Thursday, March 3, 2011

Wrestling with Unknown

My heart is torn.  From the beginning, I had my reservations about BMT.  The thought of a cure is phenomenal.  But at what cost and risk?  The success rate is high, 80+ percent for non-related donor transplant.  At the same time, that number is based on about 40 procedures.  That’s right, only 40 or so have been done, period.  That is remarkably small.  What about the 20%?  Timothy can be one of the 20%.  The risk is life itself.  To take on someone else’s marrow, organ, body (part of), is not “natural”.  What if his body rejects the marrow, or the marrow attacks his body, or he gets an infection that will cost his life?  These are some of the thoughts I have been struggling with.  I mean at this point, with the insurance fiasco, the point is moot.  What I am grappling with is how I am suppose to “deal” with it.  Do I fight the system with all of my capacity and go for the BMT route?  And even if everything pans out, finding a perfect donor is not a guarantee.  Or do I take this as His will and let it be.  Is this a closed door or His test for me?  I don’t know.  Once again, I am at a loss.  What if we decide not to pursue the transplant route and Timothy ends up contracting a serious infection that will take his life?  Will I be able to live with the guilt that we didn’t get him the best treatment?  And then there’s the future of CGD research.  The new research for CGD patients is the gene therapy.  This experimental cure has treated a handful of CGD patients with some positive outcomes.  Unfortunately, some patients with unfavorable outcomes were lethal.  The research is so new that they don’t know the long term effects yet.  Only time will tell.  Do we wait for this and in the meantime hope that Timothy will be infection-free until then?  They say within 10 years, they should find a cure.  But who knows, right?  If only I knew the future, the unknown.  But then where would my faith be, if I knew everything.  At the end of the day, I need more faith that Timothy is in good hands.  God loves him more than I can ever love him.  So all the questions, unknowns, my big predicament, pales in comparison to knowing that everything is in His sovereign Hands.  Though, I have more questions then answers, I know Timothy will be okay, whatever happens.


  1. You're absolutely right that he is in Good Hands. However, I can see how that still makes the question of what do you do now difficult and mind-consuming. I will be praying that little by little, day by day, God's peace and guidance will be with you, and that you'll feel it in the moment you most need it. I so admire your willingness to share and your focus on faith when faith is hard!
    Love and prayers!

  2. What you wrote is exactly what's in my head (minus the insurance issues.) I completely know how you feel. How do you make a decision like this? It seems impossible. We keep going back and forth and it's driving me crazy. I keep praying for God's guidance and I will pray for you guys too.
    (CGD momma)