Monday, April 26, 2010

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