A huge Thank you for our home town, Forster/ Tuncurry for Brody rocks nite. They raised around 16, 000 for us. This will help so much as it will get rid of my debts and start the ball rolling for next year. Sarah and Nicole are two wonderful friends.THank you. xoxo Thank you to everyone involved in the night. Its great to know people care so much to help us out in this situation. Thanks again xoxoxo
Today Brody is still the same, having his up and downs as the steroids are playing with his emotions and behaviour. His blood pressure was up and down too, but nothing to worry about at this point of time. The weekends are very slow and you don't get told much as only weekend doctors are on. So its been a very slow day.
Sunday, August 8, 2010
Saturday, August 7, 2010
Day 17- Post transplant
Bugger!!!! The steroids are making Brody's behaviour all over the place, feel like we are back at the start when he wouldn't do anything for anybody.
His rash has started to look better and he has had no temps. Doctors are pleased with him. Brodys cough is also driving him crazy. Doctors think that his cough could be related to his poo bug, but wont know until later from the nose test results.
Otherwise the weekends are always quiet and not much happening.
The pain doctors come around yesterday and told us they will start to reduce his morphine, but cant believe his level of pain. As children that have had good transplant have 3-5 mls of morphine all the time and children that have complications are on 5-6mls. Brody is still on 0.5mls all the time. They said he was the lowest they have ever had for a Transplant. !!!!
Told you all that he doesn't fell pain, which has been such a good thing for him, as he has gone through so much. But is a bad thing because it can hide problems and we don't know if something is really wrong with him.
Brody Rocks Fundraiser Event is on tonite at Tuncurry bowling club, The lovely Nicole and Sarah have done so much to raise funds for us. This will be so helpful as i have over 12, 000 in bills and all of the pension goes on the normal life bills. When i was working it was hard to pay things but now i am not working its been hell and stressful. So this money will help us pay the bills and help towards living another year down in Sydney and help a little for his school next year. But we will still have a long way to go as the school i want to get him into is over $20,000 a year, plus parents are asked to raise another $18, 000. Shit!!!!
We will see! I hope everyone has a good weekend, xoxoxo
His rash has started to look better and he has had no temps. Doctors are pleased with him. Brodys cough is also driving him crazy. Doctors think that his cough could be related to his poo bug, but wont know until later from the nose test results.
Otherwise the weekends are always quiet and not much happening.
The pain doctors come around yesterday and told us they will start to reduce his morphine, but cant believe his level of pain. As children that have had good transplant have 3-5 mls of morphine all the time and children that have complications are on 5-6mls. Brody is still on 0.5mls all the time. They said he was the lowest they have ever had for a Transplant. !!!!
Told you all that he doesn't fell pain, which has been such a good thing for him, as he has gone through so much. But is a bad thing because it can hide problems and we don't know if something is really wrong with him.
Brody Rocks Fundraiser Event is on tonite at Tuncurry bowling club, The lovely Nicole and Sarah have done so much to raise funds for us. This will be so helpful as i have over 12, 000 in bills and all of the pension goes on the normal life bills. When i was working it was hard to pay things but now i am not working its been hell and stressful. So this money will help us pay the bills and help towards living another year down in Sydney and help a little for his school next year. But we will still have a long way to go as the school i want to get him into is over $20,000 a year, plus parents are asked to raise another $18, 000. Shit!!!!
We will see! I hope everyone has a good weekend, xoxoxo
Thursday, August 5, 2010
Day 16, Post Transplant
Doctor's confirm that Brody has acute GVHD, but is mild, therefore he is a grade 1-2. They don't normally treat with steroids, as only moderate to server gets treated with steroids, but they believe that Brody GVHD will get worse if they didn't treat it with steroids now.
The infection on top of it is not good as steroid's love infections and help them develop more. So have to watch his infection closely.
They have also told us that there is new sell growth, but more likely its Luke's cells that are growing, but this wont be confirmed for another month or so. Therefore we have over another month until we know if the Transplant and engraftment went well.
For a while we will be still having ups and downs and still such a long way to go. I am trying to work out the next year, as we will have to stay down in Sydney for another year due to Brody needs Bone marrow test twice a month and also clinic visits, therefore it will be easier if we stay down here close to hospital, also if the cancer comes back within the 12 month period we will be back here again. But i need to work out school option's for Brody when he can start school again, as if he waits another year he will be further behind his peers. There is a school that i have thought about for a long time, even when Brody got diagnosed with Autism but it is very expensive, but i think he will really need it as he hasn't been in a normal situation for over 11 months and i believe he will need a least one to two years of more one to one teaching before he goes into main stream school. Its going to be a big issue, as if i don't do something now, he might miss out for next year. Stressed!!!!.
They started the steroids today, and already his rash looks so much better and his temps have gone down, which is the first time in weeks. He is still coughing and having running poos, but he is alot more happier in parts of the day and tired the other parts.
Thank you to the Cartoon Network for all the Ben 10 things, Brody loved them. Thanks to Grandma for washing them and cleaning them before Brody got them. xoxox
The infection on top of it is not good as steroid's love infections and help them develop more. So have to watch his infection closely.
They have also told us that there is new sell growth, but more likely its Luke's cells that are growing, but this wont be confirmed for another month or so. Therefore we have over another month until we know if the Transplant and engraftment went well.
For a while we will be still having ups and downs and still such a long way to go. I am trying to work out the next year, as we will have to stay down in Sydney for another year due to Brody needs Bone marrow test twice a month and also clinic visits, therefore it will be easier if we stay down here close to hospital, also if the cancer comes back within the 12 month period we will be back here again. But i need to work out school option's for Brody when he can start school again, as if he waits another year he will be further behind his peers. There is a school that i have thought about for a long time, even when Brody got diagnosed with Autism but it is very expensive, but i think he will really need it as he hasn't been in a normal situation for over 11 months and i believe he will need a least one to two years of more one to one teaching before he goes into main stream school. Its going to be a big issue, as if i don't do something now, he might miss out for next year. Stressed!!!!.
They started the steroids today, and already his rash looks so much better and his temps have gone down, which is the first time in weeks. He is still coughing and having running poos, but he is alot more happier in parts of the day and tired the other parts.
Thank you to the Cartoon Network for all the Ben 10 things, Brody loved them. Thanks to Grandma for washing them and cleaning them before Brody got them. xoxox
Day 15- Post transplant
OK, had meeting with Doctors, they said that yes he has Graft versus Host disease and the infection from his poo. For those that missed it yesterday, i will begin from the start.
Graft versus Host Disease.
Its a common complication of this type of Transplant. About half of the patients develop some degree of GVHD. Most of the cases are mild to moderate.
The T- Lymphocyte cells from the donor (Luke) may recognise the child (Brody) own body cells as foreign and try to destroy them. This happens because the child (Brody) own immune system has been suppressed or eliminated by the conditioning therapy before transplant. We also have to remember that before the conditioning therapy Brody had double chemo to reduce the cancer level on top of all this, so his immune system was totally eliminated.
Acute GVHD occurs in the first 100 days of Transplant and primarily affects the skin, liver and gastrointestinal tract (gut). GVHD may be mild, moderate, severe or life-threatening and may effect one organ or more at the same time.
GVHD is classified on a grade system 1-4, Grade 1 is mild and grade 4 is life threatening.
Symptoms of Acute GVHD are skin, itching, burning, redness of palms or soles, rash all over body, blistering.
Gut- nausea, vomiting, abdominal cramps, loss of appetite, offensive smelling, watery diarrhoea which may become bloody
LIver- jaundice, swelling, abnormal liver function tests.
Now Brody shows alot of these signs, except his liver has no effects at this time. He has shown these pretty much from just after the transplant happen. Because Brody has the infection in the poo, they don't know if the diarrhoea and smelling is from the GVHD or the infection. They need another day to let the meds work from yesterday to get a better picture.
Treating GVHD, the combination, dosage and duration of meds chosen to treat Brody will depend on the grade, and duration of acute GVHD. They have told me they will treat him with Steroids tomorrow. Which means Brody's GVHD is moderate to severe, but i have yet to confirm with doctors on how bad it really is. I did talk to the student doctor tonite and she said his skin was about a grade 3, but it depends on how he goes the next couple of days as it could get worse. So don't think the bad yet as we still have meds to help treat it.
The steroid work by suppressing the immune response of the donor cells (Luke) to the Brody's cells. If the GVHD does not respond to this there is another two drugs they can try.
Children who develop GVHD are again at higher risk of infections!!!!!!!
Hopefully tomorrow i will find out a bit more information as i have so many question. But poor Brody is not his happy self as much now. Thanks again everyone for all your support and hope everyone has a great nite at Tuncurry bowling club tomorrow night. Thanks xoxoxo
Graft versus Host Disease.
Its a common complication of this type of Transplant. About half of the patients develop some degree of GVHD. Most of the cases are mild to moderate.
The T- Lymphocyte cells from the donor (Luke) may recognise the child (Brody) own body cells as foreign and try to destroy them. This happens because the child (Brody) own immune system has been suppressed or eliminated by the conditioning therapy before transplant. We also have to remember that before the conditioning therapy Brody had double chemo to reduce the cancer level on top of all this, so his immune system was totally eliminated.
Acute GVHD occurs in the first 100 days of Transplant and primarily affects the skin, liver and gastrointestinal tract (gut). GVHD may be mild, moderate, severe or life-threatening and may effect one organ or more at the same time.
GVHD is classified on a grade system 1-4, Grade 1 is mild and grade 4 is life threatening.
Symptoms of Acute GVHD are skin, itching, burning, redness of palms or soles, rash all over body, blistering.
Gut- nausea, vomiting, abdominal cramps, loss of appetite, offensive smelling, watery diarrhoea which may become bloody
LIver- jaundice, swelling, abnormal liver function tests.
Now Brody shows alot of these signs, except his liver has no effects at this time. He has shown these pretty much from just after the transplant happen. Because Brody has the infection in the poo, they don't know if the diarrhoea and smelling is from the GVHD or the infection. They need another day to let the meds work from yesterday to get a better picture.
Treating GVHD, the combination, dosage and duration of meds chosen to treat Brody will depend on the grade, and duration of acute GVHD. They have told me they will treat him with Steroids tomorrow. Which means Brody's GVHD is moderate to severe, but i have yet to confirm with doctors on how bad it really is. I did talk to the student doctor tonite and she said his skin was about a grade 3, but it depends on how he goes the next couple of days as it could get worse. So don't think the bad yet as we still have meds to help treat it.
The steroid work by suppressing the immune response of the donor cells (Luke) to the Brody's cells. If the GVHD does not respond to this there is another two drugs they can try.
Children who develop GVHD are again at higher risk of infections!!!!!!!
Hopefully tomorrow i will find out a bit more information as i have so many question. But poor Brody is not his happy self as much now. Thanks again everyone for all your support and hope everyone has a great nite at Tuncurry bowling club tomorrow night. Thanks xoxoxo
Wednesday, August 4, 2010
Day 14- POst transplant
What a day!!!
Skin Doctor come in and told us that his big red patches were from the chemo and the fine red ones were Graft vs Host Disease, but nothing to worry about.
Graft Versus Host Disease is a common complication of Transplant, every patient develops some degree of GVHD. Most of the cases are mild to moderate.
What happens is that the donors T-lymphocyte cells recognise the patients cells as foreign and try to destroy them.
There is research that GVHD can be beneficial in children with Leukaemia, as it the T- cells fight the Leukaemia cells. There is also Acute GVHD which can be life threatening.
At this stage the doctors said it is still too early to tell, and if it gets worse they can treat the GVHD. So time will tell.
Then Brody had the drug which went for 9 hours to help get rid of his poo bug. Its like another chemo drug and needed fluids before and after.
He also had a platelet transfusion and then need two bags of blood transfusion.
After half of the first bag of Blood Brody skin and rash went bright red, the worse that i have seen yet, his eyes are all blood shoot and he is very tired. He also has had a little vomit.
The doctors came in again and told me that it could be the rash flared up again, or a reaction to one of the things he had today. They will re examine him tomorrow.
At the moment he is having his other bag of blood and going off to sleep. So its been a huge day and i am ready to go to bed too. Good nite all, LOve you all xoxoxo
Skin Doctor come in and told us that his big red patches were from the chemo and the fine red ones were Graft vs Host Disease, but nothing to worry about.
Graft Versus Host Disease is a common complication of Transplant, every patient develops some degree of GVHD. Most of the cases are mild to moderate.
What happens is that the donors T-lymphocyte cells recognise the patients cells as foreign and try to destroy them.
There is research that GVHD can be beneficial in children with Leukaemia, as it the T- cells fight the Leukaemia cells. There is also Acute GVHD which can be life threatening.
At this stage the doctors said it is still too early to tell, and if it gets worse they can treat the GVHD. So time will tell.
Then Brody had the drug which went for 9 hours to help get rid of his poo bug. Its like another chemo drug and needed fluids before and after.
He also had a platelet transfusion and then need two bags of blood transfusion.
After half of the first bag of Blood Brody skin and rash went bright red, the worse that i have seen yet, his eyes are all blood shoot and he is very tired. He also has had a little vomit.
The doctors came in again and told me that it could be the rash flared up again, or a reaction to one of the things he had today. They will re examine him tomorrow.
At the moment he is having his other bag of blood and going off to sleep. So its been a huge day and i am ready to go to bed too. Good nite all, LOve you all xoxoxo
Tuesday, August 3, 2010
Day 13- Post Transplant
Sorry everyone, i am running late tonight, our routine has been a bit all over the place today.
Day 13 is such a unlucky number for us today, as Brody needed oxygen when he sleeps now, his temps are still over 38, and his rash looks a little bit better as its not so red, but it is still there.
They also found a bug in his poo today, so tomorrow he will be having a strong med that the whole process go's for 9 hours and the meds runs through him for 3 hours. Its is very strong, so the nurse has to stay with him the whole time to watch his blood pressure as it can shoot sky high or go really low.
Also the skin doctor is coming in tomorrow to access his skin, and find out what we can do about it. So tomorrow is going to be a huge day for mr Brody.
He is a bit flat today, not wanting to do anything except play his DS. The photos i have put on show you the real reds bits of his rash, but you cant see the fine bits all over his body.
Also a big THank YOU to NRMA Care Flight for his wonderful teddy, he loved it. The teddy was cleaned before it come to Brody. Thank you xoxox
Monday, August 2, 2010
Day 12 - Post Transplant
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.
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.
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