Common sense is advocacy to me

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There is this quote by Gertrude Stein that goes:  “Everybody gets so much information all day long that they lose their common sense.”  At first, I did not understand what that meant.  I asked around.  Friends told me what they thought it meant.  The common answer was “don’t believe everything you hear.”  It’s the age of the internet, and information is out there, free for the taking – or in some cases, not free for the taking (meaning you have to pay for it, for instance, online college classes). I decided to put a childhood cancer awareness spin on it, seeing how it is still September and Childhood Cancer Awareness Month.

Childhood Cancer is not rare.  It can strike any time, any place.  It does not care if someone is not aware that kids get cancer.  It is common in the childhood cancer social media community to think that all the cancer kids are at St. Judes Research Hospital, and that they will be fine, just fine before that someone’s child is diagnosed.  It is common to think childhood cancer is very rare, and it is equally as common to think that the only cancer kids get is leukemia.  If only…

And doctors themselves call it rare…  “I’m very sorry to say that your child has a rare form of childhood cancer and we need to start treatment immediately.”  Um…  if it was rare, why is pediatric oncology a viable career choice, and why are pediatric oncology wards always full?

Don’t believe me?  Go visit one and see for yourself.  Trust me when I say it would be the best day ever when every bed in every pediatric oncology floor in the world is empty.  It would be the best day ever when pediatric oncologists are out of a job, and can be regular pediatricians, and cure a cancer on the spot, or within a few days or weeks.  Maybe I’m just dreaming.  Maybe I am just telling fairy tales, but I know this for certain:  heaven is full of children who should not be there.  They should be here, healthy and whole, living their lives.  But where these children once were, there is only silence now.  And tears.  Lots and lots of tears.

Think of it this way .  If, every single day, 43 families are told, “your child has cancer,” that adds up to 1,290 children this month alone, in USA.  If you stretch it worldwide, the number is unbelievably large.  Bear in mind that math is not my strong subject…  in USA that means 15,695 kids are diagnosed annually, and even a larger amount of children are still in treatment.  Numbers can fluctuate year to year,and even day to day, so sometimes it is more children diagnosed every single day, and sometimes less.  But the fact remains that even one child is too many.  Children should not have to fight diseases with names they cannot pronounce.  Older children should not be spending their time in a hospital bed, or a couch at home, too week to get up.  They should not have cancer, period.

It is mind boggling to me how many people look the other way when confronted with the truth about childhood cancer.  I have written so many letters and emails to politicians and always get the typical form letter back.  Thanks, but our children deserve more than that.  I know my niece and nephew do.  My niece, who is 5 and a half, believes that when you are sick, there is medicine to make you better.  She knows that when I was little I had cancer, and she knows I got even sicker even though I was taking medicine (chemotherapy) for the cancer and that it damaged my brain stem.  My nephew is almost 5 months old, and his face brightens into a smile when I talk to him.  That is innocence.  There is nothing I wouldn’t do for them, and so I fight…  I fight because I know the truth.  I know childhood cancer is not rare, and that tomorrow or somewhere down the line one or both of them could be diagnosed with cancer.  I pray that they won’t…  I pray for every child I know because I know it can happen.  It is like a constant fear that I have…. everything is cancer until it is not.  Everything.

Common sense is advocacy to me because I can’t let it go.  I have to do something, be a part of the solution.  Do you know there are 12 different types of childhood cancer and about 200 subtypes?  Did you know that the USA government only gives the National Institute of Health only 4% of the federal budget for childhood cancer research?  Adult cancers get 96% of it!  And researchers have said over and over that a cure for childhood brain cancer could lead to other cures, including for adult cancers.  Right now, grieving parents are donating their children’s tumors after death. Cancer is the number one cause of death by disease in children.  The number one cause of death!

In what universe is this okay?  You are now aware.  Please do something.  Please pass this on.  Share it.  Scream it.  Don’t look the other way.  Tomorrow, your child may be thrown into the fight of his or her life.  How are you going live with yourself if you are silent today?

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