Children’s cancer affects the whole family. It’s a big shock and change for everyone, including your other children. The relationship between brothers and sisters is unique and it will be affected in some way by their sibling’s cancer diagnosis.
All the tips here are from parents who have experienced children’s cancer. There is also information about where to get extra help and support.
How will my other children react?
All children respond differently to their brother or sister being ill. How they feel and behave depends to some extent on how old they are and what they are able to understand. But it’s not unusual for them to feel worried, angry, jealous or guilty. These feelings are normal. Recognising and saying to them that what they are feeling is okay can help them.
Their feelings also may change throughout diagnosis, during and after treatment. Some children might not be able to find the words to describe how they are feeling. But they may show a change in behaviour, such as becoming more withdrawn or displaying more challenging behaviour at school.
The main focus of your attention will often be on your child with cancer. This care and worry for your child with cancer is natural. You are not doing anything wrong. There are small things you can do to help your other children feel special too.
- Calling, Skyping or FaceTiming can let your children know that you are thinking of them even if you can’t be there.
- Encourage your child to keep a feelings diary, you can read it, or go through it together when you’re home.
- Keep after school and bedtime routines as consistent as possible.
- Let them suggest things they would like you to do together.
- Do things together, just you and them. This one to one time can be really beneficial – even if it is just 10 minutes sitting together or watching a TV show together.
- Your children might worry about upsetting you if they tell you how they feel, so it can help to have someone else they can be honest with. This could be a health professional or a close family member or friend.
- Try and give the same treats or presents to your other children as you do to your child with cancer.
- Ask your clinical nurse specialist (CNS) about sibling support groups – most hospitals have their own or are linked to one at a local hospice.
There are charities that help families do more ‘one off’ experiences together. You might want to start by looking at Joss Searchlight, a charity run by parents that aims to support the whole family through a childhood cancer diagnosis.
Talking to your other children
Parents often wonder what and when to tell their other children. There’s no right or wrong decision. It depends on their age and development. And what you judge to be best for all your family.
They might have picked up that something is wrong. It could be that what they are imagining is worse than the reality of their brother or sisters’ cancer diagnosis.
Your child’s clinical nurse specialist and play specialist can help you to help your other children. The clinical nurse specialist is used to talking to children about cancer. And the play specialists are confident in helping children understand about illness and treatment. Play can be very helpful for young children. It’s a safe way for them to learn more and explore fears or questions.
It’s not uncommon for children to worry that their brother and sister might die. Your child might start to ask more questions about death or the future more generally. This is an extremely sensitive and emotional conversation for you all to have.
Ask for help from your nurse specialist or a member of the wider team if you need help and support with these kinds of conversations. No one expects you to have all or any of the answers and the professionals involved know how difficult this is to talk about.
What is cancer? Will I catch it?
Cancer is when abnormal cells divide in an uncontrolled way. In most cases, we can’t predict which children have an increased risk of getting cancer when they are young.
Family members sometimes feel guilty when a child is diagnosed with cancer. This includes siblings. They might think something they have done has caused their sibling to become unwell. This could be because they had a fight, or they had been angry with their brother or sister. Telling them confidently that we don’t know exactly what causes children to get cancer and that it’s not anything they have done can help them understand.
It can be helpful to reassure them that you can’t catch cancer. Cancer is not infectious. Your child can’t pass it on to their siblings. It is unlikely for two children in one family to be diagnosed with childhood cancer.
CLIC Sargent have a book aimed at children called Lucy Has A Tumour. It explains cancer clearly and simply, with a lot of pictures. You might find it useful to show your children.
Preparing brothers and sisters
Cancer causes physical changes to the body. It may be helpful to let your children know what to expect when they see their sibling. For example, this might be letting them know in advance that their sibling will lose their hair.
Let your other children know if their brother or sister has any tubes coming out of their body, such as central lines or a feeding tube. You could explain this by showing them a photograph first.
The Children’s Cancer and Leukaemia Group (CCLG) have an animation and booklet aimed at siblings of a child with cancer. This also can be a good place to start.
Children can sometimes have quite unpleasant ideas about hospitals and what is happening. The reality of being with their brother or sister might be reassuring for them.
Your children might not always be able to visit their brother or sister. This might be because of the risk of passing on an infection. Or due to the ward visiting rules. Let them know it’s nothing personal and that they haven’t done anything wrong.
Day to day help
Coping and caring for your other children can be challenging when your child is unwell and having treatment. And arranging childcare for your other children can be difficult. You are likely to need to be in hospital with your child at times during their treatment. This might be because they are having treatment as an inpatient. Or if they have an infection or needing help with side effects of treatment.
It can be difficult to keep to your children’s routine. Although it is likely your child or children’s behaviour will change, having consistent boundaries and expectations can help them to feel safe. So:
- Let them know what is going to happen and when
- Tell them who is picking them up from school
- Keep their after school schedule as consistent as possible
Unfortunately, this consistency isn’t always possible. Things may need to change last minute, so plans must change. This can be upsetting for children looking forward to your time together. It can be good to prepare them that this might happen in advance.
Great Ormond Street Hospital have developed a Family File, it includes a care schedule that you can print out. You could use it to note down important things in any of your children’s routines. Everyone involved can then try and keep to it as much as possible.
There are organisations that can help you. Talk to your clinical nurse specialist or social worker about what support there might be in your area.
The Rainbow Trust provides support for families of children with a life threatening or terminal illness in certain areas of the UK. Their family support workers support families at home, out in the community and in hospital.
Sibling donors for stem cell or bone marrow transplants
Some children have a stem cell or bone marrow transplant as part of their treatment. This involves having intensive treatment, which has a good chance of destroying the cancer cells. But it also destroys the healthy stem cells in the bone marrow too. The child then has a drip of new stem cells into their bloodstream after their high dose treatment. These are most commonly from:
- a family member, most often a brother or sister
- a donor from the transplant register
Tissue typing is a set of blood tests that show how closely a possible bone marrow donor’s tissue matches the person needing a transplant. The results help doctors decide who could be a possible donor. A brother or sister is most likely to be a match.
Donor siblings are supported by the hospital stem cell transplant team. They know how to explain the procedure to even very young children and how to make sure they are confident and well informed about taking part.
There are strict guidelines and regulations about who can donate. A specialist will assess your child to make sure they haven’t been asked to do something against their wishes. The specialist will do this in a sensitive way so that they can understand based on their age. This meeting allows the sibling donor to ask any questions too and get the support that they need.
Siblings aren’t always a match and sometimes they can feel disappointed if they aren't able to donate. Reassuring them that they haven’t done anything wrong and explaining that they can help their brother or sister in different ways may help.
As with any treatment, unfortunately stem cell transplants aren’t always successful in the long term. Letting your child know upfront it’s not their fault if there’s a problem along the way may help. Also, being clear that there are no ‘good’ or ‘bad’ stem cells. This could go some way to alleviate the feeling of responsibility for the future.
Siblings have highlighted some real positives about donating to their brother or sister. These include the feeling of doing something to help and a closer relationship afterwards.
There are organisations that can help all the family, including brothers and sisters.
Cancer Research UK has an online forum called CancerChat. Here you’re able to chat to other people, including parents, who are affected by cancer.
Cancer Research UK’s Kids and Teens Star Awards recognise the courage of children and young people facing cancer. They celebrate siblings too.
The Children's Cancer and Leukaemia Group (CCLG) work to coordinate national and international clinical trials. They also provide information about cancer for children and their families. This includes information for and about brothers and sisters of children with cancer.
CLIC Sargent can offer help and support for parents who have a child recently diagnosed or living with childhood cancer. They can also help you access financial support.
CLIC Sargent has information written for teenage siblings on their website.
Teenage Cancer Trust is a national charity providing specialist units, expert staff, support events, education and information for 13-24 year old’s diagnosed with cancer, and their friends and families.
They run cancer support sessions in schools. A cancer expert visits to discuss everything from types of cancer to bullying. It can be a useful way to help people understand what older siblings are going through.
YoungSibs provides support for children and young people who have a sibling who is disabled, has special educational needs or a serious long term condition. Children and young people are able to ask a question to a sibling advisor in confidence via the website. They are also able to chat to other siblings on the forum.
Winston’s Wish provides support for children and young people who have lost a sibling.
Helpline: 08088 020 021
Contact support families where one or more children have a disability with guidance and information. They have information on supporting siblings on their website.
The Rainbow Trust provides support for families of children with a life threatening or terminal illness in certain areas of the UK.
Their Family Support Workers help siblings cope through individual one to one support, regular siblings groups, events and activities
Joss Searchlight is a charity run by parents. It aims to support the whole family through a childhood cancer diagnosis.