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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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

Numbers...ugh


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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Wednesday, January 18, 2017

Eleven years

My mighty warrior, Caeleb turns 11 years old today.  I lived for 37 years without him…how in the world is that possible?  I have always said that I felt like my life began on June 23, 1996 when my Julian was born.  For at least 5 years my husband and I tried to have another child.  We considered adoption, underwent some infertility treatments, and when we finally accepted the fact that another baby was just not possible, we grieved and moved on…and then I needed a pregnancy test :)

Caeleb was not a surprise.  He was my heart's desire.  It just wasn't in my time, but God's.  I have often thought about God getting a good laugh at me and my husband as we started over with an infant when our oldest was 10.  I was potty training at 40!  But I will say that I have loved every minute of it.  I am usually the oldest mom in my son's class, but I am definitely not worried about what others think the way I did when Julian was little.

It's amazing what can happen in eleven years.  We left Houston, the only place we ever lived, and stepped out in faith by moving to New Mexico.  In eleven years we have lived in five different houses, served at 4 different churches and dealt with medical issues that many people will never deal with in their lifetime.  The struggle of being called to a certain place and having a sick child was almost too much at times, but to have gone through everything we have gone through and be in such a wonderful place in our lives is nothing but for the grace of God.

The sparkle in our home is packaged in a little 5th grade boy.  He runs and plays with a passion that warms a person's heart.  You would never know he lived in a wheelchair for a year.

He has a compassionate heart.  You cannot imagine the physical pain he has endured.

He loves with his entire soul and his laughter and giggles are heartwarming.  You would never imagine that he spent weeks at a time in a hospital bed, pale as a sheet.

My mighty warrior is one of a kind.  I am so incredibly blessed to be his Mom.  He has changed me from the deepest parts of my soul.  I know how to love and fight because of this amazing little boy. 

I can't wait to see where life takes him.



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