Finding out that your child has cancer can be devastating. Even if you have been told that cancer is a possibility, hearing this confirmed by a doctor can be shocking. Or, you might feel numb and that it isn’t real.
There are a range of emotions you might feel including anger, disbelief, sadness. Sometimes a diagnosis can feel like a relief, especially if your child has been unwell for some time and you have been worrying about what’s wrong.
Everyone feels and reacts differently. There is no right or wrong way to feel. We don’t know what causes or how to prevent most childhood cancers. It’s not something you or anyone has done and no one is to blame.
Straight after diagnosis
Once your child has been diagnosed, you might need to travel away from home to a children’s cancer centre. You will receive a lot of new information about cancer and treatment. You and your child meet a lot of different health professionals.
It’s understandable if all this feels overwhelming, especially at first. This is normal. You will need some time and help to deal with the news. Trying to do this while trying to support your child and other family members can be hard.
Children’s cancer centres
Your child will have treatment at a specialist children cancer centre. These are also known as principal treatment centres (PTCs). Your child might have some of their treatment called ‘shared care’, at a hospital closer to home. These hospitals are called paediatric oncology shared care units (POSCUs).
Your child’s care is always overseen by the specialists at their PTC.
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Multidisciplinary team (MDT)
Your child’s multidisciplinary team work together to plan, deliver and support your child’s care. You will get to know some members of the MDT more than others. You meet a lot of people in the hospital when your child is first diagnosed. Some of the people you might meet include a:
- consultant paediatric oncologist (specialist doctor in children’s cancer)
- consultant paediatric haematologist (a doctor who specialises in treating blood cancers such as leukaemia and lymphoma)
- clinical oncologist or radiologist (a doctor who specialises in treating cancer with radiotherapy, chemotherapy and other drug treatments)
- clinical nurse specialist – a specialist nurse with a knowledge of childhood cancer, they often act as your child’s key worker, linking all the other professionals together
- dietitian (a person trained to give advice on diet during illness and using diet to manage illness and symptoms)
- social worker
- occupational therapist – helping your child with their everyday activities
- child and adolescent psychologist – available for emotional or psychological support
- play specialist – they understand child development and use therapeutic and play activities to help your child cope when in hospital
On the ward, your child is looked after by a team of nurses. The sister or ward manager has overall responsibility for the ward. And a qualified nurse will care for them. They might also be looked after by student nurses or healthcare assistants, who work under the guidance of the qualified nurse.
Telling your child
It’s normal to feel unsure about what to tell your child, especially when you are processing the information yourself. Every child and family is different and there isn’t one way to tell them.
A good start is often asking them what they think is happening. They might have had some time having tests in hospital and have picked up more than you realise. An honest idea of what is happening and what might happen can make it feel less frightening to them.
Some children don’t ask anything, but this doesn’t necessarily mean they don’t want to know. And it isn’t uncommon for them to wonder whether they have done something wrong that may have caused the cancer.
Ask your clinical nurse specialist for help and ideas about how to tell them. They are experienced in talking to children about cancer.
Every child has an individual treatment plan. This depends on many factors, but includes:
- the type of cancer they have
- where the cancer is and whether the cancer has spread (the stage)
- their general health
- results of imaging tests and scans
- results of tests that look at the biology of cancer cells
- their age
No two treatment pathways are identical, because each child is individual. This might mean that although your child has the same type of cancer as another child you meet they might have different treatments. Your child’s consultant will go through the treatment plan with you.
It can help to have a family member or friend with you when the doctors first explain the treatment plan. They will tell you a lot of new information and you might not be able to take it all in. They could write things down so you can look through it later.
It’s okay if you don’t have anyone that can be there. The ward nurses, ward doctors or your clinical nurse specialist can go over anything you have forgotten or don’t understand.
Types of treatment
Common treatments for childhood cancer include:
- targeted cancer drugs
We have more information on common treatments for cancer. It's aimed at adults with cancer, but you might find some of the information useful.
We have information on some types of childhood cancer. This information gives more detail on what treatment to expect.
Being in hospital
Some children have most of their treatment on the day care ward. This means travelling to hospital to have treatment and going home after it finishes.
Other children have more of their treatment as an inpatient in hospital, which means they stay in hospital for longer.
Your child being unwell and staying in hospital for the first time can feel overwhelming and scary. Having someone else make decisions about what happens can be challenging. It’s normal to want to protect your child and you know them best.
Ask lots of questions if you don’t understand what’s happening. Write questions down to ask later if you need to. Being informed about your child’s diagnosis, what their treatment is and the day to day ward routine can help you feel more in control.
One parent or carer can usually stay with your child while they are in hospital. There’s often a bed so you can sleep next to them. There is usually somewhere for you to have a shower and wash your clothes. And a parent’s kitchen where you can prepare drinks and snacks.
Children’s wards are often much more relaxed and child friendly spaces than adult wards. But they can still be busy and noisy places. At night the staff try and keep things as quiet as possible.
The team need to check on your child throughout the night. So, it’s easy to get tired through worry and lack of sleep. Try taking it in turns with another family member if that’s possible. It’s important that you get some rest too if you can.
Everyone in the UK has the right to take a reasonable amount of unpaid time off work to look after dependants in an emergency. There’s no set amount of time as it depends on the situation.
Talk to your employer as soon as you feel able to do so, to find out what flexible working arrangements they can offer. It can be hard but try not to rush into any decisions when you are in shock about your child’s diagnosis.
Macmillan have information on your rights at work and what to do if you feel your employer is not being reasonable.
CLIC Sargent has a guide for employers on their website. It is about supporting someone whose child had cancer.
Carers UK have factsheets and information about your rights in work.
There might be benefits and grants available to help you and your family. And a number of organisations offer financial advice. Talking to your child's social worker is a good place to start.
CLIC Sargent provides information on financial support for parents of children with cancer.
Let your child’s headteacher know about their diagnosis. It helps to give them a rough idea of the treatment plan. You and your child can decide how much information you’d like their classmates and friends to know. And remember this doesn’t have to be right away.
Most children’s cancer hospitals have hospital schools. This means that learning can continue while they are in hospital. Their hospital school teachers can keep in contact with your child’s school. And they can plan lessons or activities which take into account how well your child is feeling.
The hospital school room might also be a good place for your child to spend time with other children, where the focus is less on cancer or illness and on a more normal activity.
Children with cancer often return to school during their treatment.
Your other children
Parents often wonder what and when to tell their other children. There’s no easy way to do this. It depends on their age and development. But 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. Ask your clinical nurse specialist for help and ideas about how to tell them. They are experienced in talking to children about cancer.
The Children’s Cancer and Leukaemia Group (CCLG) have an animation and booklet aimed at siblings of a child with cancer.
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.
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.
Telling other people
How much you tell other family members or friends about your child’s treatment is up to you. The hospital staff are not able to share any medical information with other family and friends without your permission.
Updating lots of different people can be tiring. You might feel frustrated or upset going over the same information. Or you might worry about upsetting those you are telling. It can help to give the information out once to one person. They can then tell the others for you.
Other families have found updating a blog or a private group on social media helpful. This way you can give the update when is best for you. You also only have to do it once. You can get your child involved in this, taking pictures and writing or making videos about their own experiences if it’s appropriate.
Some families find it hard to talk to one another about cancer. They may be frightened about the emotions this could bring up. Or your friends and relatives may not want to talk to you about your child’s cancer because they worry that you won't be able to cope with talking about your situation. They may not want to upset you. This can make you worry even more as well as strain your relationships. But it is important to know that even if your family aren't talking about your child’s illness, they are probably constantly thinking about it and wanting to find ways to help.
Emotional help and support
It is essential that parents and other close family have support. It doesn’t show weakness to ask for help. Talking to friends and other members of the family can help you deal with your feelings.
Specialist nurses and social workers at the hospital can offer support too. Some centres can also offer more formal psychosocial help and complementary therapies to parents. Ask your child’s clinical nurse specialist if they can let you know what’s available.
Friends and family
Friends and relatives often wonder how best to support a family who have a child with cancer. You could ask a trusted friend or relative to let people know the things that might help you. This is different for everyone. Ideas for practical support that people might do to help are:
- making some meals that you can put in the freezer
- taking the children to and from school
- helping with the cleaning or laundry
- doing the shopping
- driving you and your child to the hospital for blood tests and appointments
This might give you a little bit more energy to focus on looking after yourself and your family.
Parents of children with cancer often get informal support from other parents and carers on the specialist unit. You might feel that the other parents can really understand how you are feeling. Although when your child is first diagnosed it might feel challenging to talk to other people and hear their stories.
There are also support groups through social media channels that you could search for.
Organisations that can help
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.
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.
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.
Maggie’s is a national charity with centres across the UK. They offer care and support to people affected by cancer. Each centre is beside an NHS cancer hospital and is run by specialist staff. If you’re not near a centre, you can access support and information on their website.
Some organisations can put you in touch with a cancer support group. We have information about books, leaflets and other resources about children’s cancer treatment.