While most kids are getting ready to finish their summer vacation and go back to school, some may be getting their text books for college. This is our new bible for the next year of our lives. Yesterday Rob and I had a very difficult, four hour class with a doctor explaining what Daniel's specific Bone Marrow Transplant (BMT) will look like. And when I say a year that is what it will be. It is a year long process and it is frickin terrifying. We learned more medical jargon than anyone who is not a doctor will ever need to know and although by hour three and a half the doctor said that many of the things he told us were only possibilities and hopefully will never happen he had to prepare us for what could happen. There was a lot of talk about "Things that could kill him" and although I debated putting this on the blog I realize that all of you reading are there with us in this journey and will be there for us throughout. Something we learned as everyone is gearing up for the donor drive is that the plan is for Daniel to go to BMT but that he also has to get there. He has to be a candidate or qualify, so to speak. This doesn't only mean finding a match, this means that Daniel's body and Leukemia has to do it's part to. What I mean by this is that if Daniel does not respond to this round of chemotherapy that he is having now and his numbers don't do down and then back up to where they should be and stay there without the Leukemia returning like they did already then he may not make it to BMT. We need to believe that this more aggressive round of treatment he is receiving right now will do what it needs to do. As far as that the year of BMT looks like...I am not sure I can go through it all now. I am not sure I can stomach going through it again. I was up all night last night going through it all in my brain like I had a final exam today. So much data and facts and scenarios to think about, many of which we hope we never have to deal with. We know that these doctors know what they are doing and they have seen it all before. They are fully prepared for anything that happens. They are doing their job to prepare us for what may be coming. Right now we know that once Daniel finishes this month of this treatment he needs to recover and be ready for his BMT because he needs this. We were made aware that his Leukemia is aggressive and therefore so must his treatment be. He needs to get to BMT as soon as possible. Getting ready for BMT is gruelling on his body and his mind and on our schedule. Because of this, the time that he will come home at the end of his month will become filled with daily appointments that are preparing him for transplant. They need to work up every organ he has, including his neurological status( maybe we should have a quick eval too). Once he is in BMT he will have many different phases of the transplant and milestones to reach that I will explain another time but he will be in different stages of isolation for a full year. Hence the neuro work up probably. It won't be easy. For him mostly, but for any of us. But this is all still a while away and until then I have some studying to do while Daniel is working on getting his Leukemia under control. I promise to share my notes with my friends as we progress and I won't hold anything back.
2 Comments
7/25/2014 03:23:40 pm
I am fascinated by your blog--- I read it every day. I understand that ginger helps with nausea. Could I send him some gourmet ginger snaps?
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Karen chwy
7/26/2014 08:14:32 am
Nadine. I read your blogs daily. And think about Daniel often. Sending it's of positive energy your way. I can't imagine what u r all going through.
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