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!

Australia Day!!!

Happy Australia Day everyone! Thank you to Featherdale Wildlife Park for Australian Boxing Kanagroo, Brody loves it.

Brody was very down today, his levels are low and i think he might need a blood or platelet transfusion some time this week. He has been very sensitive, crying at the drop of a hat. So we did not do much today and because it was so hot out there. We stayed at Ronald House and then drove over to Grandma's. While Brody and i had a sleep Bill left to go back to Nabaic. I hate good byes. I picked up Grandma's car and drove back to Ronald House. Brody did not eat very much at all today except some vegimite toast. He had a little play outside and he locked us out of our room, lucky the staff at Ronald's have spare keys.

Brody and i then sat around watching movies. I also gave him his injection, as i believe he is getting more used to this now.

Funny thing happen today, at the breakfast table this morning, i was looking through a magazine when Brody told me to stop. He pointed out a lady and man on their wedding day and said that was me and Bill in love. How cute is that? I love my little man's sayings.

Clinic Visit!

First part of our day we rushed to Centrelink to show ID so i could get a one off payment, Brody was sick in the car and had to rush back to the house to change him and wash his car seat. We had to be at the hospital before 10 to take bloods, which Brody did really well. They did a finger prick again, he was telling the nurse what to do. He loves the rountine and knows what happens.

Then after that we had to go and sit in the clinic, waiting, waiting and waiting. At this time centrelink rang me to say the one off payment was not approved as i have recieved a single parent penison before and on part carers pension now. It dosent pay to ask them for help.

While we were waiting Brody was really good, he only ran off once and sat down most of the time playing with his DS and watching the movies. We also saw the Bone Marrow lady, where we had to sign all the paper work. She told us his levels are too low at the moment to do the stem cell on Wednesday, so maybe thursday this week to wednesday next week. No result come through, but she told us that they would not use me or Joel for a match, but luke has passed 2 tests, we are waiting for one other test to know if he is a match. The waiting game again.

It was about 3.30pm when we finally got in to the treatment room to get his dressing change, thing that i put his injection in changed and then his sharpie. He did not like any of this and was crying and hitting me. Think by that time he was very tired. Sometimes i break down and cry too, as its so hard to hold him down still, when you know he dosent wont it and that it hurts. But i do try and be strong cause even though i have to be the bad guy, i know he loves me still.

We got out abut 4.30pm and went back home to rest.

We wish everyone a happy Australia Day and remember to say G'day to everyone.