Ledia, Mason, Myles, Peter and I have been sitting in John's room, with Ledia and Mason switching out to take care of baby Wolf at Rotary House, as children under 12 are not allowed on this floor. Bill Nemir just arrived this minute from Austin. Mason's girlfriend Melissa plus Allison Orr, Judith Sokolow and George LaSalle will come tomorrow. It has been a peaceful "time out of time" experience to be just hanging out with family and close friends--something we rarely have an opportunity to do. Peter and I brought in two huge foil helium balloons--one a multi-colored butterfly and another a dragonfly to celebrate the official beginning of spring.
John is very quiet and sleeping peacefully. Not much change in his health status except that his pneumonia may be slightly worse than it was yesterday. We feel the room to be full of love from those here and from all of you. Peter, John's brother and bone marrow donor, has written the following about what we are experiencing here:
Hello to all from John’s room at MD Anderson. This is Peter, John’s brother, and I’ve been here since Tuesday night. It’s a return trip for me after being here two weeks ago for John’s diagnostic craniotomy. I’m really grateful to be here with Mason and Ledia and Wolf, with Myles, our father, and of course with Anna, who is the amazing, steady and sure anchor for this journey. There are, of course, other visitors: David Baker from Body Choir came Wednesday afternoon and went back to Austin last night, and Luis, the sitter who Anna hired, is here most of each day. With the various doctors and nurses who stop in, the room is in an almost constant buzz of activity, even if we are all just sitting still. The doctors and nurses are all busy adjusting John’s medications, checking his vitals, taking X-rays, manipulating him in bed to make him as comfortable as possible, and continually responding to any change in his situation or condition that causes concern.
So far today (Friday), John appears more comfortable than yesterday, when he was very uncomfortable at times, moaning quietly, agitated, and working much too hard to simply breathe. We struggled to help him feel better. His incredibly capable and oompetent nurse, Norman, has found that repositioning him on the bed is very helpful. We can, unfortunately, do nothing to ease his labored breathing; his lungs fight for every breath against the pressure of fluid and infection. But he is fiercely determined not to give in, and we all take our cue from that. We can’t tell how much clarity there is in his view of the world around him from inside his battered head, though I am convinced there is a great deal of essential understanding – that he is here fighting for his life and that those who love him are joined with him every step of the way.
Late Thursday afternoon, as John lay focused on his breathing, Anna put on Mavis Staples’ powerful new album, “We’ll Never Turn Back,” and soon we found ourselves singing quietly along with “We Shall Not Be Moved,” a most appropriate and beautiful anthem of defiance. And following that, Anna and David and Luis were dancing to “99½ (Just Won’t Do).” It was a wonderful moment, the sun splashing the room with light and the motion and music sending an insistent message of love, comfort and support to John and to us all.
Shortly after that, though, John went through a terrific bout of coughing, his breathing became deeply difficult as he tried to expel the sludge from his chest. We held him and each other until the moment eased, and he settled back into his more typical, but still quite challenged breathing.
That the intensity of this pitched battle is being repeated room by room and floor by floor across this vast complex is ever present, and it actually bolsters us as we meet neighbors, both patients and caregivers, who are all engaged in the action. The cordial hellos in the hallways of the hospital and the hotel known as Rotary House, where we repair for sleep, for drinks, for exercise, for warm-hearted breakfasts, all remind us that we are not alone, and they help us feel that we are contributing to the succor of others in need. The quiet determination and acceptance of the present condition of a loved one’s life – and our own – is a constant throughout the day. This sensation is at the at the nexus of treatment, awaiting outcomes and accepting the endless series of minute steps along the path, wherever it leads. It is the heartbeat of the place.
Now, on Friday afternoon, we sit in a watchful yet calm state, happy to be with one another and with John, whose breathing struggles have eased, perhaps with stronger drugs, perhaps because his condition is improving. We don’t know what the next stage in this journey will be, and how it will challenge us, but we do know that we are all committed to sharing it and making the most of it. As Anna said a few minutes ago, John’s gift to us as a family is that he is bringing us together, and that, like everything my brother has ever tried to do, is no small accomplishment.
Love, Peter and Anna