Happy but sad day!

Today has been mixed emotions, Brody couldnt have the stem cell again, but went and had the CT scan. They also put a tube down into his lungs and put fluid in and then pulled the fluid back out. They want to see if he has something in his lungs causing this. He was under for over hour. Again i had to bite my tounge as a nurse from the CT department told Brody to be quiet and still for a moment while she was talking to another nurse. A big thank you to the other nurse, as she looks after Brody and told this nurse, he has Austium and cant sit still or be quiet as he is in a new area of the hospital. So you can see that Chantelle's story books have helped people understand Brody and not just think he is Naughty. There are more and more kids with Austium so please read up on it and do not judge anyone.

Some new Doc's come to visit today and said they are waiting for results from the fluid test in his lungs. They then might put a camera down and have a look, as the Doc said he had a quick look at CT scan and saw a mark on his lung. But wait a couple of days for results, as it could just be a fungal infection. Hope its nothing to bad. Couldnt handle any more bad news!

Good News!, Found out today as well, if Brody makes it through the time before his transplant his big brother Luke might be the person who donates. As they need to test Luke first to make sure he is physically fit, and healthy. If so they will use him. It might take us up to 8 months before transplant. I am so happy, but have tears too, that his big brother can, and will do this for his brother. I love him so much.

Brody is still not that good today, as he has still had high temps, sore legs, tired, hard to breathe and sick of it all. Therefore its been one of those roller coaster emotional days. I have the best two boys a mother could have and i LOVE them sooooooo much.

Hell of a Day!

Brody's day has been the worse day for an Autistic child, as he has had strangers coming in and out, and so many people touching him for tests.
To start with he had a nurse put the tube up his nose again, while i had to hold him down by sitting ontop of him. Then within 15 mins after it the blood lady come in to take finger prick to get some blood, but because he wasnt bleeding that had to do it 3 times. He has had this before with no problems but once he got frustrated with the nose, that was it, he did not want this either. By this time i got yell at, hit, told he hated me and scream right in my face. But thats ok, as i dont blame him, i would do the same thing. He then did tell me he loved me and gave me a cuddle. Thought that was all finished and finally got him settled, when two nurse come in and we all held him down and gave him a injection in the bum. Boy that was tuff! He did not like that at all.
Brody was starting to go to sleep and then broke out in welts again, Doc was called, Lack of communication happened and they gave Brody the one of his meds the wrong way, which then like before made a reaction. They fixed the problem so it wouldnt happen again. Lucky i was on the ball and worked it out and told the Doc. As he thought it was from the chemo injection, but he has never had a reaction to it. Should have been a nurse!
Brody temp has dropped with panadol, but goes up again later, still having oxgyen when sleeping and is going to have CT scan tommorrow. Levels were to low for stem cell collection.

After all that happen he had people that did not read his story or they dont understand him, and just come in expecting him to be like every normal kid and hold the part of the machine that goes on his finger (see picture) with no worries, SORRY not normal child, he wouldnt hold it even though he has, He just had enough, and she got a bit shirty with me, as i told her he had enough and not to worry about it, as it was not important at this time. She then ripped the thing out of his hand. I was getting ready to go off. I bit my tounge.
This is the type of things mothers and families have to go through all the time 24/7 with people who dont know anything about Austium or just cant be bothered to even read about it and know Whats the best thing for the child! Austium should not be ignored it too, is just important as having cancer. As you have to learn to live with this for your whole life and effects every day living. Family and friends need to learn more about it before they make a comment.

Brody the Vampire!

Scary stuff last nite as Brody peak at 40.2 and his breathing has still been low and needed oxygen. Doc's have said all results are normal, but X-ray has shown a little cloud on his chest. Its is nothing to worry about as he is now on more stronger meds. Doc will book a CT scan for his chest next week. Brody's bloods are to low for the Stem Cell collection, so they had to give him more blood, which did perk him up. As Ronald House at Newcastle would know how it does that to him. They are thinking about doing the stem cell tommorrow, thats if all his levels are ok.

Brody had a big cry today, as he wanted to go back to Nabaic with Bill, I think he is like me and just wants are normal life back with Bill, at Nabaic school, the animals and all our normal family activties. The nurses changed us to a new room, which is bigger and has more space to play when he gets a bit better. That cheered him up.
Other wise the day was pretty much the same as every day.

Not a Good Day!

Last nite was a hard night again as the oxygen machine kept playing up and Brody got a bright red rash with big welts from the meds. So Brody and I didnt get much sleep.

Today Brody's temperature has not gone under 38.0 and peaked at 39.9. He looked like he was going to go into a sezisure. He was very shaky and complained of sore legs. He has been very sensitive and has his cranky pants on. He nearly pulled out his centre line, which is in his chest. As he has had enough and wants to go home.(Me too) This is one of my worse fears, that he causes more harm to himself. The Doc's have changed meds as he has not responed to the others, so hopefully these ones will work. They still have not said any results of whats wrong. Brody went for a little toy car ride down to X-ray. They x-rayed his chest because of his breathing as its all the time now, not only when he is sleeping. So we have had to Tie up teddy with the oxgyen mask all day.

Brody had his Nanna and Daddy come to visit today, which he enjoyed and also my darling Bill was here with us. Poor Bill was shocked and worried about Brody. He really thought Brody was going to have a fit. So its been a very stressful, worried day today. The second worse fear of mine is Brody has a sezisure and we loss him that way, as we nearly lost him when he was 2 years of age. He had a 2hour fit back then, with breathing problems, so today really had me shaking in my boots. I actually felt the earth move with my feet, have been told that this is stress.

Quite Day!

Last night was very stressful as Brody had to have oxgyen on all night. His breathing was fast and he wasnt getting enough oxgyen. He would not wear the mask, so nurse Jessica put the mask upside down on teddy. Brody then hugged teddy, while the mask was near his face. He also had the machine hooked up to his finger. If it come off, it would beep, if he was low on oxgyen it would go off. So for me it was a nitemare. I had to get up every 15mins to half hour to fix it all up, so he would be comfortable while he sleeps. His temperature was still up and down all nite.

Today he has been very stubben and less active, he has lost another kilo and was sick after the little bit of lunch he had. His temperture is still hitting the 38.9 and dose not come down much even after panadol. We still have no news about what is wrong, but doc said we cant go anywhere until his temps have stopped for 48 hours. So i would say we are in here till mid week or later.

Grandma stayed with me again today, and i sneak a little light sleep in but still very tired and worn out, even having problems walking. Hopefully get a good night sleep tonight and then i will be good as new.

So its been a quite and dull day today in our little room. Brody has started to show signs that he is sick of this too, by hitting, yelling, trying to jump out of bed and not doing what the nurses want. How are we going to cope with the 6 weeks of the transplant? Oh No! and Now he is watching Chitty Chitty Bang Bang. HELP!

Ups and Downs!

What a day, Brody still had a high temp this morning, but had a little bit more colour in him then yesterday. As last night they gave him his approx 9 blood tranfusion. He was still less active and glassy eyed.
We had lots of hospital staff come in and talk to us today, as an OT come in and said she would help with ways we can help Brody in the clinic and what goes on around the hospital and what he needs to do in these areas. We also had the social worker come in and check up on us. A lady from the group called Cure our Kids come to talk and give us some useful tips. The play therpiast gave us some water play toys, painting and playdough to borrow and play with. Brody squrted water up to the roof and fell back down onto my head. He laughed and so did the doc.

Today Brody is having meds for an infection (unknown at this time) and fluids as he is not drinking much. He also still had his chemo (Asparaginse and Vincristine). It took 2 nurses and me to hold him down to give him his injection. I also got hit and told he hated me. I was in tears, you think you would get used to it, but some days it can just take over your emotions.
Brody also had to have a tube which was like a vac shuffed up his nose, which again took 1 nurse, my mum and me to hold him down. This time it was mum and me in tears. This was to check if his running nose is some sort of virus.
They sent a sample of Brody's wee, wee off as the nurse tested it and it had signs of blood and signs of an infection. The nurses also collected bloods again to check for anything.
All results from these test we will not get back till tommorrow. Sorry, you to have to play their waiting game.
Brody's temp has been between 37.7 to 38.9 all day. His breathing has been faster then normal and they wont to put some oxgyen on him in his sleep tonight.

He slept the afternoon away, until our lovely friend Chantelle come for a visit, Brody perk up that little bit as he has problems with me talking to other people, but Chantelle knows what Brody is about. She brought us some lovely gifts that some of her wonderful friends gave to us. Thank you to those wonderful people and Chantelle for everything. Brody loves his new hat and i love it too, cant wait to one day go shopping again and show people when they think he is playing up. As he is no little naughty kid, he is Autistic!

Brody would have started school today at Forster Primary School Support Unit, so it has been a bit upsetting to know he is not going with his friends and be able to do normal things like all the kids, as he talks all the time about going to school and eating his lunch from his lunch box (like this, see. Brody would say.) Its hard to not be able to make your child happy and enjoy life like others.

Unexpected turn of Events!

Brody was not all himself last nite as he had a bit of a temp and then this morning he was 37.9. I took him to get his bloods and then to the clinic, sat around waiting again. Brody got a platelet transfusion and they told me to keep an eye on him, as the expected him to be coming back. Went home and within 2 hours his temp went to 38.2. Anyone with cancer has to go in at 38.0. So i took him back to the hospital where they did test, his temp got up to 38.9 and he needed a blood tranfusion. So now we are in the isolation ward again and dont know how long. Brody is just sleeping while having his bloods and fluids.But i could tell he was not his normal self as he was very wingy, senestive, dose not wont me to touch him, and very unactive. My poor little man is at the start of something that will get worse before it gets better. Even with all this today my little man still used his manners and said thank you to the nurse!