Easter Weekend!

Brody has had a great time. Domenic and Ethan were at Grandma's house as their daddy had to work. So we had lots of fun! We first walked over to the park, before any body else got there and before it got to hot. They played hide and seek, went on the swings and played with the plane. Grandma then doubled Brody on her scooter and we all raced back home for a drink.

After our rest, we Mummy Easter Bunny and Bill hid all the Easter eggs in the house, while Grandma and the boys stayed in Brody's room. The boys then come out and had so much fun running around looking for the eggs. We then put them all together and spilt them equally between them all.

We then went out the back and had a Easter egg and spoon race. We had eggs every where, but we had a ball!

We also did painting, dancing, playing guitars, watching Tv and playing what's the time Mr wolf. The best was playing duck, duck goose with Bill as we made him run around the place and Grandma's dancing. Brody and the boys had a really great day and had lots of fun eating eggs and just beaning together.

Brody has been ok, he has slowed down alot and is not so active. He is very pale and might need bloods soon. He still has that running nose, but he is still eating alot and making most of his time as he can. He is not looking forward to going back to hospital next Wednesday.

We also had a great day on Sunday, Brody got way to many Easter Eggs. The only problem with that is he is not eating them. He eats a bit and then leaves them, so guess who had to finish them off. Oh! How i have to start this diet next week.

We wish everyone a Happy Easter and all the best! xoxoxox

Hospital Visit- CT scan

Today we arrived at the hospital at 8.30am, Brody had to be starved with no food or drink. They did a x-ray of Brody's chest and then we went to the clinic to wait.

The wonderful Chris from ABI, came to do some behaviour strategies on Brody, which turn out to be so much help, as after Brody did his bloods, we got to see the doctor and she was in and out and confused about what was going to happen. Chris took Brody out to play at starlight room. Thanks heaps Chris for all your help.

Brody x-ray was normal so no operation on his cords, he was booked in a 12.00pm to have a CT-scan. We were in an out of the doctors a couple of times.

The last time we went to the doctors room , we had 3 of us in the room, the doctor had her plum on her table. Brody grabbed it and none of us could get it back, then next minute he took a bite out of it. You might laugh or think its funny, but i didn't think so as they changed the TC-scan from 12.00pm to 4.30pm. So then i had to leave the hospital and go back at 3.00pm and still starve Brody for the rest of the day. Was not happy. The doctor did say sorry as she shouldn't of had her plum there in front of a child who is starving, not to mention a Autism child, who doesn't understand he cant eat or doesn't understand he cant eat the fruit on the table.

The hospital had people given out Easter Eggs, so Brody got all these chocolate eggs but he could not eat them, was he mad with me. I hid them and will give them to him at Easter as to much chocolate sends him crazy.

We got back to the hospital with Brody starving and wanting to have Mac Donald's, he went to sleep and they did the scan, then we had to wait till he woke up and we then went and got him his mac Donald's as he had to wait for so long. We got home at 7.00pm. We are now tired and buggered.

LOng wait to get home!!

We had a long wait this morning, as we had to wait for Brody's platelets to defrost. So buy 2.00pm they started the transfusion. By 4.00pm we finally got out and went home.

Brody and i were so excited about going home and all he wanted was to go see grandma and grandpa and get pizza.

Brody still has that nasty running nose and a bit of a cough. He will need to go back on Tuesday where he will have a x-ray and if his cords are twisted he will then need to have a little operation to twist them back around. Also to check to check his levels etc.

My thoughts are with a beautiful family i meet at Westmead, as they have just lost their little 6 year old Oscar to cancer. It is so sad to see children you know go through all this and then to loose them. You will be missed Oscar!!! xoxox

Day 14!! Excited

Brody hasn't had a temp since Wednesday night, so its is now official that we can go back home to grandma's tomorrow. We are both so excited. The nurses all ready took off his drips and things, so we went for a run around the hospital. The poor bugger has weak legs and his balance is a bit off, but he was so funny running around as he was going this way and that way. It was good to see him back to his old self.

He still might need a top up of bloods tomorrow before we go or we will have to bring him back if he gets too low on the bloods on the weekend.

We are booked to come back into the clinic on Tuesday, where he might have to have his cords replaced, as it showed in the x-ray that his cords have moved in his chest. This means he will have to be operated on and could be a day op or just have us over night.

But so looking forward to tomorrow and Brody has already said that tomorrows dinner will be pizza. Here we come Grandma and Grandpa!!!

Day 12, and 6 months today!!!

What a busy day we had, first was a horrible time with a nose test and throat test. Which Brody again had to be held down and he cried his little heart out. Very sad!!!

After we got over that, the fun and happy, lovely lady Jill and our new friend Chris come and played some behaviour activities with Brody. They have so many great ideas and give Brody so much more than they know they do! Thank you!

We then had a special visitor from the hospital come and play some great music with us. Brody has always love the guitar as his brother Luke plays one. So he had lots of fun playing and making lots of noise. It was good to see him beaning happy and not so frustrated with the world.

Brody has had yet another temp of 38.2, but it went back down within an hour and a half, without panadol, so hopefully they want make us stay the 48hrs from that one. He also had to do a poo test today, was worried about that as he has only done one poo in the 11 days, they are giving him something for it but Brody just wont go. Yeah!!! He did finally go tonight! I think he is starting to feel and get so much better, his levels are still low at 0. so they still might keep us in until they get better.

Its so hard to tell you all what this is like, as if you haven't been through this your self, you wouldn't understand. Try picturing beaning trapped in a room, with no way out, no one to talk to and not knowning when this will get better. AS you can tell, i am having one of those days were you just feel down, lonely and depressed. You hear everyone talking about their lives and what they have been up to and how happy they are, i am so happy for them but then so sad for us as after 6 months today we are still struggling to keep our heads above water.
I think one of these days i am just going to have a meltdown as i have had so much hurt in my life the last 4 years that my heart is starting to pain. I haven't really had the time to fix my pain, so now its all just catching up with me. Oh well!!

Hope you like Brody the rock star video!

Day 11, Bandage Bear Week

Got no new news as everything is still the same. He is still having temps and a running nose. Doctors have said they will run some more test during this week, to exclude things, but really its mostly his body reacting to the chemo. His levels are still low, so they are still keeping us in isolation.

The nurse and i are trying to push for a sleeping test as he has had breathing issues since he was a baby and its only when he sleeps. I have been trying to get one for years, and now that might just happen. But when he is better.

Remember to support the hospital for Bandage Bear Day. Brody and i both had a cup cake as our ward had cake day. So we helped support our nurses by buying their cakes. Yummy!

Day 10 in isolation Ward!!!

Brody slept in till 9.00am this morning, it is the first time ever, I am just in shock!!!
We had a normal morning of games, TV and Nurses coming in and out. Brody was a bit angry and hard to please today, he wouldn't do what the nurses wanted him to do, it was a real struggle. Just one of those horrible days.

Brody had yet another blood and platelet transfusion, his levels are very low and still can not leave the room or even think about going home until he has no temps within 48 hrs and his levels go up higher. They changed his medication today to some thing a bit stronger.

He then had a afternoon sleep and awoke with a temp of 39.4. The doc was called in again and they have made the decision to up the dose of medication. Tonight Brody also had a chest x-ray, wont get result till tomorrow.

Hopefully now with the medication changed and dose put up we might see some improvement, otherwise i can see as in here for yet another week.