Wednesday, July 24, 2013

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.