Tuesday, April 11, 2017

No fear

I was in the clinic today with my mighty warrior.  He is starting to transition from a recombinant Factor VIII to a plasma derivedFactor VIII.  He has been doing well for a couple of years with very little bleeding, but his inhibitor is still around and his half-life is not great.  What that means is that the factor we infuse into him does not last very long…less than 4 hours.  In order for his inhibitor to be tolerized, it would measure at 0 and his half-life would be greater than 6 hours.

This is a move that has showed good results for others, so we are going to give it a try.  It means I will be taking him to the hospital daily for two weeks for the infusion and observation.  He has a history of allergic reactions to Factor VIII, but since his very successful adherence to Xolair (an allergy drug), he has been great with his factor.  I am hoping that the Xolair did the trick and the new product will not cause any issues. 

Today we started at 250 mgs, tomorrow, 500, then 750….you get it….up to 5,000.

I was surprised at how exhausted I was when I got home this afternoon.  It's not that anything bad happened, I wasn't overly anxious about the treatment, but I think just being in that environment did a number on me today.  Caeleb and I played the Wii, were on our tablets, talking and joking…but in the background I kept hearing little ones screaming in their clinic rooms.  Another young boy was brought in to the observation area next to Caeleb and he was horribly sick.  Nurses fluttering in and out of rooms, parents looking very tired, the Childlife workers doing their best to help distract children from painful procedures….yes, that was our world for a very, very, long time.  But that is the norm for that part of the world and it brought a heaviness…a deep sadness over me without even realizing it.

I started to think about the times Caeleb was screaming while the nurses tried to find veins to access, or his port was not working well.  The hours and hours we spent in clinic as we gave time between one horrible attempt after another to access him.  And the times I would have to wait in the hallway because I was not able to help.  That was excruciating.

But today, despite the sadness and the flood of memories that came over me, I was watching my mighty warrior, standing up, playing the Wii while he was being observed.  His nurses and doctors came in with several saying, "Oh my goodness!  You are so tall!"...because he was always in a wheelchair.  And hearing him tell anyone who would listen that he infused all by himself again…oh, my…he was so proud.

My warrior has come a long, long, long way.  I'm not sure what this next part of his journey looks like, but that inhibitor can just bring it on! 

No fear here.
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