Marrowkidz

Information 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. 

Coping with isolation

Tips and ideas from children who have been through isolation for aplastic anaemia

When you are being treated for aplastic anaemia, you may need to spend some time in isolation.

This means that for a while you need to be protected from germs and will need to see and spend less time with people than usual. This might not feel easy, but there are things you can do to make it feel better. 

Ask Erica & Aimee

In this video, Erica and her big sister Aimee talk about what it was like when Erica was in isolation during her treatment for aplastic anaemia:

I took my Lego blanket and teddy into hospital. I also did lots of crafts and colouring in. Mummy brought all my favourite food in as I don’t like hospital food.

 

Luke
Diagnosed at age 5

I think it’s important that objects are brought in from home during hospital stays (if you are allowed to). Things like blankets and teddy bears can bring comfort. Laptops, games consoles and films can help you keep entertained.

 

Ashleigh 
Diagnosed at age 11

Different kinds of isolation

Isolation will mean different things for different people.

You might be at home or you may be in hospital. It might mean being away from school. You might feel ‘different’ from your friends because of aplastic anaemia. Isolation is different for everyone, but there are some things you can do to help you through it.

I really missed school so it was great to go back, but it did take some time to get used to things because I felt different, and sometimes the children treated me differently than before.

Alice
Diagnosed at age 7

I did lots of Lego when I was in isolation. I had them all around my room.

I liked FaceTiming my brother when he couldn’t visit me yet. 

Luke
Diagnosed at age 5

Why do I need to isolate?

If you have a transplant, it can take some time for your new immune system to develop.

Your immune system helps your body to fight infection. Until your immune system develops, isolation is the best way to stop germs spreading and to keep you safe from infection.

But don’t worry, you’ll be allowed some visitors and the hospital will be able to tell you and your family who can visit and when.

Your visitors might need to wear things like aprons, masks and gloves. 

My mum stayed with me when I was in hospital. My dad and brother and sister came to visit but sometimes had to play through a window as they were not allowed in, to keep me safe. But it was nice to see them.

Connor
Diagnosed at age 7

Your feelings

Some days will feel easier than others, and this is totally normal.

If you feel sad or angry for a long time, it’s a good idea to tell your family so they can work out ways to help you feel better.

You may feel that your parents or carers are being annoying by not letting you do the things you want to. It’s a tough time for them as well as for you, and they are trying to help. Try to keep talking about how you feel, but listen to what they’re saying as well.  

I had a play therapist who helped me to understand a lot about my illness, the treatments and procedures in hospital. I could speak with her and ask questions I might not have asked my family or the medical professionals.

Alice
Diagnosed at age 7

I did not like to talk too much about how I was feeling. I liked to play to help get through it. My mum and play workers would speak about little bits at a time so I could listen, but I didn’t like to talk during it all.

Connor
Diagnosed at age 7

Staying connected

Staying connected with your friends and family is important. There’s nothing to stop you talking on the phone and chatting online if you can’t see them face to face. 

Your life will feel very different from the lives of your friends, but you can keep talking to them about what’s happening to you, if you feel OK about doing that.

I really enjoyed FaceTiming Jamie (my best friend) when I was in hospital. It was nice to see him. He told me jokes, which was funny.

Luke
Diagnosed at age 5

It’s good to feel connected to the outside world when you’re in hospital for a long time, so visits or phone calls will make a big difference.

Alice
Diagnosed at age 7

Here are some things that children told us were really helpful to have with them when they were in isolation:

• my teddy

• my blanket

• pictures of family – we made them so they could be wiped over each day and put on my wall.

• box of Lego to just build random things and come back to when I felt like it

• Uno (card game) – I had the nurses and doctors play too so got to feel closer to them

Read more about what to pack for a stay in hospital

If you are staying in hospital, you should be able to take things in with you to make your days pass more quickly. 

You might also be able to take in things from your room or home that make you feel more comfortable. Small things like this can make you feel happier.

Try to keep things as normal as you can. Start off with something as simple as getting up and getting dressed or watching your favourite TV programme at the same time each day.

Catch up on schoolwork, but only if you feel able to. Right now it’s all about your recovery, so don’t push yourself too hard. 


My mum washed my favourite teddy and got me another one so when one was in the wash I always had one. That helped, as some days I was feeling poorly and cuddled it.

Connor
Diagnosed at age 7

My friends sent cards and messages to me while I was not able to go to school, which made me smile. When I started to go back it felt strange. It was tiring to begin with, but being around my friends was the best and made me feel better.

Connor
Diagnosed at age 7




Would you like this as a book?

You can also order this advice as a free printed booklet, or ask a parent to order one for you here:

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Author: Leena O'Hara

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