Another Angel

Heaven's been gathering some special angels lately.

Our SDS family lost another young man this week.  20 year old Alec Browning.  He received a bone marrow transplant last year but passed away due to complications of that.  He will join the ranks of so many children who had to leave too soon because of bone marrow failure.

I wanted to just recognize the Browning family and add my sympathy and prayers along with the rest of our SDS family.

There is another SDS young man, a 44 year old, that is having serious bone marrow problems and is not a candidate for a bone marrow transplant. I don't know the details of his situation, if he has Leukemia or Myelodysplasia, and  I don't know how long he will be able to stay, in the condition he is in, but I pray for comfort  for him and his family as well.  I hope like any fatal disease, there is a period of peace and the fight resolves into the next life.

It's sad when a child, young adult or even a middle aged bone marrow failure patient passes away.  Not only sad but sobering too.  We may be swapping disease names in the near future, but we are not going to magically fix bone marrow failure with that name change. Our doctor made it clear when she called that they have a serious bone marrow failure syndrome.

There have been great advances in transplanting SDS patients.  I remember having a conversation a number of years ago when transplant success was around 20% or something like that. I never felt that I would put my kids through that. The chemo treatment before transplant was hardly survived.  They have new regimens that are 'easier' on a person and by easy, I mean, they can prevent death before even getting to the point where the donor cells are transplanted.

 Now, Seattle reports over 95% success rate in transplanting SDS patients and I think that covers the first year of survival.  I think that is wonderful and comforting, but it seems to me that they have a lot of work to do post-transplant.  I think most kids do well the first year or two but it seems like it never lasts due to graft vs. host disease.  I don't have any immediate facts to back this up, it just seems that transplant only buys time in many cases.  Sometimes I think, transplant or not, the battle never ends and that is an exhausting thought.

Today, my heart goes out to all those moms and dads and kids who have such courage in the face of unknown realities.  Today, I will be a little more grateful for my own kids...their resilience is amazing to me and believe me, it's nothing I did for them.  I do think God blesses sick kids with an extra measure of strength and that is a very cool thing to see!  



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