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.

Rest Day!

Brody slept in this morning and didnt seem to be so active. I thought he might not feel well so i gave him a tablet that stops him from beening sick. This worked well as by lunch he was hungry and ate half his lunch. We played around the house today and Brody had a 3hour sleep. He has not stopped playing his DS. He enjoyed playing in the parramatta Eels room, in the play ground, and yes found the car he used to have an obsession with and drive us all crazy, pushing it fast around the house. We also went for a drive around Parramatta Park, just to be able to look at something different.

Fun Day!

Today Brody was so excited as Chantelle from the Autism and Aspergers Support Group come to visit. She brought a DS for Brody from the Group. His face lit up like a christmas tree, as he has wanted one for so long. Thank you to this wonderful group, who has done so much for us. You have made a little boy so happy and when giving him his injection he kept playing with his DS and didnt even cry. Thanks again.

Brody had a sleep and then we went to Bill's sisters house for dinner. Which was a wonderful cook BBQ. Brody and i ate so much as we have not had a BBQ for so long, it was really yummy. Brody also got to have a swim in there salt water pool, as he hasn't swam for over 5 months. Brody use to go to swimming lesson and our last lesson he started putting his head under the water for the first time. But then he fell sick and John Hunter told us he could not get his dressing wet. Now westmead hospital has given me a dressing to put over the other ones so he could have a little swim. So I let Brody go for a swim today before he gets to unwell and before he starts his full time in hospital. Bill and i were so pleased and happy to see him smiling, laughing and having fun like he use to. We all had a great family day, which we have longed missed and just for a little while we felt normal again.

Busy Day!

Today Brody was feeling so much better. I gave him no sick tablets which helped him alot. Early this morning we visited Lane Cove River Tourist Park, which is a great spot for a hoilday or just to take the kids camping for a weekend. I use to work there and they become another family for me. They gave us a nice morning tea and a lovely donation. Brody had a good time as he got to ride the rented bikes, look at the wildlife at the park and have 2 ice-blocks. Thank you to them all.

We then went back to grandma's when the community nurses come and meet us and showed Brody Alex the doll they use to show children different things that will happen to them. He really liked Alex as she had the same cords as him.

Then Bill arrived and we went to Ronald House at Westmead to spend some family time together like we use to do. Brody again went up to the plastic Ronald and sat on his lap and started to talk to him. So cute..........

My brave little boy was so good when i gave him his injection, as these ones really hurt.