If you know me, you’ll know I like being wrong

I truly do.  I enjoy being wrong.  I might question, I might get passionately involved in the discussion but if there is information I don’t have and I can benefit from it, I’m in.  All in.

righteo so here we go again although this time with more information.

Turns out that the stickers for CMV tested blood are quite irrelevant as they are no longer going to test blood for CMV.  This I suppose is a good thing and a bad thing while Blood Services relies on their filtration to almost remove it from the blood supply.  Ya.  Thank god for technology.  So here we are waiting for platelets.  You know again I have to say that if parents were given information about the drugs and the risks and the reasons behind decisions made then we wouldn’t feel so in the dark.  It’s a huge responsibility to place on people who don’t have the adequate resources or time to make them. 

Ruby’s counts appear to be coming up thankfully negating the need for an early stem cell infusion.  We will be taking a break once we are out of here to recoup her health.  Not sure what the next step is or what the next step should be.  All I know is that after speaking to the oncologist I feel reassured that we all share the same questions, the same “unknowns” and at least he’s got some connections to other professionals out east and in Germany who he can reach out to for more info. I think making it clear that while we treat this type of cancer like other ones, it’s understood across the board that there is very little research done on pineos so therefore there is no real standard of care plan that fits and works for this particular cancer.  There’s what they can do and …well…I suppose that’s what they can do. 

We wait.  And wait.  And make short term plans. 

By the way, the nail salon is open and if you want some nail painting done, Ruby’s doing nails for free and throwing in the odd finger for special customers.


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