Monday, January 21, 2013

My Rebbecca is on the East Coast

So Pam S. a parent from Seattle Children's thought I was talking about another Rebbecca being treated at Seattle Children's.  Seattle's Rebbecca is 18, had a transplant and then disappeared from the floor to the ICU. Kids disappear.   

It is another example of a subtle problem we have while in Cancer World.  The hospital won't admit there are ANY children at the hospital because that would violate HIPPA.  We live on the floor and many at Ronald McDonald House, chat in the clinic, Facebook each other and have a myriad of ways we ferret out information about what is going on with "our kids".  

I can remember coming out of Mary-E's room one night and there were a million people in the room next door. Doctors and Nurses and portable machines.  There was huge amounts of frantic activity.  The next time I was out of the room no one was around.  The room was empty and it looked like a war zone.  No nurses were around and it was just creepy. 

Kids just disappear and no one wants to talk about it. How sad is that.  Some one's child is critically ill or has died and we pretend nothing has happened.  Trying to "protect" cancer parents from what they know is a possibility from the moment we ask about outcomes may need to be reconsidered. 

The silence scares us more and it removes a very important support system from the family. 

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