Friday, April 21, 2017


I met with the doc today. I have 3 bad things happening in my blood that are possibly keeping the MDS active. There is a drug trial in Houston that is working on one of those bad things (cell clones??) that my doc wants me to try - if it works he'll give me a little more donor blood and see what happens. I may or may not be eligible for it- he's going to reach out to them.  If it doesn't work he wants me to do another transplant- a more gentle one with less chemo and a longer recovery time. James is going to do some research and see what Dr Raza in NY has to say. We'll send her all the test results. So it's all very iffy. The doc thinks the transplant may work with a different/new donor. There are still all the dangers and I'm 8 years older. He says I am in excellent health tho and recommends it. So I'm freaked out and feel scared. This is all I know at this time. I'll share info when I know something new.


  1. Beryl Thanks for letting us know right away. Been thinking of you all day. I'm so sorry. I would be freaked and scared too!! Let me know if I can help in the move and any with any other thing. Love Betsy

  2. Well dang! If there is anything we can do for you and James, let us know. Sending you much love.

  3. Hi dearest friend,

    so sorry you're back in this again. we love you and are all over the prayers and good thoughts for you. holding you and james tight. hugs, xoxox b,t, e

  4. I have been worried that you would encounter not-so-good news again. So so sorry. As with others, thoughts and good wishes are with you. And like others, I'm eager to help in any way possible. Hoping for the best
    xoxoxo Judy

  5. how a pirate deals with a treasure chest full of sand -- ARGH!