DAY 102

Dear all,

Double cord blood transplants are truly a wondrous thing. They enable those who cannot find a suitable bone marrow match to move forward and benefit from life saving treatment. The technique for these transplants has progressed in leaps and bounds since the very first one was performed in 1988 by Prof. Eliane Gluckman, in the Hôpital St. Louis, on a child who had Fanconi anaemia. The downside of this particular type of transplant is that although cord blood stem cells are pluripotent (ie. capable of developing into many cell types, particularly blood cells) they are literally baby cells. As such, they are slower to engraft into the marrow, and once there, they take a much, much longer period of time to set up a viable and resistant immune system. During this period of time, the recipient of a cord blood graft is quite susceptible to the many infections which can arise spontaneously from within their own systems, or from outside sources. This is the scenario into which Steven is now mired, and this is the overwhelming challenge faced.

We managed to keep our appointment on Friday morning at the hôpital de jour. Steven had woken up with a temperature and by the time he was reclining in a bed in the clinic, his temperature had risen to almost 40°. Luckily, this temperature crisis coincided with our weekly rendezvous, so we did not have to be traumatized by another ‘Urgences’ experience. Dr. Robin and Julien (interne) were on duty. It was immediately proclaimed that Steven would be going nowhere outside of the hospital until they had found the source of this new infection. Their best guess was the lungs (quelle surprise!) or the central line (again quelle surprise!). The waiting game and the related high stress factor were once again shot into motion. By late afternoon, Steven found himself back in Coquelicot 5 (pneumology) wired up to a variety of antibiotics, being fed through his arm because they could not use the central line due to the threat of a lurking infection which could then potentially be pushed through into his blood. This is very awkward as Steven literally has no veins left in his arms and they have to best guess their location in order to insert the transfusion line.

A scan was performed yesterday morning. The latest opinion is that he has recurring pneumonia in his left lung. This may be residual from the last bout (a tiny spot that remained undetected the last time they looked around in his lungs) or a new outbreak of the same old problem. Another bronchoscopy may be in the offing on Monday morning.

At the moment, Steven is fever free since Friday evening. He is doing a lot of sleeping and is slightly confused, mostly due to the morphine intake, I feel. Here in pneumology, they have told Steven that this is not a serious bout of pneumonia. Matthew and I need to check this out further, but that means waiting until Monday when a full staff is available and we can have an appointment with one of the consultants. The strange thing is that during all of his lung complications, from lung herpes to this third tangle with pneumonia, Steven hasn’t even had a cough. Once he receives antibiotics, his fever drops and he doesn’t even appear to be ill.

So, once again, we are thrown back into the hospital routine and, as you all know, Steven hates being in the hospital. We also have the dilemma of what to do about exercise. Being confined to a small room, even for a short period, is not going to help his back problem and will only further weaken his muscles. He is not allowed to go ‘walk-about’ at the moment.

With double matches of rugby scheduled for both yesterday and today, at least there is something to watch on TV. In the absence of the ‘cringe-making’ Irish (who seemed to have lost both the plot and the run of themselves throughout this championship) I say ‘Allez l’Europe!’ It would be nice to see a northern hemisphere champion.

From today, I will update this site briefly, but more regularly.

With love,

Evelyn, Matthew and Steven