Saturday, January 31, 2015

Diagnosis Hope vs Treatment Reality

Someone mentioned to me that their grandchild had been diagnosed with osteo sacoma.  They were obviously upset and the depth of their confusion and pain and fear were very apparent.  It is a very scary thing. Hearing those words sticks with you for the rest of your life.  It is a "Where were you when Kennedy was Shot" question.  (Yes, I am that old.)  The child will be in treatment for 9 months.  The family has arranged to be home for a year because they are teachers and their fellow teachers have given them sick time from a pool.  There is a sister. 

The grandmother is trying to figure out what to do. How could this happen?  Does it matter if the child is 8? This is so rare how can they cure it? Do the doctors know what they are doing?

As I sit here this morning watching the birds gather sustenance from the bird feeder buffet, I just sigh.  Katie Elliot will be buried in a week.  I met her family when they were starting treatment.  Three years later, treatment is over.  She too had Osteo.  She did not make it out alive. 

When you first hear those words, the thing that gives you comfort is the "plan" or the "road map".  There it is, the PLAN.  Yes this is a lousy diagnosis but we have a PLAN.  Something to look at, something to put on a calendar. An end point is sitting there for all to see.  You can plan your live around the PLAN.

I still have some of the calendars and all the Road Maps.  I look a them when I am sorting through things.  I still look and wonder at the amount of hope and optimism contained on those pages.  The PLAN.  

What you soon realize is that the PLAN is kind of a guide.  You know where you want to go and you head West.  Sort of like being on the top of the Continental Divide and heading to the ocean.  There are million ways to get there and the ocean is a vast. But with enough effort and enough perseverance and some luck, you do arrive.

 The journey is not easy. The path is not straight. There are losses of untold magnitude.  Some are secret losses you don't discover for many many years.  It is a journey some have to make more than once.  But it is doable. 

As the family begins on their journey, my first words of advice would be to hang on to all the hope they can.  They will need it as they make their journey and have to face the reality of the bumps on they way.  Second bit, be ready for a wild ride.  Third, remember you are not alone. 




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