DAY 56

Brendan has moved rooms in the ward. He has engrafted and no longer needs to be in a transplant room. He is still in isolation and has a room and bathroom to himself. The new room number is Room 8. Please do not use the old number as another family will be using the transplant room.

Our new phone number is: 02 93821746.

Brendan’s fevers have continued constantly for weeks. All the cultures, biopsies and tests have come back negative. Tomorrow Brendan will have a bone marrow biopsy to look at his new marrow. This is to check to see how things are going and whether there has been a return of the MDS. Brendan’s doctor does not believe that the cancer has returned. The biopsy is to put all our minds at rest as to why he is continuing to have fevers and to help his doctors decide what to do next.

The next place to look for the cause of the fevers is the drugs he is on. The two main drugs he is taking are to stop him from rejecting his marrow. One of these will be stopped soon due to Brendan engrafting. The question is, will either of these medications be positively identified as the culprit behind his never ending fevers. While Brendan continues to have fevers, it is very difficult for him to really feel any better.

One of the Dad’s from Ronnie Mac house described our lives as ‘Ground Hog Day’,
(that movie with Bill Murray). Every day we wake up and everything is the same over and over again.

We all hope that very soon we will have the answer to Brendan’s fevers. He is still very down and I have asked for the hospital psychologist to get involved. Brendan seems to be stuck and cannot see his way out of being sick. He is starting to watch a bit more TV and enjoys seeing Tara and Kieran. He doesn’t have the energy to do much else except sleep and rest. Hopefully, by the end of the week, we will have a better idea of what can be done to stop these horrible fevers.

Will post on the blog with any news
Love from Anna