Day 22- Post Transplant

Well as you can see from these photos Brody has improved so much this last week, he has now started to get out of bed and play on a mat the phyiso gave us. As the doctors want him to get more exercise now. Also Brody has improved so much with letting the lady take his blood, as i don't have to hold him down anymore. Although he always has a delayed effect and cries after it.

The doctors also want him to drink more, which we will be working on but he is eating alot more now, as he ate 2 slices of pizza today that he made himself, thanks to Grandma's portable oven. Has food safety is a major issue with Transplant patients. There is so many foods he can and cant have and the way they have to be cooked and etc.

Had a meeting with the doctor's today, they are please with him, The GVHD can flare back up and come back, if it dose he will be on steroids for a longer period of time. So have to keep a watch off it.

They also said in the next couple of weeks they will be slowly taken him off all the intravenous medications and put him on oral meds. There are also some more complications that can happen such as infections and the GVHD, but everything goes to plan we might get out of here before we expected. But Brody will still have to be in isolation at GRandma's for 6 months, as infections can cause alot of problems.

Also asked them about school for next year, but they wont knew for a few more months yet when he could start as if his immune system isn't right it will take longer to go back, so it could be the start of the year or the middle of the year. Bum!! I will have to make sure i have a few options up my sleeve.

Day 21- Post transplant

Wow!! we have been here for around 7 weeks all ready, how time flys! We still have about 3-5 weeks to go but everything looks great. Knock on wood!!!

I was not prepared for Brody to do so well as because of having the extra chemo on top of everything else and what the doctors were preparing me for. I was expecting so much worse, but we only have had little things. Brody is such a legend and a fighter, i think he is an Iron Man to get through what he has done so far. Proud of you my little boy!!!

Yesterday and today he has had low heart rate, low, low temps, high blood pressure and very tired. The doctors have said its all from the effects from the drugs and they are not to worried. He has started to be slowly taken off the steriods and morphine. He did need a extra push of morphine today as he was sitting there making noise like he was in pain and when i asked him he told me that his tummy hurt.

He will have a protien transfusion tomorrow as the protien in his blood is low and the physio will be starting to come to help build up his legs to do more things out of bed. He has sharpie's every second day now. The rash looks so much better now, as it only comes and gos.

Thank you again to all my friends and family xoxoxox

Day 20- Post transplant.

Again today Brody has been very sleepy and frustrated as he has his cranky pants on. LOL. But we got some really good news, as Luke's cells have grown more and every thing seems to be working. But the real test for this will be in a couple of more weeks or so.

Brody had to have a chest x ray today, as the machine come to his room and did the x-ray there. He was good as gold. Think it was because he felt safe in his own room, as other times he wont sit still or hits and kicks. So this was great!! X-ray results turned out normal.

Brody even ate 1 and half slices of toast with Vegemite, OMG! first time he has really eaten for ages. They have also increased his feeds up too. He is still on morphine but has started to decrease it by a ml.

The test for his poo bug on the first of August come back positive so they will be giving him the same 9 hour treatment tomorrow as he had the other day. His rash is so much better.

Luke gave us all a scare last night as he fell off his skateboard and ended up in hospital in Queensland, just with some friends. He spilt his head open and needed 4 stitches the cut was 5cm long. They also did a CT scan, which come back as some bruising on the brain, and i had to wait till 12.00 last night to find out it wasn't to bad and they sent him home. No wonder i am getting so many wrinkles. LOL

We are about half way there, and things are starting to look really positive. Thanks to everyone sending your positive vibes. xoxoxox

Day 19- Post Transplant

Nothing to report today as Brody has slept most of the day and night. He is very tired. The rest will do him good. I am feeling very tired, run down and out of sorts, as every thing is getting to me now. I am just emotional and will get over it and move on....

Thank YOu so Much!!!
A simple thank you seems inadequate to express how grateful i am - because Thank you means you went out of your way to do something really special- And though you didn't have to, yet you did that means a lot to me.

Thank you, means i hope someday, I'll be able to do the same for you. I truly appreciate what you did, YOu were ever so kind and thoughtful.

Thank YOu means you put your heart into it, and that really touched my heart......... and even if you tried, you couldn't have done more, because what you did was simple wonderful.
Yvonne. L.

Thank you to everyone that has support us. You know who you are........ we love you all xoxoxo

Day 18- Post Transplant

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.

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

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