Rough Day!

Brody was yelling out all morning, "I am hungry". But i could not let him eat. He also was very stress as he would not do any thing the nurses wanted him to do. I told them now they know why he cant share a room, as he was yelling, hitting, kicking and trying to bite us. He was on his full show today. It worked out good as a special person come in and could see what he was like. This wonderful person was Jill from ABI, she is a behaviour therpist and she worked wonders to get Brody on her side. She is going to be coming every week to help Brody, me and the nurses and Doc's. He had lots of laughs and giggles, it was good to see a stranger making him laugh. A big special Thank you to a wonderful women that has help us out in so many ways, Chantelle!!!! Thank you for introducing us to this wonderful lady, she helped his morning be so much better.

Brody then had to go into the clinic where he had his bone marrow test and Lumber puncher, this is where they put two small holes in his back, one to get bone Marrow out for testing and the other to put chemo in his spine, to stop the cancer cells from travelling up the spine into his head.
Within an hour or so Brody woke up and went back to the ward.

Early this morning they also started him on a chemo drip, which is still running at 10.30pm tonight. He has spent the hole afternoon throwing up but is still eating chips, icy pole and jelly.
One time, when he was throwing up really bad, i was in tears and telling him i was sorry that he had to go through this, my little man, while still chucking up touches my check and rubs it so softly. Made me cry even more. He is always worried about mummy and tells me he will never leave me and that he loves me and i am the best cook in the world.

The rest of the day he has been sleeping and resting while watching TV. Grandma and Grandpa popped in for a little quick visit to give me a break, but other wise it has been just a normal day at the jail house. This is now the start of the second block of chemo which approx will go for about 2 months give and take, i am expecting to see him be alot more sicker, as docotor told me that most kids are set back for ages before they start this block and Brody was brought forward. After the second block, he will then have a third, then they start preparing him for transplant. So approx looking at around 4 to 6 months before transplant.

Emotional Day!

Back at the hospital at 8.30. Brody didnt want to go, cried nearly all the way, and i had to pull him from the car. I too was not in the mood to go either. We went to clinic and waited. The nurse called him to take his bloods, every thing went as normal.

We then had to go to nuclear medicine where we waited again, for Brody to have a kidney test. I tried to explain to Brody what was going to happen but they did it different to what John Hunter did. They called us in and Brody had to have a sharpie in his hand. Again i had to sit on top of him and hold him down while two nurses did the sharpie and add the liquid into his veins. It was really hard for me today and i had a little cry. Then we had to waited around for 2 hours before they did the next part.
We went out to the hospital playground, as it was a cooler day and only 1 other child there. We went back and they took blood out of his cords. They told us to come back in an hours time. So we went back to the clinic and they told us to wait to see the doctor. Time was ticking and we had to go back to nuclear med, so we told the lady and went back, waited and then they did bloods again, and told us to come back in an hour. My face just dropped, i said i have to come back again. They said yes. Brody at this stage was getting really restless and starting to muck up. We went back to clinic and they again told us to wait. Brody played with the playstations, ate popcorn and rice crackers and watched TV. He was starting to get tired. He ran off twice, trying to go home to grandma's. At this stage my level of patience was wearing very very thin. Again time ticked on and No doc. We again went back to do the last bloods. Come back to clinic and waited again.
Finally the doc called us, spent 5 mins with us and told us to go and wait to be admitted into hospital. The lady at the desk said we could go home and come back at 7.30pm. So i jumped at the chance and left. We got home after 4.00pm and Brody and i crushed out for 2 hours. Grandma had cook us dinner and then left to go back to hospital.

Arrived at hospital, still very tired and patience still very thin. We saw the nurses at the desk and they told us the room number. We got there and we had a shared room. Which is ok. but not for Brody. As remember he dosent like strangers and the ward and nurses were all new to him as well. I also pay private health to cover for him to have a private room. That was the last straw, i broke down in tears and said this wont do, as i have had a bad day and dont need Brody to get more restless, Brody and i both need our rest. The nurse then tried to help us get our own room. I dont mind sharing but as some of you would know its harder to deal with strangers and keep them settled when other people are around.

Still i have nurses saying to me all kids do that! NO! ALL KIDS DONT DO THAT!! I have had another child and worked in child care for 17 years, plus have a masters in early childhood teaching. ALL KIDS DO NOT DO THAT! they might do it once or twice but not all the time and not to the same degree. You can compermise with other children, Autism kids cant. I then gave them Chantelle's - Brody's story to read. Thanks again Chantelle! Please check out Special stories for special children in the link on the side page. Thanks.

String Day!

Today Brody played with threading toys and magnet fishing game. He love playing with Grandma's cotton roll and wrapping the string around and around me.

We still just stayed around the house doing bits and pieces. It was a very hot day today, which again means we cant go out side as Brody cant go in the sun, due to the meds he is takening. He has already started changing skin colour in groin and tummy, which is from chemo. He is starting to be a opposite to Micheal Jackson. They say he can get really burnt if he goes out into the sun. So like i said last time, there is so many things that Brody cant do, which makes life hard but its only for his protection, as any little bug or infection could end up deadly for him.

Brody is still eating us out of the house and drinking lots of water. He has been very happy and dosent mind going back to hospital as long as they dont give him a sharpie. I am not looking forward to it, as its alot of work and some days Brody's Austium runs you down. But i am use to coping with this by my self and when your a parent you do what you have to for your children.

So bring on tommorrow!!!!

Valentine's Day

Love my kisses and cuddles. I dont get them alot as Brody only gives them on his terms and when he feels up to it. But i have had plenty today. Hope every one had a great day for Valentine's Day.

Brody and I again stayed at home and did things around the house. We ended up having a sleep today. Yeah!!! My poor Valentine was sick and had to go home as he couldnt be around us but

Grandma, Brody and me had a foot spa and i did my nails. It was good to just sit back and do something relaxing and something for your self. As you dont get time to do things for your self, like a hair cut, foot spa and nails, so most of the time you feel like crap about your self. So now i feel that little tiny bit better.

Wishing everyone a HAPPY VALENTINE'S DAY. xxxxxx

Rainy Weekend!

What a dull, rainy weekend! Did not do much at all except lay about the house watching movies, playing playstation and playing games. Brody is not allowed to go any where were there is alot of people or other children, due to all the bugs and germs. This then stops us from been able to go to the movies, shops, park, play centres and other things, so then the only thing left to do is stay at home again.

Brody is still eating lots of different types of food, which is good. All he would eat in hospital was yoghurt or custard and icy poles. Now he is eating cheese, Jatz, apples, grapes, chips, meat, pizza and he wants more and more pizza. Think i will own the pizza shop by the time Brody is finished.

Brody has still decided not to have a day sleep, but still sleeps all night cuddled up with teddy and mummy. Love how he wraps his arm around me and tells me to go to sleep!

Other wise its been a stressful weekend, worried about Brody's brother Luke, Brody's Great grandfather and Brody's grandmother. Life just seems to get better and better and i am about to loose my mind.

Check Up!

Brody enjoys seeing Domenic and Ethan before grandma takes them to school. Brody really loves his counsins and had fun playing playstation with them.

Went to Hospital first thing today. They took bloods out of his cords and then we waitied, while Brody run off again and again. (must be feeling better). Then we saw the Doctor, she told us that because his levels were good, they will bring the chemo forward to this tuesday. There goes our 2 weeks rest. Lucky we dont plan any thing! He will be having a bone marrow and lumber puncher, with chemo put into the spine. Also having chemo on the drip into his cords, so its a couple days stay again.

Brody also had another nose suction, it was the worse one to date. As the silly nurse told him before i could get a hold of him, so then he was hitting and kicking everyone. I finally got him down on the bed and we held him down. It makes you feel like a terrible mother and you just want to run and cry, but it has to be down. I always end it by giving him a cuddle, while he is still telling me off.

We also saw the hospitals OT and she is getting things ready to help us out, by making visuals of what Brody has to do in certain areas and situations, and also getting help with a speech person from the hospital. As we have had problems with one lady that does speech. She told me they dont have the facilities for an Austium child. WHAT! I got on my high horse and had a good old argument. You would off been proud of me, sticking it up her! She still caused me alot of stress. So OT lady is going to find another speech person from the hospital, as she also had problems with her.

Brody is still eating lots and lots and drinking all his water. He didnt have a sleep again today, he is alot more active as well, must be because of his levels beening good.

Games Day!

Brody is coming along so much better with his eating and drinking. He ate about 30 Jatz with butter, grapes and lots of water. We had a day fill with playing playstation 1, playdough, cutting and watching DVD's.

Again he loved having Dom and Ethan here before school, as they all sat up at the table and ate breakfast. My sisters husband drops them off at grandma's so he can go to work and grandma takes them to school. As some of you know i lost my sister a year and half ago to a rare cancer.
We all miss her very much!

We have to go back to hospital tommorrow to check bloods and a check up. Then we get a little break before time again in hospital for a bone marrow operation(this is to check if chemo is starting to work) and intense chemo. So Brody and i will enjoy our time away from the jail house while we can. Other wise we are trying to start other services for his Autisum, so he dosent go backwards and keeps moving forwards. Thanks to Chantelle, i have a few contacts but as she and i have found it is very hard to get people to come to hospital or the home. I try my best at teaching him (as a Early childhood teacher) but he wont listen to mummy. What child does?

Thank you again to all those people that have put money into Brody's fund, as this will help so much. As you can imagine i still have the same bills i was working for and now more. So thanks again. Even the little bits go a long way. LOve you all xxxxxx