Wonderful Week with no Chemo!!

This week has been such a busy week, with with all different things happening. On Wednesday, I called into the hospital by myself to find out about when Luke has to come down, as i need to plan for this. Doctor said in the next couple of weeks, so we are very excited to have him hear. I also saw the social worker and she can help me with Luke's air travel down. She also mention for me to use their helpers service to look after Brody for a while so i can have some time away during transplant. I said thanks but no thanks, as if you are not trained in Autism and have no idea how to look after my son, well i would rather do it myself. As i have said before other people looking after brody that dont know what we are doing will undo all our work and make it harder for me as he is not getting the care he always gets. She understood, and said but if there is any thing else you need to just ask her.

Thursday we were to go to hospital to start Brody's chemo. We were packed ready, but then when i called the hospital there was no bed. I left every thing in the car packed. Brody was excited he didn't have to go. We had to call again on Friday.

Friday came, what a day that was, we had to go to the hospital no matter what to check Brody's bloods. We did blood test and then watched everyone come and go, come and go. Still no doctor. People were coming in after us getting their bloods, waiting, see a doctor and then going home before us. By this time my patients were running low. Why were we not seeing a doctor?
I found out they had no doctor to check in patients, so the other doctors did not want to see us as its not their job today to check patients in. What? I saw three doctors and not one of them could see us. What a joke, as they have all seen us before. Was thinking it was because of Brody's behaviour with them.
At 3.30pm a doctor finally came and saw us, to let us know that his bloods were too low for him to have chemo. So we waited for nothing, if they told us this in the morning we could have gone home. Going to take this matter higher, as no one should have to wait this long in a hall way.

So because i was packed and at this time loosing my mind, I contacted Bill and told him not to come down as we were going to go home for the weekend. Brody was so excited!!!!!!
Brody has wanted to go back home for soooooo long, so i thought he might never get the chance again, and this was the perfect time to go.

We arrived home on Saturday afternoon, Brody raced out and run around the place looking at every thing. Brody feed Red the horse, climbed his ladder, only first step, and then collected sticks as he wanted a bon fire to toasted mushrooms which is really marshmallows.
Our first nite in our own beds in 7 months, oh bliss!!! I fall fast asleep like a baby! and so did Brody from excitement of beaning home again.

Sunday Pete and Bill took us out in the boat and Brody got to do some fishing for the first time. He really enjoy it and even pointed out the type of fish he wanted to catch on a sign.
When then come back home and got Brody's favourite meal PIZZA. The weather was rainy and cold so we ate our pizza and watched movies. Even though we were stuck inside it was so nice to be back home and have that freedom we don't have any where else.

Monday morning we left Nabaic to go back to Sydney, it was a sad time as we did not want to go but we knew we had to as we have to be back in hospital on Tuesday. So now we are refreshed and recharged and ready to fight for another chance to get back home.

For the next couple of month or so its going to get very busy for Brody and I as treatment and test are going to be started, Luke will be coming down for tests to start the ball rolling for Transplant, so i apologies if i am not contactable or have not written on Facebook. But as some of you guys know living with a child with Autism, having no partner to help, its hard to do every thing. And at this time Brody, Luke and me are the first on my list. Sorry to all. xoxoxox

Heart test and Clinic Visit!

Domenic and Ethan were here first thing this morning, as school starts back. Brody then didn't want to go to hospital. He was yelling, crying, "I hate this hospital". He was so stubbon, i had to pick him up and force him into the car, as nothing would work to try and get him in.

After awhile he was ok, then like normal runs off into the hospital, we me trying to keep up carrying the heavy load of stuff we need to take just for half a day. Couple of times i have lost him, but found him after i have looked around the place to find out where he went.

Brody got his bloods taken today, all were at a ok level, but still very low. They normally do a transfusion if your blood is lower than 80, Brody's blood was 77. I dont know why they didnt do a transfusion, but it could be because he has new bloods, which will make it rise as days go on.

He also had a Heart test today, which turned out all normal. So Chemo starting on this Thursday. We will be in for 6 days. Hopefully i will also find out more about the transplant too.

Brody was so much better today waiting and seeing the doctor, even though she did not check him out. After all this happen, we had to wait that little bit more as i had asked to see another doctor about the transplant. We waited and waited, Brody turned back to his old self, hitting me, biting me, kicking me and even spitting on me. I was not going to take it any more, so i told them not to worry and took him home to go to bed. I think he just had to much waiting, as usally he only does things like that when someone is trying to do something to him. He has only ever done this to me at doctors, but never while waiting or at home.

Love how people judge you for your child, but they have no idea what it is like living with a child with Autism. If they are not in their normal routine or get out of their routine for a little while, the parents have to work twice as hard for a week to get them back into rountine. So for me and Brody this experinece is alot of hard work and we both get so frustrated.
So unless you know what we are going through dont judge!!!!

Lane Cove National Park!

Brody has been asking to go on a picnic for so long, but it has been to hot, to wet or he has been to sick. So today was the perfect day for Grandma, Grandpa, Brody and I to get out and do something different. So we decided to go to our lovely Lane Cove National Park.

As Grandpa and I used to work there, we knew of the nicest and quite spots with out any people around to go to. We pick a beautiful spot with shade, picnic table and a view of the river. It was perfect.

Brody was so excited about going, he hopped in the car before we even packed it. He had his sunscreen on, sunnies for his eyes, hat and his toy plane already to go. We all had a wonderful time as its the first time in many years, as there has been so much sadness in our family. It was a memory i will cherish.

We come back home for a big sleep and get ready for our clinic appointment for tomorrow.

Lane cove National Park is the best park. You can see its natural beauty for miles, can hire row boats, book a picnic site, ride bikes or just rock up for the day. They also have the Lane Cove River Tourist Park, where you can camp, rent a cabin or bring your own caravan. It is so close to the city, but seems miles away as you are surrounded by Australia's beautiful bush land. Its a must see!!!!

Clinic check up!

We went off to the hospital fully prepared for waiting and prepared with all the visuals, to explain to Brody what the doctor would be doing. Could not believe it, today was the first time we didn't have to wait to long. Brody got his bloods tested, and then only waited for a little bit to see the doctor. In the doctors i show Brody what was going to happen, as he asked several times about getting a sharpie. He seem to understand and coloured in and played his game while i was talking to the doctor, but as soon as the doctor wanted to check him over, the hitting , kicking and yelling started. Tried to explain again and even bribe him, but i think because she was another new doctor that we have never met, he just wasn't going to do anything for her. It was hard, but we got through it, just like we do every time we go.

Brody's results were low counts, but not low enough for any transfusions. We need to go back on Monday to check them again. Then also maybe next Thursday we will be back in for another 6 day stay. Brody then got his dressing changed, which he took it off all by himself, and then went crazy as he hates the feeling of the cold sponge cleaning it.

The day finished within 2 and half hours, big difference from 5 hour visits for the same thing! We then went home and on the way got Brody Mac Donald's as i had promised it when he was seeing the doctor. He is still eating like a horse, and still wants his pizza and Garlic bread.

Brody and i then had our nanny nap and when we woke we did our activities with Grandma, and Brody did really really well. I was so proud of him. Thank you to ABI, for all there help. xoxo

Our week!

Our week has been the normal week of staying inside at Grandma's watching TV, washing, playing games, nanny naps, worrying and organizing finances. Also we had the lovely crew from ABI come on Monday, Tuesday and Wednesday. They have done so much already to help Brody with his behaviour problems, helping him with school work and helping him to accept things.



Brody has change so much, he is not that hyperactive child he was before this experience.Brody used to run around the farm chasing the dog and chickens. Brody could not sit at a table to do work or play with any toys he had. Brody would jump from one activity to the next within a few minutes. Brody also had difficulties at his Day care and was also alot of hard work at all his extended programs he was attending. But now he has calmed down so much to the extent he sits and colours in and sits at a table to do some activities. Brody doesn't like to go outside and run around the back yard and has problems with any physical activities. I believe the chemo has calmed him down alot and with the help from ABI we are seeing a different Brody. I wonder how he will be when his treatment is all finished? Will he go back to that hyperactive child or will he stay settled. Either way, I will love my son every day and continue to help him in every way, as i know that we, like any parent with a Autism child, will have these battles for life.



Friday is check up day, not looking forward to it! Rather be at the beach swimming with Brody and making sand castles.

My Little Man!

Back Home Again

Brody's levels went down low enough for us to get out of jail and go home again to Grandma's. But before we left, Chris from ABI came and did lots of fun things with us. Thanks Chris

All Brody wanted to do was wear his superman outfit, so we had to get his cords taken off. But first i told the nurses to keep him attached to the machine, so then i could take out the first load of stuff to the car. I know Brody will stay in his bed and watch a movie while he is attached. So i did take the first load down and booked our appointment for Friday. The nurses then took his cords off and we put his superman outfit on. He then ran through the halls of the hospital pretending to be superman. It was funny to see, but very stressful for me, as i was trying to keep up with him, while carrying the last load off stuff. Thank god, Uncle David and Ethan were at the hospital for Ethan's appointment and stopped Brody before he ran off outside.

Brody has still got a running nose and a cough, he sounds like he is starting to loose his voice. But no temps, so they think he will be ok. Cross my fingers we don't go back in with high temps again like last time he had this chemo. Otherwise we are back in this Friday for check up.