DAY 121

Dear everyone,

It's been a while, I know, but there have been no real developments to report since Steven's return home. There have also been difficulties with accessing the blog site which kept crashing every time I tried to do a posting. The problem is now solved - something to do with spy ware apparently, although this was not entirely obvious at the outset. Anyway, here's the update.

The HAD have continued with their twice daily visits. On Monday, Steven had to go back to St. Louis for a platelet transfusion as he still requires these approximately twice weekly. Tuesday saw yet another lung scan which involved a trip across town to another medical facility outside of the hospital. They were quick and efficient, so no complaints. During the week, he has been out and about doing some short walks and spending some quality time on the exercise bike. The low grade fevers have also remained a feature. On Wednesday, Steven's temperature peaked at 38˚, while yesterday it hovered around 37.7˚. This morning he again awoke to 38˚. The pattern seems to be – a morning high, followed by slow descent during the day – I'm not sure that this is of any significance in itself.

Yesterday, we had our weekly rendezvous at the hôpital de jour. They did some pretty extensive blood tests which normally form part of the 100 day check up. A main focus of these tests is to ascertain how his new immune system is developing – 'not too well', they suspect, as there have been so many problems with post-transplant infection. There is a plan to follow up with some further tests next week to provide an update and a benchmark as to how things are progressing at this point in time. Steven received another platelet transfusion yesterday and his haemoglobin level continues to drop relentlessly. His white count was also down dramatically. While it is important not to focus too intently on this 'number game', the reality is that Steven's new marrow really needs to start producing across all varieties of blood cell and in greater numbers. A real sign of progress would be transfusion independence which still seems to elude him.

During clinic, Dr. Nguyen visited to say she had looked at the lung scan and found that things had improved with the mysterious lesions – so, no bronchoscopy. Steven was mightily relieved! She wished Steven well and hoped never to see him again in pneumology! We really hope so too!

The day clinic was a little disappointing this week as Julien seemed to have been abandoned there to run everything single handedly. Julien is an interne who has a habit of looking baffled and nervous in equal measure. He compensates by being a real sweetheart and is ever so helpful. (I'm sure he'll make a great haematologist one day: he just needs experience.) We arrived at clinic at 9:30 and weren't released until 5:30 – this was the longest and dreariest it's ever been and with the least feedback.

Matthew and I also went to view an apartment yesterday. It is two bedroomed, quite spacious, overlooks the Canal St. Martin, and most importantly it is literally around the corner from the hospital – less than five minutes walk. It really has everything we need, so we decided to take it and will move in there tomorrow afternoon. Our lease on this particular rental will run until December 21st. We are wishing to be homeward bound at least by the Christmas period as it is highly unlikely that a return to Brussels will be possible before then.

That's about all revelation-wise for the moment. We are wishing that Steven remains fever and bacteria free and that his marrow will just leap into action any day now - we know that you are all wishing the same.

Love to all,

Evelyn, Matthew and Steven