We heard from City of Hope hospital on Friday 1/14/11. We have our appointment scheduled for 1/24/11 :-)
With the very preliminary data that they have received so far, they are thinking a bone-marrow transplant would be best. But not cord-blood transplant. They are thinking (again with the very limited information they have) that the closest match (9 out of 10) would be better than a cord-blood transplant.
City of Hope is out of our network for our insurance. So we have a pretty big deductible, and then it doesn't cover a whole heck of a lot afterwards. And City of Hope already warned us that a bone marrow transplant through them would not be covered at all by our insurance.
So we are hoping that we can gleam a lot of information from them. Make a decision on the best treatment that will give Jeremie the longest, quality of life possible and keep our treatment in Utah.
Jeremie's numbers aren't the best at the moment. Platelets are falling, but still in a range that doesn't require transfusions. He is feeling pretty good. Of course he has periods of fatigue and exhaustion. But he is the little train that could ;-) He has been so busy putting our house together. It just looks amazing. I love seeing our dreams become reality.
He is quite difficult to sit on when he feels at all ok. His motorcycle was "finally" fixed. So he has been trying to spend as much time riding it. It makes my heart just swell. It used to make it bleed in plain fear, but I truly know now what this gives him.
Each day is a blessing. Each moment is treasured and we are loving our life. Thank you all for your continued love and prayers. Really we feel them :-)
Love,
Cori
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