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    Posted August 12, 2014 by
    Monterey, California

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    What She Said


    “I will fight for my children on any level so they can reach their potential as human beings and in their public duties.”
    Princess of Wales Diana


    Today is International Youth Day. The purpose of the day is to draw attention to a given set of cultural and legal issues surrounding youth.


    I know of an issue….It is called Pediatric cancer…Huge issue…Big problem in need of immediate attention…something that seems very hard to obtain for kids with cancer.


    I am saddened that the Empire State Building is forcing cancer kids and their parents to fight so hard over a simple flick of some switches.


    It’s disconcerting that the pediatric world has to beg…but children are worth begging for.


    Somebody at Empire State Building needs to “turn on a light up in that place” because our voice gets louder with each child who receives a cancer diagnosis and every single warrior we lose in the fight.


    We are not going away…we grow with each day.


    Some real consideration needs to be given about what awareness means to a child with cancer and why it is important to be “aware”.


    For me I want awareness to lead to equal funding from our government and every major cancer organization that collects funds for cancer. In my opinion the concept of equal funding is also an easy fix … as simple as a flick of the wrist as you sign on the dotted line.


    President Barack Obama flicked some switches and made history in the fight against pancreatic cancer by signing the Recalcitrant Cancer Research Act into law. It requires the National Cancer Institute (NCI) to examine its current research efforts on cancers with very low survival rates. With specific goals to develop early detection methods and better treatment options for those diagnosed with the most deadly forms of cancer, including pancreatic and lung cancer.


    That is so wonderful and will make a difference but only for adults with cancer not for children with those same types of cancers because adult cancers are very different from pediatric cancers.


    Does he know that kids get cancer too?


    Where is the legislation to save our day…Oh the Gabriella Miller Kids First Research Act…here it is…This piece of legislation was created to put millions of additional dollars into pediatric medical research.


    Here is a recent post from Gabriella Miller Kids First Research Act Facebook page.


    “Progress has stalled on the Gabriella Miller Kids First Research Act. Despite passing the Senate without objection, the first draft of the Senate appropriations legislation did not include funding for the bill. On Wednesday, Gabriella's parents are heading back to Capitol Hill to meet with the chief Senate sponsor, Virginia Senator Tim Kaine and the chief House Sponsor, House Majority Leader Eric Cantor to discuss how to get the legislation funded.”-Gabriella Miller Kids First Research Act Facebook page


    Sounds like a bunch of smoke and mirrors.


    I guess the lack of any “real” forward movement explains the horrible “real” statistics that children with cancer face today…and it is not a hunky-dory 90% survival rate.


    There will never be an explanation good enough for my Matthew diagnosed with a rare form of leukemia. He was placed on too many experimental protocols to count and endured an enormous medical file of toxic cancer treatment only to have the harmful effects of his treatment take his life.


    There is no explanation we can give to little Jennifer (#Love4JLK) who was diagnosed with a cancerous brain tumor DPIG. Her diagnosis came with a zero percent chance of survival….we couldn’t even give her a fighting chance.


    We have no explanation for Cameron who fought multiple relapses with AML. Surviving a bone marrow transplant, radiation, and toxic chemo’s only to have cancer attack his heart. He would be sent home on hospice…the next time this ball player made it back out to the baseball field was when his teammates dedicated his jersey.


    Why can’t the world get it…we love these kids…they are greatly missed.


    Yesterday we lost a celebrity pediatric cancer advocate, Robin Williams. It was a sad day for many with the passing of such a great man but one thought that I hate thinking but often do…is “he was lucky”…he got to fall in love…he grew up and became something…63 years…he made it into the double digits.


    Matthew was born a cancer patient and my sweet boy would die one. Cancer stole his destiny…his story…his life and everyday cancer takes the future Robin Williams of the world....future presidents, inventors, creators.


    Cancer is stealing the future 7 children at a time with each passing day.


    We need help in saving our future and that help right now must come from you.


    The month of September we are asking any place with a light socket to change their bulb to gold or yellow light. We do not need to wait on the White House or the Empire State Building to do the right thing we can do it ourselves.


    We also want to use the power of social media and ask President Obama to Step Up and provide equal access to government funding for children with cancer. Nearly 8,000 people have been invited to take part in this event...only 617 have accepted and 65 said maybe.


    Please do the right thing and join us in our fight. It will cost you under $10.00 but could create a pathway to change.



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