MarrowkidzInformation and advice for children affected by aplastic anaemia Welcome to MarrowKidz from The Aplastic Anaemia Trust. Here you can find resources for children affected by aplastic anaemia. Whether you have been diagnosed with aplastic anaemia yourself, or someone in your family or a friend has been diagnosed, this is where you'll find expert information about what's happening, and advice from other children who have been through aplastic anaemia too! A note for adults and teens: We've moved some things around! You'll now find treatment information, resources for parents, schools and teenagers on our main website. Marrowkidz About your AA and treatment Advice from other children Support a friend or family member Watch videos More goodies My brother or sister has aplastic anaemia A guide for children supporting a sibling Finding out your brother or sister has aplastic anaemia may be a bit of a shock. You may not have heard of it before as not many people get it. Some children tell us that they felt scared and confused when their brother or sister became ill. You might also feel angry and upset, and want things to go back to the way they were. You are not alone. It is important for you and your parents or carers to make sure you are OK too. This guide has lots of brilliant tips and stories from children who have been through the experience of having a brother or sister with aplastic anaemia. Thank you to them for all their help in putting it together. I didn’t know what was happening or what aplastic anaemia meant. I knew there was something wrong with his bone marrow and he didn’t have enough cells. - Hannah, aged 7 when her brother was diagnosed What is aplastic anaemia? Inside our big bones is a spongy part called the bone marrow. The bone marrow is like a factory, where stem cells are made. Stem cells turn into the three main types of blood cells we need for our bodies to work properly: Red blood cells carry oxygen around our bodies. They are the reason your blood is red. White blood cells help us to fight infections and germs. Platelets stop us from bruising and bleeding easily. In people with aplastic anaemia, the bone marrow doesn’t make enough stem cells. It’s not always easy to tell why aplastic anaemia happens, but it is not something you can catch, and it doesn’t happen because of something you or your brother or sister did or didn’t do. Symptoms ‘Symptoms’ are the signs of aplastic anaemia that you might notice in your brother or sister. Symptoms will be different for different people, but here are some of them: Being very tired all the time Getting lots of colds and infections Getting lots of bruises or bleeding easily Sometimes the symptoms of aplastic anaemia are similar to those of certain types of cancer. Cancer is a serious illness you might have heard of. If you hear people talking about cancer and you are feeling scared, talk to your parents or carers. Aplastic anaemia is a serious illness but it is not a type of cancer. My sister Ashleigh wasn’t very ill before she was diagnosed with aplastic anaemia. She would get tired easily and looked a little pale, but nothing that made me think she was very ill. There was one incident when Ashleigh and I were at the childminders and we went to get a drink of juice. Ashleigh was standing next to me and fell backwards suddenly. 5 She had passed out and I stood there not knowing what to do. The childminder came running over to see Ashleigh and called our mum to tell her what had happened. - Alicia, aged 10 when her sister was diagnosed Testing for aplastic anaemia To find out for sure that your brother or sister has aplastic anaemia, they will need to have some tests. Usually, they will have a test with a needle that takes out some of their bone marrow. This is called a bone marrow aspiration or biopsy. It is usually done under a short general anaesthetic, which means they will be asleep and it won’t hurt. When the doctors have tested the bone marrow and found out more about what is happening inside your brother or sister’s body, they will be able to decide how they can help make them feel better. This is called diagnosis. Treatment for aplastic anaemia Different people will need different types of treatment for their aplastic anaemia. This means the medicines and other things the doctors need to do to help make them feel better. In this section, we talk about some of the different types of treatment they may have. Red blood cell or platelet transfusions In a red blood cell or platelet transfusion, healthy blood cells from a kind person (a ‘donor’) are given to your brother or sister through a plastic tube. The blood is checked very carefully before it is given to make sure it is safe and healthy. Immunosuppressive medicines Our immune systems usually fight against infections, but in aplastic anaemia the immune system can also fight against the bone marrow. ‘Immunosuppressive’ medicines quieten down the immune system so that the bone marrow can start working properly again. Two of these medicines are called anti-thymocyte globulin (ATG) and ciclosporin. Your brother or sister will have to spend lots of time in hospital while they are having these medicines. Stem cell transplant A stem cell transplant (sometimes called a bone marrow transplant) is where healthy stem cells from a donor are given to your brother or sister through a plastic tube. A donor needs to have a good ‘tissue type match’ to your brother or sister. Tissue is the ‘stuff’ our bodies are made of. If the donor isn’t a good match, your brother or sister’s body would fight with the new cells and they could become even more ill. You and other people in your family might get checked to see if you can be the donor. Full brothers and sisters have a one in four chance of being a match. This means that overall, for every four brothers or sisters are tested, one of these comes out as a match. These are quite good chances compared with people they are not related to, but it still means that three out of four times, brothers and sisters aren’t a match. The chances of being a match are smaller for half-brothers and half-sisters and other relatives. You can read more about getting tested and possibly becoming a donor, further on in this guide. To get their body ready for new stem cells, your brother or sister will need to have some medicines called ‘conditioning therapy’ for about a week before their transplant. After their transplant, they will have to spend a long time in hospital while their new stem cells settle down and their bone marrow starts working properly again. Your feelings Ask Aimee In this video, Aimee talks about what it was like for her and her family when her little sister, Erica, was diagnosed with aplastic anaemia: Changes to everyday life Your brother or sister’s aplastic anaemia will mean changes to your family life. Sometimes these changes will feel easy but sometimes they might make you feel upset, cross or confused. My mum and I were very close. I was ‘Mummy’s girl’ and wanted to be with my mum all the time. I didn’t want to leave her side. When my sister became ill, my mum spent every moment with my sister or thinking about her when she wasn’t with her. This change didn’t happen slowly but changed abruptly overnight. This was really hard for me.The whole family were now centred around my sister. It felt like this was all everyone would ever talk or think about. I felt left out. I wanted them to know that I was here too. No one had told me how seriously ill Ashleigh was, so I found it hard to understand why she was getting so much attention.After a day at school, I would go to the childminders and wait for my dad to pick me up. We would drive straight from there to the hospital to spend the evening with my sister. I really liked seeing her, but we did this every day for a while and I found the week to be long and tiring.I found it really difficult to talk to anyone about how I was feeling. I felt cross a lot of the time and felt that no one had time for me. Sometimes it felt like I was invisible. It felt like everything changed so quickly for me and my family. - Alicia’s story, aged 10 when her sister was diagnosed Hospital visits and stays Your brother or sister will have lots of visits to the hospital and might have long stays there too while they are having treatment. One of your parents or carers will always have to go with them if they are still a child, and they might often stay overnight with them at the hospital. You might suddenly have other friends or relatives picking you up from school or cooking your meals more often. You might feel unsettled by this or you might feel like this is a huge treat. Here are some things you could do to make this time easier for you and your family: • Keep your room tidy • Help out with little jobs at home • Draw a picture or make a card for your brother or sister to take into hospital with them Me and my dad/mum FaceTimed him and whoever was at the hospital (Dad or Mum) every day. I also made him cards and sent messages. - Betsy, aged 10 when her brother was diagnosed If you are able to go and visit them in hospital, just being there with them can be a big help. I went to visit him in hospital and I think he liked that - Hannah, aged 7 when her brother was diagnosed Isolation Some medicines and treatments mean that your brother or sister’s body isn’t able to fight off infections as well as it would normally. This makes it really important that they don’t catch any infections or viruses during this time. The best way to do this is through ‘isolation’. This means spending time away from other people, and keeping things around them very clean. This can be a very lonely and boring time for them, and you might feel the same while you are missing them. If they are isolating in hospital, they might be allowed some visitors. Ask your parents or carers if you are allowed to see them. If you are allowed to go in, you might have to wear special equipment like a mask and apron to make sure you don’t spread any germs. I see and talk to Evie over Zoom calls every day. I miss her and I can’t see her while she’s in isolation. - William, aged 5 when his sister was diagnosed Changes in your brother or sister While your brother or sister is having treatment for aplastic anaemia, you might notice some changes in how they look and how they are. These are usually because of the medicines they have been given. This might feel very strange, but try not to worry – they are still the person they were. One thing that might happen is that their hair might start falling out. This might feel very strange and sad at the time, but it will grow back. Evie’s hair has fallen out. She is now totally bald and looks like she did when she was a baby. - William, aged 5 when his sister was diagnosed When he lost his hair and sent a picture, it was all becoming real. He still looked great though! - Betsy, aged 10 when her brother was diagnosed Connor did lose his hair and we were prepared before this happened, because my parents talked to us about some of the medicines and what they can do, like losing hair. It was not nice to see and it was still a shock. He looked really sick. I helped Connor by being around, playing games and keeping busy. - Taylor, aged 11 when his brother was diagnosed Depending on what treatments they have, here are some other things you might notice: • They are extra tired and might even need to stay in bed a lot of the time. • They have a tube attached in their chest so that it’s easy for the doctors to give their medicine. They might also have a tube going into their nose. • They don’t always fancy eating much or they don’t like the same foods as they did before. • They put on weight or look a bit ‘puffy’. All these are normal and some of them might not even happen for your brother or sister. Remember that they might be feeling sad about these changes, so try to be kind. Once we knew Connor had aplastic anaemia, we had to change how we played with him to avoid him having a nosebleed or bruising easily. We chose games that were calmer and more relaxed for him to play with us. - Taylor, aged 11 when his brother was diagnosed His cheeks puffed up with the steroids [a type of medicine] and I thought he looked like a hamster, but he didn’t like it when I called him that! - Hannah, aged 7 when her brother was diagnosed Talking about your brother or sister’s aplastic anaemia It is important to keep talking with your family and close friends about what is happening. They will be able to help you and make sure you are OK. If there was only one piece of advice you take away from this, it is to talk, talk, talk! Talk to your parents, other family members, friends and the nurses at the hospital about your thoughts and feelings. The more you talk about how you are feeling, the better you will feel. - Alicia, aged 10 when her sister was diagnosed Just remember to stay in touch. Also talk to someone if you feel sad or scared. - Betsy, aged 10 when her brother was diagnosed Talking with your parents or carers Talk to your parents or carers about any worries you are having. Ask them any questions you have about what’s happening, and they can help you find the answers. You might want to sit down together and read through the information for children on the MarrowKidz section of the Aplastic Anaemia Trust website. Ask your parents or carers if you can do something nice together, like playing a game or going for a bike ride. Doing something together that feels ‘normal’ can really cheer you up when things have been difficult. I talked to Daddy. He played games with me. - William, aged 5 when his sister was diagnosed My family talked to me and explained things, and told me that it was going to be OK. - Betsy, aged 10 when her brother was diagnosed I spoke to my family, my friends and my mum. I kept myself distracted by playing games and keeping to my normal routine, like playing football. My family helped by being there for me as much as they could. My nan and grandad took me and my sister away for a weekend to have some normality. - Taylor, aged 11 when his brother was diagnosed Talking with your brother or sister You might not know what to say to your brother or sister to start with. You might worry that talking about their aplastic anaemia will upset them, but they would much rather you were open with them and talked about it. Ask them how they are and what you could do to cheer them up. Remember that they are still the same person they were and you are still you. Try to do ‘normal’ things with them as much as they can, and talk about the same things you always did. They might not be able to do lots of active things at the moment, but you could still watch a film or play board games or computer games together. Talking with your friends and people at school It might help you to tell your close friends about any worries or upset you are feeling about your brother or sister’s illness. They can help cheer you up and look after you. If you are worrying a lot while you’re at school, you might find it hard to concentrate on your learning. If this is happening, tell your teachers, and tell your parents or carers. They will all be able to work together to help you. I talked to my friends (and family) and they were really supportive. My teacher at that time was also really nice and checked up on me. My friends talked to me a lot and comforted me at school.” - Betsy, aged 10 when her brother was diagnosed Staff at school like the headteacher and the office staff as well as my own staff knew what was going on, and they made sure I was OK.” - Hannah, aged 7 when her brother was diagnosed People at school might have lots of questions about what is going on. Talk with your family beforehand and have a think about what you might say. If people at school make unkind comments about your brother or sister, tell a member of staff and talk to your parents or carers about it. Talking to someone else You might find it helpful to talk about your feelings to someone different, and the hospital looking after your brother or sister might have someone you can talk to there. They might be called a counsellor or a psychologist. They will understand that having a brother or sister in hospital might be difficult for you, and they will be able to help you find ways to make it feel easier. Ask your parents or carers to find out about this from the hospital if it’s not something they have already told you about. Being a stem cell donor If your brother or sister needs a stem cell transplant, you might be able to get tested to see if you can be the donor. Being the donor would mean giving some of your healthy stem cells to your brother or sister. This is a big step and you might feel very excited and nervous at the same time. When I found out that I could help Ashleigh by being a donor, I had mixed feelings. I felt grumpy because it was another thing to do with my sister, but I also wanted to be her hero. I thought if I could save the day, it would make everyone happy. - Alicia, aged 10 when her sister was diagnosed Getting tested You will need to get tested to see if you are a good ‘match’. A doctor or nurse will usually take a little bit of blood from your hand or arm. You will probably feel the needle going in but it will be over with quickly and won’t hurt too much. I felt scared and nervous. I don't like needles. - William, aged 5 when his sister was diagnosed < The doctor or nurse will help to make it easier for you if you are feeling scared or if it’s a bit sore The play leader read a book to me as I was very scared. It was sore when they tried to take the blood and the nurse had to wiggle the line a lot. - Hannah, aged 7 when her brother was diagnosed Then they will send the blood away to be tested, to see if it is a match for your brother or sister. It might take a couple of weeks to find out. If you aren’t a match, what happens next? The most important thing to remember is that it is not your fault if you are not a match. Try not to feel too upset. There are lots of other ways you can help your brother or sister, by being there for them and helping them through their treatment. I found out that I was unable to be a donor when I overheard my mum telling my nan that none of the family were a match. I know that my mum wasn’t disappointed in me, but disappointed in the result, but I still felt sad. Everyone had pinned their hopes on this, so it was a big shock to us all. - Alicia, aged 10 when her sister was diagnosed The hospital will now look for other donors who might be a match. I felt a bit disappointed that I couldn’t help, but at least other people could. - Betsy, aged 10 when her brother was diagnosed If you are a match, what happens next? Your parents will need to agree for you to donate stem cells. This is called giving consent. They will have to sign a form and you can sign it too if you want to. Keep talking to your parents or carers and the doctors and nurses about how you are feeling, and ask them anything you want to know about what’s happening. As part of giving consent, you might have a chat with someone from an organisation called the Human Tissue Authority. They will make sure you understand what is going to happen and that you are happy. When you and your parents are happy and have given consent,you will need to have some checks to make sure you are fit and healthy and OK to donate. They will look at things like your height, weight and temperature, and check that your heart is working well. They will also ask about any illnesses you or your family have had and any medicines you are taking. If the doctors find a reason that means it’s not a good idea for you to be a donor, they will explain this to you and your parents or carers. Donating your stem cells Children who are donors usually have their stem cells taken through something called a ‘bone marrow harvest’. You will probably go to hospital the day before it happens and have some final checks as you get settled. On the day, a doctor will give you a general anaesthetic, which means you will go to sleep and not feel anything while your stem cells are being taken. While you are asleep, the doctors will put a needle through your skin and into the back of your hip bones. The stem cells will be taken from the bone marrow inside your bones, which will take about an hour. You might feel a bit groggy and your back or hips might ache when you wake up, but the doctors and nurses will keep an eye on you and make sure you are recovering well. You should be able to go home again the day after. When I had the test to see if I was a match, I hadn’t had a blood test before. The nurses were really nice and made it easier for me. While I was waiting for the results, I felt OK. I was being strong for my brother and happy at the thought I could make him better. When Connor and I first spoke about the bone marrow transplant and that I was going to be his donor, he laughed! He said he may now be as good a footballer as me when he has had it! After finding out I was a match, I had meetings with the doctors and nurses at the hospital to explain what I would have to do and to ask me face to face if I was willing to give my bone marrow, which of course I said I was. They gave me some books and leaflets for me to take home about donating, and asked me if I had any questions. They did tell me I would be put to sleep and they would take my bone marrow from both sides of my lower back through the skin and into the bone to draw the marrow out of the bone. They said they would do this at the same time and as I was asleep, I would not feel anything. They did say I may feel a little discomfort and feel tired when I wake up. There were a few different blood tests in between and a short wait till I was admitted into hospital for day surgery. Connor was already in hospital during this time as he had begun his conditioning treatment to prepare for my donation. On the day of surgery, I went to the hospital and was taken to a clinic area to have bloods done again. This was to check I was OK and in case they needed to give me a transfusion after. They said it was protocol, but it was unlikely I would need it. I then went with my mum and dad to day surgery while my grandad stayed with Connor. I was made comfortable and was given a gown to wear. I was not allowed to eat after a certain time and was getting hungry. It was a little wait around but then they came to take me to surgery. My mum and dad were allowed to come down with me and I was wheeled down on the bed. It was a little scary, but I kept strong and they all were making me smile and relax on the way there. They went over what they were going to do briefly again when I was there and showed me the mask that I would put on to count to ten and that would make me have a little sleep. My mum stayed next to me when I put the mask on my face and counted. I did joke that it wouldn’t work. Next thing I remember was being back in the room with my mum and feeling a little giddy. I was making nurses laugh and my mum had tears in her eyes. I was very hungry, and the nurses gave me some food after taking some bloods. This was to check my levels. We had to wait for blood results to come back before any decision of when we could go home. I did feel a little woozy when I stood up but took it slowly for the first time walking to the toilet. After eating something and having a drink I did feel OK. My levels were OK to be discharged. I just needed to take medication for iron and to come back to see the consultant in four to six weeks. We could call if we had any concerns till then, and I could take paracetamol if I felt a little tender on my back. For the next two weeks I did take it easy, as instructed by the consultant (not playing football or running) and my legs did feel a little tired now and then. But after two weeks I was back to 110 per cent and the check-up went well too. There were two plasters on my back and you could see where the needle marks were. They did leave slight bruises and felt a little sore but healed fast and faded. - Taylor’s donation story, aged 11 when his brother was diagnosed After donating your stem cells After your stem cell harvest, you might feel tired while your body works hard to replace the stem cells that have been taken. You might need to take a few days off school, but this feeling won’t last for long. After having their transplant, your brother or sister will need to spend some time in hospital and in isolation before they come home, as their body starts to make healthy blood cells. As you see them getting better, you can remember that your stem cells have helped them. Keeping yourself happy and healthy Whether you are a stem cell donor or not, keeping yourself happy and healthy will mean you’re better able to help your brother or sister and the rest of your family. It was all very confusing but my family and friends kept me busy. When Charlie was in hospital, Dad set up a table tennis table at home and we both got really good. It helped us take our minds off things because it was so quiet without Mum and Charlie. - Betsy, aged 10 when her brother was diagnosed If I felt worried or sad, playing with my toys made me feel better. - William, aged 5 when his sister was diagnosed Here are some things that will help you: Keep doing the things you enjoy. Eat healthily. Get plenty of exercise. Get plenty of sleep. Talk and ask for help when you need it. If you feel worried or sad, write it down in a notebook or draw a picture. If I felt upset, cuddles helped me feel better - Hannah, aged 7 when her brother was diagnosed My advice to other children would be – don’t be afraid to ask for some time out. Ask to go and stay with a relative or friend, as it is important for you to do normal stuff. It’s also OK to say that you don’t want to go to the hospital to see your brother or sister if you need a break. You shouldn’t feel guilty about wanting to do something different. - Alicia, aged 10 when her sister was diagnosed Help from the Aplastic Anaemia Trust We are here to help you too. We can find other children for you to talk to, whose brothers or sisters have had aplastic anaemia. This can give you support from someone who understands what you are going through. We also have a helpline that you or your parents can call, on 0300 102 3202. Your brother or sister’s future after aplastic anaemia It might be hard to imagine while your brother or sister is very ill, but they are likely to go on to have a happy and healthy life after their treatment for aplastic anaemia. Don’t worry – it takes a long time but they will get better. - Hannah, aged 7 when her brother was diagnosed He is great! He helps me out and it’s a relief that he is OK (still a bit annoying though!). - Betsy, aged 10 when her brother was diagnosed They will have to keep having check-ups once their treatment has finished, so that the doctors and nurses can spot any problems quickly. They might also need to keep taking medicines. He’s still got it – he still gets his bloods checked every month but acts normally and can do everything he used to. - Hannah, aged 7 when her brother was diagnosed Connor is now doing well and has a lot more energy. He is running everywhere! My advice to others would be to be brave and be there for your brother or sister, even to just play and help them feel relaxed. - Taylor, aged 11 when his brother was diagnosed Be a superhero and support the Aplastic Anaemia Trust If your brother or sister has aplastic anaemia, you may feel like you want to do something different to help other people like them. One way to do this is through raising money for the Aplastic Anaemia Trust. The money will go towards doctors and scientists finding out more about aplastic anaemia and how to treat it, and also towards letting more people know about this illness so they can help too. Taking part in some fundraising together as a family can help you to feel closer together after a difficult time. For example, some families like to mark the anniversary of a stem cell transplant (sometimes called a ‘re-birthday’) by doing a sponsored walk or cycle together on that date each year. You could also talk to your friends and teachers about aplastic anaemia and find out if they would like to get involved. Perhaps you could host a nonuniform day where everyone has to wear red? Maybe you could arrange a sponsored sporting event or a bake sale? Or perhaps you could invite friends and family over for a re-birthday tea party? There are lots of ways you can get involved, and the team at the Aplastic Anaemia Trust are here to help you. Would you like this as a book? 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