September 15, 2013

“Nothing like a hospital stay to start writing again”— not so this time. Minutes to hours to days, filled, non-stop, surreal.

Dannie’s new found improvement was/is exciting and encouraging. She has found her treatment of choice for this leg of the journey, improving her overall health, supporting the developing stem cells, beginning to see a filtering of light at the end of the tunnel.

Excited to visit home with her improvements, spend time with family/friends, get a few appointments completed, gather some things and return to Wichita for continued treatment… she journeyed home, by plane~coach not business, able to sit up! and ride in car…. something impossible for years upon years. Two days before she was to be here, we found mold in our home, resulting in Dannie not being able to sleep in her own bed, but in a hotel…  Unexpectedly, the break from the treatment which was so healing and helpful, the travel, and a few other challenges, seemed to give way to a return of her spine and body pain…

Blow torch up and down her spine, electrical shock pain streaking and jolting through her body, feeling of broken bones, shattering with weight bearing, movement. Nausea, sensory sensitivity, hot and cold,  migraine….Efforts to arrest it, reverse it were unsuccessful, resulting in two trips to the emergency department  and a third visit, admitted and inpatient, for nine days thus far. ICU followed by a step down unit, now on an Acute Care Unit. An episode that was excruciating to witness, I cannot fathom what it is for her to experience. Home, back to the emergency room, not once, but twice, last time the night Ari was flying to India… I stood in the hallway, quietly talking him through nausea as he had a 5 hour layover in Korea.

I can’t write about Dannie’s ordeal—ordeals— now. It is too much.  I am too weary from witnessing such suffering and the unbelievable and exhausting episodes of hospital groundhog day…

Plan: To get thru this – to find a way to quiet the pain and for her to get back to the treatment that was serving her so well and to stay longer, to allow stabilization, and the solidifying of her progress.  Somehow. Some how. Some how. Soon. Holding on. Sometimes wanting to let go, then holding on some more.