Not much news today as Brody is still the same. He did have his 9 hour treatment for the poo bug again. Cant wait for that to finish.

Doctors said sorry for gate pass issue yesterday and told me they forgot he was still on the potassium and TPN. They will now include the potassium with the TPN and run the TPN for 20 hours so that way he will get 4 hours without the cords, so he can get some exercise.

PET scan tomorrow, so big day.

Brody and i worked on his cutting, painting, drawing, and played playdough today. Before this i couldn't even get him to cut a piece of paper and now he wants to cut. Think he knows he can do these things as he cant do active things. One good thing is that it has taught him to do different school stuff and with all my work and ABI i think he will be ready to start school in a support unit next year.

Brody's GVHD is coming back like a steam train. He is very itchy and is having cold shivers. This is a good thing but we don't wont it to get to bad.
Doctors said today that they will do the PET scan Thursday and see what is going on, then they might put him on a new tablet that helps with the GVHD. But all this work does not change his very high risk of the cancer coming back.

The silly doctor's also told the nurse we could go on a gate pass today. I had to laugh as the nurse told me, as i said to her, what about his TPN and Potassium? As you cant just stop these, you have to slowly come off them. The nurse said yes that's right, she went and doubled checked with the doctors and come back saying No gate pass! LOL I should be a doctor now. But worse part is, it doesn't give you much trust in your doctors when they forget that they were the ones that put him on the TPN and Potassium. But everyone forgets and makes mistakes, as i think they were thinking because they have stopped the anti biotic he could go out today.

Not much else happening, is all a big waiting game and cant plan anything. You all should look at your lives and be grateful for all the little and big things, as i am very grateful for everything as this experience has taught me so much about life.

As you all know and i have said before weekends are really quite and boring, so i have a rest from writing the blog on those days. Unless something happens, then i will write something.

Over the weekend Brody has had the steroids which has perked him up a bit, and becoming his cheeky self. Autism children don't know social behaviours like normal children and when and not to do things. Brody gave a perfect example of this as he went for a squeeze of a nurse's boob. It was really funny and kind of cute, but the nurse and i knew we couldn't laugh and had to have our cranky faces on so he would learn he can not do that to people. I can understand if its a little child, as i used to get that at day care, but not when they are five.

Brody is still on the TPN, and nose feeds as he still isn't eating. Because of the steroids he wants the food but when he gets it he cant eat it. Today he had 12 little chicken in a biscuits, a least it a start.

He is still having low levels of potassium, which is normal. The doctors booked his PET scan for tomorrow, but due to the virgin blue flight cancellations, he cant have it till Thursday, as something has to come from Melbourne for the PET scan and wont be here till Thursday now.

Brody is still doing runny poo's and going through heaps of nappies and wipes. He also has a sore red bottom that needs lots of cream.

We also moved rooms today, back into the nice big room, we had for transplant. The lovely nurses in Variety loves as both, they organised the room for us. Which will make life a bit more easier, as i think we will be here for a while. Brody needs to be on full feeds, no TPN, no temps and alright to go before we get home. So will be a while.

The steroids have been stopped today, so the next couple of days we will see the GVHD coming back. Hopefully it will work its magic. We wont know till a months time, when they do the next bone marrow test how good it went.

Cancer Sucks!!!

Soooooo tired, last night I was up nearly all night in between changing Brody's running poos, getting him a sick bag and buzzing the lovely nurses to turn off the beeps on the machines. The day isn't much better either. Poor Brody is also sooo tired and sick of it all!

Our Christmas tree is back, we don't have 9 like we did in transplant but 6 is still alot. It makes it hard to pack them up and wheel them over to the shower, but we cope.

Doctor's have started Brody back on the steroids today as they believe his GVHD has got worse. He will be on them for 3 days to settle it down a bit and then see what happens after that. They are going to try and see if they can get the PET scan early in the week as they said they think he might have GVHD in the gut. That's what i have been trying to tell them, as he has runny poos with or without feeds, (10 poo's from 7.00am to 6.00pm), feels sick and vomits all the time. It has to be, but they are hoping the steroids will help that too, or they might put him on another thing that helps the gut.

He is getting more itchy with his rash and is still very tired. He doesn't wont anyone but me, and doesn't talk to anyone or isn't his cheeky self with the nurses any more.

But otherwise we are ok, better then some, as we lost another little friend this week. Its so hard to watch so many children with this horrible disease. A wonderful friend ( LOve you Sara) told me last night, that she was told not to get attached to other families in hospital, but how can you not, your whole life is the hospital and children with cancer. You become each others support, friend and family. You see each other all the time and have so much in common. So its really hard not to get attached. But when you hear that their child has lost the battle, its really scary, heartbreaking, a sense of lost for one of your own. Some days are harder then others.

We have another friend, that we talk too, and she is amazing as she sits in her daughters room every minute of the day, as her daughter is waiting to join god, its heartbreaking and i have shed some tears for her, but try to be strong as she needed a friend to talk to while alone in the hospital room. Since seeing my sister Sonya and helping mum and dad with my pop on the night he past, i have become a strong person and saw how they all looked peaceful and out of pain. Death doesn't scare me any more its the pain of not having them here with us that hurts.

People just don't understand what happens here in the hospital, families and children need more help to make their life better, as in Westmead children's there is over 200 children with cancer and everyday a new child is added. Queensland hospital is the same. Governments give a little bit of a helping hand to hospitals but its not enough.

Thats why i started the DVD's for sick kids facebook page, to get more DVD's for children to watch, as they are stuck in a room for 24/7, days, weeks and months doing the same old thing. Hospitals cant afford to buy things like this or other things normal children get to play with or do at home. I just wish i could do so much more for everyone.

Its so sad and depressing to be here sometimes, as you really feel everyones pain and hurt. I am not amazing or a super women, i am the same as everyone else who loves their child with all their heart and would do anything for them. I am a mother, and i am proud to have that title.

Low on Potassium and bone Marrow Results

Last night was a hard night as we did not get any sleep, Brody's potassium level was very, very low. Which means if he hasn't got enough it can effect the heart or if he is giving to much it can effect the heart.

Therefore Brody, has to have a heart machine put on him and if anything happens he will go to ICU. but at this stage nothing has gone wrong and he is still doing ok.

He is not eating or drinking, but he is still on the TPN. They have turned off the nose feeds as it was going straight through him. He had 7 dirty nappies last night. this also causes the low potassium level and because he is not eating.

Today he has been very tired and feels sick as he has asked for the sick bag heaps of times, but has not used it yet. His rash is all over in very little fine red dots, and is light red in the morning and afternoon is a brighter red. It makes him itchy but not much.

The doctor's have told us the bone marrow result was the same from before, so his cancer is still at a level they don't like and need to let the GVHD take over.

He will be having a PET scan next week, to see the problems in his gut, as its looking like the GVHD is affecting the gut. they can give something for it, that will help the gut and not stop the work it has to do else where.

If the GVHD gets any worse they will put him back on steroids for a few days and then take him off, its like trail and error. Hopefully it will help get the cancer level down as this will reduce his chance of it coming back, but we will still have that worry that it could come back.

Today marks the a year since Brody was diagnosed and we had to rush him off to hospital. I cant believe that we made it through, but as we are still in hospital and still doing things to stop the treatment, i just don't know how long we will be doing this for.

Thank you to all my friends and family, for their support, gifts, comments, thoughts and love as we wouldn't have got through this year with out your help.
A huge thank you to my mum and dad, for all there support, as they have been through so much them selves and still give love to Brody and me. I am glad i made a decision to stay in Sydney as mum and dad will also need my help, they have a slow battle on their hands and will need all the help they can get too. I love them so much!!! xoxoxo

Results!!

We found out the results today from the CT scan, which the doctor's have told us that nothing has shown up as an infection, Brody has a little bit of fluid in his tummy but shouldn't be anything. They are planning to do a P.E.T scan early next week, but if he is better, we will cancel it. The pet scan will show us is his gut has the GVHD and how bad. As i believe they think everything now is from the GVHD.

As Graft vs Host Disease effects the skin, gut and liver. Brody has rash all over his body now, but still not as bad as Transplant, the rash is more finer. He has gut issues, with runny poo and not eating. Its a catch 22 as we want the GVHD to kill of the cancer cells in Brody's body but we don't want it to bad, or have many side effects. They have said we can put him on steroids for a couple of days to clam it a bit then take him of them again. Its going to be trail and error.

Brody's temps have stopped, which is a good thing as i thought they were never going to, after 2 weeks of high temps. But we cant go home yet as he is not eating.

They are going to start the TPN, which is feeds through the central lines into his blood, as the nose feeds are going straight through him and he isn't getting enough. So this will make us in here for a few more days.

Cheered up by Capatin Starlight

We have nearly been here for 2 weeks this visit, and still no reason for the high temps. The doctors have booked a CT Scan in for tomorrow and if that does not show up anything he will have a P.E.T scan sometime during this week too.

They started Brody back on feeds last night but only a little bit at a time, he seem to cope with this, which is good, as his little tummy is starting to look skin and bone. He did eat a little bit of pop corn today, just a kids size handful. Yeah!!

Captain Starlight come in today and cheered Brody up by making a great balloon tiger. Thanks Captain Starlight. xoxo