Only As Much As you Can Stand.

Sitting at Starbucks.  Child is sleeping upstairs and the nurses are waiting for Platelets.  (don't even ask)

I stumbled into the elevator and a panicked woman was there.  She had two badges on, one that said caregiver, the other was from the ED, (ER to most).  She was dazed, confused and worried she was going the wrong direction.  I guided her to the real Starbucks on the first floor of the hospital.  I asked why she was here and her story is like so many:  Child, Brain tumor, ICU.  

I have been here long enough to  know that even in Cancer World - Brain tumor is bad..... way bad.  Sort of Really Really bad.  It is one of the cancers that if you have and if they cure it, you spend a life recovering from the treatment.

I could tell that the caffeine starved caregiver was not wanting to even think about what was happening.  Just having a child with a brain tumor in your world is hard to comprehend. 

We have been here 7 years long term, 5 months on this round of events. It is still more than we can stand.  The enormity of what happens on the SCCA floor and how complicated the process can be is mind boggling.  Things don't sink into your brain very quickly. 

We came to this process knowing the odds were not good.  The long term odds are not good. There just are not any good answers to the hard questions.  You just keep going and slowly the reality of what is happening begins to seep into the recesses of your brain, your heart and your soul.  What keeps you going is the true dedication and hard work and determination of everyone trying to fix this mess. 

It is truly a mess.  It is so horrific to think of what happens on this floor and in the clinic every day.  The amount of pain, discomfort, the suffering both real and imagined. 

We only take it in one moment or one second at a time.  We ignore the obvious to keep ourselves sane.  We are sure that words like "experimental" "last option" "found a mass" "low counts" "low platelets" "high_____".

We focus on one thing.  I focused on EllieMae making her whites.  I forgot to think about the other things that need to happen to have this transplant a sucess.  It was just important that there be counts. Counts were important because we could not tell whether or not she was "engrafting".  I have come to realized engrafting is not enough.  You have to arrive at "engrafted". (she has) A child on our cluster had early "counts" and engrafting is  happening but he has not reached "engrafted".  It is so so scary.

We all worry, fret, and wonder.  We pray and curse and fret and wonder and pray and chant and pace and rage against the injustice of it all. 

But only as much as we can stand.