Lies, lies and more lies…..

As a cancer mom, you find that you are given false hope from a very early stage in the game.  Mine happened when you would read and learn of the magical “5 year mark”.  You see, the 5 year mark is healthcare’s and Big Pharma’s way of making you feel like….you did it!  You made it.  You beat the monster.  Because all literature and research points to that magical moment that you are free of disease at five years.  When in reality, it is just a measuring tool of how long statistics should be taken for those faced with xyz disease.  I mean, you gotta have a breaking point.

And that’s when I met mine.  Breaking point, that is.  Just like statistics of survival mean nothing to me….the 5 year mark does just the same.  I mean, Zayla was “lucky” and went past the 5 year mark with no real problems.  Until.  Until that hot day in July, 2013 that we discovered the monster returned.  Returned in a whole new cancer.  Where are the statistics for that?!?! Why is it that I am seeing more and more kids relapsing or having secondary cancers?!?! Where does all this play in, you say?  Let me break it down as simply as I can.  My daughter (and countless others) are “outlyers” in the statistics for childhood cancer.  She made it to the 5 year mark, so she is in the statistics that are showing what great progress we are making in the world of childhood cancer.  Nobody goes back and alters those 85%+ cancer cure rates once you have passed the 5 year mark.  That’s the “real numbers”, that no one wants to talk about (except us crazy cancer moms/dads who have had enough).  And lest we get into the dirty secrets of treatment side effects.  That is a whole other topic that would shock most of America.

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So when you get that warm, rosy feeling that we are actually doing something about childhood cancer…we are making progress…think again.  This weekend, a beloved cancer fighting family from North Carolina, got the devastating news that their daughter has brain cancer.  She went through the same treatment as Zayla, and yet here she is over 5 years later with a new monster.  Cancer treatment should not GIVE you cancer.  Period.

Yesterday was a wonderful day for my dearest Maddie to get dolled up for Prom.  Ms. Maddie has had to endure A LOT over the past 10 years.  We always say how hard cancer is, but many times we forget the siblings who have to endure so much as well.  I mean let’s face it….living with a medically fragile child is not easy.  The world often revolves around what the cancer kid needs or feels.  Maddie handles this very well….but I know it bothers her.  I can’t offer her more….I am lucky I can give what I have now.  I am often emotionally spent.  And the guilt.  Don’t think that will ever go away either.  So here’s a photo of Ms Maddie and her date Tanner Regez….she is so pretty.  IMG_6707IMG_6766and a picture of her with Allison Mendell…and of course the little sisters.

Today has been a fairly lazy day.  Lots of studying for me.  Ms. Zay has been in the kitchen all day….baking.  She’s gonna be a chef when she gets older, ya know.  Does my heart good to see her doing her “passion”.

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In the next couple days I will be posting something that has me crazy.  And angry.  And disheartened.  I need time to organize my thoughts and get my information gathered.  Stay tuned….

Searching for a Forever Cure

Peace~

 

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