Feb 9, 2010

Got a little Aplastic Anemia help!

I called the Aplastic Anemia & MDS Foundation ( http://www.aamds.org/aplastic/ ) as a peer volunteer returned my call. Her name is Leigh and she was SO wonderfully helpful. She really confirmed what I was already feeling. She mentioned to me that we should probably only deal with doctors who are specialists in this field, as the disease is so rare. She gave me the name of the experts in the area of AA(aplastic anemia). Dr David Margolis in Wisconsin and Dr. Neil Young over at the National Institute of Health in Baltimore Maryland. I reminded her that I lived in California. We are in Luck because yet another Aplastic Anemia specialist just happens to be located over at UCLA! Hooray for hopefully not having to go cross country with our family of 7! (Although it seems the few people I have contacted regarding AA have received some type of treatment at NIH in Maryland with Margolis with Dr Young in clinical trials.) We may have to travel yet, but we'll cross that bridge if/when we gt to it. The thought of having to somehow fundraise to get cross country terrifies me! The Lord would of course need to go before us as I get overwhelmed thinking about how the logistics of ANY treatment will work whether in state or out of state.

I asked why I was told to bring Josiah in at tee first sign of a fever/infection. She mentioned to me that she didn't want to frighten me but that this is a very serious life threatening disease and that any fever could be a sign of infection in which case Josiah would need antibiotics and monitoring. She told me that he isn't like my other children where you could wait until morning, or wait until after the weekend. It is very serious. I am glad she stressed that because the doctors didn't really seem to emphasise that at all. ( I did ask our doctor what a fever would be and she said anything over 101.5)

I asked her what parents tended to chose for treatment and she explained that some prefer to do BMT ( Bone marrow transplant as a last resort as there is no cure for graft verses host disease) That a BMT is the only way to cure AA, and typically 70-80% have a response. ATG could possibly put it in remission but that usually it wont CURE the disease. So is it better to risk the chance of a normal life with the cons of possibly GVHD or a safer ATG but never fully recovering? Decisions decisions. :-( She suggested I make a care page for my son to notify everyone of medical updates! It occurred to me that now " I/WE" we're now one of "THOSE PEOPLE." The ones with a sick child. I have always had friends that had those pages and now shes asked me to start one for MY SON! That was a wake up call. After hearing from Leigh it really brought home the point of how serious things are. I was better able to process everything. Now this whole thing seems so much more real. We are seeking Him for help on which steps to take and asking Him to protect, lead and guide us along this path that he has laid for us. For any of you that know someone with Aplastic anemia, here are some links I was recommended.

**** www.marrowforums.org
**** http://www.caringbridge.org/
**** http://www.aamds.org/aplastic For a video of Dr Margolis explaining the disease and treatment. There are 2 interviews ( 1in for parents one is for children, VERY helpful!)
here for parents HERE!!!

The National Library of Medicine (NLM) www.nlm.nih.gov/


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