DAY 147

Dear everyone,

We’re still trying to survive through the ‘eye of the storm’ here with Steven. Unfortunately there seems to be no let up.

Socié and entourage were around this afternoon. He feels that there is improvement and that the contents from the stomach evacuation are now near normal expectations. They are still reluctant to remove the NG tube as there is a fear of inhalation or contamination from the stomach contents into the lung, during potential nausea, which could be dangerous. They also need to be more convinced that the stomach is capable of emptying itself and so far there is no evidence that this is the case. The recommendation is that the morphine consumption is reduced as it can have a slowing effect on the GI system. On the other hand morphine also opens up the alveoli in the lungs which helps the breathing mechanism, and, Steven is still on oxygen. It’s all a fine balance really. We expect a visit from the pain control team tomorrow who possibly will have more specific suggestions.

In general, Steven was slightly livelier today although still doing a lot of sleeping. He sat out for a bit and did a few mini walks around the room. You wouldn’t believe how taxing all of this is for him at the moment.

The results from the most recent scan would seem to indicate a problem in the lower left lung. Sounds familiar, right? They suspect a lung infection which would add to the endless list of worries. I am hoping that this may be just another bogus scare derived from inconclusive lung imagery as an infection now, with such low resistance, would not be a good scenario.

We continue to live in hope and rely on what might be just possible as opposed to what is actual. Steven so frequently and so heartbreakingly seems to fall into the minority group in the negative sense. One of the great boasts about cord blood transplants is that there is significantly reduced graft versus host disease and those who do get it experience only a mild form of the condition. Well, Steven is in the minority of cases to acquire ‘severe’ GVHD post transplant. We need to live in trust that one of these days the odds will turn around and work dramatically in his favour.

The strike in Paris is very wide-ranging at the moment and does affect hospitals. In St. Louis, those who are on strike wear banners across their backs stating they are supporting the action; however, they are still actively at work. In Tréfle 3, which is a bit of an island unto itself, I have not seen any banners – I think it might be considered a bit indelicate to indicate strike support in these surroundings. So, no worries.

Love to all,

Evelyn, Matthew and Steven