BUSY BUSY BUSY

Time has flown since Christmas. Brendan has been at school for half a term and we are hoping that this week will be his first full week at school. Brendan is enjoying school.

Brendan has been involved in many exciting activities recently. He went on his first Camp Quality camp for 3-6 year year olds (no parents allowed) and had a ball. He had a great companion who supported him and cared for him over the weekend. At the end of March the whole family is going on a Camp Quality camp for a weekend. We will spend the weekend with 10 other families who also have children with cancer. In February we spent the day on a ship called the 'One and All'. This is a day organised by Camp Quality to raise money to send kids on camps.

Brendan,Tara and Kieran

at the Camp Quality Floatilla for Kids

The One and All

Brendan, Richard and Kieran spent a day at the 'Clipsal 500' races in Adelaide. This was the first time the boys had been to a car race. We were also given tickets to see 'Walking with Dinosaurs' which was amazing.


The most exciting thing for Brendan has been 'Make a Wish' visiting Brendan to ask him what he would wish for. Brendan wishes to swim with dolphins. After some confusion we worked out that Brendan really wants to get in the water, swim with and touch dolphins. Brendan's wish is being discussed with 'Make a Wish' and we will find out soon if his wish is going to be granted.


While all this great stuff happens around us and gives Brendan and his family some fun, the reality of what is really going on still hangs over us like a black cloud.


The bone marrow donor has definitely not come though. Brendan's name remains on the Marrow registry in the hope that a more suitable bone marrow donor can be found. There is some cord blood being tested at the moment to see if it is a good match and has enough good quality stem cells. The cord blood may be an altnerative option if a matched marrow donor cannot be found. The oncology team in Sydney is having a look at Brendan's Marrow biopsy slides to see what is and has been happening to Brendan's Marrow over the last 7 months.

There are many reasons why the transplant is taking so long. The risks associated with Transplant are too high to rush into treatment. Brendan's condition is stable at the moment and we are trying an anti-inflammatory drug to try and relieve some of Brendan's joint pain and fevers. We are told (sometimes too often) that the only effective tretment for Brendan is a transplant. Brendan's doctor in Sydney is ensuring that everything is as optimal as it can be to help reduce any excess risks associated with a very risky and scary treatment. We have to keep our fingers crossed that Brendan's MDS does not decide to turn nasty and make his marrow fail to produce the blood cells he needs, or that it turns into Leukemia. Brendan will continue to have 3 monthly bone marrow biopsies. The hardest part at the moment is that while we can give him supportive medication to help him feel better we cannot make him better (cure him)until we have been down the dark and scary road of transplant.

In the mean time we will get on with life and sit and wait in transplant no mans land. Brendan takes everything in his stride. While praying at school recently he informed his teacher that they needed to pray for him as he needed some new marrow.

Cheers to everyone
Love from Brendan, Anna, Richard, Tara and Kieran