Friday, November 25, 2011

Thursday Nov. 24

Lee, Robert and Emily drove to Philly in the morning, arrived about 11:30. Linda has an oxygen mask, but is still breathing hard. Her eyes open slightly when we call to her, but there is no other sign of recognition. It is very hard seeing her like this. Emily sits and tells Linda a long string of anecdotes from their time together - "remember when...". I finally get her to say goodbye. Rob and I do too.

We drive to Carla's house in Oradell, NJ. Just before we arrive I receive a call from U Penn. Linda seems to be in more pain, and they suggest that we start a morphine drip to control it - I tell them to go ahead.

Family meeting with Marcia, Carla, Joel, Paula, Pat, Barbara, and Robert: Marcia begins by reviewing the last conversation she had with Dr. Loren: Two days ago there were essentially 3 options; 1. go on with increased steroid treatment hoping for a breakthrough, 2. target the pain, while keeping other IV fluids going, and 3. target the pain, while reducing/eliminating the IV fluids. Marcia points out that these options are now moot since Linda is deteriorating faster than expected. Linda's liver is failing (bilirubin is at 24 now) and her gut is still inflamed. Worse yet, the GVHD has started to affect her lungs and she has a new infection. Everyone agrees that Linda's comfort and pain elimination are the first priority. We learn in a call to U Penn that stopping the steroid treatments will not increase Linda's discomfort, and we tell them to focus entirely on pain relief. It is decided that if she can be stabilized, we will have Linda moved to Allentown as soon as possible. The hospice people will be around tomorrow to evaluate her for movement to Allentown.

The doctors do not expect her to survive more than a week.

- Lee

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