Let’s make some gold noise!

gold ribbon for childhood cancer awareness

Tomorrow is the first day of September, and it is also the first day of childhood cancer awareness month.  As most of you know, it is a cause near and dear to my heart because I am not only a neuroblastoma survivor, but I am also physically different for having gone through my fight.  My immune system was wiped out thanks to the chemotherapy I was on and my body had zero defense against the viral encephalitis.  Picture a two and a half year old girl, burning up, sobbing, and screaming that her legs hurt. Can you see her?  That was me.  My parents rushed me to the emergency room, but it was too late.  The damage was done.  My brain stem was affected, and my body was too.  For two weeks, I lay in a semi-coma, though sometimes I would wake up and just cry.  I had been right handed, but now my right hand was curling up against my body.  At nearly three years of age, I was reduced to a newborn state of being.  I was still there mentally – people would ask me questions and I would shake or nod my head in response.  I have come a long way in the last 30 years, much further than my doctors back then ever thought I would, but I am never going to be the same.  I am never going to experience true independence.  I will never live on my own, I will never drive a car, and I will never have children of my own.  I will never again have a strong, able body, and I will never again think of childhood cancer as rare.

Imagine my horror, when years later, when I find out not only was childhood cancer was still killing children, as it had killed my little friend Missy back in 1984, but it was also seriously and terribly underfunded.   Pediatric cancer gets less than 4% of federal funding, all two hundred subtypes of it, while adult cancers get the remaining 96%.  Cancer is the leading cause of disease in children under the age of 15.  Every single day, 40 plus families are placed on the battlefield, and every single day, 7 more children die from cancer.

The childhood cancer community on social media is now reeling from the loss of 14 year old Erin Griffin.  She was a Scottish born Australian who was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG) on February 18th, 2012.  DIPG has no cure.  It is a death sentence to the diagnosed child.  Erin was a beautiful child, sweet and charismatic.  She refused to give up fighting for herself and others.  I have no words for her loss, other than “I am sorry, Erin.  I promise I will fight harder.”  But the truth is, no one fights harder than all of us childhood cancer advocates.  No one.  We have everything to lose, but at the same time we have everything to gain as well.  We have to keep pushing for more research.  We have have to keep pushing for cures.  A cure to pediatric brain cancer could very well lead to other cancer cures, both pediatric and adult.  And yet…  there is no money to research it.  

TheTruth365 page announced “Erin died at 12:30 a.m. on September 1, less than an hour after Childhood Cancer Awareness Month began in Australia. Her mom Amanda says she knew that Erin was holding on until September 1 because her mission in life was to spread international awareness of childhood cancer. (Erin was also born on the first day of Brain Cancer Awareness Month.)  Amanda said that Erin died peacefully with her family by her side. Her tumor will go to DIPG research in Sydney.

I’m sorry, Erin.  Fly free, little love.  We’ll finish this fight for you.  

Erin Griffin RIP

 

We cannot be silent. Let us join their little voices ans make some GOLD NOISE this September.  For Erin. For all of her friends in Heaven, for all of her friends who are still fighting here on earth.  GOLD NOISE will win this war against childhood cancer. We are unstoppable because what we are fighting for is worth it.  Children are worth it.  All children are worth fighting for.  

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