Day +3954: Transfusion, transfusion…

“…Oh, nurse I’m gonna make a new resolution…”

Karen is currently napping. She had a very long day at Hopkins. Her morning blood work showed that her platelet count had dropped to ten. Bad. The general malaise has persisted accented by body spasms and leg, butt, and bone pain. None of this is cleanly attributable to chemo, leukemia, gvhd or the grains in the hour glass (Age).
In discussion with Dr. Gojo, all of this and the other usual topics were discussed including potentially shifting to a 7 day Vidaza cycle versus 5, the possibility of the DLI; however, what was most relevant was establishing a Monday / Thursday monitoring schedule at Hopkins. Chemo cycle two really seems distant right now.

“…I’m hungry and the hunger will linger
I eat sixteen saltine crackers then I lick my fingers…

Dr. Gojo set Karen up for a transfusion of platelets today. That in itself was a land mark, since Karen has avoided transfusion since the bone marrow transplant.
We went to the infusion center where while waiting to be treated, she a severe bout of spams. The techs and nurses at Hopkins are super. An infusion of saline was also coordinated to offset her low sodium count and hopefully reduce the likelihood of spasms for a bit. In addition to her current anti-viral script, a prophylactic antibiotic course (Moxifloxacin) was added. Dr. Gojo is holding off on a course of anti-fungal for now.
Karen’s nurse, Brittany, was super. She was personable, caring and professional – she administered infusions, did the post transfusion blood draws, provided Karen with multiple sets of heated blankets and as suggested that Claritin may help with Karen’s current pains and aches. Additionally, she provided Karen with a handful of packs of saltines which turned out to be lunch.

“…Oh, I wonder, wonder who, mmbadoo-ooh”

Thursday is another day. During the day Karen remarked to me that they (her doctors) didn’t comprehend how bad she felt and that having 27 chemo cycles behind her, this was different. There a lots of questions with no answers yet.

Three songs imbedded per standard.


  1. I’m very glad to read that you have a good care team supporting you both right now. Please let me know if there is anything I can do.

  2. It is good that they are taking good care of her. And that they trying hard to find out what’s going on. Hopefully they find a solution for Karen and she feels better soon. We love you both so much.

    And of course I don’t know the songs.


  3. My dear Karen, I wish I had a magic wand to wipe it all away but instead I send you virtual hugs and warm feelings from my heart. Love, Linda

  4. Dear Karen, you are on my mind every day. I hope you can feel the support and love everyone is sending to you.

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