Why GOLD?

There was a time in my life, in so many people’s lives, that I was blissfully unaware of childhood cancer. I grew up in an era where I knew only one child that was sick with cancer, I saw St Jude’s and I had this false sense of ‘okay’… that they had done all the work. I lived in a world that presented childhood cancer as under control and treated and high survival rates. So many I know lived in the same world.

Fast forward to today and the world I know, see, feel and understand much better. A world that my daughter Madeline was diagnosed with Diffuse Intrinsic Pontine Glioma, a brainstem tumor that stole her breath and heartbeat and amazing smile in only 5 days. A world that I was really dropped into, with none of the traditional cancer parts… no long hospital stays, no chemo, no trips needles and loss of hair. I was dropped right into that worst case scenario world full of grief and loss and missing. A world that I met so many parents who had lost their amazing child, some a year ago and others back in the 90’s… each still carrying the pain and hurt and missing- right alongside the faith, love and positive perspective that they have. A world that just this year I had 3 friends head to heaven in about a week… 3 new parents in this grief, loss, missing part…

I was thrown into a world of ‘Did you knows?’… the biggest fact for me is how freakin’ many people this effects. How many parents have heard the words “Your child has cancer” and how many children are faced with extreme treatments to hopefully cure their cancer and not poison their bodies too much. Did you know that of ALL of the government funding for cancer only 4% goes to Childhood Cancer research. Think about it… only 4% of funding to split between DIPG, Osteosarcoma, Nueroblastoma, Rhabdioblastoma, Leukemia, Lymphoma, Medulloblastoma, Ewings Sarcoma… and the list of long names is much longer… Each of those cancers is VERY different. 4% of funding to children… to the one’s who need to grow to be the researchers that work on cancers, the doctors that treat cancers, the teachers that educate students, the police officers that protect children and families… the next one’s in the lineup to run our world. Only 4%… the hardest part is the adults with cancer can rally and odds are some of the politicians that influence those funding dollars location are adults and draw from their experiences and illnesses and push for those. Those politicians and adults are able to fight… a child who is undergoing treatment is pretty busy, staying afloat. That child’s parents are busy too… being the parent doctors and cancer specialists that they are. They are trying to find ways to keep health insurance and find a normal for their family… they don’t always have the time or energy to put toward changing that 4%. Did you know that most Childhood Cancer drugs were developed over 30 years ago. It has been THAT long since Childhood Cancer treatments have improved. Do you know how many amazing kids have been lost since the 1970’s? Did I tell you I lost 3 friends this summer… 3 friends with different cancers, different journeys and different families… all with Madeline now. I will tell you 4% is NOT enough. 96% of all government funding of cancer will not help the future that was supposed have 65 more years of Madeline. That future should have had 60 more years of Kalina, 65 more years of Naomi, 65 more years with Julian… and Myles, Devon, Elijah, Onja Rose, Ben, Jonathan, Catie, Tyler, Nick, Morgan, Luke… so many more. That is A LOT of years. Those useful years deserved more… way more than 4%.

madeline gold

Why GOLD? I have a theory. Our children are the GOLD, the highest, the ones… they have a HUGE need. Gold is radiant, noticed and valuable. Our most beautiful possessions are oftentimes gold… Gold anniversary signifies an extraordinary feat, a super special event. Our children are gold, every single one. I am an advocate for Gold and childhood cancer, not only for my amazing Madeline, but for your child. I am gold for your child and your cousin and your grandchild… your friend’s lovely or your child’s best friend in Kindergarten. Childhood Cancer does not discriminate… 5 years old, 15 years old… white, black… tall, short… rich, poor… kind, mean. We are working to share GOLD and change this for all the ones we can prevent from hearing “Your child has cancer”. We are working to change that stupid and low funding number, 4%, for all the awesome ones I get to see and bring gifts to right.this.very.moment. For those brave kids who won’t get to start school tomorrow because they are sitting behind glass hoping for new drugs, higher counts or painful treatments. They are busy getting better…

We need to get busy sharing. Gold is the color. Gold is the need. Gold is for our radiant and valuable lovelies. Gold is for the ones who left us to bring them along on this journey… the ones that are fighting and changing and busy getting better… gold is for the children and parents and sisters and brothers who will hear the words “Your child has cancer”. Gold is for the lost years… and to losing less of those years.

I ask you to go GOLD. I ask you to share this, share all of the Gold work. Share the pictures and the children and their stories. We need this… so many who are still living in the world that is blissfully unaware will have their world flipped over. Go Gold for me, for us, for them… for Madeline.

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