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.
**** 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/