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
Friday, November 5, 2010
Wednesday, November 3, 2010
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.
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.
Monday, November 1, 2010
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.
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.
Friday, October 29, 2010
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.
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.
Tuesday, October 26, 2010
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
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
Monday, October 25, 2010
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!!!
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!!!
Friday, October 22, 2010
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.
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.
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