Our
Journey:
Avalon's Army of Angels
September 1, 2008 The beginning of Childhood Cancer Awareness Month
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September is national Childhood Cancer Awareness Month. Unless you're related to us, or
have been recently clubbed over the head by me, I'm pretty sure you had no idea about
that. I certainly didn't, before we found ourselves in this nightmare. Now, I feel its my DUTY
to those that have gone before us, those we fight with, and those that will undoubtedly
follow...to let the world know about Childhood Cancer. Our numbers may be dramatically
smaller than adult cancers, but our kids matter. Our kids fight for their lives before they
ever really get a chance to live them. And all too often, our kids don't get the chance to
finish those lives...they are robbed of them.
During this month, you might be lucky enough to see a blurb on TV, or maybe even a
mention in a paper somewhere. Usually, those tiny little mentions talk about the improved
cure rates we have - particularly for ALL, where cure rates have increased dramatically in
the last 30 years. Yes, I'm thrilled about the higher percentages. But the fact is, those
numbers don't mean squat to the parents in the fight. We all know, we can land on either
side of the equation ~ at any time. We live each day, knowing that our child has already
lost one giant lottery - the other one is simply waiting in the wings. So, when you hear such
high cure rates for some of these kids, remember - would you want to take that risk with
your child? Going from 30% cure to a 50% cure rate for AML (acute mylogenic leukemia)
sounds great, until you realize that half of the parents who hear AML, will have to say
goodbye to their children. Its that half I will fight for the rest of my days. Its that half, I will
continue to remind people about. Its that half, that haunt me..........
Below is a poem that I found on another cancer child's website. Funny enough, the mother
who posted it, had borrowed my words from the website of a friend of mine. As I went to her
site to thank her for sharing my thoughts - I found this beautiful poem. It really does sum up
how I feel. I hope it helps you see things through our eyes...
I HOPE
poem found on the website of Julia Nesbitt, a fellow ALL warrior www.caringbridge.org/visit/julianesbitt
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I HOPE...
I hope you never have to hear the words, 'Your child has cancer.'
I hope you never have to hear, 'The prognosis is not good.'
I hope you never have to prepare your child to undergo radiation or chemotherapy, have
a port surgically inserted into their chest, be connected to IV poles.
I hope you never have your child look at you with fear in their eyes and say, 'Don't worry
Mommy, everything will be okay.'
I hope you never have to hold your child as they vomit green bile.
I hope you never have to feed them ice chips for lunch.
I hope you never have to watch the 'cure' you pray for slowly take away their identity, as
they
lose their hair,
become skeletal,
swell up from steroids,
develop severe acne,
become barely or unable to walk or move,
and look at you with hope in their eyes and say,
'It's going to be okay, Mommy.'
I hope that you never have to stay in the hospital for weeks, months, or years at a time,
where there is no privacy, sleeping on a slab, with your face to the wall, where you cry in
muffled silence.
I hope you never have to see a mother, alone, huddled, in a dark hospital
corridor...crying quietly, after just being told, 'There is nothing more we can do.'
I hope you never have to watch a family wander aimlessly, minutes after their child's body
has been removed.
I hope you never have to use every bit of energy you have left, with all of this going on
around you to remain positive, and the feelings of guilt, sorrow, hope and fear,
overwhelm you.
I hope you never have to see a child's head bolted to the table as they receive radiation.
I hope you never have to take your child home (grateful but so afraid) in a wheelchair
because the chemo and radiation has damaged their muscles, 35 pounds lighter, pale,
bald, and scarred.
And they look at you with faith in their eyes and say, 'It's going to be okay Mommy.'
I hope you never have to face the few friends that have stuck beside you and hear them
say, 'Thank God that is over with,'...because you know it never will be.
Your life becomes a whirl of doctors, blood tests and MRI's and you try to get your life
back to 'normal'.
While living in mind-numbing fear that any one of those tests could result in hearing the
dreaded words...
'The cancer has returned' or 'The tumor is growing.'
And your friends become even fewer.
I hope you never have to experience any of these things...Because...only then...
Will you understand...
(author unknown)