Tuesday, May 28, 2013

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.

Monday, May 27, 2013

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!

Friday, May 24, 2013

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!

Wednesday, May 22, 2013

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! :)

Tuesday, May 21, 2013

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.

Update on its way!

Thursday, May 16, 2013

A Vast Army

Hannah's platelets have become critically low again... ugh.  The problem we are facing now is the insurance company.  On Monday our doctor began the process of having Hannah's next transfusion of IVIG preauthorized (her doctor knew by the trend, earlier in the week, her platelets were likely to bottom out by the end of this week) but the coverage still hasn't come through.  To obtain 1 dose of IVIG it takes over 1,000 blood donors.... it's not cheap and so now we wait.
I can't even begin to describe how frustrating it is to know that your child can't receive the treatment an expert is recommending until someone behind a desk with no medical experience finishes filling out all of the right papers.  Unbelievable.  

Now we pray for Hannah's safety over the weekend as any injury, especially head, could cause internal bleeding that would open the door to a place we just don't want to go.
Seriously. So. Frustrating.

"We have no power to face this vast army that is attacking us.  
We do not know what to do, but our eyes are on You." 
Chronicles 20:12 verse 2

Monday, May 13, 2013

Hannah Updates

If you're here that means that you're on our side and ready to fight with us for this amazing little girl!  I have some catching up to do and a little backtracking but the blog will be up and running again with everything from our daily happenings to the latest news on Hannah.  We appreciate all of your thoughts and prayers and are happy you are here to support us through both our ups and our downs!

Decreasing platelets... Hannah update.

We have enjoyed the last week and Hannah has been feeling really good!  On Saturday Hannah had made some complaints about her throat and had started showing signs of a beginning petechiae rash/bruising inside her mouth.  We spoke to the on call physician on Saturday who ordered blood work and it showed that her platelets had already begun dropping and were down to 51,000 to 114,000 on Monday.  We were sent home with instructions to watch her close and follow up at her scheduled appointment today.  At Hannah's appointment today we found that her platelets continued to drop (which is typical with Evan's Syndrome) and are now down to 26,000.  With this trend we expect that Hannah's platelets will be in the single digits and she will have to have a second transfusion by the end of the week.

Overall Hannah has continued to feel well but the frequent blood draws have proven to be more than she can handle at 7yrs old.  Even though Evan's Syndrome is obviously a major challenge, the blood draws are the worst part.  Hannah is an incredibly strong girl and it is difficult to watch her have to go through this knowing that frequent blood draws are now the reality of her future.  For now Hannah is home again as her doctor wants to wait until she is symptomatic before treating her again so that her veins can have some time to rest and heal.  
Some encouraging news we received today is that the tests they sent out when Hannah was originally diagnosed came back and showed that Hannah does NOT have ALPS syndrome in addition to Evan's Syndrome as they had suspected.  Hannah's doctor said  her Evan's has proven to be atypical at this point and he remains hopeful that once we get through this initial stretch her treatment plan will continue to be more of a maintenance plan that a fighting plan.  That would obviously be our preference as well.  The antibodies on her red blood cells continue to remain dormant and this is great news!  If they were to activate it would complicate this puzzle significantly.
The next steps for now include more blood work and tests as they need to rule out some additional auto immune disorders/diseases as an underlying cause to her Evan's.  We will also prepare for her next transfusion and make the most out of good days at home!  With the frequent updates and possibility of a quick status change we are going to transfer our updates from email to the blog.  I plan on spending this week catching up on a few things from the past as well as since Hannah's diagnosis.  The blog will continue to have our family fun but the updates will be real time and will be there as well if you would like to continue to follow what's going on.  If for some reason you cannot access the blog or only have access to email and want to continue to receive updates please let us know.

We appreciate everyone's continued thoughts and prayers... 

Monday, May 06, 2013

What did you say? Who's Evan?

Last Wednesday we had a scare with Hannah.  When she came  home from school we found a petechiae rash from head to toe (a rash where the blood comes to the surface of the skin).  We took her in for evaluation immediately to find out her platelets were down to 2,000.  Platelets are what help your blood clot and the normal minimum level for anyone is 150,000.  She was admitted to the hospital and received an infusion to help increase her platelets.  While it worked some, it was not enough to bring her counts back to normal.  We have had a roller coaster weekend full of emotions and unknowns.  Until today we did not have any solid answers so we are only posting the news now as we have something solid to stand on.

We returned to the pediatric hematologist/ongologist for a follow up this morning with Hannah.  They have diagnosed her with something called "Evans Syndrome."  Essentially her body has formed antibodies against both her platelets and red blood cells.  Normally antibodies are formed to kill viruses or foreign things in our bodies.  In Hannah's case, the antibodies have become confused and have turned against the normal healthy stuff in her body.  There are times that this can can be temporary with platelets in something called "ITP" but in Hannah's case after initial assessment, they found the antibodies on her red blood cells as well. In finding the antibodies on both her platelets and red blood cells they are confident it is not ITP but is indeed Evans Syndrome.  Today they sent out additional blood work as there is a secondary diagnosis that is pending due to some physical findings on Hannah's body.  We will have those results in 2 weeks and will know more then.  So far the antibodies were only activated on her platelets and not her red blood cells, this is good because that means the antibodies on her red blood cells remain dormant at this time.

On Wednesday for an unknown reason the antibodies on Hannah's platelets were activated which caused her platelets to be destroyed.  With initial blood work, Hannah's platelets were down to 2,000 (Normal is 150,000+).  After receiving the transfusion in the hospital on Friday her platelets had risen to 20,000 which was encouraging.  One of the biggest problems with Evans syndrome is that the majority of patients do not respond to treatment to increase cells.  In Hannah's case although she did not have a dramatic increase, she had increase and the doctor was definitely encouraged.  When we arrived today, Hannah's platelets had continued to increase and are currently at 114,000.  Again, still not normal but what this tells us is that the infusion worked enough to allow her body to reproduce some platelets. 

Essentially the doctor said with Evans syndrome, the infusions are like throwing a wet blanket on the fire trying to stop it from spreading.  What we need to figure out with Hannah is how long the wet blanket (or transfusions) will hold off the fire (or antibodies) and allow her numbers to remain at the highest possible level.  While "the wet blanket" is present Hannah's body will continue to destroy cells and what we will find out over the next 2-3 weeks is how quickly that will happen.  Obviously the slower the better and the longer we can go between infusions.
Again, we are in the process of figuring this all out.  Over the next 2-3 weeks we hope to have a better picture of what "normal" will look like for us as we watch to see how long Hannah's body responds to the treatment.  For now we wait and are careful to look for signs that Hannah's platelets are decreasing again or that the antibodies against her red blood cells have activated.
As you can see Hannah has remained your typical 7 year old!  Her bed was never lower than 4ft off the ground!  Good thing we were in a children's hospital...  they tend to understand things like this better than your everyday nurse!
We are so blessed to be surrounded by those who love us even though we are so far away from family...  While Grandma Pat was flying in from Chicago (I called to give her an update and she told me she was on a plane lol!) some of our great friends had Aspen and Brooke over to "swim."  I think they were disappointed to come home!  Actually.....  I'm confident they were disappointed! :)  
IVIG....  A blood product that is the "wet blanket."  It takes over 1,000 blood donors to make... wow!
8 months ago when we moved to Boise we had no idea what our future held.  Living 2 miles from St. Lukes Children's Hospital is definitely a blessing in disguise.  With 4 little ones and family states away, the reality of daily or weekly blood draws/evaluations will be a lot easier with a 5 minute drive versus 40 minutes....  

With all of this we are grateful for any willing prayers and will keep you updated and we know more!

"We walk by Faith, not by sight." 2 Corinthians 5:7