DAY 60

Dear everyone,

Sunday, Day 60 – again time has drifted and I am a little delayed in relaying the latest happenings.

Last week was a really good week for Steven. We spent the morning at the hôpital du jour on Wednesday. Really, things went very well there. We met a new doctor, Dr. Lissandre, who was young and just lovely. She spent a considerable time with Steven, was really thorough in her approach, and was keen to answer any questions we had – in my opinion, the latter is a crucial factor in any good patient/doctor relationship. His blood counts were all in a good range, although he did need a platelet transfusion. The liver enzymes were down and thus showing more stability. They decided to reduce the steroid intake another little bit, and also the massive daily doses of magnesium and calcium which he had been taking to counteract the negative toll the steroids take on the bones. This medication is highly fizzy and extremely acidic, so much so that Steven has had a permanent sore throat from taking it – he was so delighted that he now only has to drink this once, as opposed to thrice, daily. Dr. Lissandre’s conclusion was that Steven was ‘cliniquement parfait’ (clinically perfect) for this stage of the proceedings.

We also had a session with the endocrinologist to discuss the insulin/sugar balance and his diet as a whole. At the moment, Steve is 66kilos, but should really be about 70, which is normally where his weight hovers. Trying to keep his glycemia in balance limits his ability to eat what he wants and consequently increase his weight. This was another lovely doctor, just back from her Connemara holiday, who made very helpful suggestions to solve this particular problem.

By 2:00pm, Steven was finished in the clinic, which happily coincided very neatly with Ellen’s arrival from Brussels. During the week, they’ve been out walking when the weather permitted (still awful!), but mostly just hanging out in the apartment, relaxing.

On Friday evening, Matthew and I headed to Brussels for the weekend. We wouldn’t have been able to do this without Ellen being there, as Steven cannot be left alone for any lengthy period. We felt it might be nice for Steven to regain some feeling of independence for a bit, and for him and Ellen to just follow their own routine without having to take us into account. Back in BXL, it has been a weekend of strenuous work for us as our main task was to remove the layer of moss and algae that was covering virtually 2/3rds of the roof of our house. Now, normally we are not so house proud to perceive this as being an actual problem – it’s really ‘algae of ages’ that has accumulated over eons. The difficulty only arises with Steven’s looming return home (hopefully in October). He should not be exposed to algae as his compromised immune system could leave him susceptible to fungal infections of the lung (aspergillosis) which may be induced by exposure to algae. As Steven inhabits the entire attic area, when residing at home, the algae simply had to go. Large quantities of highly toxic chemicals, ladders, brushes, sponges, buckets later – hopefully you’re getting the picture – the algae is now no more, but boy are we tired!
We will return to Paris tomorrow evening, where, by all accounts, things seem to have been fine in our absence.

Until next time, love to all,

Evelyn, Matthew and Feargal