Thursday, April 20, 2017

Transition complete

Today was day 10, the final day of transitioning my mighty warrior, Caeleb, from Advate to Alphanate.  We started with 250 units of Alphanate and increased each day as we lowered the Advate.  No problems!!  No allergic reactions!  We are at 5,000 units of Alphanate!  The Xolair did the trick!  I will shout from the rooftops (this is the closest I may get) and give praises to that amazing allergy drug.  It was a painful infection (actually 2 shots each time) but as time went by my warrior got used to the sticks and did great.  It was worth fighting with the insurance for at least 3 months, going into the clinic to get the shots and be monitored, and we even eventually were able to administer them at home.  It was definitely worth it.

We are switching to a plasma derived product to see if we can possibly get Caeleb's inhibitor tolerized.  I will admit, accessing his port daily with no bleeds over the past two years has been a dream.  But we knew it was time to try and move forward with a new plan. 

"Why not live with the inhibitor as is?"

If there is a chance, even the slightest chance that we can get where we only infuse 3 times a week and use 2,500 unites  per infusion instead of 5,000 units daily….then it's worth a try. 

I took my warrior in to the clinic for most of the infusions over the past week just to be safe and he thought it was funny how the nurses would say, "Caeleb!  You look amazing!  You are so tall!"  "Why is that such a big deal?," he would ask me.  "Son, most of them are only used to seeing you lying in a bed or in a wheelchair."

Those days seem like a lifetime ago when in fact, it's only been a little over two years.  

I am so glad we are on the "other side" of some of the worst that hemophilia and an inhibitor can cause.  I give thanks in all things and when it seems like life can't get any worse, something else always manages to happen and you say, "Yes, it can."  But I've learned that if I hold on to hope, the way I would hold on to a rope that I was dangling from with only a cavern below me, with a fierce desire for things to change, I won't be let down.

It could always be worse, but when it's better, it's amazing.
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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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