DAY 19

The removal of Brendan’s central line has made a great difference. He has not had a fever in three days and is looking a little better. The doctors are beginning to reduce his pain medication as he is always sleeping and Brendan keeps saying when he wakes up that he is tired. The trick is to balance his pain medication so that Brendan's pain is managed but not so much that he is always ‘stoned’, so that he can spend some time playing and chatting. Brendan’s room is strangely quiet and I miss our chats. When he is awake he has been enjoying making Lego ‘Exoforce’ characters with Richard and myself.

Brendan’s doctor told me today that hopefully Brendan is over the worst of the transplant and that he is now well enough to begin making white cells. Brendan will remain in isolation until he has a neutrophil count of 0.5 for 3 consecutive days. Presently his neutrophil count is 0.0. Neutrophils are a type of white cell that ingest and destroy bacteria. There is still a long road to travel. He still has to reach 'engraftment', (he is still engrafting). We also have to see how his body reacts to engraftment and see to what extent his body will try and reject his new marrow. For now we sit and wait. His doctors hope that he will be feeling a lot better by next weekend. Brendan's white cell count has continued to rise and fall. His count has remained low as many of his white cells he had have been busy trying to fight off his central line infection. Today's count shows a trend towards his count improving daily.

Although I was told by several doctors that Brendan would lose all his hair, to date he still has a small layer of soft and fuzzy hair all over his head. He has no eye lashes but still has eyebrows. He looks very unusual without his eye lashes. He is still very bloated from fluid retention and is on an average of about 20-40 drugs a day. The amount of drugs will be reduced as Brendan improves. A lot of the drugs will become oral once he can tolerate food in his stomach. This will mean less beeping pumps in Brendan’s room. A friend visiting said we should put a close-up picture of Brendan’s pumps on his blog as it was unbelievable unless you saw it in person.

Brendan spends a lot time sleeping at the moment. His movements are confined due to the large amount of tubes attached to his lines.

Next to him on his bed is a Lego creature he had made with us.

KIERAN and TARA arrived on Saturday. They will be staying with us for the at Ronald

MacDonald house until we go home. It is still impossible to make plans in relation to the amount of time we need to spend in Sydney. Tara and Kieran will attend the hospital school and will continue with their school work from their high school in Adelaide. Over the holidays, we plan to explore Sydney with the older kids. They have never spent much time here. Tara is going to return to Adelaide for a week to attend an Alice Springs Tour with her choir from school. Richard and I have adjusted how we spend time in the hospital. The parent who sleeps in Ronnie Mac house will care for the older kids that day and we will change over in the evening. The nights with Brendan are too exhausting to then try and be rational and reasonable with two teenagers. We are going to spend the next week readjusting our lives so that we can all work together and help make Brendan's time in Sydney a little more fun. Hopefully he will feel well enough soon to enjoy Tara and Kieran's company.

Will keep you all posted

Love Anna