DAY 19

Well, the moment we had been waiting for arrived – the 'iron curtain' has been lifted and Steven is once again wholly visible. Word had it this morning that they were going to remove the total isolation restriction today. Matthew was doing the lunch run and they told him they would wait until 'the mammy' arrived before the grand dénoument would occur. At about 3:20, two nurses came in to ceremoniously unveil Steven. Now those of you who know Steven best will understand that he treasures the knack of looking completely underwhelmed during what should be key moments in his life. Today was no exception, although he did manage a subtle wave. Naturally, I was excited enough for both of us. Such a small thing on the face of it, but really huge if you've been living entirely in that small enclosure for nearly three weeks.

Blood counts remain good today. The white cells came in at 2,500. This is a decline, but they believe that there had been an error (it sometimes happens) in yesterday's incredibly high count. Haemoglobin continues to be stable. Today we had our first measurement of neutrophils. This is a particular type of white blood cell that specifically fights infection. Steven's count today was 1,900 (normal range 2,500-7,500). This is higher than it has been in two years. Suffice it to say that when Steven had pneumonia in May, his neutrophil count was 200. Once below the 500 mark, there is a massive risk of infection.

Matthew and I met with Dr. de Latour this evening. He insists that we shouldn't get too bogged down with all of these blood counts and numbers as they will fluctuate naturally from here on. He feels that what is important is a consistent upward trend, which is what we're seeing. He says that for a cord blood transplant, this has been a fantastic response.

There are still ongoing concerns. Steven's liver enzymes are now quite high. This is something they are never happy about. They are also increasingly apprehensive about the redness of his palms. Their main worry is that this might be the beginning of graft versus host disease, or perhaps another infection. Both of these are cases for high priority monitoring. De Latour is less concerned about the lung herpes, the central line infection and kidney situation, and feels these are well under control. He explained that their plan is also to greatly reduce the cyclosporine medication to eliminate the leg pain and discomfort, which was ongoing during the night and today.

Feargal has arrived this evening. Good!


Love as ever,

Evelyn, Matthew, Steven and Feargal