Started the heavy duty chemo

Brody started his heavy duty chemo today. It is called Thiotepa and it only takes hour to give him through his cords.
Side effects- nausea and vomiting, dizziness or headache, pain, high fever, drowsiness, confusion, mouth sores, liver damage, darken areas of the skin, skin rash, infertility and also burn areas of the folds of the skin. Therefore having to have the 4 showers a day and wipe down at night.

He took a bit to get him to have showers but once he is in he loved it, as he shakes his bum and says oh, la, la....!!!. Thanks again to ABI for the tools to get him to comply with things.

He has slowed down alot today but still is happy and wants everything. He is so amazing to watch him go through all this heavy duty stuff and still battle on. He is so brave and i love our little story's together we tell each other before we go to sleep.

Our family also got some sad news as my Pop's twin sister is in hospital as she had a stroke, our prayers and thoughts are with Aunty Alison and all our family members in Melbourne.

Also Pop's special friend Daphne past on at the age of 95, so our thoughts and prayers are with her and her family. She will be sadly missed as Daphne and i shared the same birthday and as she was a inspiration to me. xoxox

Last day of full body radiation!!

Today was Brody's last day of full body radiation and again he went really well. His head is red, which makes his hair look blonder and his body is a bit pink. The ladies and men at the radiation clinic all loved him and gave him some balloons and a care flight bear for his birthday and last day of radiation. Thank you to the staff at Westmead Radiation hospital for your support and understanding of Brody's needs.

Our lovely nurses again stocked Brody up with anti sick meds and he wasn't sick at all. He was more active today as we painted and played with bubbles and played hide-n-seek in his room. Its wired how first day was bad then as the days pass he gets better, thought it would have been the other way around.

He is still having feeds during the night and also his fluids and meds through a drip so there is cords every where, which makes it hard for shower time. I am so proud of him as he is so good in the shower now. Thank you to ABI for showing me the tools i needed to get Brody use to things and to do things, as he is coping so much better now then before. Thanks again.

Tomorrow we start the new chemo, where Brody has to have the 4 showers a day. Its going to be a wet and busy couple of days.

Better Day!

We had the same busy day as yesterday but this time Brody had sickness meds all in his system and ready to go. This made a big difference as he wasn't sick at all today. His skin is a bit pink and he looks really flushed in the face still.

All radiation went well and they have started more new meds, but no other new news. Brody is coping really well, with everything. One more day of radiation to go.....

Today my thoughts were with my family and of my sister Sonya as today was 2 years since she past. We miss her dearly and the pain is still strong. We loved her with all our hearts. My poor mum and dad have had so much to deal with these past years. They are my inspiration and i love them. xoxoxox

Busy, busy day!!!

ok, its 8.00pm and its the first time i have been able to take some time out and do something, while Brody is watching a video.

Brody woke up at 2.00am this morning and turn on the Tv and played DS, then he feel asleep again and the nurse turned it off, therefore i was up most of the night with the nurses coming in and Brody waking up.

I then got up at 5.30am to get ready for our day, while Brody sleeps in. At 7.00am the man come to take us to radiation. The radiation took an hour and we got back to the room at 11.30am. Brody then started to vomit and vomit and vomit. They gave him something for it which helped him have a half and hour sleep before we had to go back again. So i was busy all day washing out sick bowls and holding them up and getting tissues to wipe his mouth. It was really hard to watch him go through this, and its not even that bad yet.

We went back to radiation and everything went well, but as soon as he woke the vomiting started again, again and again until they gave him something again for it. He has only eaten 4 Jatz biscuits all day. This is not like Brody, normally he eats like a horse.

We got back to our room at 7.00pm and then i had to give him a shower and get him ready for the nurse to give him all his meds. They are also giving him a transfusion which he has never had before, it is called Intragam, its a blood product and helps to fight infections. Brody's levels are very very low of this product so they have to give him some more tonight also his normal feeds through the nose.

So we are both very tired and worn out and cant wait to get off the computer to go to bed. We still have 2 more days of this and then the next lot of days is 4 showers a day for 4 days, which again will make me not have much time to talk or message people.

Yet another blood transfusion

Today was pretty quiet, as not much happened. Brody is doing well. His counts were low so he had another blood transfusion to add to his list of many. They have continued feeds through out the day and he is sit eating alot of food, its like when he was on steroids but he is not. LOL

Brody is less active as he has played DS and watched Tv all day. He punched a nurse in the stomach really hard today, but he was only playing around this time. I felt so bad and Brody did say sorry. Busy day tomorrow, its all a go................

My thoughts and prayers are with a friend from the hospital as her daughter only has minutes to days of life left. Its really hard seeing her go through this and i wonder how i will cope if something happens.

As Brody has been in my life since he was born. Brody has had problems since day one and needed extra support and alot of work day to day. I have been there though everything and all his milestones, so i wonder what will happen after????? No child or parent should have to go through loosing their child.

My friend feels the same way and i really feel her pain, so please just have a thought about people that are going through this experience and give your kids a hug and tell them you love them. xoxoxoxox

Popped the blister!!

Today the doctor's come in and had a look at Brody's ear. They decided it so probably from radiation but they would pop it and take a sample just in case. Brody was very brave as he picked a prezzie from his brave bag while the doctor popped the blister. He is my superhero!!

Because his counts and immune system are going down earlier then most children before transplant they will start some new meds to prevent chicken pox and other virus today.

Otherwise he is still doing well and playing games, DS, colouring, Tv and more. He is eating lots and is cheeky to the nurse.

Early to bed, for us as i am getting so tried from the stress and worry of everything, by 5 o clock i am ready for bed but still have to shower Brody and get him ready for his feeds and meds.

A huge thank you to Grandma and Grandpa for looking after LUke and washing Brody and my clothes and bringing in everything. We couldn't have did it with out them. They are the world's best parents, have always been there for us. xoxox

The clam before the storm!

Brody is doing really well with his nose tube, he hasn't tried to pull it out again. Thanks to all the work from ABI and me to keep practising with the nose tube every day. I believe if we didn't do this Brody would have been alot worse. He gets feeds in it at night, just to see how he will go as they will be starting full feeds on Monday.

Brody still eats and drinks with the nose tube and can still swallow his tablets. The nurses and i just cant believe how well he is at this time, as most kids are really sick but he just keeps on going and going.

Brody has a blister on his ear from the radiation, which they will get the doctors to have a look at but at this time he is coping really well. There is not much to report as there is only weekend doctors on and nothing is happening except for his meds and feeds.

Thank you to family and friends for the wonderful Birthday prezzies, Brody has had a ball opening them all and Grandma has brought more video's with his money. He is also non stop playing with the Ds game. Thanks again for my lovely gifts as well. LOve you all. xoxox

So at this time its all quiet from where we are sitting, but the storm comes MOnday. The next few weeks it will be very hard for me and i will be very busy doing different things for Brody so don't worry if there is no blog entry or you cant contact me , i will try my best but my son comes first and i will be getting rest when i can, as nurse come in more often at night then usually and so i wont get much sleep at all. But don't worry i will try my hardest to update facebook and blog, just give me time and space. Thanks all for your support. xoxoxox