Wednesday, February 26, 2014

Things You Should Know About Tuesdays: Neuroblastoma Kids

Imagine being 2-3 years old (most occur in children under the age of 2).  Having a condition only 4 per million children have.  A condition that causes tumors to grow along the nervous system outside of the brain.

Picture having test after test run, in dark and scary rooms with loud and frightening machines.
It seems that every grown-up you see want to hurt you with a needle to get blood.

Then you sit in a big chair in front of a big desk, while your mom and dad cry.
And then suddenly more hospital visits.  You start to recognize that you are driving to a place that scares you and you begin to cry even before you arrive.
And suddenly there is a weird thing on your chest. But they seem to be able to get blood out of it so no more horrible pokes.


And then then the nurses start giving you "medicine" to make you "feel better".
But you don't feel better.  You feel tired and sick to your stomach.
You hurt and you don't know why  
You have to wear a mask everywhere you go and you can't do the things you used to be able to do.
You feel like you never get to be at home anymore.

You can't sleep through the night anymore, because either you wake up sick or someone wakes you up to "get blood", or "take vitals" whatever that means. 


Its not all bad I suppose,  You get ANY food you like cause all the grown ups seem to be very worried about how much you eat.  You get to watch lots of tv.  You get to meet famous people and have lots of grownups tell you how cute you are.  You get to see clowns and dogs, make music and be the nurse's helper.

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