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

Day 29- Post Transplant

We saw the doctors today and they said hopefully yes after next week we will be able to leave the hospital. We will be in isolation for the whole 6 months at Grandma's house. Also found out that in another month Brody will have his first bone Marrow test, which is to see if the cancer has come back already. He will have two of these per month for the first year then one every two months for the second year.

The doctors also told me that the cords in his chest would approx be in for another 6 months to a year depending on how he goes. I found out that they gave him the steroids because his GVHD was getting worse, and then it would have been moderate, so they thought they would get in early. The GVHD can come back up to 3 times or fade in and out like it has been. So then he will be put on steroids again. They are still slowly taking him off them, which can take up to another 4 weeks before he is fully of them. So lets hope it doesn't come back as he is always hungry and put on alot of weight with them. The GVHD wont always be in him, hopefully the steroids will treat it.

Before we go home i will also be seeing the seizure doctor for his seizure medications and results from the EEG. At this stage the doctors have told me that he will still be on the medications.

I am feeling a bit scared to leave the hospital as it has become our safety net. So many more complications can happen while Brody is out of hospital, but i think i am prepared and know what to do if those complications happen. AS i know the signs and have watched the nurses. Its funny a nurse told me today that i would make a great nurse. I think i could too, maybe i might look into it!

The doctors today praised me on the hard work i have done with Brody as they saw the old Brody come out today as he hit and kicked them. I put him in Time out and made him say sorry and when he stopped yelling he could come back out and we tried again. Every thing then went smooth. They said that some parents because their child is sick wont go cross on them and they turn out spoilt. I told them, Brody needs that routine of what happens when he does something wrong as then all our hard work will be lost. They thought it was great how i have prepared him for everything. But i told them thank you but if i didn't have everyone from ABI helping me too, i would have been lost. So thanks ABI our work has been noticed.

WE still have a long way to go, and he isn't out of the woods yet but we are in for this fight and we will work hard to fight it. Thank you xox

Day 28- Post Transplant

We had a wonderful day as we got to leave the room for the first time in 8 weeks. We had a private walk in the sensory garden for 10 minutes and with our hospital staff with us. Brody wasn't to fussed but a least he got something different. We also had the 9hr treatment going for his poo bug. Which we had to add two more machines with, but they will go again when we are finished.

The doctors are saying approx about another week after this we can go back to Grandma's. But we will still be in strict isolation, with no shops, no parks, no sun, no movies, no visitors with running nose, cough, sore throat or been around anyone that is sick, also they need to have their flue shots and other shots that are recommended. Brody will also have to have his feed tube and pump with him so he wont be able to do much. We will be spending some time at the hospital for blood test levels once- twice a week, bone marrow test, clinic appointments and other tests. It never ends!! But all will be confirmed soon by the doctors of what is too happen. There is also alot of medications that i will have to give him some tablets and others done his nose tube. I really should have been a nurse like mum wanted me too be. LOL

A huge thank you to some special people, MIchelle Bentely, Nicole Keen and Sarah Juilian. For the wonderful Brody Rocks stuff and the DVD's and Boxes of food for the Variety Ward. LOve you all xoxoxo

Day 27- Post transplant

JUst another day at the office!!! LOL

No news today as we just did the normal stuff we do every day. Brody is eating heaps, but not drinking enough so doctors have ordered him to drink more. Tomorrow he is having the 9 hr treatment again for his poo bug, as results take along time to come back. But other wise he is still going amazing and just gets tired from his exercises.

A huge thank you to my friend Michelle, her husband and Castle Hill L'Occitane TEam for their lovely gift hamper. I was really spoilt. Thank you xoxoxo

Also a huge thank you to Michelle and her husband for working behind the scenes to get some food products for the parent room, cooking products for the parents room and DVD's for the ward. I know Parents and children in Variety are going to love everything, as there is nothing here for parents to use, not even a plate. So thank you for helping us make this ward better for others. xoxox

Day 26- POst transplant

Another machine off, as Brody switches to oral medications. No nurses were hurt taking this picture lol.

He has had a good day, painting, gluing, school work, watching Tv and DVD's. He is a bit tired today and sore, as i think he did too much dancing yesterday. His rash has gone again, and doctors said it can come and go.

So not much happening! I have started a facebook page for any one that has DVD's for sick kids, as the ward has no kids DVD's for the children to watch. We are lucky Brody has heaps, as they have been one of his obsession.

So if anyone has any DVD's they would like to donated as they can be used or new. But they can not use pirated copies. Please send:: to Variety Ward, Westmead Children's Hospital NSW.

Thank you xoxoxo