Brody's temps have not gone under 38.0 today and his potassium level is low again so needs more. His rash is covering all his body now, but doctor's tell us that we have to wait to find out what it can be and how he is going. They said hopefully by the end of the week or next week they will be able to tell us something.
He is getting weaker by the day as needs help to walk to the shower, his little legs aren't strong enough to carry him, but he still tries to do it himself. He has stayed in bed today playing DS all day, he wouldn't do any school work or craft as he said he was to tired.
Brody still has fun, as he is cheeky to the doctors and nurses. Brody had to have a nose test today, as normal i had to sit on him and hold him down as he was kicking and hitting us. But he is getting better with the blood test (sharpies) as i only have to hold his arm down and hold his other hand now. He gets them every day, so he is getting use to it.
Monday, August 2, 2010
Sunday, August 1, 2010
Day 11- Post Transplant
For those who have just joined our journey, Brody has gone through 4 months at John Hunter Hospital Newcastle where he was diagnosed with Acute Lymblastic Leukaemia with T-cell. They started him on standard chemotherapy and we had to wait 79 treatment days for the results of how aggressive his Leukaemia is. I had found out that the T-cell part is rare and it normally happens with boys. The leukaemia goes on different levels, which are standard, medium risk, high risk and very high risk. This determines how strong the treatments will be and what is needed to be done. So the day after boxing Day 09, we got told it was very high risk and he needs a transplant. But we have to move to Sydney as Newcastle don't do transplants.
So we set of to Sydney where we stay at Grandma's and at Children's Westmead Hospital. Before transplant Brody had to go through 6 months of high risk chemotherapy and then have a months break to give him time to heal before the conditioning treatment of Transplant.
But in that months break they found the Leukaemia come back again, and would have to have another dose higher then before to get it down enough to do the Transplant. As the level was too high to do Transplant. Therefore we were called in early and he was given the higher dose.
They also asked me if i wanted to go through with the Transplant as because his Leukaemia is very aggressive, its more likely not to work and if it comes back within 6 months they cant do any more. There was no other option's, except give him that 1% chance it might work.
Brody had the Transplant on his birthday 21/7/10 his big brother Luke was the bone Marrow donor. Luke is doing well now, and Brody is in isolation for a long time. Before Transplant Brody had to go through head and whole body radiation and also more very high chemotherapy.
Transplant day is called day 0, and so far we are up to day 11, where Brody has high temps, sores in his mouth and throat. Red itchy rash, diarrhoea and nausea. He doesn't eat or drink but is on feeds through a tube and other vitiams put through his cords. We wont know if Transplant worked for a while yet, but hopefully we get some good news soon. This has been a total of 11 months all up and still a long way to go............
Brody aslo had some more Potassium today as it is a very important mineral for the proper function of all cells, tissues and organs in the body. Its is crucial to heart function. He is still the same and temps have been 39.7. He had a big sleep today and watched some Tv.
A BIg HAPPY BIRTHDAY to my lovely and wonderful mum (Grandma). We love you heaps and Thank you for everything. xoxoxoxox
So we set of to Sydney where we stay at Grandma's and at Children's Westmead Hospital. Before transplant Brody had to go through 6 months of high risk chemotherapy and then have a months break to give him time to heal before the conditioning treatment of Transplant.
But in that months break they found the Leukaemia come back again, and would have to have another dose higher then before to get it down enough to do the Transplant. As the level was too high to do Transplant. Therefore we were called in early and he was given the higher dose.
They also asked me if i wanted to go through with the Transplant as because his Leukaemia is very aggressive, its more likely not to work and if it comes back within 6 months they cant do any more. There was no other option's, except give him that 1% chance it might work.
Brody had the Transplant on his birthday 21/7/10 his big brother Luke was the bone Marrow donor. Luke is doing well now, and Brody is in isolation for a long time. Before Transplant Brody had to go through head and whole body radiation and also more very high chemotherapy.
Transplant day is called day 0, and so far we are up to day 11, where Brody has high temps, sores in his mouth and throat. Red itchy rash, diarrhoea and nausea. He doesn't eat or drink but is on feeds through a tube and other vitiams put through his cords. We wont know if Transplant worked for a while yet, but hopefully we get some good news soon. This has been a total of 11 months all up and still a long way to go............
Brody aslo had some more Potassium today as it is a very important mineral for the proper function of all cells, tissues and organs in the body. Its is crucial to heart function. He is still the same and temps have been 39.7. He had a big sleep today and watched some Tv.
A BIg HAPPY BIRTHDAY to my lovely and wonderful mum (Grandma). We love you heaps and Thank you for everything. xoxoxoxox
Saturday, July 31, 2010
Day 10- Post Transplant
Brody's temp is still up as it reached 39.3. His rash still looks like its spreading as he has tiny marks on his tummy and back. He had to have yet another lot of platelets today and his mouth has sores inside it.
He hates the daily sharpie in the arm, but he knows the routine and if a different lady comes to do it, he tells her she forgot something.
I made a video of our room and what it is like, as i wipe down everything in the room every day, anything that comes in needs to be clean and brand new. We have to wash our hands before entering the room and again before touching Brody. I cant wear rings, watches and if my shoes get dirty i have to wash them. The craft lady comes by and gives me brand new paper and paints to use with him. So we have been in hospital now for 5 weeks and still have a long way to go. Even when they tell us we can go back to Grandma's we will be still in isolation for 6 months.
Hopefully in the next couple of weeks we will know some news if the Transplant worked. But we still have to worry about it coming back within the next 6 months.
Sorry its on the side. xoxox
He hates the daily sharpie in the arm, but he knows the routine and if a different lady comes to do it, he tells her she forgot something.
I made a video of our room and what it is like, as i wipe down everything in the room every day, anything that comes in needs to be clean and brand new. We have to wash our hands before entering the room and again before touching Brody. I cant wear rings, watches and if my shoes get dirty i have to wash them. The craft lady comes by and gives me brand new paper and paints to use with him. So we have been in hospital now for 5 weeks and still have a long way to go. Even when they tell us we can go back to Grandma's we will be still in isolation for 6 months.
Hopefully in the next couple of weeks we will know some news if the Transplant worked. But we still have to worry about it coming back within the next 6 months.
Sorry its on the side. xoxox
Friday, July 30, 2010
Day 9- Post transplant
Brody's rash seems to be getting worse and its driving him crazy as he scratches it all the time, even in his sleep. The gave him some phenergan to help with the itches. Which also made him very tired and he had a sleep today for a couple of hours. But no rest for me. The doctors come in and had another look at his rash but its still to earlier to tell what could be causing it. As some of his meds and chemo can cause it.
His temp has come up again to 38.7 and he is very angry and frustrated with everyone and everything today. But still has time to be silly as he told a male nurse (while i was in the shower), mummy has boobies, he thought that was real funny!!! LOL. Lucky the nurse knows Brody and just laughs back at him. But this is the type of socially inappropriate thing we try to teach Brody not to do, as he does not know he cant say these things to people. He sometimes laughs at the nurses bottoms or smacks them too. But lucky all the wonderful nurses know him and know that he dose not know that this type of behaviour is not right to do socially.
His temp has come up again to 38.7 and he is very angry and frustrated with everyone and everything today. But still has time to be silly as he told a male nurse (while i was in the shower), mummy has boobies, he thought that was real funny!!! LOL. Lucky the nurse knows Brody and just laughs back at him. But this is the type of socially inappropriate thing we try to teach Brody not to do, as he does not know he cant say these things to people. He sometimes laughs at the nurses bottoms or smacks them too. But lucky all the wonderful nurses know him and know that he dose not know that this type of behaviour is not right to do socially.
Thursday, July 29, 2010
Day 8 Post transplant
We did all our normal routine things of cleaning, shower, sheets change, rubbing cream, blood tests, meds and machines buzzing. We also watched movies, played Wii, did some drawing and played DS. Brody also had yet another platelet transfusion today as his levels were low. If he has low platelets it can cause bleeding, as platelets help to clog the blood.
Brody's rash seems to be getting worse as it looks like it is spreading. In the photo you can see the real red parts but not the spots that are faint. The other photo is of our 7 machines which we call our chrissy tree as they light up and make all different sounds.
Brody's temps have gone down again, but the doctors still think that they will go up and his effects will get worse. But they have said that they are pleased with the way he is coping with everything. I also felt really proud of my self as they told me that i have done a great job with getting him ready with everything and the way he is still happy and not getting to sick of everything. But thanks to the help with ABI, as i wouldn't of got this far without them. They also told me i had two great boys, Well i always knew that one, as i have raised them with all my love and made sure they respect others.
Wednesday, July 28, 2010
Day 7- Post transplant
Brody started the day happy and full of beans. He did a little bit of craft and played a superhero card game.
Then all the fun started as the blood lady came in to take his blood, she did the arm first, but no blood would come out, then she twirled the needle around and took it out a bit to try again and again, but no luck. So after looking at the other arm and his hands, squeezing and pulling, she decided to do his hand. But she only got a little bit of blood, but left Brody in tears and pain and me feeling stressed and angry as i had to be the nasty person to hold him down for it all.
All this stress on Brody made him have a dirty nappy so then i had to change him, and while i did all the doctors had walked in. Great, no privacy. They told me Brody's temps will still go up and down, there is no sign of infection at the moment in his bloods. They also gave me a cream that i can rub on his dry skin. But they are pleased with his progress.
I gave Brody his shower and changed his dressing for his cords and his nose tube dressing, as they need to be done once a week. He really hates this as the stickys are really sticky and hurt when they are pulled off.
The afternoon he was tired out and just layed in his bed and watched Tv.
Thank you again to all my family and friends helping us and supporting us, we couldn't do it without you all. xoxo There is also a big thank list on the side wall of the blog page. Thanks again.
Then all the fun started as the blood lady came in to take his blood, she did the arm first, but no blood would come out, then she twirled the needle around and took it out a bit to try again and again, but no luck. So after looking at the other arm and his hands, squeezing and pulling, she decided to do his hand. But she only got a little bit of blood, but left Brody in tears and pain and me feeling stressed and angry as i had to be the nasty person to hold him down for it all.
All this stress on Brody made him have a dirty nappy so then i had to change him, and while i did all the doctors had walked in. Great, no privacy. They told me Brody's temps will still go up and down, there is no sign of infection at the moment in his bloods. They also gave me a cream that i can rub on his dry skin. But they are pleased with his progress.
I gave Brody his shower and changed his dressing for his cords and his nose tube dressing, as they need to be done once a week. He really hates this as the stickys are really sticky and hurt when they are pulled off.
The afternoon he was tired out and just layed in his bed and watched Tv.
Thank you again to all my family and friends helping us and supporting us, we couldn't do it without you all. xoxo There is also a big thank list on the side wall of the blog page. Thanks again.
Tuesday, July 27, 2010
Day 6- Post Transplant
Today was a hard day for Brody as his high temps have come back and he had to have a sponge bath. I cleaned him all up and then he vomited all over himself, so i had to clean him up again and the nurse helped me to change his sheets. He then had the runs all over the floor, so i had to clean him and the floor up again. Poor little man.
He also has a red spotty rash, which is more on his head and face, with a couple of them on his body. The doctors don't know what the rash is at this time, we just have to keep an eye on it.
He had more chemo today plus his usually meds and 7 machines. For the first time he drank a little bit of water. He has also had blood test after blood test, which i think he is getting use to as he tells the lady how to do her job.
Brody is weak and cold from the high temps and still loves watching his movies and playing Wii.
Today was the first day he had a sleep.
Every day i have to go around wiping all the cupboards, my computer, Tv and our posters etc down to keep dust and germs away. The nurses have a stock of all the things they need in the room with a trolley so that they are not bringing in things from outside. A cleaner comes in every day to clean the room and floors. My hands have started to wrinkle, dry and sore as the skin is breaking from all the hand washing i have to do. As before any one touches Brody they have to wash their hands with a special cleaner. But its all for the safety of Brody's health.
He also has a red spotty rash, which is more on his head and face, with a couple of them on his body. The doctors don't know what the rash is at this time, we just have to keep an eye on it.
He had more chemo today plus his usually meds and 7 machines. For the first time he drank a little bit of water. He has also had blood test after blood test, which i think he is getting use to as he tells the lady how to do her job.
Brody is weak and cold from the high temps and still loves watching his movies and playing Wii.
Today was the first day he had a sleep.
Every day i have to go around wiping all the cupboards, my computer, Tv and our posters etc down to keep dust and germs away. The nurses have a stock of all the things they need in the room with a trolley so that they are not bringing in things from outside. A cleaner comes in every day to clean the room and floors. My hands have started to wrinkle, dry and sore as the skin is breaking from all the hand washing i have to do. As before any one touches Brody they have to wash their hands with a special cleaner. But its all for the safety of Brody's health.
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