We didn't make it 2 weeks when NHOH (Dr. DiVenuti) called Lora on her cell around mid-day on Friday and stated, paraphrasing of course, "the preliminary results are back, and it doesn't look like Leukemia, it looks more like it could be Myelo-Displasia". And yes, this was the first time any of the medical staff had uttered the word "Leukemia". Of course I immediately began a whirlwind self education of MDS, it's causes, treatments, symptoms, mortality and remission rates, etc. By the end of the day, I was a self proclaimed expert, thanks to wikipedia and google. LLS.org is a great site as well. The problem apparent with MDS is that not only does it seem to look and act just like Leukemia, most ppl with it end up having leukemia anyway. This is the first time I felt I really knew Lora was going to have to endure chemo-therapy, as it's the primary first course of treatment for either MDS or Leukemia. Dr. Divenuti said she'd like us to go for a consultation (2nd opinion) with their parent facility in Boston, the Dana Farber Cancer institute. An appointment would be made for us and it would be on the following Monday.
Visit the MDS Foundation to support research or learn about Myelo-Displatic Syndromes
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