It's a New Day Dawning

 I've sat here all week wondering why I was dreading the update this week.  I have no good answer besides the weight of the constant disappointment is just getting to me.  I'd like to say that I'm strong enough to face all of this with a fighting mentality every morning, but I'm just not.  Evans is a deceptive disease and over time I've learned that the hardest thing about being deceived is that you don't realize it is happening until it has already occurred.  

Have you ever watched The Price is Right???  (If you haven't I'm sure you can google or youtube a clip and will understand very quickly what I am talking about!) Anyways...   

If you've ever watched the Price is Right, they show the audience as they are going crazy... absolutely nuts in hopes that their name is going to get called so they can head up and play the game.  These people aren't just clapping or raising their hands... They are screaming!  They are jumping up and down!  Waving their arms!  Almost everyone is wearing a shirt that has some kind of catchy phrase or ridiculous plea such as "Pick me!  It's my Grandma's-Uncle's-Cousin's Birthday!!!"  In that moment someone's name is called and although the camera's show that the rest of the audience appear to be excited for the chosen one, I know better.  Every single person in that room, although they may appear happy, are wishing their name was called instead...  And then the next round or segment comes up and the cycle starts all over again...  Crazy excitement followed by disappointment... crazy excitement followed by disappointment... 

and it goes on until the show is over. 

Well that's how I feel about Hannah's platelets and this deceptive disease.  I feel like I have been in the audience of the Price is Right since her diagnosis.  Hannah gets a dose of IVIG and her platelets bounce back...  I'm jumping! I'm screaming!  I'm waving my arms!  "Maybe this will be the time her platelets hold! Pick me!  Pick me!"  And as each day passes and I notice more and more bruises I feel the same disappointment that comes after name after name after name is called and none of them were hers.  The only problem with our disappointment versus theirs...  it's not just a new blender or car we miss out on.  

If only it were that simple...   

 On Monday Hannah's platelets were down to 36,000.  I tried to be positive after her appointment and said things like "at least they're not 2,000!"  (As a matter of fact I know there are a few of you reading this that got that exact text!)  But no matter how much I tried to convince myself to stay positive it was obvious the trend was heading in the same exact direction as the last time.  I just can't describe the ache inside of me as the results are given to us and the number simply interprets to "Get ready for another blood draw."  I know that we are not in this alone but the helplessness that comes with the nature of this disease is just so draining and exhausting.  I just keep wishing there was an easier way but there isn't.  Even if this disease got enough recognition to receive the funding for research, any fixes or cures they could come up with couldn't happen before Monday and on Monday we cycle back to the "Pick Me" stage...  It is just so hard.

So this coming up Monday Hannah is scheduled for her bone marrow biopsy.  The purpose of the biopsy is to rule out any other diagnosis in addition to the Evans such as leukemia.  If Hannah's bone marrow doesn't show up with anything else then we will start looking for another line of treatment in hope's to keep Hannah's platelets at a safe level for a longer amount of time.  Maybe we need ridiculous shirts with a catchy phrase to convince Hannah's body to stop destroying her platelets....  

Hannah I am so sorry you have to go through this.    

I will not be dismayed, for You are my God.  

You will strengthen me and help me, and uphold me with Your righteous right Hand. 

(based on Isaiah 41:10)