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.

Day 22- Post Transplant

Well as you can see from these photos Brody has improved so much this last week, he has now started to get out of bed and play on a mat the phyiso gave us. As the doctors want him to get more exercise now. Also Brody has improved so much with letting the lady take his blood, as i don't have to hold him down anymore. Although he always has a delayed effect and cries after it.

The doctors also want him to drink more, which we will be working on but he is eating alot more now, as he ate 2 slices of pizza today that he made himself, thanks to Grandma's portable oven. Has food safety is a major issue with Transplant patients. There is so many foods he can and cant have and the way they have to be cooked and etc.

Had a meeting with the doctor's today, they are please with him, The GVHD can flare back up and come back, if it dose he will be on steroids for a longer period of time. So have to keep a watch off it.

They also said in the next couple of weeks they will be slowly taken him off all the intravenous medications and put him on oral meds. There are also some more complications that can happen such as infections and the GVHD, but everything goes to plan we might get out of here before we expected. But Brody will still have to be in isolation at GRandma's for 6 months, as infections can cause alot of problems.

Also asked them about school for next year, but they wont knew for a few more months yet when he could start as if his immune system isn't right it will take longer to go back, so it could be the start of the year or the middle of the year. Bum!! I will have to make sure i have a few options up my sleeve.

Day 21- Post transplant

Wow!! we have been here for around 7 weeks all ready, how time flys! We still have about 3-5 weeks to go but everything looks great. Knock on wood!!!

I was not prepared for Brody to do so well as because of having the extra chemo on top of everything else and what the doctors were preparing me for. I was expecting so much worse, but we only have had little things. Brody is such a legend and a fighter, i think he is an Iron Man to get through what he has done so far. Proud of you my little boy!!!

Yesterday and today he has had low heart rate, low, low temps, high blood pressure and very tired. The doctors have said its all from the effects from the drugs and they are not to worried. He has started to be slowly taken off the steriods and morphine. He did need a extra push of morphine today as he was sitting there making noise like he was in pain and when i asked him he told me that his tummy hurt.

He will have a protien transfusion tomorrow as the protien in his blood is low and the physio will be starting to come to help build up his legs to do more things out of bed. He has sharpie's every second day now. The rash looks so much better now, as it only comes and gos.

Thank you again to all my friends and family xoxoxox