Friday, September 12, 2014

Whats all the Fuss about Childhood Cancer

September is Childhood Cancer Awareness month.  Sort of like October is Breast Cancer.

I guess it is hard to believe there are people that are not "aware" of Childhood Cancer but given the small amount of funds (4%) go directly to Childhood Cancer research it is easy to understand.  It is such a small percentage of the cancer population the drug companies have not developed any new drugs for a long time.  That being said, I am still baffled at the lack of knowledge about what happens to kids during and after treatment.  

People often want to know if Mary-Elizabeth has been cured. I never know what to say about it. The medical people love to talk about 5 years, or 10 years of being cancer free.  We have small and young children. For example, if Robin Ulness makes it 5 years post cancer, she will be 7 or 8 years old.
 Mary-Elizabeth will be 24 years old.  Does not seem like much time.  She will maybe be just out of college.   

Just imagine if you only were able to allow yourself to look 5 years ahead.  No more, that would be all the time you have.  5 years.  Your child does not get to be any older then today plus 60 months.  The length of time it takes for most Americans to pay off a car.  1/6th of a house loan.  

I guess what I want is people to pay attention and maybe focus a bit on what is happening behind the smiles and the "sure we are great" that parents and Cancer Kids often have.   Because it is hard.  Even if you kid is "fine" and getting better each day.  Many are not.  Many are still trying to find away out of the grief and the pain of loss.  A family had to have the "talk" with younger brothers and sisters.  The your brother is dying talk. 

Don't take me wrong, I am so so grateful for what is available, for new and improved treatments, for less invasive treatments.  I understand how complicated this all is. But....

Just take a moment.  Look at the full moon and ask the universe to leave these kids alone.  Let them live out their lives. Let them fall in love. Learn to ride a bicycle.  Learn how to make a soccer goal. Learn how to drive a car. Learn how to get themselves out of jail without Mom and Dad finding out.

Okay, I'm done.  Maybe next year Seattle Children's Hospital will acknowledge the month since they do such good work in helping out kids. Maybe the White House will light up like they do for Breast Cancer. Maybe Century Link and the Ferris Wheel will do the same. Maybe the Empire State Building will light up for something more than the US Open.  Maybe we will do enough education so people will begin to understand the high cost of this disease.  

Mother Earth has lit up in Hawaii.  She is going gold. 


1 comment:

Lisa Fusch Krause said...

Heart breaking and beautiful written -- I hope you don't mind that I shared this on Facebook. All the best to you and MEB.