Wednesday, March 29, 2017

Unheard of

Starting the journey down to the caverns

Catching our breath

Spring Break 2017 is done.  We traveled to the south of New Mexico to take in Roswell and Carlsbad Caverns, swung through El Paso and then to White Sands.  We did a ton of walking in the caverns.  Going down is super steep (and the bathroom is an hour away) :0  But I noticed something, through my frizzy hair from the humidity and the aches I was already feeling from the incline, my Caeleb was walking down like a champ.  Two years ago we could not have done this hike.  It was unheard of.

Step by step
Down the dunes
Taking it all in
Then we went to White Sands.  The dunes are beautiful and cool to your feet.  The hard part is climbing up the dune to go down on your sled.  When Caeleb was about 2, we took our eyes away for a second and before we knew it he was at the top of the dune dragging his orange sled ready to go down.  And down he went, giggling the entire way, rosy red cheeks and sand everywhere…I mean everywhere.  My fearless warrior is a risk taker.  This time going up the dunes was a bit harder for him.  His right knee and ankle don't always work like he wants them to due to repeated bleeds, but he forged ahead, made it to the top and sled down, time after time.  

His dad was coaching him up to the top, step by step and we had a victory dance when he made it back to the top.  And down he came again.

I was overwhelmed by the beauty in front of me this week, but the most magnificent part was watching my warrior take charge of his life, hiking and sledding with sheer determination.  

Holding on to hope was the best thing we could have ever done for him, because now, it's all he knows.  

There is no such thing as "can't" in our home.  There is always a way to make the magic happen.
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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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