Wednesday, June 19, 2013

Quick update!

Hannah's platelets are at 30,000 today, a drop but still holding in the same range for almost 3 weeks now!  The next 2 weeks will be crucial as the effects of her last IVIG infusion will be completely gone and her platelets will no longer have any protection against the antibodies her body is producing (Studies have shown the effects or the protection IVIG provides lasts anywhere from 4-6 weeks).  Hannah's bone marrow, biopsy, and all genetic testing came back negative!!!! While this still doesn't provide any answers I am continually thankful that we don't have any other "Giants" to battle.  ITP and Evans is beyond enough for me!  If Hannah's platelets continue to hold and there are no new signs of bruising/petechiae, she doesn't have to have a draw for another 2 weeks!  We'll take it! 

Monday, June 10, 2013

Casting Away!

 Today Hannah was scheduled for her bone marrow biopsy/aspiration.  She also had her typical blood work and an IV start that both went really well!  Originally the plan was to infuse Hannah with platelets, have the biopsy, and then follow up with IVIG to try and save some of the platelets infused.  When the results came back her platelets were at 27,000 so Dr.Meeker said we would only have to do the bone marrow biopsy/aspiration!  Over the weekend Hannah was bruising with the slightest touch and by Saturday had petechiae all over her lower legs and back.  Today when Dr.Meeker saw Hannah he was shocked that her platelets were as high as they were... he said by appearance it looks as though her platelets were significantly lower over the weekend and have increased on their own!  Again we are far from normal but the fact that some of her platelets are surviving the attack of the antibodies is encouraging!
 Little Miss.Smiles always brightens the waiting room!  At some point a little boy snuck over and was watching Hannah play on her iPad from behind her chair... it was too cute and when she stood up he ran away really fast smiling. :)
 After her bloodwork and IV, we headed over to the PICU where Hannah's doctor, a PICU doctor, a nurse, a respiratory therapist, and a lab tech were all awaiting our arrival.  It was a little intimidating for Hannah when she first came in but everyone was SO incredible and after setting up her bed with her favorite blanket and placing an order for food to be ready when she awoke Hannah was feeling much more comfortable.  Hannah received conscious sedation for the procedure and it was AMAZING!  As the set up was complete and she could tell everything was going to start she began to get upset.  Approximately 10 seconds later she was sound asleep!  They welcomed John and I both to stay so we just sat back and watched. 
 You can see Dr.Meeker who is the physician sitting down performing the biopsy and aspiration.  It was a fairly quick procedure and within minutes they were done!
 Afterwards the nurse worked to get Hannah perfectly comfortable...
 And she continued to sleep.... for almost an hour!  Obviously she needed the rest!  :)
 Then out of the blue it was if someone snapped their fingers and Hannah sat right up, wide awake, and ready for food!
 Hannah ate some really yummy waffles and pineapple and then it was time to go home!
 Not sad to be leaving this place!
 And the final results.  So far no pain or tenderness and Dr.Meeker said at her age she probably won't experience much discomfort.  Rest for 24ish hours and then back to her normal activities.  She's already planning to swim tomorrow.... we'll see!
And what better way than to recover in Mom and Dad's bed like a queen.  All 3 sisters checking in on her and helping out where they can.  Such a brave and amazing little girl with family and friends who love her from all over the country!  So grateful for all of your thoughts and prayers today!

For now we wait for results.  Some will arrive in a couple of days and others in a couple of weeks.  Dr.Meeker wants to continue to see how her body responds on it's own and for how long without any medical intervention (obviously until it's necessary).  So we will try and make it until next Wednesday until the next set of labs and appointment to see him and discuss the next steps to take!  

Friday, June 07, 2013

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)