.  So the word awareness works really well for me in my life.  Describe my life in one word actually and it’s probably awareness.

So let’s not make this month about just liking a Facebook e-card about cancer or reading  a family’s caringbridge entry and then walking away.  Let’s all admit that awareness is just a legacy bullshit word and lets all commit to making this month about action.  Action saves lives, awareness does not.

Give to neuroblastoma research.  http://www.firstgiving.com/fundraiser/isabellasantos/isf-2013-5k-for-for-kids-cancer

Here is your awareness picture

Here is your awareness picture