Brendan's Journey

Friday, November 09, 2007

TRANSPLANT NEWS


Last week Richard and I met with Brendan's oncologist. We discussed Brendan's condition. Over the last 12 months Brendan's marrow has become gradually but steadily worse and his blast cell count is up. Brendan's doctor believes that we have no options for Brendan other than to proceed with a bone marrow transplant. Another search for a higher matched marrow was done, but sadly nothing compatible has come onto the register in the last 6 months. We are going to use the 5/6 cord blood match along with the possibility of an additional 4/6 match to give him a 'double cord' transplant ( to increase the volume of cells available) . The risks are more or less the same as a non-familial matched bone marrow transplant except that cord blood stem cells take longer to start producing their own blood cells. It also means that the chemo Brendan will receive will have to be stronger so that there is less of a chance of his body rejecting the cord blood that will form the marrow. The side effects of a transplant seem to go on forever. Some we with deal with immediately. Others will occur throughout his life. Fortunately the Adelaide Women's and Children's Hospital is starting a 'Late Effects Survivorship' Clinic that will support Brendan until his early 20s. They call you a survivor when you reach 5 years post treatment.


I thought I would deal with this better the second time around. Boy was I wrong. Having a child with cancer is a real roller-coaster ride of emotions. Mostly it is sadness and anxiety. Through all of this, Brendan is coping really well. He is starting to get angry at his disease and is trying to make sense of what is happening to him and his little body. I have organised some play therapy sessions for him with a psychologist who works with children with cancer. Brendan's platelets continue to fall and are at the point where serious health issues could occur now or in the near future. His immune system is OK as long as he doesn't catch any bugs. All bugs seem to cause a short hospital stay. Adelaide Women's and Children's Hospital has not received it's non-familial transplant accreditation so Brendan will be at the Sydney Children's Hospital in Randwick for his transplant.


The doctors are saying mid to late January. The co-ordination will depend on the availability of a transplant room and accommodation for Richard and I.


After weighing up the risks and the fact that Brendan will be ill for a long time, we have decided to take Brendan on his Make A Wish trip sooner rather than later. In early December our family will fly to Coffs Harbour for a week so that Brendan can swim with the dolphins at the Porpoise Pool in Coffs. The whole trip is supported by the Make A Wish foundation. We are all really looking forward to getting away together and spending some time and having fun with the kids. Brendan does not know we are going away so soon as he is spending a week on the Gold Coast having a Theme Park holiday with 230 other South Australian Camp Quality companions and kids.


Brendan has been ringing us each night and is having a great time. He rings each night busting to talk to Kieran and Tara about his adventures. His Camp Quality companion Shaun is with him 24 hrs a day. Shaun cares for all of Brendan's needs and makes sure they have a great time. Our house is a very quiet place and even the dog senses that something is not quite right. We all miss him and look forward to Brendan coming home on Sunday.


The next two months will be spent on organising everything we need to organise. The list seems endless and at times very overwhelming. The nice part is, because Christmas is not very far away, we get lots of fun invites to children's Christmas parties. We all had lots of fun attending them last year.


Kieran and Tara have become involved in Canteen and had their first outing on the weekend to an indoor water centre. In a few weekends time they are attending a new members camp. I hope that they get to meet and talk to other kids in our situation. Kieran is still very emotional about what is happening to Brendan and Tara continues to pretend that everything is fine. They both cope in very different ways.


SOME NEWS TO BE PROUD OF

Tara was entered into a maths competition by her school. Her paper was on diffusion. Tara won the state prize for the best project and we found out recently that she has also won the national prize for the year 9 division. Tara will be presented with a medallion in front of the whole school at her end of year celebration. We are very, very proud of her.


I will keep in touch as Brendan's journey begins to unfold.


Cheers from Anna.


1 Comments:

Blogger Michael O'Dea said...

Great to hear about your trip coming up. You all deserve to have some time out together. Keeping you in our thoughts and prayers. Let us know as things come up on "the list" what we can do to help.

9:50 AM  

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