SDS and other news

Tonight I've been working on the SDS movie for the big fundraiser coming up on February 26 that The Butterfly Guild and Seattle Children's hospital is hosting.  It is has been cathartic in some ways to sort through almost 75 pictures of kids all suffering with SDS.  They are so sweet and some of these kids have been through the most challenging of problems yet they always seem to be smiling.  I really hope that I can get permission from everyone when the movie is done to post it here.  It's pretty moving. 
     I had a surprise phone call from Dr. S in Seattle.  I was surprised by it because normally, we end up playing phone tag but this time she got me on the first try.  I was also just expecting an email, not a phone call.  She has done lots of research for me on this new drug and gave me some interesting things to think about. 
     If Shelbie starts this new drug, she will have to have a bone marrow biopsy every two months to track the changes that it makes to her marrow.  If it starts causing problems, there's a chance those problems will be irreversible.  Right there was enough to convince me that this is not the avenue we want to take.  So, I will meet with our local Oncologist to discuss where we stand.  I know it will be a tough meeting but I am the only one who is advocating for my children so I just have to do it!
     She offered some other disturbing news and I am choosing to ignore it for now at least.  She thinks it's time to test Shelbie for Lymphoproliferative disorders.  Obviously, she is not a standard ITP case and there needs to be more work ups done to determine what else is going on in her body.  This disorder she is referring to is basically a series of separate diseases that they group into one disorder. The diseases are ones like Lymphoma, Leukemia, etc....I just can't go there right now.  I don't feel like we are dealing with any of this yet so I am going to hold off....I think.  I guess I will talk to our doctor about it next week but it just doesn't feel like there are any glaring symptoms to bring up this kind of stress.  So, for now, I will do with this information what I usually do, keep it in the back of my mind to retrieve at a later date and try not to let it worry me. 
      It's crazy because logically, I know that these kinds of bad things are potentially coming but when anyone even makes mention of it, my anxiety flies off the charts if I can't dismiss it quickly from my mind and sink safely back into my ignorance and denial!


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