Sunday, January 11, 2015

Journey Reality

so.... We are creeping up on the 3rd birthday of Pearl Anne.  She has been stepping up and working hard to be a grown-up immune system.  She did need some help and some re-vaccination had to be done.  Some times when you are two, you are so busy with life and saying "NO" that you forget to produce titters when you are given a little bit of a bad virus and are supposed to get to work. 

Anyway last week was a crazy, stressful and very tiring.  I, for one, am out of shape in the going to a million appointments at several hospital institutions in short order.  But we did it.  We have been excused from next year's appointment and are not expected back for the week-long trudge until 2017.  A very good thing.

So I managed to get myself pretty worked up and freaked out over the course of the week.  Mary-E looks great but then she did the first time Leukemia creeped into our lives.  She was in perfect health when I sent her off to college when she relapsed.  I know that with every blood draw, every bruise, every hair that falls, it could be a sign and not a good sign.  

Well this time what you see is what you get.  Thankfully.  

I asked Paul Carpenter (our favorite Aussie Bone Marrow Doctor) when I could stop worrying.  He asked Mary-E what she wanted to hear.  I said I wanted to hear the truth.  His reply to me was  "She is fine for now.  You will always have a reason to worry." 

That was not the answer I wanted.  I wanted him to say we were done. They had fixed her and we were released.  Instead, we have just been transferred from Pediatric Bone Marrow Transplant Service to the Adult. She will be closely followed for the rest of her life.  They are watching and waiting for something to appear, the next thing to be handled.  This journey is just going at different speed. It is not over. 

I, like a million families of children struck by cancer, want it to be over.....  Really Really Really OVER.  It is never over.  It is never ever really over. We don't get to go back to the time before cancer. I know this but there are moments I want to believe it is not the case.  

I think it is sort of like giving birth.  The pain of the actual birth recedes with time and more children are born.  So.... you ask. 24 months until the next big appointment. There will be some small check-ins.  She is essentially done.  But in reality she is not done.  She is done for NOW.  I wanted her to be done done.  I wanted to put away that knot in my stomach. I wanted to not wake at 3 a.m. in the morning with a start.  A deep chill of a horrifying dream. Over, I want it to be over.  

I am working on gathering the strength to go forward and constantly prepare for battle.  Even it is just by taking a few deep breaths.  I need to re-charge somehow.  One step, One moment. One thing at a time. 

Best use of my energy.  Putting away Christmas...... with a label maker as part of the process.  








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