Allografts
A booklet for Aboriginal and Torres Strait Islander patients and their families
Book Five
Text & Illustrations by Simone Thomason
Cover artwork by Navada Currie
You can read this booklet below, or download it here.
Blood Cell Transplants: Allografts, A Booklet for Aboriginal and Torres Strait Islander patients and their families, is book five in a series of five educational booklets. The booklets are primarily visual teaching tools, designed to meet the comprehension needs of Aboriginal and Torres Strait Islander patients, diagnosed with a blood cancer, and their families. This resource may also benefit all patients, including cultural and linguistically diverse people groups whose main language is not English.
Disclaimer: This booklet is not intended to provide or be a replacement for medical advice. Text and illustrations © Simone Thomason, 2020. Cover artwork © Navada Currie, 2022. ISBN:978-0-6486980-0-5
Acknowledgements: The author would like to express sincere thanks to patients and families, co-workers, colleagues, friends and family whom have supported and provided encouragement throughout the compilation of these booklets. In particular those whom took time out of their busy schedules to review, critique and provide feedback on the booklets at various stages of their development, including: Dr Ferenc Szabo; Dr Akash Kalro; Dr Tina Noutsos; Hayley Williams; Barbara Smith; Robyn Jones; Barbara Cox; Cheryl Hooper; Mary Copp; Jean Murphy; Helen Kennon; Mally McLellan; Joyce Crombie; Tania Wakefield; Myrtle Weldon; Lesley Versteegh; and my husband, Martin Thomason.
The Leukaemia Foundation uses real-life stories to provide education, inspiration and hope. If you have an experience of blood cancer you’d like to share, please email [email protected]
5
The doctors, blood nurse, ILO and interpreter will sit with you and your family and talk about the next treatment, called a young blood cell transplant.
Your family back home can be on the TV link or phone.
Your family can help a lot with this transplant.
6
Some blood cancers are hard to get rid of with just chemo. So, you will need a young blood cell transplant also called a stem cell transplant.
The word transplant means to swap one thing with another. This transplant means that after you have chemo to help you get well your blood cells are swapped with young blood cells donated to you.
7
This transplant may not be able to be given to you in the hospital where you are.
Usually, the hospitals in the large cities do the transplants, as they have more people there to help you.
Transplants will take weeks and months to do.
If you and your family agree to have the transplant you will all travel to the transplant hospital.
The doctors will let you know if you will stay in a hostel or need to go into hospital, when you get there.
8
You will meet another hospital team called the “transplant” team, they will be expecting you
They will explain what will happen to you and your family.
You and your family will be able to talk to these doctors and nurses over the TV link before you travel for the transplant.
There will be church ministers, language speakers – Interpreters and ILOs to help you there too.
9
Your brothers and sisters who are from the same mum and dad as you, will be asked to do a special blood test.
Sometimes your mum or dad may also be asked to have this blood test.
This test checks how much your blood cells are like your brothers and sisters.
If you have no brothers or sisters, the doctors can still help you.
10
If one of your sister’s or brother’s blood tests show that their blood is like yours, they are a match to you.
The doctor and blood nurse will talk to you, your family, the decision makers, and Elders, and ask your match to donate some of their blood cells to you.
Your brother or sister cannot get sick from doing this for you. If it is agreed that your brother or sister can help you, they will need to sign a consent form. Then you, your carer and your brother or sister will leave country and travel down to the city for the transplant.
If your brothers and sisters are not a match, the doctors and nurses will talk to you about how they can look for another match for you, from someone else.
11
The young blood cells that live inside the large bones are special cells called stem cells which can grow to be any cell the body needs.
Some of your brother’s or sister’s young blood cells will need to be collected to help heal you.
12
Your sister or brother will need to have a special medicine needle, given under the skin every day for a few days.
This medicine moves the young blood cells from their bones into their blood.
Your brother or sister may be able to give themselves the needles or the nurse can do it for them.
This medicine can make their bones feel a bit achy, the nurses will give them pain relief tablets for the ache.
13
This picture shows inside the body. The medicine makes the young blood cells move out of the hip bones and into the blood in the veins.
Your sister or brother will have blood tests every day, to see when they have enough young blood cells in their blood.
14
When they have enough young blood cells in their blood they will go onto a machine, like the one in this picture.
They will be on the machine for a few hours over 1 – 2 days. This machine spins their blood and collects a small amount of their young blood cells into a bag. They may need a special tube in their neck to help collect the blood cells.
Being on the machine does not hurt them and you can sit with them when they are on the machine.
After a few days’ rest, your brother/sister can go back home to country.
15
You will have more scans and tests followed by chemo.
You may get a special tube inserted into your chest for the chemo (Hickman catheter).
You will need to sign a consent form for the chemo and the transplant.
You may also need special X-ray treatment called radiotherapy. Your doctor will tell you if you need this.
16
In hospital you will be in a room on your own to protect you from germs.
Your family won’t be able to stay with you, but they can visit every day.
The chemo is very strong and gets rid of most of your blood cells.
After chemo your brother or sister’s young blood cells are given to you, to help you heal from this chemo.
17
When your family visit you in hospital, they will have to wash their hands well and use a mask. They may also need to put on a gown like the nurses do.
You will need to be in hospital for weeks or months to help you recover from the strong chemo.
18
Day 0 is the day you get the young blood cells (stem cells) from your brother, sister or donor given to you.
Day 1 onwards is the time the young blood cells move from your blood into your bones.
When the stem cells are in your bones, they grow older and then go to work.
19
It will take time for these young blood cells to start working.
You will stay in hospital until you have enough working cells.
You will need to have bags of blood to keep you strong while you wait for the young blood cells to work.
20
You can feel weak and lose weight at this time.
You may get sores in your mouth and eating can be painful.
The doctors may need to put a tube into your stomach, through your nose to feed you milky food to rest your mouth.
21
You will need to do all the same things you did when you first had chemo, to keep yourself well.
22
Sometimes after a stem cell transplant, your body gets more crook before it gets better. Your body can struggle with your brother or sister’s young blood cells.
This can make you feel unwell. You may get fevers, itchy skin, runny poos, stomach pains and vomiting.
Press the buzzer and talk to the nurses when you are unwell.
The nurses will give you medicines to help you.
23
The transplant team want to help you to beat the blood cancer, so you can return home to country and live with family again.
Having the transplant can take a long time for you and your family.
When you have any worries, talk to the nurses caring for you, they can ask the Church Minister, Interpreter, or ILO, to see you.
24
When you have enough working blood cells, you can leave hospital and go to the hostel nearby.
You will travel in from the hostel to the hospital a few times a week to see the transplant team and have a blood test.
When your blood is fully healed and strong you will return home to country.
25
Back home, you will need to have check-ups and blood tests with your doctor in the community.
You will also need to leave country to see your blood doctor back at the city hospital for check-ups.
Having the transplant will change your immune system. You will have to start your vaccination needles again. These are the needles you had when you were a baby and child, which stop you getting sicknesses such as measles and mumps.
Your doctor in the community can give these to you.
26
For two years or longer after the transplant, it is best not to try and have children. The chemo you had will cause the baby to get sick and not form well inside the mother.
When having sex, to stop getting pregnant you or your partner need to use a condom.
When/if you are ready to have children, you may have sperm or eggs saved at the fertility doctors, which you can use to have children with your partner.
They can arrange for you to see the family/fertility doctors to discuss this more.
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