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

6th of September

DAY 164

It has been 5 months since Brendan's transplant. Our happy, cheeky little boy's personality has returned.

Brendan has been attending school on a part time basis for the last few weeks. He is at the point where I can leave him without him fretting. He is really enjoying school and will now be staying until lunch time. He really wants a lunch from the school tuck shop. Between medical appointments and school, Brendan's days are becoming busy and fulfilling. The medical appointments are always long and often drawn out. He seems to be coping better with all the waiting again. Thank goodness for hand held games. What did children use to do when they were constantly waiting at medical appointments? His moods are also a lot better. He has gone from several tantrums a day to the occasional one. This morning he had one and when asked why, he said: "I still have problems controlling my emotions".

While we were in Sydney, Tara was an extra on "Home and Away". She will be on TV on Monday 15th and Friday 19th September. If you blink you might miss her. She is an extra in the cafe in both scenes that she appears in.

On Friday, Brendan had his first visit to Australian Hearing. He has been assessed as having a moderate to severe hearing loss. He has had moulds taken of his ears and will have his new multicoloured hearing aides in two weeks. Being at school with Brendan has really shown me that Brendan has quite a bad hearing loss and often misinterprets what has been said to him. He continues to have problems with his sinuses and lungs. We removed his nasogastric tube to help his sinuses. This helped a little but still not enough. He is on a medication regime to try and fix his nose. His chest remains a source of worry. He has an amazing cough and his lungs are full of 'crackles'. We hope that once the sinuses are cleared up that maybe his chest will too. If not then he needs to see another group of doctors for his chest.

Brendan is very excited about his up coming Camp Quality camp. He will be away for the first week of the holidays with his companion Shaun. This time his camp is a local one and only 15 minutes from home. This means if he needs us for any medical reasons we are no too far away. Camp Quality have also helped us by letting us use their local caravan for a week in the summer holidays. The park is on the beach and only 20 minutes from home. As Richard has almost no holidays,we can still have a break and Richard can come home and feed the dog and pick up the mail on his way to work.

Overall Brendan is doing well. He is happy, cheeky, loud and causing his usual chaos with his brother and sister.

Talk to you all again soon.

Love from Anna

BRENDAN'S 7TH BIRTHDAY

Brendan turned 7 on Thursday August the 14th.

He celebrated with a special Chinese dinner of dumplings and pork buns and a chocolate birthday cake with his family. Brendan chose the dumplings and pork buns for his special dinner.

On Friday Brendan spent 2 hours at school. He shocked his teacher and I by standing on the stage at assembly with all the other children who had recent birthday's while the school sang happy birthday. He even said his name and age into a microphone. We then celebrated with his class with a number 7 chocolate birthday cake. On Sunday Brendan celebrated his birthday again with a chocolate castle cake with some of his Adelaide relatives.

After another hearing test and a visit to an ENT doctor it is clear that Brendan has significant hearing loss and needs hearing aides. We are waiting for a referral to Australian Hearing who will fit and supply and take care of Brendan's hearing needs. He will need hearing aides for the rest of his life as the damage done to his ears is permanent.

Brendan's blood counts have been very good this week we only need to go to the hospital for one check up. Brendan has been putting on weight and even growing a little in the last week. His stomach is a bottomless pit. After months of not eating wanting to eat all the time is taking some getting use too.

Our plan is for Brendan to attend school as much as possible. I will stay with him for a while and be there in case I am needed. When the teachers feel Brendan is ready I will leave him at school just like any other kid. Brendan needs to get back to school ASAP so that he can begin reestablishing friendships.

We are dealing with a lot of anger from Brendan at the moment he can throw a huge patty when he wants. I think that as he has energy for huge patty's we need to help him us his negative energy towards something more productive. He doesn't know where this anger is coming from. He has every right to be angry.

For now Brendan is doing well. All we can hope for is that this will continue. We expect many hiccups as Brendan's new immune system develops. Unfortunately you have to get sick to get a better immune system.

Hope everyone is well

Love Anna

HOME AGAIN

11TH AUGUST

Brendan came home on Saturday. All up we had 2 weeks in hospital. Brendan is tolerating his new milk feeds well and has energy again to chat and play. Today he is saying he is hungry and is asking for food.

His doctors are very happy with his blood counts and have suggested we start having weekly check ups. We will wait to see if this will happen. On Thursday we will have Brendan's hearing further investigated. Hopefully we will have a better idea of how damaged Brendan's hearing really is.

Brendan's doctor told us that his new marrow has the same DNA as one of the cords, which is good news as this shows that the transplant is successful and Brendan has brand new marrow. "Out with the old and dodgy" I say.

Brendan is very excited about his upcoming birthday. He is counting down the sleeps. It is lovely to hear Brendan talking about his future.

Will keep you all posted.

Love Anna

7th of August

We didn't go home as planned and are still in hospital. We are all working hard to get Brendan well enough to go home on the weekend. Brendan's diarrhea is not caused by Graft versus Host but by a nasty gastro bug called Rotavirus. On the Monday we were due to go home, Brendan looked worse, was losing what tiny amount of precious weight he had and was feeling too unwell to want to go home. The doctors put Brendan on complete gut rest and started him on TPN (Total Parenteral Nutrition). All his fats and vitamins and minerals are given to him through his vein. Thank goodness we put the Pic line in. Within 24 hours of TPN Brendan started to look better and 2 days later we are talking about getting him back on overnight milk feeds and home on the weekend.

We have been able to stop Brendan's anti rejection drugs as there is no sign of Graft Versus Host. It is great to be able to stop the drugs but he still remains on a lot of prophylactic drugs as he will remain immunosuppressed for another 6 to 12 months. We are making plans to take a birthday cake to Brendan's class next week. It has been a long time since he has seen his friends. Brendan's name has been called on the class roll everyday this year and everyday his little friends reply "Brendan's not here today". Brendan wants Mum to make a number 7 cake to share with his class mates and a castle cake with a dragon as his special cake to have with his family. All we need to do is get home so we can get busy baking. Hopefully our next bit of news will be that we are back home and outpatients at the hospital again.

Will put some photos up of Brendan's when he is 7.

Love to everyone.

Anna

ONE HOUR LATER

Went out for a walk while Brendan was having a nap. Found out when I returned that Brendan does not have Rotavirus as it was a 'false positive'. This at least means that we are out of isolation. Unfortunately we cancelled his small intestine biopsy due to the Rotavirus, so now we are back to not knowing what he has and is still causing the horrible diarrhea. We seem to be having one of those weeks where everything is a little upside down. Our concern is that Brendan's treatment has caused damage to his intestines. The roller coaster ride continues.

Love Anna

3rd August

Brendan has been in hospital for 9 days. A CT scan discovered he had sinusitis. He has started on appropriate antibiotics and nasal washes and drops to clear up the infection. He will see the ENT doctors in about 2 weeks to establish how much hearing he has lost and what needs to be done for his hearing.

On Friday Brendan had a bowel biopsy. We are awaiting the results. If the results are positive Brendan has Chronic Graft Verus Host of the gut and will need to go on immunosuppression drugs. Unfortunately these drugs mean that every time Brendan is unwell it will mean a trip to hospital. I long for the days when a panadol and a day off school and he is well again to come into our lives. If the results are negative then the reason for Brendan's terrible diarrhea is not really resolved. It could be the antibiotics or just the large amount of drugs he is on I just hope that we find out very soon.

Brendan has not been an easy patient over the past week. His doctors are concerned he is depressed. Our plan is to try and re-establish friendships as soon as possible. Brendan needs some one to one kid time. Brendan has not played with another 6 year old in 7 months.

There is talk of us going home tomorrow but we are not holding our breath.

I hope we are home really soon.

Love Anna.

JULY 29TH

Brendan and I did get to Kung Fu Panda together. We went on a school day and shared the cinema with 3 other people. Afterwards we had a look at toys in Target. It was really nice to get out together and do something that was fun.

Last Friday Brendan was admitted back into hospital as he had a fever and was feeling unwell and not eating. Today is Tuesday and nothing has really improved. He has high temperatures and bad migraine headaches. Today he had another line placed into an arm vein. This is called a pic line and lasts about 6 months. Brendan has become very anxious about blood tests and has had several botched attempts at cannulas in his arms. He is finding it more and more difficult to deal with invasive tests. He is also finding it difficult when doctors tell him one thing and then change their minds and do another, or the situation changes and he needs to have tests done that were not required the day before. Everyone needs reminding that he is only 6 years old and sees the world in black and white. The pic line in his arm will elevate a lot of these problems as he can have his blood tests and be given fluids through the pic line.

The staff on the ward have been kind to us and given us a room with a view over a park, which they know I love. You can open sliding doors and let the sounds and smells of the local area into your room. It also means you have more control over the room's temperature.

For now we will wait to see what the tests results show us. Tomorrow Brendan will have a CT scan to check his body for any inflammation. It's hard to believe that less than a week ago we started talking about sending Brendan going back to school part time. That is still a little way off at the moment.

Hopefully the docs will find something soon and we can get our little man home and feeling better soon.

Love to everyone Anna