Wednesday, March 1, 2017


When you live with an inhibitor you often wonder what life would be like if you "only had hemophilia."  In our case, Caeleb, who is 11, has lived for 10 years with an inhibitor.  Shouldn't it be gone by now?

Our oldest son, Julian, who is twenty, also had an inhibitor when he was one year of age.  It lasted for two and a half years and when we finished Immune Tolerance, he was successfully tolerized and has not had a recurrence.  Accessing a little boy's port daily for two and half years doesn't sound "normal," but it was for our family and it paid off.

Fast forward to his brother, who is ten years younger, who was also diagnosed with an inhibitor when he was eleven months of age.  Nothing was remotely similar to his brother.  His extremely high titer (>2,200 BU) made attempting Immune Tolerance Therapy (ITT) impossible until the past couple of years. 

Caeleb's bloodwork came back today and his Bethesda unit (BU) is .43 with a half life of 3 hours and 47 minutes.  Ugh.  I know tracking his numbers is extremely important, but sometimes I just don't want to know.  I get my hopes up that maybe, just maybe this is the time that his half-life will be better than four hours (the goal is 6+ hours).  But it just hasn't happened yet.

What I do give a great deal of thanks for is that Caeleb is not bleeding regularly, his port is working and accessing daily is part of our routine.  I remember not too long ago that daily accessing at home was not possible.  Getting into his port was a nightmare as he fought every step of the way. 

I am grateful for so many things and today I give thanks for the blessing of my mighty warrior, Caeleb, who has brought an enormous amount of joy into my life.  

I am  not the same person I was without him…I'm better.
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