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

Day 25- POst transplant

Brody had a great morning today, as nurse Belinda and Nicky come and took another machine off today. He has now stopped the Morphine, but can have some pain killers in oral form if needed. He was just so excited, as he knows the less amount of machines he can go to Grandma's house.

We also did some dancing to music to strengthening his legs, as he enjoyed dancing to The Eye of the Tiger over and over again.

For the first time ever Brody had asked to do school work, so we did lots. We also did some painting and drawing.

This afternoon after his shower he was just so tired and run down from our busy day. Hopefully he will sleep all night now, as last couple of night he is up at 3.00am ready to get up and play for a couple of hours.

Day 24- Post transplant

Very quiet day, Brody is still doing a great job as he eats and is hungry all the time. Love those steroids!! He is not sleeping as much as he wakes up during the night and sings songs.

This afternoon nurse Belinda took of his TPN which is the vitamins and fat that was going though his cords. We were all so excited, as the machines are slowly going and its a count down to leave the hospital.

I wasn't prepare for Brody to do so good, as the doctors told me so much stuff, and we now that things are different with every child and they have to tell you the bad stuff, but they did that talk from the start, the talk from when he had to have the extra chemo ontop was worse, but he has just proved that nothing can really knock him down, as he has only had little problems that they could sort out, nothing to major. Knock on wood!!!!! AS we still have a long way to go, as we have to be strict when we go back to Grandma's and we still have the worry that the cancer can come back and the late side effects from all the radiation and chemo.

Its been very hard this past 11 months as your life is just turned upside down and not knowing where your life is heading, i have had times when i feel so alone, even when i have great friends and family that have kept us going through phone calls and facebook. You are all amazing. Thank you.

My dearest Luke has made a bond with his brother that know one will every be able to destroy and even when he is going through his own pain. His life has just proved that DNA doesn't make a family, its commitment, love and trust that make you family. Poor Luke had to learn the hard way but he is still lucky as he has a family with us. We love you LUke. xoxoxo

Day 23- Post Transplant

Wow what a day!!! Brody has been great, he did all his school work with no metldowns, talked to the doctors and nurses. He is amazing!!!

He did some paintings, he got out of bed and did his excerises, he ate pizza again, toast and half of yogart. He drank 220ml of water. Brody is on a mission to get out of hospital. I think those steriods are really working, maybe i need some too. lol

A big thank you to two guys Tim and Tom who donated some bikes to the cancer patients at the hopsital. When i wheeled the bike into Brody's room, After cleaning it for 10 mintues, Brody had his hands up on his head and said Oh my God!!!! he loved it. He also said a Ben 10 Bike. Wow!!!

To see his face was priceless. I will treasure that smile for life.