Thursday, June 05, 2014

Childhood Cancer...... Rare? Depends on your perspective.

Childhood cancer is seen as a rare disease.  Lots of money goes to things like Breast Cancer, Lung Cancer and Colon Cancer. 

So these are the facts:

 Each year around 13,500 children are diagnosed with cancer in the US, that’s more than a classroom of kids a day.
 35,000 children are currently in treatment for cancer.
 Some 25% of all kids who are diagnosed with cancer die.
  • Some pediatric brain tumors, such as brain stem gliomas and pontine gliomas, are terminal upon diagnosis and no new protocols have been developed in 30 years.
  • Many pediatric cancers, including neuroblastoma and disseminated medulloblastoma, are terminal upon progression or recurrence.
 More children die of cancer every year than adults died in 9/11.
 Cancer kills more children than AIDs, asthma, diabetes, cystic fibrosis and congenital anomalies combined.
 The average age of death for a child with cancer is 8, causing a child to lose 69 years of expected life.
 The death of a child is one of the most traumatic events a family might face.
  • Families who have lost children are often financially and emotionally depleted.
This is Cancer World.  Now given there are over 300,000 million people in this world, Cancer is Rare.

When you are in Cancer World, none of it seems rare... It is our lives.  I am not sure why they always report the occurrence of childhood cancer as if it is surprising.  Those of us here it is not rare. 

Each parent of child with Neuroblastoma, knows a dozen kids with the same "Rare  form of cancer.  For a child to die of OsteoSarcoma, shish, happens all the time.  For a child to fail at a Bone Marrow Transplant, so so common.

It is all about perspective.  It just irks the Cancer Mom's when the words

Rare
seldom,
almost never happens


are bandied about our feathers ruffle and our feelings are hurt.  We are so so sensitive because all the kids we know have cancer.  It is not a rare event. It is our everyday life. 

When you enter Cancer World you are immediately

 put on a floor with kids that all have the same thing disease.  As your former live is taken over by being in Cancer World, you make more and more connections with families with cancer.  If you take stock of your life and your connections, few begin to be Cancer Free families. 

Because your child had cancer, everyone with cancer in their life begins to share.  You learn all about their journeys.  It is a way to connect and to be supportive. Sort of like when you are first pregnant and most women have a birth story to share.   Sharing and connecting is in our very beings. 

Childhood Cancer is rare when taken from the view of the entire population of the United States.  It is not rare on the 7th and 8th floor of Seattle Children's Hospital.  

It is the most financially and emotionally devastating form of cancer.  You think it is hard to parent a Teenager, try doing so with one that has been through treatment or diagnosed during that time.  We all complain we did not receive a manual for babies. We certainly don't have a manual for helping a child die and for burying a son or daughter. 

Lots of people are upset by the book "The Fault is in our Stars" and another one called, "I Wish My Child had Cancer".  

It is all about perspective.  How are we looking at things?  Which part of the animal is the blind person touching?   I get upset when I think someone should know better when they speak.  Dr. Charles Hemenway, an oncologist was one of them.  He really upset lots of families belittling their pain and struggles. He then explained himself as being a kind caring oncologist but not a lot of people bought his explanation.

He is one that should know better. 

Again, perspective.  Where are we seeing this story unfold? 





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