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.

What a Day!

Today we had to be at the hospital at 8.ooam to have Bloods and Chemo. We first went to the fish bowl where they took Brody's bloods and also pricked his finger for a different blood test. I thought i would have to hold him down but Brody said dont hold me mummy, i do it my self and gave his finger to the lady. Sooooo proud of him.

Then we went to the clinic were we waited and waited for 4 hours before he went to the treatment room and had his Asparaginase injection. I held him down for this one. After it he hit the nurse, as he dose not like it. He calls it a sharpie. Then we went into the lounge room where he was hook up to the infusion and had his Vincristine. This one makes him have jelly legs, so we will have to use grandma's old wheelchair again.

I saw the social worker again and she is going to organized some teachers to help with some school lessons. Also she got me and Bill in for weekend to Ronald House as we cant spend much time together. Grandma's house has no more rooms, as Brody and i share a room.

Brody again was full of beans and run off 3 million times, and nearly lost him twice. I need a long rope. He was eating really well today and seemed happy.

We got home after 2 oclock and Brody had a sleep, i was ready for one but had to go to bank due to an old credit card that some one used on ebay. (So be warned make sure you check your cards). Cant believe this happen now after it should have been cancelled 2 years ago and i never recieved any mail about the card. Oh well **** happens!

Brody woke up and he pretended to do some cooking. We then had dinner, not alot as Brody was sick while we were all eating dinner. Not just once but twice, i had to change him twice and he was so disappointed he could only wear the spiderman shirt for 2mins. After that we just sat and watched DVD's and Played with the playstation 1. It was a very busy day.

Sad Day!

Today Brody was much better, as he was eating more and running around like a tassie devil. Starting to see the Austium even more as he is babbling more to himself again and just doing more things like when he was 3. I am worried that this is sending him backwards and undoing all our work that we have already done with him.Think it could be because of how he feels or the medicines.

We also had a sad day today, as Luke went back home to Queensland. Brody and i were in tears when Grandma and Grandpa drove off with him. We will miss him so much.

Today the community nurse contacted me and she will be visiting us on Friday. She will be coming to Grandmas House when i need her. Just in case i need help with the injections in his leg or any thing else. Its good to know we have back up.

Brody was also so excited as he got a letter from Featherdale Wildlife Park today, as the staff paid for him to sponsor a Red Kangaroo. So he recieved a cerificate, free pass and pictures of his kangaroo. A big thank you to them.

Brody and i had a big sleep, as we slept for about 3hours, think we both needed it. In late afternoon we did some activties and watch DVD's.
Hospital Tommorrow.

Home Sweet Home!

This morning Brody did not feel at all well, he would not even eat his favourite foods. We had a lot of nurses and young doctors come in to visit us, to see how he was and to see if he would be ok to go home. We also spoke to the people that are going to begin the search for a donor. They will first search babies cord blood, then Australian Adults and then if no matches they will search overseas. This process may take months to find a match, so thats why they have to start straight away.
We sat around waiting and waiting to find out if we could go home. They finally said yes, but by the time we collected injections, meds, did paper work and book our next visit, we got out at 1.30pm.
The nurses unpluged Brody from his machine, and that was it he just run off down the hall and out the ward, we me running after him. He become so active and hypo, you wont have thought it was the same child from this morning. After several runs through the wards, grandma and Luke come to pick us up. Brody again was so excited as his cousins Domenic and Ethan were at grandmas to say hello and goodbye to Luke. He had a fun time with them, it was good to see him laughing and beening a child again.
I gave brody his injection in the leg and his daily tablets before the busy boy went straight to sleep. Goodnight and sweet dreams.