It started as a normal day with behaviour intervention and watching Tv, having fun with the boys before they went to school. Grandma and Grandpa went off to the school for grandparents day. While they were away I got a phone call from the hospital.
Brody's Bone Marrow test came back today and the cancer levels were to high to do transplant. Therefore we have to go back to hospital today to start chemo again to get the level down again. If they start now everything should be still be set for transplant. If we had left it, the cancer would have more of a chance to take over and transplant would not work. But this way we are giving more chances for the transplant to work and bet the cancer. (Hopefully).
I still get worried that the cancer might come back as Brody has had 3 blocks of strong doses of chemo and still the cancer is fighting it. So will the transplant work??????
We are all set up in hospital tonite, but only with limited stuff as i didn't get a chance to pack for a long stay or get things ready for isolation stage. Therefore will have to get poor grandma and grandpa to bring over stuff. They have started the chemo, but Brody is still normal as he has eaten chicken nuggets and chips.
We are in the same ward as always, which is good as he knows the nurses in this ward. Its funny to prove this, a nurse come in when lights are out and said hello to Brody, he forgot her name but went to grab her pen out of her pocket, as he used to do that to her every time she come in. LOL.
Its great to know they are understanding me now that Brody has issues and needs normal routine stuff, not one off fly byes, as it causes more stress for him. As they have planned now to be in one of the isolation rooms in the ward he knows with the nurses he knows. Its taking 6 months but they know what i am talking about now!! At least i have paved the way for other Autism children.
So our stay in hospital is now 11 weeks, please remember after this week, No body will be able to visit us as Brody will be in isolation and very ill from extra chemo and radiation. Thank you. I will post up dates and photos on his facebook and blog. Thank you to everyone for all your prayers thoughts and support. To my wonderful parents we love you and thank you so much for everything you do for us. xoxoxox
Tuesday, June 29, 2010
Monday, June 28, 2010
Its getting closer!!!
Lately we have been doing the same old things, behaviour intervention, and staying at home playing games and watching TV. But its been a good couple of weeks having the freedom and rest from hospital life.
Today i had another meeting with the transplant team, it was to confirm things and learn a bit more. We found out the chemo and drugs Brody will be taking and their effects-
Thiotepa -this is the drug that will need the showers 4 times a day. nausea, vomiting, dizziness, headache, fever, confusion, drowsiness, skin rash, mouth sores, liver defeats, darken skin, infertility.
Cyclophamide-nausea, vomiting, metallic taste, bladder irritation, fluid retention and confusion, skin reactions, heart damage, lung damage, secondary cancer, infertility.
Cyclosporine- nausea, vomiting, diarrhoea, burning feeling in hands and feet, impairment to kidney and liver, high blood pressure, excessive facial and body hair, tremor, weight gain, swelling eyes, hands, feet, depression, tired, headache, seizures, skin reactions, ringing in ears, muscle cramps, swollen and bleeding gums, clotting and blocking of blood flow, increased risk of skin cancer and lymphoma.
Methotrexate-nausea, vomiting, diarrhoea, mouth sores, skin rash, liver damage, drowsiness, fatigue, dizziness and blurred vision, and inflammation of the lungs.
Same of these chemo's Brody has had before on the standard risk and high risk stages, but now these dosages are lethal doses as they need to kill all the cells in his bone marrow as he is in the very high risk stage. This stage is quite rare as most children are on the standard risk stage and they said that 10% of children do not make it through transplant.
There will be other drugs also on top of the chemo's to help prevent or help grow new cells.
We also found out some of the rules we have to comply with, such as no jewellery, especially rings as they keep germs under them. No bags, toys need to be wash before coming in and after use. No stuff toys, nothing to be on the floor. We have to keep dust out of the room. Also we have to wash hands before going in and before touching Brody. My hands will be prune from all the washing LOL.
Luke is coming down on the 13th JUly for more tests and hopefully we can some how talk him into staying down here, as his father has thrown him out. One minute he is talking about taking his life and now he wants to set up house with another 18 year old and 16 year old. Grrrrr...... just more to worry about. Cant believe his father still cant be a father to him, as all every Luke wanted was to have his fathers love, but just got emotionally abused.
Wednesday, we have a kidney test and Brody's cord to be flushed clean. Then Friday we have a meeting with Transplant team again to confirm all tests and double check again it all ok to go ahead. Busy, Busy, Busy......
I have to start packing and keep organising all our stuff to get ready for the 13th July when we are admitted into hospital.
Today i had another meeting with the transplant team, it was to confirm things and learn a bit more. We found out the chemo and drugs Brody will be taking and their effects-
Thiotepa -this is the drug that will need the showers 4 times a day. nausea, vomiting, dizziness, headache, fever, confusion, drowsiness, skin rash, mouth sores, liver defeats, darken skin, infertility.
Cyclophamide-nausea, vomiting, metallic taste, bladder irritation, fluid retention and confusion, skin reactions, heart damage, lung damage, secondary cancer, infertility.
Cyclosporine- nausea, vomiting, diarrhoea, burning feeling in hands and feet, impairment to kidney and liver, high blood pressure, excessive facial and body hair, tremor, weight gain, swelling eyes, hands, feet, depression, tired, headache, seizures, skin reactions, ringing in ears, muscle cramps, swollen and bleeding gums, clotting and blocking of blood flow, increased risk of skin cancer and lymphoma.
Methotrexate-nausea, vomiting, diarrhoea, mouth sores, skin rash, liver damage, drowsiness, fatigue, dizziness and blurred vision, and inflammation of the lungs.
Same of these chemo's Brody has had before on the standard risk and high risk stages, but now these dosages are lethal doses as they need to kill all the cells in his bone marrow as he is in the very high risk stage. This stage is quite rare as most children are on the standard risk stage and they said that 10% of children do not make it through transplant.
There will be other drugs also on top of the chemo's to help prevent or help grow new cells.
We also found out some of the rules we have to comply with, such as no jewellery, especially rings as they keep germs under them. No bags, toys need to be wash before coming in and after use. No stuff toys, nothing to be on the floor. We have to keep dust out of the room. Also we have to wash hands before going in and before touching Brody. My hands will be prune from all the washing LOL.
Luke is coming down on the 13th JUly for more tests and hopefully we can some how talk him into staying down here, as his father has thrown him out. One minute he is talking about taking his life and now he wants to set up house with another 18 year old and 16 year old. Grrrrr...... just more to worry about. Cant believe his father still cant be a father to him, as all every Luke wanted was to have his fathers love, but just got emotionally abused.
Wednesday, we have a kidney test and Brody's cord to be flushed clean. Then Friday we have a meeting with Transplant team again to confirm all tests and double check again it all ok to go ahead. Busy, Busy, Busy......
I have to start packing and keep organising all our stuff to get ready for the 13th July when we are admitted into hospital.
Wednesday, June 23, 2010
Tired!!!
Yesterday we went to the hospital and Brody had to check his bloods and level of meds, also he had to go under for a CT scan and a Bone Marrow. The CT scan is to check how the infection is going and the bone marrow is what Luke will have but Brody has once and that is to check how the cancer is going. All of these things can delay the transplant if they are back or not at a good level. Results hopefully next Monday!!!
We got to the hospital and got his bloods done, then waited and waited and waited. Until Brody and i was sick of waiting anymore. I went up to the desk and asked what was happening. All i was told it should be soon. So we waited and waited more out in the hall way, as Brody still has a runny nose and he cant be in with the other children in the waiting room. Finally a nurse come and did everything she needed to. But we still waited and waited, after over 5 hours we finally got in and they did the CT and bone marrow. Brody then had to wake up from his sleep, so we got home after 7.00pm. What a day!!!
The long waits are very hard, as Brody ran off once and i lost him, he touches everything, and gets frustrated and angry. Its also very hard to keep him occupied, i take a big bag of stuff like DVD player, DS, cars, colouring and toys. But its hard for Brody to do these things in a hall way with noises, people walking past, other people waiting out there.
The positive thing from yesterday experience is that i got to spend some quality time with Brody but wish it wasn't with me saying no, or don't touch that or stop running around and running off. This whole experience makes you very emotional and its like riding a roller coaster as your emotions go up and down within minutes.
I try and be positive but as all you have to do is sit and think thoughts and your emotions are playing games the negative side always pops in. Its my love for Brody that keeps me going. Mothers that have lost a child or have a child in this same situation are the only ones that know how i am feeling. No one understands the heartache, the frustrations, the pain, the worry, the torture this experience brings. I am just glad Brody has Autism and is young as he still thinks he is not sick and finds it hard only when we are in hospital.
On a happy note, Brody loves running around the house as Iron man, and is so stuck on it that he wears it every day. Thanks to Bill as next time he is here he can play superhero's with Brody as he makes us wear a mask and run around with him. LOL
Monday, June 21, 2010
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.
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.
Sunday, June 20, 2010
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.
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.
Friday, June 18, 2010
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
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
Thursday, June 17, 2010
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.
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.
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