DAY 29

Hello everyone,

Four weeks ago today, Steven was receiving his stem cells, feeling physically exhausted and sleeping virtually around the clock. He has come so far and negotiated so many hurdles in this short space of time, it is truly incredible.

Steven had Feargal's good company all afternoon today. There was a new game for the PS3 which Feargal had bought in Brussels and was good for some amusement. They also spent a considerable amount of time walking the hallways, foyer and grounds together. Feargal was as excited as the rest of us to be able to go outside with Steven. It just seems such a big step towards regaining health.

This morning Steven began being injected with insulin via an insulin pen. The actrapid insulin which he had been receiving daily has now also been removed from intravenous delivery. At the moment he is getting three shots daily and has to have regular checks on his sugar level. It's a matter of keeping a good balance between the blood sugar and insulin intake. The whole process is as painless as it can be, but the fact that it has to be done so frequently makes it rather tedious. Steven is not too bothered by the process itself, but dislikes having to keep a careful eye on what he eats. Currently, his diet has sugar and salt restrictions – no chocolate mousse or ice cream allowed for the moment at least! Hopefully when the corticosteroids are reduced in the long term, his body will return to being able to process sugar normally.

Steven's mind is now turning more and more towards what happens after he gets out of hospital. He is really delighted that his release is now looking like a definite plan for the near future. He understands, however, that his daily life will remain curtailed in many respects. Even with a very decent white cell count, he will still be susceptible to infection while he continues taking immunosuppressants. Even given a fully reconstituted immune system, his body's natural immunities will be quite infantile and his defences will need to be gradually built up over time. For example, Steven will eventually need to receive all of his vaccinations again as these will have all been obliterated during his transplant conditioning. Things will have to be paced quite slowly initially and I think it is going to be very hard for Steven to accept this aspect of his recuperation. However, as we all know, throughout this whole experience Steven has been nothing if not intrepid and he has learned that determination paves the way toward success – so, onwards and upwards as they say!

Today, Steven's white cells were 3,800, with haemoglobin of 8.3. Platelets were low, so they were preparing a transfusion for either later today or tomorrow.

Feargal will return to Brussels tomorrow evening but will be replaced by my wonderful niece Aideen who is coming for the weekend to entertain us. No pressure Aideen!


Love to all,

Evelyn, Matthew, Steven and Feargal