Transplant team Meeting!!

OK, this is it! We had a meeting with the transplant team and it was a information overload so i will try my best to relay all the details that were outlined.

Why transplant-
A bone Marrow transplant is necessary as Brody is at a very high risk with his cancer (leukaemia), which means that normal chemo will not destroy his cancer. He will need very high doses of chemo and radiation to destroy all cancer cells in the body. However the high doses can also destroy Brody's own normal bone marrow cells. We need these bone marrow cells to make the blood and immune cells in our bodies, without them we could not survive.

Using the high doses then giving a transplant to replace destroyed normal blood and immune cells, allows doctors to treat cancer(Leukaemia) more effectively.

Allogeneic Transplant-
In this type of transplant, stem cells come from a donor- someone other than the patient. Which will be Brody's older brother Luke.
Allogeneic transplants are more complicated because the stem cells have come from another person and so are recognised by the body as different or foregin.
Two consequences can occur are -
Brody's immune system may attack and destroy the transplant cells (graft rejection)
The immune cells from Luke may recognise Brody's organs (skin, gut, liver, etc) as foreign and attack them. Its called graft-versus-host disease. If severe, this can be life threatening.

Therefore this is why it has been very important to make sure LUke is matched closely to Brody. I cant believe that Luke was matched so closely as he is a half brother. Must mean they both have more of me in them both.

Preparing for Transplant-
As you know Brody has had and will be having several test to assess his health. He has had Lung, eye test, heart, teeth, and hearing. Tomorrow he will be having a Ct scan of his chest plus another bone marrow test and a kidney test next week.

Conditioning Treatment-
On the 5th July he will start having radiation of his head, which he will go in once a day for treatment.
Then starting the week of the 13th he will be admitted into hospital to have radiation twice a day for 3 days.
Then he will also have the high doses of chemo, which all will help to destroy the bone marrow and cancer cells and make room for the new cells.
During this time one of the chemos given means Brody will have to have a shower 4 times a day, which is going to mean hell. As it hard to shower or bath him at home, and nearly impossible to shower him at hospital. Grrrr......

Tranplant-
The date is set for Brody's Birthday on the 21st JUly, what a present!!!! Luke's cells are put into Brody's cords the same way as a blood transfusion. Its not much, but its the after effects we have to worry about.
Luke is the one that will be in pain on the day as he is put under and stabbed several hundred times to get the bone marrow out of his lower back. Ouch!!!

Engraftment-
means new cell growth. The first two to four weeks after transplant are critical. Which means he is very susceptible to infection and bleeding. He will have meds and more transfusions to help deal with this.
New growth takes place when after the transplant when there is a sustained rise in new blood cell production.

Effects-
The main effects are increased risk of infection, bleeding, nausea, vomiting, fatigue, mouth sores, weight loss, hair loss, Diarrhoea, Pain and skin reactions.
Long term effects, fertility, complications in the liver, kidneys, lungs, joints, heart, learning and child development and long term effects also from the radiation that i said before in the meeting with the radiation team.
Also as i mention before the Graft-versus-host disease.
They have told me he could be spending time in ICU and 10 % of children that have transplant do not make it through!!! The cancer can also come back and might need other things to help him, such as another transplant.

During-
During this time, Brody will be in an isolation room, we can not have any visitors and everything needs to be cleaned each day. I can not take a suitcase or have anything on the floor. His poster will have to be laminated so that they can be wiped down. No food is to be brought in and toys and things have to be washed before entry. He can take his teddy but no other soft toys, no flowers and basically nothing can be taking in.

Home-
They can not tell us what will happen after as it depends on Brody's health. But we are looking at after 8 weeks we can come back to grandma's but still be in isolation and then have daily to weekly visits and then monthly to once a year visits.
Brody will not be able to start school about 6 months after transplant and even then will still have to be careful, as he will not have an immunisation and cant get infections. There is still alot to happen after transplant and will be a long hard road.

Weekend news!!

The weekend was full of normal stuff and Bill come down for a visit which was good to have some family time. We didnt do much just stayed around the house playing and watching TV.

We did take Brody's to the drive Ins for the first time, as we rugged up really warm, took our own food and drinks and had a good time. We saw Sherk 4, it was a great movie, although Brody kept saying he didnt like Sherk, he likes Ironman. He went alright, but jumped from the front of the car to the back boot of the car a couple of hundred times. At least we got out and did something different with out mixing with people. As this is the time that so much is going around and we dont want Brody to get anything as it will delay transplant.

I try not to think about the future, but it makes me all confused as i worry about other problems Brody might have and his education, i wont be able to work for a least another year away, Support from others. Its a thing i really need to think about and weigh up my opitions as i am torn between moving back up to forster or staying in Sydney and what is best for me and Brody. I try not to think about it all yet as the transplant is my main focus for now. All this thinking gets me all depressed and sad.

Hearing test!!

Today we went to the hospital to get a script for meds and waited an hour and a half to just see a doctor. Then the doctor said we could have just rang and come in and picked up the script!! But i told the lady at the desk it was just for a script and we still had to wait. What a joke!!!! Really thinking its because the doctors don't want to see Brody because of his behaviour. As they find it to hard, so they pass him on and hope that someone else see's him.

We then went to the hearing department and all his hearing was 100%, which i knew from a past hearing test when i was trying to find out what was wrong with him. So good news that the chemo hasn't effect his ears.

Brody never talks to strangers, but today decided to ask a lady with blonde hair and she was all dress up with her high boots on, her name. What a flirt my child is turning out to be!!! LOL.

I heard from Luke and he is doing ok now, his eyes don't hurt anymore and he just has a mark on his arm. I am so glad it wasn't too bad. Luke is doing his exams at the moment and is having fun with his friends.

We will be having a quite weekend at home with Bill and Grandma and Grandpa, then back to all the weekly stuff of ABI and Hospital visits Monday and Tuesday. So keep a look out for next weeks blog to find out all the gossip on preparing Brody for transplant and the transplant it self.

Hope everyone has a good weekend!!! xoxox

At last!!!

Normal routine work with Brody today and then just playing and watching TV. The weather here is very cold and light showers today, so we couldn't even go out the back for a run.

Hospital rang me today and Brody is going to have another CT scan next week and i will be meeting with the transplant team on MOnday to find out the in's and out's. Yeah!!!! I cant wait to find out what will be happen so i can start preparing him for it. So keep watching for next MOndays or Tuesdays blog entry for more information.

Luke will be having some of his tests up at the children's hospital at Brisbane, so wont need to come down this time, i am a bit sad about it as would have loved to seen him again. But cant wait till we see him again next time.

Tomorrow Bill is coming down for the weekend, as Brody cant wait to see him. Its been very hard not having our little family together like it used to be, as Bill still has to work and it costs alot to travel in his car so he only comes every second weekend. He stays at his sister's house while he is down here, so we don't get much time together. So it will be good to see him again.

Today we had Chris again from Autism behaviour intervention to do some behaviour work with Brody. Before ABI started i could not get Brody to do any type of school work or even get him to sit at a table. But now he is doing so well, sitting at the table and completing some school work. They also help with Hospital procurers too, like putting a nose tube on his face or in his nose, Brody now lets us put the cord in his nose and taped on his face. Which will help him so much when it comes to having to have one on his face.

ABI will not be coming after a couple of weeks, but we have now received emergency service again for after transplant to help Brody transition back into normal life, which is going to be a great help, as he will need to be toilet trained, socialized back in with children and follow new routines of home. Thank you so much to ABI for all there help.xoxox

Brody face isn't so red today so what ever it was, it seems to be going. He has ran around the house playing chasing and hide-n-seek with us. He is a very wild boy and keeping me on my toes. He also packed his back pack and told me he was going to Nabaic. He then went out the front door and up the drive. I feel so sorry for him as he really wants to have his life back at Nabaic. He misses his chickens, dog, horse and his spaceship bedroom. I too, wish that we have a life as it gets very hard. Unless you have experiences this you would never know how hard it is.

Luke is doing ok, he is laughing about his accident yesterday and now riding his bike again. So i don't think it was to bad, but it still would of hurt. Ouch!!!!

Worried!!!

Brody had his behaviour activities to do today with Chris from ABI. He went really well this morning, until right at the end where he had to go into timeout for hitting. When Chris was leaving he told him he will see him tomorrow and that he loved him. How cute!!!

We also had Dianne, the nurse from the hospital come in and flush Brody's cords to give them a weekly clean. She was in and out with no worries. It was so much better than going in for hours and waiting around.

One of the doctor's rang us to tell me to increase his anti -biotic as his anti-biotic level was too low. But still no news into whats happening to get ready for transplant. On Friday we will be going in for a hearing test and to get some more meds, so hopefully i will find out something or i will chase it up, as i will go see the main doctor and let her know i haven't heard anything yet.

Brody is doing really well that he has become hypo like he used to be and eating lots of food. He has had a red face and ears the last couple of days, but his temperature has been fine and there is no other signs of things happening, so i don't know why he has a red face. Grandma said that sometimes meds can make you have a red face, so i am hoping that is what it is.

Oh! I am now worried about Luke as he burnt himself and went to hospital today. He is ok and a friend is staying with him. He has to go back tomorrow to checked out but he should be ok. How i wish he would come back home. Brody and i miss him badly.

Long Weekend!!!

Brody is doing really well as his levels are good and has started to become the old Brody. His nose hasn't been so runny this week and he is so much more active again. I haven't had him outside in this cold air as winter is the worse time for a transplant as there are so many more colds/flu and infections going around. This is the last thing we need as if Brody gets anything it will delay transplant again.

We were thinking of going back to Nabaic this weekend to spend some special time with Bill and Brody keeps asking to go back home, but poor Bill got a ear and chest infection and its just to cold up there to take Brody out. We will have many weekends to go back home after all this so another week away want hurt. Hopefully Bill gets better soon, as Brody wants pizza.

So for the rest of the weekend we are staying in and playing lots of games, sewing, normal routine work (as that happens every day), cooking, Wii, Ds and lots of indoor fun things. Hope everyone else has a great weekend.