DAY 200+

My final entry

Brendan October 26th 2008

Brendan is now well past day 200. I have kept track of the days up until day 200. Now we can talk in months instead. Today is 7 months since transplant day. Brendan's last stay in hospital was in early August. His health has improved dramatically since then. He is putting on weight (thanks to his addiction to Nutella) and is growing. Since August he has put on nearly 3 kilos, he looks like a regular little boy with rosy checks but with very skinny legs. He had his first haircut since losing all his hair from treatment. His hair is a lot darker and softer and is very shiny and wavy.

Brendan has had some full days at school and is now enjoying going all day. He is re-establishing friendships and is fitting in. He had lost the normal social skills that 7 year old boys should have and fitting in back at school has been hard. He was very lost to begin with. Brendan is a much happier little boy. He rarely complains about feeling unwell. He is feeling and looking better, even when comparing him now to how he was when he had his bone marrow disease before he commenced treatment. He has had no fevers of unknown origin or any of the autoimmune symptoms he used to have. The doctors kept telling us all he needed was some new bone marrow. Too bad it is such a difficult thing to replace.

Brendan has fortnightly oncology check ups. His blood counts are all in normal range and all the other things they observe like his spleen and liver size are all normal for someone his size. We are hoping to extend the time between check ups to 3 weekly soon. Over the past few weeks Brendan has had some health problems. He has had an antibiotic (Bactrim) resistant bug living in his bladder. He is now on the right drugs to destroy the bug.

He had a day in hospital on Thursday so that the respiratory team could look at his lungs using a scope. They also flushed out his lungs to try and find out if there is a bug in his lungs. Brendan has a very wet cough and a chest that crackles. We are trying to find out if it is a bug or if it is damage caused by his radiation treatment. He has had the chest issues since his transplant. I hope to hear if something has grown in the lab in the next few days. Even though Brendan looks so well we seem to still have a list of medical specialists who see Brendan on a regular basis. Every time we look like dropping an appointment someone else adds another to our list. This week we are sitting down with his doctor and making a plan as to what Brendan needs now and what he needs in the future.

Brendan's hearing was affected enough such that he needs hearing aides. He has bilateral aides in bright colours. Without them he has a lot of trouble hearing. He is meant to wear them all the time. He wears them at school but tends to take them out at home and forget to put them back in. We all have had to adjust to his hearing loss. Brendan has trouble hearing when there is background noise or if he is not near you. I have to constantly remind myself to talk to Brendan so that he can hear me. If you don't you find yourself constantly repeating yourself. We are looking into getting him an auditory hearing system for his classroom. This will help stop the background noise and make it easier for him to hear in a group environment.

Brendan is no longer a child with cancer. He is in remission and is a survivor. Survivorship is a journey unto itself. If Brendan's cancer does not return in 5 years then he is cured of his original cancer. If it does return or he develops another type of cancer then he begins a whole new journey. Sadly there are no guarantees for Brendan but there is hope that he will remain cancer free. Brendan will need specialised health care for the rest of his life. The chemotherapy and radiation that Brendan was given puts his body at risk of so many other problems. Many of these problems may not occur or will occur later in life. We really ravaged his little body and I hope there is a future that does not require children to be irradiated from top to toe. The list of potential problems is very daunting and very frightening. We hope that Brendan has as minimal as possible problems from his treatment. We still have to be careful with germs. Brendan will remain at risk for many more months. The big bonus is that he now has plenty of neutrophils and white cells to attack any nasty bugs that come his way.

Brendan has been an amazing patient. He has shown courage, resilience, acceptance and strength throughout the past year. The has coped with everything that has been thrown at him and has come out the other end as a happy little boy who enjoys life and is planning for and looking forward to his future.

Thankyou to everyone that has helped us over the year. So many people have helped us in so many ways. Thankyou to all our family and friends and to all the organisations who have supported us and continue to support us. Thankyou to all the people who have prayed, wished and hoped for Brendan to get well. Thankyou to all the wonderful medical staff who cared for Brendan in Sydney and in Adelaide. A friend of our says "that a child with cancer needs a community to get better ." This is so true. We made some new friends and become part of a community that we never thought we would be part of. Sadly we have met families who have lost their children to cancer. We have also met children who are well, happy and well adjusted little people who have won the fight over cancer and are getting on with life.

Thankyou to everyone who made the time to read Brendan's journey. I have enjoyed writing it and sharing with everyone the sometimes very hard journey our little boy has been through. For now we need to look forward and continue to hope that Brendan's next journey will be a lot easier than the last one.

Love from Anna, Richard, Tara, Kieran and Brendan.

YESTERDAY IS HISTORY

TOMORROW IS A MYSTERY

TODAY IS A GIFT