October long weekend!!

As you all know not much happens over the weekend, and long weekends are worse.
Brody has been eating Grandma's chicken soup, for breakfast, lunch and dinner. That's all he wants.

He is doing really well at the moment, as the put him back on the steroids, so he is cheeky, active and a bit emotional. He still gets very tired by the afternoons and goes to bed early. Wish i could do the same.

Tomorrow is our big day, when he has his bowel biopsy and a camera done the throat. We wont know results for a couple of days.

Pet scan result

Brody has been very perky this morning and then the doctor's told us we could have a gate pass this afternoon, so then he has been on a emotional roller coaster as he hates waiting. But we had to wait to slowly take off the TPN.

The doctor's have told us that the results from the PET scan showed two spots in the bowel that are red, but they are not 100% sure, so they are going to do a bowel biopsy on Tuesday. Happy Birthday to me!!

So we are still playing the waiting game, but they are going to start on steroids again for his rash on the skin, but waiting for results to see what medications to use for the gut and bowel.

So will be in here for a while longer until its all worked out and he is alright to go home. I am so glad that i have the best nurses that keep me going and on my toes and wonderful friends that i have made here.

Also i am so lucky to have all my friends and family for their support as you all have thought of me. LOve you all xoxo

PET Scan

This morning we had to starve ourselves so we would be ready for the PET scan. Brody had to get off the TPN very slowly and just be on fluids.

He was a bit grumpy all morning, and had a obsession with cutting out things with paper, which for the first time he made rectangle shapes and a square and made a robot. We did this once before with a stencil, the shapes were already marked on the paper. He is so amazing to remember what shapes he needed and to cut it out with no marks on the paper. Cant believe it!!

We left for the PET scan at 12.35pm and the porter pushed Brody's bed over to the adult hospital, as they don't have a PET scan machine in the kids hospital. The porter dropped us off at the wrong spot, so the nurse and i had to push the bed to the right place. The poor nurse will be black and blue tonight as the bed kept pushing her into the wall. Need L's to drive a bed!!!

Brody and i stay in a little room where they put some special dye into him, i had to stand and sit behind a metal shield, as the dye had radiation in it, and could come off Brody to me.

We had to wait 45 minutes for the dye to go through and then they put him to sleep.

I then had to carry him into the room with the machine, where they tapped him up, so he cant fall off or move. The scan took about half hour. Brody had a good sleep, until 5 pm.

This afternoon he woke up very perky and ate some of grandma's chicken soup with toast. Maybe he should of had the scan earlier, to get him to eat. LOL

Hopefully we get the results tomorrow.

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.