HOLIDAY FUN

Hot chocolate after playing in the snow Swimming on the South Coast of NSW

Building a snowman on a mountain in Thredbo

Soon after we returned from holidays, Brendan had his 7th bone marrow biopsy. A few days later we were told that Brendan's marrow is worse and his blast cell count has risen. Brendan's doctor is going to talk to his colleagues at a conference in Denver to see if they have any ideas. The hospital is also going to run another marrow match to see if anyone compatible with Brendan has come onto the bone marrow register in the last 6 months. It looks like Brendan MDS is progressing into Acute Myeloid Leukemia. Brendan needs a bone marrow transplant.
The big question is when and where. Adelaide is still not accredited for non-familial bone marrow transplants and Brendan's doctor is talking about Sydney (Sydney Children's Hospital in Randwick). His doctor is still not happy with the cord blood match we have in storage for him. If we don't find a better match then we will use the mismatched cord blood if we need to. A better match would give him a better chance of survival and a reduced risk of life long complications due to his treatment.

Tara and Kieran's school (Cabra Dominican College) is organising a Red Cross unit to come to the school. The unit will be available to anyone who wants to give blood and/or wants to become a marrow donor. We cannot thank Cabra (and a special teacher called Michael) enough for their support. Parents and teachers at Brendan's school (St Bernadette's) are also enthusiastic in wanting to help us find a better donor match for Brendan.

On November 4th, Brendan, his Camp Quality companion and about 255 others are having a week of fun and adventure at the Gold Coast Theme Parks. Brendan will have his companion Shaun with him the whole time. Mums and Dads are not invited. Brendan is really excited about his trip and is counting down the sleeps until he leaves. Brendan says that "he will have heaps of fun".

Although Brendan is still enjoying school, he often struggles to get through the day but is academically keeping up with other children his own age. He has a large pile of cushions in a corner of the classroom where he can rest and have a nap if he needs to. Some days the struggle is too hard so he comes home to rest. He is also good at using his illness to get out of things he does not want to do. Brendan doesn't realise that his teacher is on to him. You can really tell how Brendan is feeling by his body language and the expression on his face. When he is feeling unwell he seeks constant physical contact and reassurance (he sticks to you like glue). Even with these clues, it is difficult to know how he feels day to day. We try to keep everything as normal as possible and the expectation is that he attends school as much as he can.

For now we have to wait for Brendan's doctor to return and for his cytogenic results before anyone can make any decisions.

We will keep everyone posted.

Cheers from Brendan, Anna and family xxx