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 Xolairdid 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.
