A LITTLE BIT OF HOPE GOES A LONGGGGG......... WAY

Brendan saw his oncologist (Tom) on Thursday. He had some good news for us. Brendan's marrow is stable and his blast cell count has not risen, we are still waiting for the results of the genetic testing on his marrow (this seems to take weeks). The way things are looking at the moment, is Brendan can keep going as he is without us having to intervene. We are going to try and reduce his steroids to zero by Christmas as he is having long term complications, Brendan has not grown (at all) and is struggling to keep his weight up for the last 6 months.

Some of the best news we have had in a while is: the Adelaide Children's Hospital has just completed it's first non family member cord blood transplant. If the transplant goes well the hospital will review how it went and then re apply for accreditation to be a non family member transplant unit. If they are accredited we will not have to go to Sydney for Brendan's transplant but be able to stay in Adelaide. Brendan will have the same doctors who have cared for him for some time and a lot of the oncology nurses have got to know Brendan quite well. For us as a family and for me particularly this would be the greatest bonus in this not so great situation.

Brendan's doctor has also asked me to be involved in a parent oncology advisory group. Because Brendan does not have a tumor or leukemia but a bone marrow disease I will be able to express what families like ours could benefit from. The top of my list will be for the hospital to be accredited as a non family member transplant unit.

Brendan continues to struggle will so many complicated and difficult health issues, but when you look at him he looks like a happy normal little boy. He has recently found energy that we have not seen for years. This week he attended school 4 full days and one half day, next week he wants to attend school 5 whole days. Brendan describes how he feels by using Pokemon descriptions of energy. He will run around like mad but suddenly stop and drop to the ground, when you ask him if he is alright he tells you he is getting his energy back. He will sit and rest regain his energy and then be off again. He no longer complains of feeling sick most of the time, but explains how he is feeling by his energy levels. The older Brendan gets the easier it is for him to put into words how he is physically feeling.

It has been nearly a year since Brendan was diagnosised, the emotional roller coaster is easier to deal with and the feelings associated with Brendan illness though not always logical are easier to understand. I hope we all get a bit of a clear run and can get a break from the worry for a while. We are all looking forward to catching up with friends in Thredbo NSW and I am especially looking forward to getting away from the house for a holiday. Brendan does not have to have another marrow biopsy for about 4 and half months, this means we can go away and forget the yuk for a while.

Hi to everyone

Love from Anna

IT'S JULY ALREADY

Thank you to all the people who have asked us how they can become a bone marrow donor. Brendan still does not have a marrow match. Sydney has run a second search but unfortunately a more suitable match has not been found. They are doing another search to find some more cord blood. The plan at the moment is for Brendan to have a double cord blood transplant. His doctors are still not happy with the matches we have and would prefer a better (closer) match.


Brendan will have his 6th bone marrow biopsy next Wednesday. The hope is that his marrow is still stable and that we have some more time. If his marrow is stable we will then give Brendan a longer break between biopsies. Even though Brendan's blood counts are strange they too seem to be stable. He is overall happier, is in a lot less pain, has not had a fever since April and is being weaned off the steroids. The anti inflammatory drug he is on seems to be working some magic.


We all seem to be adapting to living a life where no one knows what will come next. We are planning a family holiday in October and Brendan has been asked to a week long camp with Camp Quality to the Gold Coast in November. He is still attending school part time and is learning to adapt to the constant interruptions to his schooling. He always amazes me at the amount of strength and courage he has when it comes to medical tests. It has nearly been a year since Brendan's first biopsy. The shock and distress are fading slowly. The doctors make sure that they remind you at every visit just how life threatening Brendan's illness is. I have asked one of the doctors to stop focusing on Brendan dying and start considering what we see today and for the next few weeks. Brendan does not feel he is missing out on anything and is a very happy little fellow. He looks forward to all the things other children look forward too. He knows he is sick and has cancer, but thinks that going to Sydney for a transplant is a exciting adventure.

If anyone is interested in becoming a marrow donor please visit the Bone Marrow Registry. For more information look at Brendan's Friday the 22nd of September 2006 blog. Ideally (in the perfect world) Brendan would have a better match and one that is from bone marrow.

Hope everyone is well and a big superhero HELLO from Brendan.