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

Thank You!!!

Brody is out of his bad mood, we did lots of work this morning, sometimes without even having to use rewards. It was a nice change instead of having him hit, kick or threatening people. I still believe we have a long way to go, but we will work on more when he is all finished with his health.

Today's blog is for a very special person in Brody's life. A big Thank you to Bill, as he has been there for 3 years now and has been a big part of Brody's life.

Bill use to take Brody to speech lessons, look after him a couple of times if i had to go to a teacher meeting for Brody, Pick him up from day care to make my life more easier. He plays and teaches Brody things, like the time when they built the cubby house or pick up wood together. Bill even went to Autism meetings to help understand Brody and to help support me through this hard time as it was devastating to find out. Even when we had hard times with Brody he still supported us the whole time. We all had to go without things, as we found we couldn't go out to friends or dinner or shops because of Brody's behaviour, but Bill still stood by us.

We had just became a little family and then Brody got sick, which shocked our shocks off. I will never forget the time when this caring man cried when he found out Brody was not well. He truly has become a big part in Brody's life.
Bill also has been there for this whole experience as he visits Brody and calls us every day. Brody and i both miss our little family and he often talks about going back home. Brody and i thank you for beaning understanding and patience with us. Thank you to the most caring man i know. xoxoxoxoxoxoxoxoxoooooxoxoxoxoxooxoxoxoxoxoxoxoxoxoxoxoxoxoxoxooxoxoxoxoxoxoxo

Check up day!!!

Today Chris from the great organisation Autism Behaviour Intervention come to do Brody's routine work, but Brody has been very hypo and more distracted again, like he used to be as i think because his counts are recovering and he feels so much better after a month of no chemo, he is starting to act like he used too. Its a worry!!! But it could also mean he is not feeling well, as the cancer could have increased already. Just have to hope that its just a phase and he will improve as days go on.

We also had Brody's clinic visit, which for the first time it was faster then any other time. Brody acted up with the doctor as well again, like he use too. Bummer!! I love getting kicked in my tummy and holding him back from the lights switches, so he wont turn them off and on while the doctor is trying to write.
We didnt learn much again today, only that the transplant team will ring me with a appointment to talk about everything. He still has to have a hearing test, and another CT scan before everything happens.
I also found out that his EEG was found a little add normal, so they will keep him on the sezisure control tablets and might change to a different tablet after the transplant.

Our next visit is next tuesday unless transplant team ring before than. So we are looking forward to living a so called normal life again this week, as this is the first time since we moved down to Sydney we have a good break away from Hospital life. I cant believe nearly every second week and week we have been in hospital. We are looking forward to the peace, privacy and just to sleep in, go to bed early, do nothing and spend time as a mother and son not a mum playing doctors and nurses. I am looking forward to running around the house, dancing with Brody, playing ball, playing Wii with Brody and all the things you might take for granted when you do them with your kids. As there is so much you can do in a hospital room and we have missed so much. We really do deserve this break as its going to be a long, hard time to spend 8 weeks in isolation. Thanks again to everyone who come to visit us in hospital and showing your support but please remeber that we can not have any visits during the isolation period, this is for Brody's safety and his health. Thank you xoxoxox

Wet rainy weekend!!

Brody so far has had a great time with his cousins Domenic and Ethan. There father David had to work this weekend so Grandma and Grandpa were looking after them, which worked out really good for Brody as he doesn't get to much time to play with other children in his age range. It was so good to see them having so much fun playing in a make a cubby that we made up in the garage with blankets and sheets. They even made a cardboard box into a tunnel for their entry way into the cubby.

They have also played Wii, which they played dancing, Mario Karts and all sports. Grandma and Grandpa even had some turns. They have all eaten heaps with Grandma making hot dogs, pasta and pop corn.

Tomorrow will be much of the same, and try to have some sort of rest as Monday we have ABI and then clinic appointment it will be all rush again. Brody and i have really enjoyed having this week out of hospital, as after spending just over 2 weeks in hospital we deserve our peace and our life. xoxox

Normal week at home!!

Haven't done much this week, Normal routine stuff!!! Brody is eating more and enjoys playing with his cousins.

This video is off Brody and Grandpa playing his Bakugan's. He really enjoys playing with them and its been one of his obsession for awhile. Brody gets a bit ruff with grandpa sometimes, which we then have to take them off him. Thank you to everyone who has given Brody the Bakugan's as his case is now full. xoxoxo.