Sorry, Havent wrote for a while!!!!

Yes, sorry i haven't wrote for a while as now life has got more busy.

ABI and I have been trying to get Brody ready to start school and we have had some great success with him. Brody is really excited to start as i think as he has been in isolation for so long he really needs that contact with other children and school work to keep his mind active.

We have had also alot of personal things happening which has been keeping us busy, stressed and tried. Never thought trying to get our life back on track would be this hard and bad luck just seems to follow. As my car rolled down GRandma's driveway and hit the brick work, lucky for me it didn't roll down straight and hit into the garage door. But unlucky for me as now i need a to get my car fixed. Another expense, cant believe how much things cost for getting your child ready for school, getting a new life and now this. Grrrr......

We had a clinic visit today, all is good, but we are back on FRiday as Brody needs a Intragram Transfusion. It wasn't a good day for Brody as i think everything is getting him anxious. He threw adult and child size chairs, which one bruised my ankle. He punched me and wouldn't do what the doctor wanted. It was hard!!! BUt thats what happens with Autism children when there life develops changes. This is why i try and keep him in routine every day. So i am looking forward to get school underway and on the routine track. As it is so much hard work, and sometimes as Bill and I found out, you finally get Brody settled and going great and then something would come in and make our job even more harder again, and sometimes it can take just a day to wreck everything for a week of destructive behaviour.

Once Brody is settled into school and things are back in order, nothing will change our routine again, as i have worked so dam hard, by myself for the past 5 years to get Brody where he is today, and Brody and I both deserve the best in life.

Clinic check up!!!

Its been a great chrissy and New Year!! Hope you all enjoyed yourselfs???

Brody is doing really well at the moment, he has started a new program with ABI to get him ready for school, he is so excitied to start school and i think he will enjoy having friends to play with.

We went to our clinic check up during the week, and i ask the question about his chances now that he is in remission. The doctors response was that its great he made it to the 6 months, but the cancer is still there! She explained that cause of Brody's high risk, most kids like Brody the cancer might come back in the first year and then some come back in the 2nd year, so if he makes it over the 2 years we will be partying then!!!! Its not much help, but we have to stay positive that it will never come back!!!

Brody's nose tube come out when he was sick from eating to much, so i pulled it ut of his nose this time and gave him the option to take meds with his mouth or go back and get another nose tube? He decide to take the meds, he is doing really well at the moment, but tries a few things, such as spit it into his drink! Grrrrr......

The doc's have plan the next bone marrow for next month. We are still waiting for results on his isolation tests and start vaccines. They are also going to keep his chest cords in as long as they can.

So at this point of time its normal rountine life at GRandma's house and waiting and waiting for results.

Merry Christmas and happy New year!!!

Wednesday we went for our normally weekly check up and also a Intragram transfusion. We also got the best christmas present anyone could ask for. The doctors have now told us that Brody's cancer is in remission!!!!!!!! Its not a cure and he is still at a very high risk of it coming back. But if that ever happens, we will deal with it then but for now, we are all on cloud nine.

We will still have bone marrow tests and clinic check ups and if he gets any infections he will need to stay in hospital but its a part of the course. Brody is still in isolation stage and they will do another test for that in Jan, but at this point he could be still in isolation until after march, as his immune system is not so good!

Brody and I would like to wish you all a Merry Christmas and a Happy New year!!!!! xoxo Sorry still having trouble with chrissy photos!!!

Bone Marrow and chrissy party Week!!!

Another big week, we had our last lesson for with the school teacher and the lovely ABI come and did great work with Brody.

Bone Marrow, went all well, but was a hard and tiring day, as we were there for 6 hours. We wont know results for another 10 days, but keeping my fingers crossed all is well.

We also had the clinic chrissy Party, were we meet up with the doctors, nurses and some our friends we made in hospital. Its was a great day. Brody got his face painted, got to sit on Santas knee and had some great food. Thank you so much for all the wonderful people that helped make this day great for all the children in clinic!!!

Brody is doing really well, we cant believe we have had a bit of a normal life for so long now, Its been great to be a home. Although we miss our wonderful friends on Variety Ward. You all mean the world to us, thank you. xoxoxo

Otherwise everything is still the normal routine, with heaps of meds morning and night, school work, games, and TV. Brody is looking forward to the Domenic and Ethan coming in the hoildays while David is at work.

We wish you all a Merry Christmas and Happy New YEar!!!!!!!! LOve you alll xoxoxo
Having trouble with downloading photos, but they will be up in next couple of days.

Wow, what a week!!!

Last Friday, Brody, Grandpa and i got to go to the V8 Supercars, thanks to a special friend Mr Sargent, from Penguin Publishers. Since Brody is still in isolation, we got to have our own private tour and Breaky with Craig Lowndes. We also got to meet some other drivers. Thanks to Ford and Holden for all the wonderful prezzies that Brody got. Brody had a ball and wanted to go back again the next day. lol

We have had the teachers visit to do Brody's school work.

We have been also getting ready for chrissy, as Brody helped put the tree up. He loved putting the Sonya the angel up onto of the tree.

Today we went for his normal check up, everything was fine. He's counts are a bit low, so hoping he dosen't get anything, as today he was a little bit off.

Next week is the next bone Marrow test and clinic chrissy party, so another big week for us.

Back for our weekly Clinic Visit!!

Everything is still going really well, Brody is still eating lots and now weighs 25.4kg and is very active again. He is also such a big boy now, that i am not aloud to do anything, he has to do it himself! lol

Our lovely Doctors will never learn, even if you have told them heaps of times, not to call Brody anything else excepted for Brody. As he called Brody a baby, as he was pretending to play with Brody. But its the worse name you could call him. Lets just say i think the doctor will now never say it again!!! lol

The doctors have now stopped the steroids, Yeah!!!!! As i ask them too, Brody has just had too many effects from them.

Brody is having so much fun at home and loves chasing everyone around the house, even Grandma!! He is looking forward to big school and our big party when he can come out of isolation.

Hospital Party Day, and Clinic Intragam

Went to hospital on the Friday for Brody's Intragam. We ended up having a great day, as it was Party day for the hospital. Brody got to see my favourite superheros and Santa.

Brody and i also saw our Wonderful friends from Variety Ward. They might not know it but they all really mean alot to us, as they were always there for us, even when i had my bad days or bored them to death with my long talks at night. LOve you all xox

His Intragam went well, i did get to see the doctor and found out GREAT NEWS!!! Brody's cancer has gone down again by one. So we are still hoping it will keep going down. Next Bone Marrow will be in December.

Brody has been great, we have start halved the steroids now, so hopefully that will kick in and he will have less side effects.

Brody is back to clinic on next week, for check up.

Clinic check Up!

Another week has past, and really there is no news.

Brody has really done well with his poo's and wee's. Its great to sort of have it under control before he starts school.

Brody is now booked into his special unit school, so should be able to pick up all his gear for next year soon. I cant wait!!!
He also has had his wonderful teachers out from the hospital and ABI. ITs great to have the help, as having looked after him for 24/7 every day has really tried my patience's.

Went to clinic today, but no results from Bone Marrow test yet. He has to go back on Friday for an Intragam (which is blood product Transfusion). Also they lowered his steroids as requested by me, as poor Brody has gained nearly 3kg in two weeks and is having a few side effects, such as lack of sleep, aggressive behaviour and eating grandma's chicken soup nearly 4 times a day with nearly 6 slices of toast each serve.

Otherwise he is doing really well, Its funny as he has got older i can really notice the Autism more. As yes some areas he has approved, but others like repeating him self over and over and having the same things and routine is so much more there now. Think it makes him feel secure as well, as he said to me today, you will always be with me mummy. I told him, i will always be with him.

Bone Marrow OP!

Brody has been alot better now he is on the new steroids for his gut. He hasn't been sick and eating lots more again. Grandma's chicken soup is back for breakfast, lunch and dinner. LOL

We have had alot on with the school teacher from hospital and ABI. He really loves when they come.

I also enrolled him in his support unit at his school, so soon i will be able to get his bag and uniform. I think he will really enjoy it with other children, as he has been isolated for so long now. I wont know what to do with myself, when he is at school.

Today he had his monthly bone marrow operation, so results hopefully late next week or the week after. He did really well, as he had to wait for a long time without food.

Otherwise his blood levels are doing great this week, and he seems really happy. He is such a big boy now, as he only wears his nappies while he is asleep. Its cost me a mint, for his rewards but it has done the trick.

Because of Brody's Autism, he gets very fussy, as he wants what he likes, and nothing else, so most of the time, i have to ask him 6 times to make sure i am getting the right toy or what ever, as if i don't, he wont even open it or look at it. As they have interests and you need to always give him things that interest him. Its hard work, keeping up with it, but knowing Brody i can judge pretty good.

So until next weeks appointment, we don't have much on. Hope you all have a good weekend. xox

clinic Visit

Since Brody finished the steroids i have watched him starting to get sick, loose weight, eat less and the skin rash and bruisers are starting to come back a little bit. Its like all again, when he went off the steroids last time and ended in hospital for a while.

Doctors also agree, so have given another new medication which is a steroid just for the gut. So hopefully this will help his gut and he will be less sick and eat more.
Also some of his levels were really low, which is a sign that he could get sicker and need to be extra, extra careful and keep him away from others.

Next Thursday is the bone Marrow test, for the month, so we are hoping the cancer level has gone down again, and hasn't gone up.

Urgent!!!

Brody has been doing such a great job going to the toilet all by himself, this time he has to do two poo's on the toilet to get a reward, as his rewards cost around $70 for one game. Ouch!!!
But its worth it if he keeps doing poo's on the toilet and i get him out of nappies.

I had to go to the shop to get a new reward as he has done one poo, just waiting for the next, so Grandma and Grandpa were watching him while i went to the shop. I just got a park and walked into the shopping centre when the phone rang.

Grandma rang, as Brody was sick and his NG tube (nose Tube) come out throw his mouth, Brody was stressed and only wanted me, wouldn't let Grandma and Grandpa touch him. So off i, raced home, to find they had calmed him down but Brody was sitting there holding NG tube in one hand and the NG tube still going throw his nose and taped on his face.

I went to pull it out, but Brody wouldn't let me, plus i had to get a new one put in today so i could give him his meds. So off we went down to the hospital to get it out and get a new one in.

He did really well as i think now he is sort of used to it all, but mind you, his good was still holding him down, sitting on top of him and listening to him cry and scream. But a least he didn't kick, punch and swear or call the nurse or me anything. WEll done Brody!!!

On the way home, him and GRandpa stayed in the car and i run into the shop to pick up two rewards for him, one for the toilet and one for brave work. $160 later......... we went home.

So back to hospital tomorrow for our normal check up and hopefully no more surprises!!!

Still staying at home and not doing much. Grandma got me to work and was washing walls and cleaning windows. As they have had so much happening the last lot of years they haven't had time to do the spring clean.

We have been trying to toilet train Brody again, as before everything happened we were toilet training him and then when he had to go into hospital we left nappies on him, as he lost control and got to sick sometimes to go.

The last two days he has done wees on the toilet without any accidents and today as we had a huge surprise for him, he did poo's on the toilet. Yeah!!!!! He was so excited he got his Wii Pokemon game. Lets hope he will keep it up, so he is ready for school next year.

He had a bit of a sore throat tonight, which we think its from eating Taco's for dinner yesterday. As he never chews his food up that well and swallows large bits down his throat. So we think the taco might have scratched it. Well we are hoping that's what it is, he has no temp, so hopefully it is it.

Its a big couple of weeks for us again, with school teacher, ABI, hospital visits and lots happening in our private live too. Already tried but just making sure my little man is happy and loving his life.

My thoughts go out to our Family as we lost another person close to our hearts, Rest in Peace Aunty Chris and thoughts are with her immediate family. xoxoxo

Clinic visit

Yesterday we had the lovely ABI staff out to start working on our next block with Brody. She was Happy to see Brody and Brody was happy to see her, as he ran to the door and cuddled her. We worked out what we would work on and how to go about each goal for the program. Its going to help him out so much and get him ready for school.

Today at clinic, we found out that Brody has inflammation of the hip and lower back, which would put him in some pain, but his bones are ok for now. Which was great news.

I also found out from the Department of Education that Brody has his placement at a special unit school which will be close by to Grandma's but they have to finish things up before they tell me which school.

So every thing is moving ahead, hopefully this good luck will last

Dental and Bone Scan

Brody amazed me today, as it was his first scan and dental clinic visit where he did not kick, hit or really muck up. He was wonderful, did everything he was told.

The Dental clinic was first, where he sat up on the chair, he remember what he had to do from the 1st visit he every had. His teeth are great at this point of time, but needs special cream for the dryness of his mouth, so the cream will protect his teeth, from drying out also.

They also told me not to be shocked if he is missing second teeth or they are deformed or damaged as this is what happens with radiation. LOL, don't think anything could shock me now!
As even as the second teeth haven't grown they can already be damaged.

The bone scan went well too, there were two parts to it. First they put a dye into him and then he gets scanned. Second part was a longer scan, which he nearly lost it, as he used his temper voice on me and told me off, but it had been a long day, as between scan we had to sit and wait for 2hours.

Therefore back on Friday, which we will get Bone scan results.

On the weekend, Domenic and Ethan's school had a school fete, which Domenic and Ethan attend and popped into visit us. I went down to the fete for a little while to grab Brody a show bag, as he could not go. The boys all enjoyed themselves looking through their bags. Brody shared his candy with the boys. Which before he would of ate it all, but now a days he doesn't eat any sweet things.

Sunday was Halloween, which we saw lots of kids walking around the streets, but also Brody had to miss out as he can not go near other children or people. He enjoyed looking out the window and getting the lollies bags for Grandma to give to the children. Its a real shame he has to miss out on so much, but in the long run its for his own health and i we need to keep him sick free, so his recovery is so much better, as any little cold could have a big impact on him.

Today we didn't do much, i spring clean out Grandma's bathrooms and Brody and Grandma played DSI. Brody loves helping Grandma cook, as he always has sent we lived here before. A big thank you to my parents for having us so many times and looking after us. We love you xoxo

Tuesday we have the school teacher coming and Grandma, Grandpa, Brody and i will be having our own little Melbourne Cup party, with hats. Brody has already told what we will eat for lunch.

Wednesday is a trip to the hospital for his dental check up, as i said before the treatment he has had is very strong stuff, due to him having a high risk cancer, so it can effected everything. Therefore check ups need to be down often to make sure he has not got other problems. Which is good, as because of his strong pain threshold its hard to tell how bad the problems could be.

Thursday we have ABI, coming to start his program again, which will be good, as somethings have started to come back as he is getting more and more energy.

Friday is clinic visit, and hopefully one day this week will be his bone scan.

Busy week this week, which is good as it will keep us on our toes but also we will be looking forward to doing nothing on the weekend, expect spending time together.

Clinic Visit

Went to the clinic today, and found out the results from the last bone marrow test.

The good news is that it is getting lower!!!
Augusts level after transplant was at 5, Septembers level was at 2, Octobers level was at 1.5. so at the moment they are hoping it will go lower but we wont know till the next bone marrow. The doctors want the level to be negative numbers, not positive numbers, so we still have a way to go until they will be really happy with the outcome. But at least it is heading in the right direction, it gives me hope.

Also Brody will have to have a bone scan next week, for his leg and hip. AS some days he cant even move it and drags his leg along while walking. The doctors have told me that it can happen with kids like Brody as they have been through a lot of treatment, over the year and what happens is the treatment makes their hip and knee joint thin and weak. So at this stage we have to look into to see the damage, but Brody could have to have a hip replacement in his teens or 20's.

So as you can see, its not the end of hospital life for us, once your hit with this horrible disease, it never stops, as there is so many complications with the treatment. But one lucky things is that i still have my boy, as another friend of our lost her little daughter this week, so my thoughts and prayers go out to LIlly and her family. R.I.P. Lilly. xoxoxo

Please think your selves lucky and dont take anything for granted, as you all get to live a normal life and do things when you want too, where our life has no plan and cant do things. Also respect people that are going through this as its no picnic and really think about them. AS its funny hearing other peoples story's, of them saying they cant afford things either but then next minute they are off on a holiday, or telling you what they want and when but they can live a normal life and do that, but people going through this have no life and cant do things when they want.
Its just so hard, as you see life so different now, and we are really happy for people that they are happy and proud and can do things, but deep inside we really wish that we could be there just for a little bit, as this is one long journey that will never end.

Teacher visit!!

Today was a better day, with no rain and lots of sun shine. Ethan, me and Brody played bubbles and tried shooting flys with the water guns. lol

Brody's out reach teacher from the hospital come to do some work with Brody, and found he was really good up until the end where he had to do some cutting and gluing. The old Brody showed his face, as he riped up the paper 3 times, kicked the table. Nothing would get him out of the mood he was in. But we tried a few things and finally got him out, and then he did what he had to do and cried!!

Brody and i would like to wish Maria from Variety ward, a happy Birthday today!! All the best, hope you had a great day. We will pop in on Friday when we go to clinic. xo

Still no news, Brody is doing really well at this time, no sickness, and no problems, knock on wood!!!
Friday is our clinic visit, so we will get the results then.

Thanks again to everyone, for your thoughts, prayers, comments and you love. xoxo

Nothing much happening!!!

Today is the start of a new week, nothing much happening at all. Brody and i are getting sick and tired of waiting around for a normal life.

Its very hard to even know what to plan and as we don't know where we will be. Even if the cancer gets lower he is still at a very high risk that it could come back. So i guess after the isolation finishes, we start our normal life and hope that it wont change again, but if it does we then have to change our life around it again.

Need to really think about work for next year or study again, while Brody goes to school, we will still have many visits to the hospital, so cant do full time work yet. Wish i had a crystal ball!!!

Brody is doing really well, he has no signs of anything. He is still on alot of medications, morning and night and the steroids are still helping him eat lots, as he had 5 slices of toast for breakfast. lol

He has a sore leg and limps around the house, the doctors told me that the steroids can cause this. But other wise he is having lots of fun with Ethan this week, as he has time off school for his little operation. They are both playing DSI's and watching movies.

So nothing happening till Friday when we go to clinic, Its funny looking forward to getting out of the house to go to the hospital, that is sad!!!

Clinic Visit!

Back again to the clinic today. We had a great morning as we meet up with one of our friends JO and Ben and had a great little chat. We laugh, as we call our catch ups having coffee like normal mum's do. hehehe.

Everything also went really fast today, it was strange to get in there and get out quick. But nothing to tell, as the results are still not back yet. His blood levels are good too, so no transfusions. The doctor is please how good he is going, that she wants us back there next Friday. So no results till then.

Brody had fun too, as we dropped more DVD's of at Variety ward and saw all our lovely nurses. Also Make a wish foundation was there handing out balloons, badges and things, which Brody had to get.

Then we come back home and watched some movies and played DSI. So nothing much is happening, just the usual stuff. Which i am happy that we have keep so strict with what we have to do for isolation, as he hasn't caught any thing. I know others that have got so much, like whooping cough etc. So i am glad that we are very careful in what and how i care for Brody.

But after the isolation period Brody and i will be parting hard, as we have been couped up for a year now, and starting to feel the pinch, but holding on to the thoughts of getting out and about.

Clinic Visit and teacher Visit!!

Brody and i went off to clinic today thinking he will need platelets. We got there and did his bloods and again waited and waited. The doctors had forgot we were booked in today. Then all that happened was we will see you Friday. It was a waste of time. Brody's platelets were still the same as MOnday, so didn't need them today. Grrrr....

The doctors just dont understand how hard it is to keep going back and forwards to hospital. Half the time Brody wont get in the car and then we have to wait a long time with Brody not understanding what waiting is about. Its not easy for any child!

We got back home and had a meeting with the teacher, that chooses what school Brody will attend next year. We fill out all the paper work and find out what support class he will go into and school. Funny thing, she told us Jasper RD public school could be one of the schools. Its funny as thats the school i went to and Luke started at when he was little.

So back at clinic on FRiday, and hopefully we will get the results.