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“I have a dream..”

-Randy Russell

As parents we never stop dreaming about our children’s’ futures.  From the moment they enter the world we think of what they may become and how we can help them get there. Some dreams are for our kids to be professional athletes or scholars; others may be that they just simply find happiness.  We want the very best for them in everything they do, and I think we can all agree that we would go to the ends of the earth to help make their journey as smooth as possible.

When my son was diagnosed with cancer on November 5, 2012 at 3 years old all of these dreams changed.  The idea of my little man being a pitcher changed into simply seeing his next birthday. The dream of watching him graduate college or getting married was shattered and brought down to simply hoping his treatment wouldn’t harm his body and lower his quality of life.

Now that he is off of treatment, some of my hopes and dreams have changed yet again.  In the few weeks after we were introduced to the world of childhood cancer, we learned of the brutal and archaic treatments the children must endure.  We learned about how little money is spent by our government to further research, and slow progress has been as a result.  The words of my son’s oncologist during our first consultation still haunt me. He said, “We get one shot at this.”  At the time I didn’t realize what he meant.  It means that what little works on this form of cancer is thrown at it in the beginning, and if that doesn’t work there’s not much of a plan B.  The drugs my son was treated with are all over 30 years old, and that is the best we have.

I have had a difficult time wrapping my brain around the idea that as a society this is the status quo. There is $30 billion a year spent on cancer research, yet our government only allocates about $200 million per year on average through the NCI on pediatric cancer research. That’s less than 4 percent. This amount is then spread out over many types of childhood cancer.  Leukemia for example is not a single type of cancer, it has many subtypes, some of which are relatively rare.  Each of these individual types needs its own research and treatment. A study done by the Wall Street Journal put the average cost to bring new drugs to market at close to $1 BILLION.  It doesn’t take a calculator to realize that this math doesn’t work well for our children.

Childhood cancer is the NUMBER 1 disease killer of children, more than AIDS, Cystic Fibrosis, Muscular Dystrophy, Asthma, and Juvenile Diabetes COMBINED, yet only gets a fraction of the funding of the others.  I am not advocating cutting funding from these other diseases, but the need for an increase in funding for childhood cancer should be a no-brainer.  I said before: we will go to the ends of the earth for our children, but when it comes to pediatric cancer it’s somehow okay for children to receive a 30-year-old drug that leaves massive long term effects.

Today, as we look back on Dr. Martin Luther King Jr.’s life and legacy, one thing stands out to me.  He believed in an idea so strongly that he never gave up. He never wavered and was willing to give everything to see it through.  I look at the cause of childhood cancer the same way. This inspiration and the change he was able to forge into our society gives me hope.  The road to change public perception is never easy, but it is one we must travel.

“Our lives begin to end the day we become silent about things that truly matter”
– Dr. Martin Luther King Jr.

 

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