Thursday, August 14, 2014

"Christian" 2.0

In the world of inhibitors it is easy to get fixated on numbers.  Inhibitor levels are measured in BethesdaUnits (titers) and it is just about everyone's wish to be below 10.  This is the level where most doctors target to get in order to start Immune Tolerance Therapy.

But titers go up and down as fast as the wind changes sometimes.  We are always told to look at the big picture and not get too excited when numbers are low.  Our hope as parents is for the inhibitor to register as ZERO! Wouldn't it be fantastic to be at ZERO and only need factor VIII like a "regular person with hemophilia"? 

It sounds crazy but if you living with an inhibitor the dream to "only" have hemophilia is very real.

My "Christian" was diagnosed with an inhibitor when he was 11 months of age and his titer registered over 2,200.  I never knew the numbers went that high.  And here we are in his eighth year still living with an inhibitor and as an added "bonus" an allergy to factor VIII.

And today I am celebrating the number. 
The number that shows us where we are at in the battle, at least for today.


"Are you kidding me?" I gasped as I heard the result over the phone.  I think time stopped for a moment because I had not dreamed his level would ever get to this point.  It just didn't seem possible.

For the years of pain, joint bleeds, hospitalizations, anxiety, fear, missed school and vacations, PTSD and hating hemophilia, my Christian is having a good season.  A season of "normal" for him that involves walkers, wheelchairs, adaptive sports camp, a bent knee, hopping on one leg and a fifth port. 

It's not normal for most but we'll take it for the moment.

Hope is a good thing.  I have plenty of it.

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