DAY 141

Dear everyone,

The news today is fairly mixed.

Steven has not had any diarrhea since the middle of last night and this is a welcome development. According to Dr. de Latour, Steven’s stomach paralysis is a result of strong GVHD in the upper intestines which restricts the muscle spasm that moves material from the stomach into the intestines. The only sign that the GVHD in the intestines is improving would be a cessation of the diarrhea (sorry to be so graphic, but in this environment this discussion is just so normal!) which would then indicate that the stomach will return to normal - and empty accordingly.

Anna was in this afternoon, examined Steven, and felt that the tummy was better. There will be the usual roundtable meeting after lunch tomorrow where they will decide when to remove the nasal tube – tomorrow has been mentioned but we will ‘not count our chickens’ (another Stevenism of the moment) until we know for sure.

On the other hand, Steven has been exhausted all day and has slept for a great portion of it. He was not able to face the corridor today due to lack of energy, although he did do some leg and arm exercises, and sat in the chair, out of bed, for some time. The problem is that the more a body languishes, the more difficult it is to gain energy the following day. This difficulty emanates from the really radical muscle wasting processes of the steroids.

In summary, this continues to be a waiting game. The signs are newly positive but as we all now understand, things can change in a heartbeat, or something absolutely new can develop.

I always feel that even in the darkest abyss, it is the essence of human nature to grasp onto any shred of hope available and this is ultimately what sustains everyone through the deepest despair. As I sat in the waiting room the other day, waiting for Steven to go through his daily ablutions, I came across an Emily Dickinson poem amongst the literature (which had been translated into French, as of course it was a French publication) – it goes like this:

Hope

Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all,

And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.

I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.

So, we continue to wait, and we hope with all our hearts and might that things will go better for Steven. We gain great sustenance in knowing that you are all praying and hoping for the same thing too.

Love to all,

Evelyn, Matthew and Steven