Back at it!

It has been a while but here we are again! Fingers crossed and prayers sent! Let's see what's going on!

       

Back for routine labs and check up today!  After a few months filled with nose bleeds, tongue bleeds, chest/stomach pains, and even more healthy days than that, it will be good to confirm that Hannah's counts are still on track!   

So grateful for your continued support! We are excited about the caddies and gifts that are still being sent our way by those of you who are still keeping up with Hannah! Can't wait to pull Christmas caddies together for those kiddos who will be spending Christmas here instead of at home! Your gifts are priceless!

Your Great Name

Every fear has no place, at the sound of Your great name... The enemy, he has to leave at the sound of Your great name... All the weak find their strength, at the sound of Your great name... The sick are healed and the dead are raised, at the sound of Your great name... Jesus, worthy is the lamb that was slain for us.  You are high and lifted up.

Making Ripples...

Today Hannah had the incredible opportunity to share her story with a local news station KTVB!  The story is scheduled to air this Sunday at 10am!  For those of you who are not local, or will not be at home during that time, there will also be a link available on their website after it airs.  I will share that as soon as I have it!  It was a pretty exciting morning as Hannah was fitted with a mic and all eyes were on her!  We brought over 100 caddies to show and Hannah was even able to deliver some that day!  (For those of you still waiting on delivery of the contents you are donating, don't worry!  The rest of the caddies will be on hold until we receive all of the supplies.  They just wanted to have some exchanges for the story!)  Hannah was a rock star today!  She started of slow, but with each question her confidence grew!  I can't wait to see the story, I just know it is going to be incredible!  

Unexpectedly, both myself and one of our favorite child life specialists "Jen" were interviewed!  Definitely grateful for the opportunity, but as I sit here this afternoon thinking of what I "should have" said... I decided I would share a small portion with you.   

I don't remember the exact question Maggie O'Mara asked, but it was along the lines of "Are you proud of Hannah?"  or "So Hannah loves to give to others?"  Anyhow... I answered the best I could at the time, but if I could go back and answer it again this is what I would have said...

I am SO proud of Hannah.  As a matter of fact, I am proud beyond measure.  I look at my little girl who stands there and I see a giant.  She has absolutely no idea of the impact she has made on this world already.  In a world that carries so many challenges, Hannah is making a difference doing something that we all should strive to do... loving others. 

You see, Hannah has the kind of heart that the world works everyday to destroy.  In today's world, we are told that we should fight to be the best we can be... despite who we hurt along the way.  In today's world, we are told that we should love others... unless that person offends you, then you should never talk to them and do your best to make them pay for that offense.  In today's world, we are told that how successful you become is based on how you look... I'm not sure about you, but I know some pretty successful people who appear to be beautiful,  but become more ugly with every word spoken.  In today's world we are taught that life isn't easy... but when the storm hits, do you run to help others or do you try and save yourself in a half empty boat watching those around you drown?

Our world is selfish.  Plain and simple.  And it is teaching our kids to be selfish....  as a matter of fact, it is doing an amazing job teaching our kids to be selfish.  That is not OK.  Some may think it is not a big deal, but it is.  When you find you find your child acting "ugly,"  you need to fight for them as if you were fighting for their life.  The easiest way I have found to fight... is to teach.  You can tell them something and hope they listen, or you can show them...  they are much more likely to follow than to listen.

There is a guy who "lives" in the general area and carries a sign that says... "I'll just be honest, I need a beer."  I'm not asking you to go hand your paycheck over to him.  What I am asking is that you pay attention to your surroundings, that you walk with your eyes looking forward instead of at your feet.  The next time you listen to a co-workers story, I challenge you to search for clues!  If they mention a favorite candy, or tell you about something they have wanted for SO long...  maybe you have heard them talk about something that has been broken forever, yet it is a simple fix.  Maybe they have a favorite pen, or they mention an upcoming birthday... make a mental note... write it down... do whatever it takes to remember it.  Then the next time you are at the store, pick up that bag of M&M's they were craving and anonymously leave it on their desk...  maybe it's something bigger.  Maybe their "want" costs a whole $20.  Now I know what you are thinking here...  an anonymous $20 gift!  I work hard for my money!!!!  We all do, the point is not the money.

We have become so selfish that we are willing to spend $10 for a less than satisfying meal, yet the thought of spending a random $10 on someone that may never return the favor... well the very thought of that causes us to spend the money at McDonald's instead.  You see, McDonald's will do nothing but change your waist size... it's in... it's out... there went your $10... literally down the toilet.  On the flip side, do you think it takes more than that to change the world?  Sometimes...  but other times it takes less.  A lot of times changing the world isn't even a result of money but that of a smile, or a kind word.  Sometimes it's a small note that took a whole 30 seconds to write telling someone how much you appreciate them.

For some of you, you have read that previous paragraph and thought... "Pfffttt.... no problem.  I'll do that tomorrow."  Let me guess, the person who popped up in your mind is someone you like. I have a bigger challenge for you...

That person two cubicles down who does something irritating every minute of every day, or the one who always takes up two parking spaces, that other person who did wrong to you, the one that said something bad about you or spread a rumor... or that person who irritates you, for even being alive...  Spend some time to look and listen for their clues...  find out something good that you can do for them.  It can be something small, but just do it.  You may not change who they are, or change their attitude or hate....  but I guarantee they will never forget it.  I also guarantee you will be changed.  They are not worth anger or energy it takes to be angry at them.  So sneak a little something their way and watch as you have a better day or week at work!

I don't know the exact equation to changing the world, but I am confident that it doesn't take much.  We have become so wrapped up in the fact that "it's too hard" or "I don't have the money..." "I don't have the time..." "I am the one struggling here!  Someone needs to help me!..."  that we have forgotten the very basics that can make a difference that will make an impact so great, we will never know the true effect it had!  The very basic concepts to life have so much more value than any monetary gift.  A smile, a kind word... a helping hand....  I am telling you, step out of your comfort zone and do something for someone...
IT WILL MAKE A DIFFERENCE!  
   

Hannah has a heart that loves, Hannah has a heart that cares, Hannah has a heart that hurts....  Hannah has a heart that she trusts and believes in...  and as her Mom, I need to have a heart that does the same.  Hannah is an amazing little girl... and even though she is incredibly special, there is nothing more special about her that allows her to be this way.  It is in you too...  You just have to shut out the strangling voices of the world and listen to your heart.  This is definitely easier said than done.  There are some of you out there that have been hurt so bad, or actually believe that you could never do anything good for anyone else.  I guarantee you can.  There is someone out there that needs your good.  Your mind and heart work in a way that will touch someone who needs what only you have to offer.  It's there, you may have to work to find it, but it's there.

So take a chance...  try it... make some ripples...  make a difference...
You will be amazed at what will happen.  I guarantee it.

A Raging Success Doesn't Even Come Close!

To date Hannah's Dream 2 has raised over $2,000 in gifts/funds! It is almost UNBELIEVABLE! Your response has been amazing!

A couple of things coming up... On September 4th KTVB is going to feature Hannah and ALL of your caddies/donations in a story! So stay tuned for more details and when that story will air!

Second... Hannah's Dream 2 is compiling a team to participate in the FitOne 5K being held in Boise on Sept 21st!  We would love to have you join our team instead of doing it alone!

If you are interested in joining our team, you can join directly through this link and will be entered into a raffle for some amazing gifts! (see photo album):

 https://fundraising.active.com/fundraiser/HannahsDream2 

*Be sure that you are registering under “Hannah’s Dream 2” team by clicking the green button under the picture.  If you use the promo code: MAXWELL you can receive $7 off of your registration! (Prices will go up after September 1)

We never could have done any of this without any of you and you are all just as responsible for this incredible donation as we are! Thank you just isn't enough!

And the winners are...!

And the winners are....! Stay tuned! The winners have been chosen and the video is uploading as you read this! Will post the video ASAP! If you didn't win this time, stay tuned for another announcement and more ways to win!

Donations Still Coming in Strong!

The count is up to 59 tonight! 59 in less than 48hrs!! Another 23 caddies were donated by YOU today! We can hardly believe it!!!

Again we cannot thank you enough! Hannah is so excited and continues to dream about the day she will donate the caddies! Today the process even included puppies... Please note: Do not... I repeat... Do not send her any puppies! Regardless of how cute she is when she asks! 

Again, 

Thank You!

Please continue to share Hannah's Story!!http://youtu.be/NQCB2oEHSZ0

36!!

I don't even know how to begin to thank everyone who decided to stand next to us today to help Hannah on her way to reach her goal of 100+1 smiles! We are continuously grateful for those who placed orders, in addition to those who are helping to spread the news and share Hannah's dream!! The final count for the day was 36!!! We have already passed the 1/4 way mark to Hannah's goal!!

Thank you! Thank you! Thank you!

Again, you can see Hannah's story here:  http://youtu.be/NQCB2oEHSZ0

We are humbled by your generosity and kindness. Thank you for being a bright light in the lives of 36 children who are fighting the darkness on a daily basis with a life threatening illness! Can't wait to see their smiles!

Hannah's Dream to Make 100+1 Kids Smile! Help us by sharing Hannah's st...

Please join us in working towards Hannah's Dream 2 make 100+1 kids smile!  

Please help us share it with as many people as you know!

He's Got the Whole World in His Hands

Just wanted to apologize for the lack of updates!  We keep waiting for significant change to report or a new solid plan of action to let you know about... So far nothing!  Over the last month Hannah has had a handful of blood draws, some random complications (that were self resolved), intermittent bleeding & petechiae (which triggered the blood draws), and our most recent scare when she spiked a temp of 102 degrees out of the blue.  

With all of this being said, Hannah's body continues to fight with a strength that cannot be explained medically.  In almost all cases of patients with Evans Syndrome, any type of disrupt to the system will trigger the antibodies to become active and begin their destruction.  Every time this occurs, treatment has to begin in attempts to reverse the damage taking place.  Over the last month Hannah has had numerous insults to her system that have resulted in some very concerning physical symptoms, yet her body fights... And we fight... And our family and friends fight... And people whom we have never met fight... And Hannah... Well, Hannah continues to smile and love and live life every day with purpose while her platelets continue to rise and the antibodies on her red blood cells stay as dormant as a hibernating bear.  Hannah's doctor has begun to refer to Hannah as a "Hybrid" Evans patient.  She hangs out in this funky middle of nowhere place that none of the doctors have experienced with any of the other Evans patients they have treated.  Her platelets drop critically low and sometimes in a matter of hours they have increased anywhere in the 20K-40K range.  A medical mystery one might say, but like a great friend reminded us, this isn't the first time we have experienced a medical mystery/miracle.  4 years ago I had my bags packed and was heading to the hospital for a 10-12 week admission.  I was going to be on complete bed rest and 23hr/day monitoring, until the twins were born.  For 24weeks of my pregnancy they could not find the membrane that separated Aspen and Brooke.  This resulted in a 50% chance that they would both die before they were born.  The day of my admission, out of the blue, the membrane was there!  24weeks... almost 15 ultrasounds by multiple facilities and nothing.  24weeks and 4days it was there... as obvious as the nose on your face... A miracle.

Do we believe in miracles?? Without a doubt! No one could convince us otherwise!  So for all of you out there who are praying, thank you.  For all of you out there fighting in the exact moment of each and every single blood draw, thank you.  For a grandma who is willing to stay indefinitely, thank you.  For those of you sending gifts, thank you. For those of you who have covered work shifts or donated time or pto, thank you.  For those of you who welcome my calls and texts in the middle of the night, thank you. For those of you "on call" ready to come get or stay with the other three girls, thank you.  For those of you sending encouraging texts and emails, thank you (they are worth so much more than I can ever explain)... and for those of you doing all of the other things to support us, whatever it may be, thank you.  Please know that your thoughts and actions do not go unnoticed.  We love and appreciate all of you.  If it weren't for you, this would be an impossible situation. 

With all of that being said, today Hannah's platelets were at 67,000!  Still not normal, but definitely out of the critically low range that she had dropped to just a short week ago.  Today her doctor just shook his head and smiled when he heard the results.  There is just no medical explanation to her frequent highs and lows.  So on this rollercoaster we continue to ride... indefinitely.  It is not even almost possible to predict what tomorrow brings but that's ok because right now Hannah is ok.  There are still sleepless nights.  There are still moments in which it takes every bit of strength to keep it together.  There are still moments in which I don't keep it together (not even a little!).  But there are so many moments in which we have learned how to live life with "Evan" instead of letting him tell us how to live life.  It is in those moments that I know we are going to be ok, regardless of what the future holds.  We know a God who loves Hannah more than we ever could and we love her an indescribable amount.  We trust in Him and that trust results in a peace that surpasses all understanding.  

It's true what the childhood favorite song says... "He's got the whole world in his hands." Fortunately for us, that world includes Hannah.  We know she is in His hands and we are perfectly ok with that.  

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! 

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!  

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)

Hannah Update

Above you will see the bruises have begun again.  Not so severe that I am checking Hannah 3 times/night with the flashlight (yes I am guilty of doing that... multiple nights), but enough that we are taking notice.  The point of this pictures though, is not the bruise... it is the muscle above the bruise!  Check out those guns my 7 year old daughter has!  She claims monkey bars are her favorite... and obviously they are... maybe I should add a couple runs on the monkey bars to my morning routine! :) 

On to the dreaded blood draws....  we have tried everything to help this poor sweet girl deal with her anxiety associated with even the thought of an upcoming draw.  But really... can you blame her?  Contrary to my husbands belief that because I am a nurse I am part vampire and I really enjoy things like blood draws, I don't.  I tolerate them (I may be guilty of practicing on myself during a season of desperation when I was the lone IV therapist scheduled for 12 hrs a night at Mary Bridge Children's hospital in Washington...  but that's another story!) Anyways... back to the update.  As a last ditch effort Dr.Meeker asked if we wanted to try and give Hannah a small dose of a "relaxer" before her draws until she can desensitize from the anticipation of pain even if it doesn't occur.  Ok, let's give it a try.

Well guess what!  It worked!  Insert deep breath here....  This poor child has had multiple blood draws every week for a month now.  Even me... part nurse/part vampire could not handle that.  Even though the EMLA numbing cream has truly helped with the pain (she admits that she doesn't actually feel the needle)just the thought of knowing she will be poked with a needle over and over and over and over and over and over and over and over and over... and over and over and over and over and over... has proven to be too much.  Again, can you blame her?

Today I asked what she would like to try to help keep her calm during the lab draw...  what does she want?  For me to sing to her during it!  Seriously!  Obviously I would do anything to help her get through this but sing... really?  So sing I did as she buried her tear stained face in my arms.  The blood draw was over before I got to the chorus and my sweet girl didn't hyperventilate, she didn't vomit, and she didn't pass out.  Is it ok to take two deep breaths here?

Even though it was over in an instant, as I held Hannah I begged God to make this work.  To help Hannah to feel both his arms and my arms around her as she has yet another blood draw.  Another blood draw with no end in site.  I wish I could make a countdown and for every blood draw accomplished we could pull down a link until there were none left but I can't.  Hannah has an unmeasurable number of blood draws ahead of her and the very thought of that literally makes the depths of my insides ache.  Please remission.... where are you?

For now Hannah's platelets are 109,000.  High enough not to panic but not high enough to feel comfortable with the level they are at.  The trend appears to be following the same path as it did after her first infusion which would mean it is only a matter of days before her platelets bottom out again.  If that happens the next step is the bone marrow aspiration/biopsy.  If her platelets do hold in the 100,000 for a minimum of 3 more weeks we will go with the IVIG again and decide if we want to wait with the bone marrow or proceed now.  Our guts tell us now...  but that still doesn't make me feel better.  I'd rather the option be taken away because Hannah's platelets have returned to normal and are holding strong.  Please remission.... where are you?

I do look at the bright side of things and I am very aware that things could be worse but it doesn't make the ache in my heart, for the pain Hannah is experiencing, any less.  This situation simply sucks.  Plain and simple.  I know God has something bigger planned for our situation and I trust in that with all of my heart.  Something far greater than any of us can possibly see, but it still doesn't change the fact that the now sucks.  It really does.  

We also wait to hear from Hannah's doctor over the next couple of days to know when we go in again and when we might move forward with the bone marrow deal.  Will definitely keep you updated... 

Over and out for now.

Zoo Days

So we seriously can't get enough of the Zoo this year!  (Thank you again Aunt Ang, Uncle Jeff, and Jack for our season pass!)  Grandma took the girls the other day just to meet Iron Man!  They were seriously THRILLED!

And then today we met some friends to have a some fun with a picnic lunch and then zoo time afterwards!

Hannah is too funny.... put her with a group of kids younger than her and she turns into a teacher!  And they love it!  Listen to almost every command she gives lol!  Standing in a line, chasing the geese, ring around the rosie.... you name it and they did it!  Such gorgeous weather!!  Just can't get enough!

A Girl and Her Horse

Hannah has always loved horses and some of our friends and the pastor of our church own a bunch.  So we timed today's ride to be shortly after an IVIG infusion so that we could guarantee Hannah's platelets would be higher.  Plopped on a helmet and away we went!  I'll let the pictures speak for themselves... this little girl was in Heaven on Earth today!

Many sleepless nights and an ear infection later...

The age when everything is wrong and no one understands.  That is exactly where Taylor is right now.  She's knows enough to know what she wants but not enough English to communicate as fast as she wants us to understand!  That was until this morning... Taylor has not slept well the past couple of nights and as I sat on the couch like a zombie this morning Taylor sat down in my lap and tapped my shoulder saying.. "Mom! (tap.. tap.. tap..) Mom! (tap.. tap.. tap..)" I said "Yes Baby?" She looked at me and said "Owie" and then took her right pointer finger and pointed deep inside her right ear...  clear enough.  $10 and a copay later, we have a "severe" right ear infection and 10 days of Amoxicillin.  Thank God for antibiotics and communicating babies! :)

Untapped Strength

 "I need you to come back into the room so we can talk more about some additional results I just received from Hannah's bloodwork," said Dr.Meeker....  It was in that moment almost 3 weeks ago that I felt my heart skip a beat.  I knew the night before when I found the Petechiae rash on Hannah from head to toe that something was really wrong.  At the same time, Hannah has never been seriously sick and besides the strep throat the week before, there were no indications that anything was wrong.  We would wait and treat symptoms until Hannah's body realized the strep was gone and it no longer had to fight her healthy cells.  Simple... easy... textbook... We can handle this.  As I followed Dr.Meeker back into the room that day it was obvious this was no longer simple.  Dr.Meeker then began to explain antibodies and direct coombs.  He  headed in many directions with the results he was explaining.... left, right, up, down.... my head was spinning and as I responded to each new piece of information with "Ok... Ok... Ok..." I felt the lump in my throat grow larger as I looked at Hannah sitting so innocently on the table staring at me in attempt to read my body language to figure out what was going on.  At some point while I was attempting to keep up with everything being thrown at me I heard two words that I had never heard before.... Evans Syndrome.  It was in that moment that the picture began to change and I was no longer confident we could handle this.  In that moment I began to feel my heart race as my breathing quickened and I did everything possible to fight back the tears.  This can't be happening....           

Fast forward to today...  Almost 3 weeks from the day described above.  3 weeks of uncertainty, 3 weeks of blood draws, appointments, tears, prayers, exhaustion, faith, fear, anger, certainty, stress, pain, battle...  3 weeks to realize the diagnosis wasn't a fluke, 3 weeks to try and accept winning a lottery that approximately only 500 in the US have won.  3 weeks to realize that regardless of the mountains that we face, you are an amazing little girl.    

 My prayer today is not only for your complete healing but it is also that I will have the strength to keep up with your Faith.  You have taken lemons and have made lemon-aid and I love you for that!

Today Hannah's platelets were exactly 10,000 (a definite raise from last Wed-Fri but only impressive enough that bruises aren't spontaneously appearing).  Our insurance has agreed that if her platelets are less than 10,000 they will cover her IVIG without pre-authorization!  That is AMAZING news and not typical of Blue Cross!  John and I spent a significant time today speaking with Dr.Meeker in attempt to come up with a fluid plan for Hannah's treatment.  To make an extremely long story short, after today's infusion we will watch to see how long her platelets hold.  If she only makes it two weeks again then the next step will be to have a bone marrow aspiration/biopsy and consider starting Hannah on 4 day bursts of steroids when her counts are low.  If her platelets hold closer to a month than we will continue with IVIG infusions and wait for the bone marrow aspiration/biopsy.  We remain blessed that the antibodies on Hannah's red blood cells remain dormant and we are only fighting her platelets right now.  Again if they are triggered it will change everything.   

This year I will celebrate being a nurse for 11 years.  Our pastor's wife continuously reminds me that God designed me to be the perfect mother for Hannah and today that couldn't be more true.  I watched as they hung Hannah's IVIG and remember noticing the bottle held a significant amount more than was administered in the hospital the first time...  as I helped Hannah into the bathroom, the nurse in me wanted a closer look at all of the paper work hanging on her IV pole so I snapped a quick photo with my phone to look at later and for blogging purposes lol!  As we left the bathroom another nurse had commented on how large the bottle was hanging on Hannah's IV pole.  During all of this little alarms were going off in my head but not loud enough for me to do anything.  As we sat back down Hannah looked a little funny and I asked if she was ok.  She said she was dizzy and felt like the room was spinning.  Again an alarm but I excused it away as we had just gone on a walk and the side effects during administration can be pretty strong at times.  As I began to look through the pictures I had taken that day I came back to the picture I snapped of the IVIG rate sheet.

IMMEDIATELY I noticed they had dosed the medication and was running it at a rate for someone who is 61.8 kg....  Hannah is not 61.8 kg, she is 61.8 lbs!!!!!  I immediately jumped up and checked the sheet that was hanging on the pole to ensure they hadn't switched it since I took the picture and they had not!  I calmly but urgently said "This looks like they have dosed Hannah at 61.8 kg, and she is not 61.8 kg... she is only 61.8 lbs!!"  (61.8 kg is equivalent to 136 lbs!)  Thank God the nurse did not question me and immediately stopped the infusion.  Pharmacy arrived at the bedside immediately and before we knew it, there were a lot more people in the room.  Fortunately I had caught it in time and because IVIG has to start of slow and they increase the rate every 30 minutes Hannah had only received an overdose for 15 minutes.  I am so thankful that even though I was Mom at the time, the nurse inside never shut off.  If I weren't there myself I would say it was almost unbelievable.  Approximately 8 people missed the error and it was Mom who caught it... the Mom who was created for you Hannah Grace!

After everything had settled we began to explore our surroundings... For a Mom it's emotionally difficult to be in "The Chemo Suites."  As a Mom you carry the weight of the situation surrounding you.  As I looked around I realized there was definitely reasons to be thankful today.  Although "Evan" is our giant right now, there are so many other giants out there that are so much bigger.  The nurses and doctors continuously amaze me...  they are inspiring in their compassion for the patients and families who come in for treatments.  It takes a special nurse to work in Pediatric hematology/oncology.  So grateful that this doesn't have to be a miserable experience.

 They are in the process of a major renovation as they improve the suites and so they have allowed the kiddos to draw/color on the temporary walls...  Hannah LOVED this!  

 There are special areas that the patients can go outside and so Hannah and I were able to enjoy some of the phenomenal weather today!

 Hannah is also a Connect Four pro... :)  So much fun and I honestly had to work to keep her from winning every time...  No need for any freebie moves here!

  And after an extremely long day we finally headed home to a house full of sisters, a Dad, and a Grandma all awaiting hugs and snuggles from us.  Fingers crossed to make it a week before the next blood draw and until then we will make the most of our days that we can be confident Hannah's numbers have jumped!

After arriving home, even though we had been together for 8 straight hours, my dear sweet girl continued to snuggle me.  She had a pretty severe headache from the IVIG and a low grade temp.  Although I wish we had another reason for snuggles I'll take advantage of them while I can.  I can't even almost remember the last time Hannah has fallen asleep in my lap.

While we sat in the chemo suites today, so Hannah could receive her IVIG, this sweet girl reminded me that regardless of what we are facing she has a heart to love others that is greater than most.  By the end of the day both of us were completely exhausted from the day.  In that moment Hannah began to ask if I thought she would make friends with the other kids receiving their chemotherapy.  Kids who had lost their hair and were vomiting into their blue bags.  Kids who were experiencing what most would consider to be their darkest hour.  As we sat there for 8 hours today Hannah wasn't thinking about what has happened over the last 3 weeks or even about what was to come.  As each hour passed Hannah began to shine brighter and before we knew it there were kids peeking around corners and hanging over the side of their bed to listen to and watch what Hannah was doing.  Oh my precious sweet girl...  I looked at you today and saw an inspiring strength that is beyond any strength that I have ever known.  Your love and compassion for others has taken this moment to look past the negatives and see the many reasons that we don't need to be afraid.  You are so strong Hannah Grace Daurer and your strength is higher than any mountains that we might face.