Day 38- Post Transplant! HOME!!!!

Wow, we started the day with our lovely nurses from night shift and day shift coming in and getting us out of bed to have a farewell and photo. Thank you so much to all the nurses as we have felt like a part of your family and will never forget what you all have done for us. We love you all. xoxo

Then Brody had his last sharpie for now, and he did such a good job as he didn't even cry. So proud!! The doctor's come in and wished us luck as some patients end up coming back straight away or days or week later. They also stay in longer then what we have stayed, so hopefully all will go well. Cross your fingers!!!

After collecting all the medications, supplies, machines we finally got to go home, we arrived home at 2.30pm. Bill turned out a little bit later, as he was so surprised, he hasn't seen Brody for the whole 10 weeks.

The photos are of all the great memories and all the supplies we need. Hope you enjoyed them. Brody and i also support Daffodil Day, for all how had cancer and have cancer. We are thinking of you all. xoxox Think it was a great day to leave the hospital, it might be a good sign.

Thanks everyone for your support and comments, it means alot to us as you have got us through this and kept our hope high. THank you!!! xoxoox

Day 36- Post transplant.

Had a better day today as the nurses woke us up to go early to get Brody's CT scan and BOne Marrow. As they cancelled it all on us at 8.00pm last night. Every thing went really well. The CT scan come back normal, so we still don't really know what is causing the breathing and his cough. But they say it will soon go away. We wont find out the bone Marrow results for a while.

The Big CEO from Phillips Australia came in to drop of some appliances for the parents room. Thanks to Michelle Bentley a dear friend of mine. She has done a wonderful job getting things for all the parents and children in the hospital. It takes a special person to take the time out to organise things for others. Thanks Michelle. xoxoxo

I have also started packing all our gear, as i think i will need a truck to get it all home. lol

Brody is so excited and cant wait to get home. He has told Grandma what he wants to eat all ready. He had his nine hour poo medication again and his different types of medications. All the nurses have been coming in to say good bye to us.

We now have to come back 3 times a week for different things, and if Brody gets sick or any thing we then go back into hospital, so we are going to try very hard to keep the bugs away.

The room looks so bare now and i think of others who have to stay in here after us, they don't have much to look at. Think i will have to try and get some painters to visit and make the rooms look better.

Day 35, POst transplant

Nothing much to write, as we have sat around all day waiting for Brody to go in for his CT scan and Bone Marrow op.

Brody now has not had anything to eat for over 24 hours and is very hungry. The doctors have cancelled the bone Marrow op as they have gone home, but said we will still do the CT scan. So we are still sitting around waiting and waiting and waiting.

Its going to be a long night so nothing to write again till tomorrow. Thanks

Day 34- Post transplant

Brody had a great day today, for the first time he painted the number 10 and the letters B and M. He told me the M was my name! I said Wow, yes your right, as M stands for mummy. I was so proud and excited as he was having troubles even saying the number 10 for so long and now he could paint it and say it. He has know the letter B but he has found it hard to do another letter, so when he did M. It just made my day!

He had a transfusion today and all the 50 different types of medications he normally has. They also stop the feeds tonight, but he still has to have extra fluids in the nose tube as he isn't drinking enough. He will still need the feed tube in as they are worried that after the steroids are finished he will not eat much.

Tomorrow is the big day with the CT scan and bone Marrow test. I hate when they put him under as you are always worried that they might not pull through it. They don't normally do this test so soon, but they need to know what is going on with his chest. Hopefully the bone Marrow will be fine, as i don't think it would come back this early, but you never know, i guess!

Thursday Brody is having the 9hr treatment for the poo bug again, such to make sure it wont come back. Then hopefully on FRiday they will let us go home, if all is well with the results.
Can't wait for the break and the rest.

I found out today from Woodbury the special Autism school that they wont take any new student for next year. So now i am still looking into other schools in the area and trying to find one that will give Brody the best chance and understand all his needs. A huge thank you to the wonderful people from ABI for all there help in supporting us through this school experience.

This has been a long hard road for me and Brody, i just cant believe how well he has done. He is so tough to get through all of what he has been through. He is truly amazing!!! He still has a long way to go and it will never be over, as there are so many things later in his life that could happen. As i mention before in the later effects, such as another cancer, no kids, lung, heart and other problems. But now we are so more prepared for anything and will will tackle it when the time comes.

Day 33- POst transplant

Today Brody had a normal blood test to check a level of medications and he also had a sharpie to test the chemo level again. Turn out it was too low so needs to take three tablets twice a day for that one. All up 12 medications twice a day, some i put down his nose tube and others need to be tablets. I would be know good if i was sick, as i still cant swallow tablets.

The doctors come around and the young doctor told me that his x-ray was worse then before, (What ever that means). But the real doctor told me that they are doing a CT scan on Wednesday and they will bring the Bone Marrow test forward early as well. As this stage its not that good going under too many times. So they will do both at the same time.

They said might be able to go at the end of the week, but i wont hold my breath as things always change and if they find something with the CT scan we will be here longer.

Brody is not himself as he is very quiet and not doing to much, he is always tired and his breathing seems different. He still has sore legs and finds it hard to walk. But he got out of bed for a little while while we did school work and drawing.

The doctors have also changed his feeds, as he is eating lots, but have told me that all kids go home with the feeds, so they have ordered a pump, bags and feeds for us when we are ready to take them home. The nurses make things look so easy when they do the feeds, but i still need lots of practise but i am nearly there.

Day 31 & 32- Post transplant

Saturday was a normal quiet day. Brody had to get a sharpie as his levels to high from one of the chemo medications that help the GVHD and Brody's body accept the Transplant . The doctors come in and said he can go of night feeds only as he is eating like a horse. They also told us that on Sunday we could go on a gate pass to Grandma's house. Yeah!!!

Sunday come and we were both so excited to go to Grandma's but the doctors said he needs a chest x-ray as he still has a cough. Therefore we had to wait, also he had to have another sharpie as his levels were to low this time. We finally got out at 11:30am and got to Grandma's and had a lovely bake dinner. Then the hospital rang me and we forgot to get his medications so i had to drive back and pick them up. So now i feel tired and cant wait to go back again and have a sleep.

Brody is having trouble walking, and needs the wheel chair, he also gets very tired and seems very lost as he is not in routine again. But he really enjoyed staying home and having Grandma's cooking.

The doctors have said he might have to have a CT scan on Monday or Tuesday, so we will have to wait and see if we do get out next week. Even though its hard staying there and you don't have a life or you feel like you are in jail, I will really miss the nurses as they all have become like family and you really get used to having them around.

But this is not over as if Brody gets a temp or anything we will be back. Its going to be another long hard year and i am just hoping Brody can keep going.

Day 30- Post transplant

The amount of food Brody is eating now is so much, that his little tummy is getting bigger and he looks like a little Buddha, you can rub his tummy for Good luck! LOL

We did the normal stuff again today, Blood tests, painting, drawing, school work, nurse checks, medications, clean sheets, shower, doctors, Tv and DVD's, DS, and eating and more eating.

The young doctor come into me today and said that Brody is pretty good for a Autism child. Oh how mother's with Autism dislike when people say that. People only see what they see in front of them there and then not 24/7. It really puts the parent down as we have done some hard work with the children to get them to be the way they are. Also in Brody's case the chemo has help to slow him down and this experience has forced him into the way he is now.

Unless you really know the child, you shouldn't say anything. As when Brody was diagnosed i had a very hard time with him and i was doing it by myself. Even Grandma and GRandpa notice the difference from when we lived with them before he was diagnosed to him beaning diagnosed with Autism. His teachers had a hard time too, to the level were they couldn't take him anymore, and after you go through a couple of day care centres you really wonder how he will fit into normal life when he can't fit into Day care. Its very stressful, and when people say he seems normal, and alright you just want to say, WE here you take him for a week and tell me then how normal you think he is. So please if you know someone with a Autism child don't say they seem alright!!!!! Thanks

Not much will happen over the weekend so will right one post on Sunday for the weekend.
Thanks again to my family and friends for all your help and support xoxoox