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Concerned Citizen and a Serial Entrepreneur wrapped in a progressive democratic soul longing for us all to get along.

Thursday, December 12, 2013

Today is Thursday, December 12th

I startled awake at 1:30am and thought it was morning... gazed at my iPhone and started playing solitaire...then reality struck.  My T is NOT here... and so the saga continues...  I had put a bag together for T on Tues. evening...AAA batteries, T shirts, toothbrush plus a Subway order for a foot long cold cut combo and a root beer.  Wed. morning was cold, crisp and clear as Riley & I set off for our beach... greeted the usual walkers and rushed back for coffee and decided to dress for my honey... green velour dress, textured tights & boots w/ scarf (my honey gave me awhile back) & some fun jewelry....Called in the lunch order & scooted off... Cupertino for the sub and great timing until I hit the Stanford quagmire... several roads blocked off for the huge building project... T reassured me that we'd see the Dr. after the musical program so not to worry...  On the way in, I checked for a room number for an old pal... turns out he's right next door to T.  He mentioned that he had heard T rooting for the Bears on Mon. evening... and he's Bruno's patient too... weird, huh?

Off to hear a wonderful 2 guitar musical arrangement of the Nutcracker Suite in the Atrium and snuggle with my T.  Music is our key... bonding and melding into each other ...  concert over  my mission was to find root beer (I'd forgotten it)  so, winding thru the underground maze to the children's hospital cafeteria for 'diet' root beer... didn't make T really happy but that was all there was..  lunch & a knock on the door... Bruno!  We didn't expect to see him cause it was his first day back -  he'd gone to Brazil for the holiday and then upon return - a biz trip to New Orleans.  So, we were so pleasantly surprised to see him.... with the straight story.

This protocol is an intermediate step.  We hope for remission but there will be a next step... asked whether T could come home after this cycle?  it's not a question of 'can' he BUT should he?  His Neutraphil count isn't even registering so, he's susceptible to anything and everything.  How many cycles of this protocol?  what's next?  Wait and see...  Bruno said there's a 'sexy' new protocol... no statistics, no idea what the outcome could be... something to consider or transplant?  known outcome and predictable results.  or Penn study?  Well, the real question for the Penn study is what are they working on right now?  Are they testing folks who've relapsed after one protocol or two? Or patients that are in remission?   Lots of questions and no real answers as yet but lots of food for thought.

Bruno left the room and T made room for me to snuggle...  and Albert, T's nurse took this...



  1. I love this photo.. thinking of you guys everyday and saying prayer!!!! Bless you both Love Di & Mike