Long Weekend!!!

Brody is doing really well as his levels are good and has started to become the old Brody. His nose hasn't been so runny this week and he is so much more active again. I haven't had him outside in this cold air as winter is the worse time for a transplant as there are so many more colds/flu and infections going around. This is the last thing we need as if Brody gets anything it will delay transplant again.

We were thinking of going back to Nabaic this weekend to spend some special time with Bill and Brody keeps asking to go back home, but poor Bill got a ear and chest infection and its just to cold up there to take Brody out. We will have many weekends to go back home after all this so another week away want hurt. Hopefully Bill gets better soon, as Brody wants pizza.

So for the rest of the weekend we are staying in and playing lots of games, sewing, normal routine work (as that happens every day), cooking, Wii, Ds and lots of indoor fun things. Hope everyone else has a great weekend.

Tribute to Sonya

Happy Birthday!!!!! 11/6/70 to 14/7/2008

Today has been a very sad day, as we celebrate Brody's Aunty Sonya's 40th Birthday. She was a wonderful sister to me and a caring Aunty to Brody and LUke. Sonya had just built a wonderful life with her husband David and twin boys Domenic and Ethan, when her life was struck down with a rare cancer. She tried to fight right to the end. We have so many good memories, but one memory that will live in my mind forever is when i nearly lost her 2 days before she passed. As she had what looked like a fit on me, and i had to hold her up while yelling out to the nurses. They told me to call the family, as i believe we did lose her that day, but she came back after getting oxygen. It was the most scary thing i have every been through.

Sonya will be sadly missed by all, and we love her so much, she will always be in our hearts xxxxx

Sad and Quite day!

Brody and i did his behaviour work this morning, which he did really well at. He still needs lots of work but has improved so much. I am very proud of all the work he has done so far. I still believe that he will have trouble at school, and hoping he will get into the special unit again next year, as if he gets expelled from kindergarten because of his behaviour, it is not going to help him in the future.

We then watched a special friend (Chantelle) get a make over from the circle on channel 10. She deserved it so much as she has two children with Autism and still finds the time to help us out. Thanks Chantelle, and you looked gorgeous. xoxox

After lunch, we popped out to my sister's grave to place some flowers and wish her a happy 40th Birthday for tomorrow. Brody helped me through this as he said "You miss Aunty Sonya", i said Yes, but will see her when i go to heaven. He then said " i will miss you then mummy, but Bill will look after me so just go". I had to laugh inside myself as he wants to get rid of me all ready. But at least he stopped me from crying. I just wish my lovely sister was still here, as i miss her so much.
I really regret some things, and one is when Sonya was sick, and here she was trying to look after me as my life had just falling apart. I should have been there for her not consumed in my own stupid mistakes. But i cant change the past, so i will make sure the future is better, for me and my family.

We also said hello to pop while we visited Sonya, and Brody told pop to come back as we miss him. The things children say, but it did help hold the tears back. Since i was little my pop was a big part of our lives, as we lived with him when our Granny Grey died, and then when he married Nan, we used to play tennis every week with them. He was a part of our family in every way right to the end. WE love you pop xoxox

Big day!

Today we had they lovely people from Autism Behaviour Intervention which was a long session for program reports. Domenic was also here to help play along and challenge Brody to do the work.

We also took a drive over to Pops house to collect his mail, with Grandma and GRandpa. It was nice to just get out and do something different without beening stressed. Then we come back home and watched tv and played games.

Its been a hard week, with lots of things happening and lots of things on. Its going to be good to have the weekend here with no more things happening.

Clinic Visit, Surprise NSW NRL team!!!

Today Brody has been very hard to manage and has been very teary. When Chris was hear this morning we had to put him in timeout for hitting twice. The boys were also hear but they went off to another room to do their homework. Grandma had to look after them today as there was a pupil free day.



After ABI we went off to hospital for our weekly check up, Every thing started well but then Brody acted up again for the doctor, which made it very hard as the Doctor was trying to work out what to do as transplant team had no contact with me yet. She called our other Doctor in and Brody had then run off and i lost him. Found him again and the doctor then had to talk to us in the hall way. She is getting transplant team on the move as Brody hasn't had chemo for over a month and his levels might be too high for them to do transplant. He also needs more tests done before hand.

After Doctor we had the NSW NRL team come to visit, which Brody wanted to stay but again he acted up. His bag made it on channel 10 news, as it was sitting next to Hindmarsh. We got to thank Hindmarsh for yesterday and he said hello to Brody but that was it.Again No photos. Brody told me that he just wanted to see them, well he did from a distance. But never again!!!

Thanks to everyone for understanding i need my time out and my mum's house is their house and they dont want visitors or even need people in their house, as they too have been through so much non-stop for the last 3 years.
Also thanks for respecting our timeout as this is a very hard time for me and Brody as beaning in hospital for 10 months about every 2 weeks and also having the memory of my sister's 40 birthday this week and her death next month. June and JUly is a very hard time and my emotions are high and i am very depressed deep inside myself. It has been hard and stressful as people have demanded things from me but this is our timeout and i thank everyone that understands this and visited us in hospital. xoxox

Eels Private Training Session!!!

The weekend was normal, stay at home wet days, but on Monday it all cleared up and we had lots to do. Chris from ABI come to do normal routine activities with Brody.

Then Brody and i got ready and waited for his cousins and Uncle Dave to turn up at Grandma's as we all went to Parramatta Eels stadium for our very own private session with the players. Thanks to our wonderful friend Jess who wrote in and organised it all for us.

The boys were all so excited, as Brody sits on his sit and yells out Go Parra!!! I am just glad he didn't yell out go Bull dogs as Bill goes for them and Brody keeps swapping teams all the time.

We got to watch them train for 1 hour, but as time ticked Brody's anxiety went up and up and he acted his normal self when there are strangers and not knowing whats is happening. Igot hit, pulled my hat down over my face and rubbing my face.

Brody ran through the seats, with me chasing, while the others went down and got photos and signatures. I got Brody down to the field where he crashed tackled me twice. It warmed him up to the team, and then he went up to the players that were left and got his photo taken with Hindmarsh and got some signatures on his shirt. I have a respect for HIndmarsh as he stayed around for us to get the photo. I didn't take the photo, so we have to wait for Jess to send us the photo.

The Eels gave Brody a hat and the lovely Jess brought Brody another different type of hat for his birthday. Thanks Jess. xoxox

Brody had a really great day, but he fell asleep on the way home, and now in bed. I am tired too, after chasing him all around the stadium. Clinic visit tomorrow and ABI, so busy day again.

Radiation Oncology Meeting!!!

Yesterday the Radiation Oncology rang me to book Brody in for today to have a meeting and to take his measurements of his head, lungs and hole body. Brody had to go under anaesthetic as they had to do a CT scan of his lungs to find out the density. They do these measurements to calculate and plan for how much and how long they will need treatment for. Every thing went well.

I found out a lot of information about what will be happening for the radiation, first is Why they use radiation before a bone marrow transplant? Well it kills off cells left behind, as chemo does not always kill the cancer cells in the brain or spinal cord. This is also common in children with the T-cell. It also gets rid of Brody's bone marrow and creates physical space inside the bones for the new bone marrow and it also reduces the child's immunity so that the new cells are not rejected.

Brody will be having 4 days of head radiation and then the next week he will have 3 days, twice a day whole body radiation. He will be placed under anaesthetic for all treatment as the children have to lay still for it. He also cant eat or drink for 6 hours before this, so when he has the twice a day treatment, he wont be able to eat all day, as one session is in the morning and the other in the afternoon. Grrrrrr......

• What are the side effects of Radiation?

Like most things these side effects can happen or might not happen, It effects different people in different ways.

Side effects that can happen on the day of treatment and after-
Lethargy, Nausea, Vomiting, Diarrhoea. Children can develop a sleep disorder, where they can sleep long periods, this isn't permanent and can last a couple of weeks.

Side effects that can happen in the few days or up to 2 weeks after total body treatment-
Mucositis ( mouth sores), Swelling of the jar and glands, Hair loss, Redness of the skin

• Long term effects

There are changes that can happen months after to years after

Growth disturbance- growth hormone is produced by the pituitary gland in the brain, this gland is sensitive to radiation which may not produce enough growth hormone. Therefore children might need growth hormone injections. Also the treatment can damage growth plates, which then can effect their growth and they will be slightly smaller than other children.

Fertility- Some children will need hormonal treatments to reach puberty and might need to be on this for the rest of their lives. They told us that Brody wouldn't be able to father his own children but we still need to educate him that he could as there are some people that have fathered a child after all this treatment. But it is rare.

Cardiovasacular- is thicken of the outside and inside of the heart, which then is heart disease.

Lung- Lung tissue is sensitive to radiation, which means lung infections and other problems.

Learning- Children under 10 have more chance that some learning difficulties can be detected. This was not good news, as Brody already has a mild global delay and needs support services.

Eye- can cause cataracts

Teeth- In young children tooth root and tooth decay

Also one other side effect is that they can cause another type of cancer.

I also rang the hospital to talk to someone on the transplant team to find out what was happening. They still need to make an appointment with me to talk about what is going to happen but now looks like Brody will have his transplant on his birthday, 21 July. But dates can be changed as it depends on his levels, if he gets infections or even if LUke gets an infection. So have to wait longer for more information.

I would like to thank all my relatives in Melbourne, Sydney and Queensland for their comments, prayers and thoughts. This will be a hard time for our family as its the same time we lost our lovely Sonya, and still so close to the passing of our wonderful Pop (Alan Heale). Our emotions will be very high and your prayers and support will be treasured. Please look after mum and dad for me as Brody and i will be in isolation for 8 weeks. Thanks.xoxoxox