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

Day 3- Radiation and nose tube

They changed times on us so we were late to radiation today, but it didn't matter as so was the doctor and also the machine broke and they were getting it fixed. So we had to wait half hour before we started. I explained to Brody that he would be getting the nose tube in and could not touch it.

While we were waiting i was reading a book about angels, Brody wanted to read it, he looked through the book and saw the pictures and said i know them, I said you know the angels? He said yes they help me when i go to heaven forever. Oh my!!! I was in tears and said yes they help us all.

Everything went well, until Brody woke up and he tried to pull it out 3 times, it took the nurse and me to hold him down to stop him from touching it. I explained again and re-directed him to other things and he stopped trying to pull it out. So far he has had it in all day so hopefully he will not try to pull it out again, i have just got to keep reminding him.

His counts are getting low so will be getting a blood transfusion soon and might have high temps on the weekend, i have to keep an eye out. His tummy has gone down and they think it could be from not doing poos, but otherwise he is still eating and still doing well.

Rest Day!

Radiation was cancelled today as they had to do a machine cleaning or something. Therefore Brody and i had a slow rest day.

Tomorrow we have today's last head radiation and the doctor's have told me they will be putting the nose tube in as well to see how he goes. Bit worried about that as he still hates it and we only got up to a hour and a half to wear it on his face and 30 secs with the tip of the cord into his nose.

Brody has finally gone to the toilet, but i am a bit concerned as his tummy and cheeks are a bit swollen, i will talk to doctors tomorrow about it. He is still eating lots and still has lots of energy but gets tired quickly. His counts are coming down slowly and next week will be the biggest and busiest part of the whole thing.

Transplant doctor came in last night and talked to me again about what is happening, She told me that they can cure most children but some they cant. I really feel that they aren't confident and wonder if i am doing the right thing for Brody. This is very hard for me as there is so much pressure and stress, its hard for all you to imagine and i hope none of you have to go through this. The whole 9 months have been so scary and i think its all starting to catch up with me. But i just take each day as it comes and will keep going no matter what. I am just hoping nothing else will stress me out, so i can just concentrate on getting Brody better, as all this is about him and getting him better.

Day 2 Cranial Radiotherapy

Before radiation Brody played with his DS and then we went into the radiation room.

Brody showed the radiation people his true colours today as he hit and kicked all over the place. They all tried to stop him and clam him down, which just makes him worse. I wish people would just leave him and let me do it as i am the only one how knows how to clam him and get him around. I then got him to clam down and then he went off to sleep.

Everything went well again and he woke in recovery and ate a nice choc chip cookie. Brody is again very tired and he is more red in the face today, it looks like he has been sitting in the sun to long as hopefully you can see from the last photo.

The doctors are going to give him something today for his bowel as his back is sore and bottom from trying to push. Poor little man!!!

The doctors also reminded me from now to 6 months time Brody will need to be isolated, even at home, no sick visitor's over, no shopping centres, parks and no public places. When you just think it will be nearly over and you can live a normal life we still have a long way to go, but what ever it takes to get my boy better i will do! I am not worried about anyone or anything else, except getting Brody better. LOve him so much xoxo

I also meet up with the Dietitian today, she was going over with food safety, and what foods he can eat and cant eat, as we also have to stick to this food safety for 6 months after as well.

Day 1 Cranial Radiotherapy

A big thank you to Copiworld at Seven Hills for their generous offer to Laminate Brody's Superhero posters. This will help Brody feel more at ease in his hospital room and give him the strength to keep fighting. Thanks again.

Today we were taken to the adult hospital for his cranial radiotherapy. Brody did really well accepting that they were given him meds in his cords to put him to sleep. After he was asleep i left the room. I then had to go and wait in the waiting room.

After half hour they called me into recovery, where Brody was still fast asleep. Once he woke they took us straight back to his room, where all he wanted was food. His head and face were a little red, but faded after a while.

We had a big sleep today as they told me it would make him tired. But otherwise everything went well. They have also started to give him some new meds to help his stomach for transplant.
Thank you for everyone for understanding that there is no visitors allowed as Brody is in isolation and his counts are going down each day. Thank you again to all my lovely friends and family that have helped us through this tough experience, as we wouldn't of made it this far without you all.
All families that are in this experience suffer from financial hardships as they have to pay the same bills, as they were paying when they were working and then have extra costs on top for meds, extra food, entrainment for brody in hospital and list goes on........ so the outgoings are more than what they get. There is not alot of help out there, they can only help with so much, so please if you know of a family in this situation, donate, buy vouchers, do things around their house to offer support don't just ask if there is anything you can do for them, as people in this situation find it hard to ask for help. Thanks, xoxoxo