THREE STEPS FORWARD TWO STEPS BACK

Brendan, Richard and Anna visited Sydney Children's Hospital (Randwick) on the 29th of November. We flew to Sydney in the morning and returned later the same day. While we were in Sydney we met with the Nursing Unit Manager of the kids cancer ward, the Transplant

Coordinator and a Social Worker. We had a look around Ronald McDonald House. There are families from all over Australia staying there, including two from Adelaide and two from Asia currently living in the house. We also got a good look around the Transplant Ward and a small look at a Transplant room. At the end of the day we met with the Transplant coordinator (Tracy). Tracy discussed the issues, concerns and the realities of what is involved when a child is having a bone marrow transplant. Some of the issues around transplants is confronting and distressing. We walked away feeling very shell shocked.

Brendan has a bone marrow donor who is a good match in the USA. The donor is at present having blood tests done to ensure they are a good match. If the donor does not come through, there is some cord blood in storage that is also suitable for Brendan.

Brendan's diagnosis is still an issue. He has 4 doctors with 4 different views on what is happening to Brendan. He may be the only child with his group of symptoms. The words rare and unique are starting to wear very thin.

We are at the point where we want all the doctors to agree so that we can make the right choices for Brendan.

If all goes to plan Brendan will be in Sydney in mid January to begin his treatment in preparation for the transplant. Our time in Sydney will depend on many factors but a rough figure of around 100 days after transplant is what we have been told is the likely length of stay.
Brendan will have another bone marrow biopsy on Wednesday to check what his marrow is doing (this will probably only confuse docs. even more).

We will let you all know more as things unfold.

Cheers from Brendan, Anna, Tara, Kieran and Richard