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When a child has lymphoma: practicalities

This information is about practicalities if a child has lymphoma. We say ‘your child’ throughout to mean anyone aged up to 18 with lymphoma that you’re looking after, even if you are not their parent, guardian or primary caregiver.

We have separate information about lymphoma in children, which explains what lymphoma is and how it might be treated. We also have information for teens and young adults who have been diagnosed with lymphoma.

On this page

My child has been diagnosed with lymphoma – what happens next?

What treatment will my child be offered?

Where will my child have lymphoma treatment?

How can a social worker help?

How can I explain lymphoma and lymphoma treatment to my child?

Supporting your child with their emotions

Your child’s education

After treatment

Taking care of yourself


My child has been diagnosed with lymphoma – what happens next?

When you first find out that your child has lymphoma, you might feel a mixture of feelings, including shock, fear and numbness. Some people are relieved to get a diagnosis after having investigations into what might be wrong. Some people feel in disbelief, especially if the child didn't really feel unwell.

Speak to your child’s hospital about support available to you. There are cancer psychologists we can refer to and also youth coordinators and play specialists for more informal support.

Louisa Male, Clinical Nurse Specialist

From the point of diagnosis onwards, you and your child should be offered support to identify and address any practical, financial, physical, emotional and social needs you and they might have. This is known as a holistic needs assessment (HNA) and involves conversations with the health professionals looking after your child. You might be asked to fill out a questionnaire that helps your health care team get to know and identify what’s important to you. You can ask a member of your medical team for information about this. You might also be interested in information from Macmillan Cancer Support about holistic needs assessments.

Once a lymphoma diagnosis is confirmed, your child might have further tests and scans. These help their doctors find out as much as possible about your child’s lymphoma and how it is affecting them. They use the information to plan the best treatment for your child.

It can be hard to take information in, especially if you are feeling very stressed and anxious. You might find it helpful to take someone with you into appointments. For example, if possible, have two parents there, or a parent and another family member or friend.

I found that anxiety was a big part of how I felt – not knowing what's to come for my child, but also how to navigate it as a parent.

Charley, whose daughter Jess was diagnosed with T-cell lymphoma type at age 2

It can be challenging to wait for test results. Different people find different ways of coping. 

Alongside your child’s medical team, our Helpline Team is here to support you and your family, however you are feeling.

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What treatment will my child be offered?

A multidisciplinary medical team (MDT) of health and social care professionals work together to plan and provide the best possible treatment for your child. 

Your child’s medical team should talk to you and give you written information about the type of lymphoma your child has. They should offer opportunities to talk to them about:

Before your child can have any treatment, you’ll need to agree (consent) to treatment.

There can be a lot to take in and understand, which can be particularly difficult in times of heightened stress and anxiety. There might be times that you’d like information repeated or to be explained in a different way. Health professionals are used to this so don’t hesitate to ask. Remember that our Helpline Team is also here to support you.

Your child’s keyworker

Your child should have a key worker. This is a member of their MDT who will be your main point of contact for any questions or concerns you have. Usually, this is a lymphoma or haematology clinical nurse specialist.

Remember that it’s OK to ask as many or as few questions as you want to. Encourage your child to ask questions too. We have a list of suggested questions to ask about lymphoma that you might find helpful.

Agreeing (consenting) to treatment

Before your child has treatment, the hospital needs written consent to treatment

  • If your child is under the age of 16, a parent or guardian must provide consent to treatment. 
  • If your child is aged 16 or over, they are generally considered to be able to make their own decisions about treatment, although there are some exceptions to this.

Make sure that you understand what treatment involves and about any possible side effects and late effects of treatment. You might want to ask about any possible long-term implications, such as about any effects on your child’s fertility.

Involving your child in treatment decisions

You can involve your child in decisions about their care and treatment, even if they are under the age of 16. This can help them to cope with it, both now and in the longer-term.

No matter their age, consider how you can give your child some control. For example, talk to them about which arm to have an injection in, or what they might like to do as something fun or relaxing between treatments – just check first with their medical team that any activities are suitable for your child and about any safety precautions to take.

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Where will my child have lymphoma treatment?

Children and young people with cancer are treated in a specialist children’s cancer centre called a Principal Treatment Centre (PTC). There are 21 PTCs across the UK.

It might be possible for your child to have some of their treatment at a hospital closer to home through a children’s community nursing team. Having some appointments at the PTC and some at a local hospital is known as ‘joint’ or ‘shared care’. The local hospital is called a Paediatric Oncology Shared Care Unit (POSCU).

Your child might have treatment as an inpatient (which means they stay overnight at hospital) or as an outpatient (which means they can go home overnight).

Treatment as an outpatient

If your child needs to stay overnight in hospital frequently and making these journeys is difficult, speak to your child’s clinical nurse specialist or hospital social worker. It might be possible for them to help with travel arrangements, including telling you where you might be able to get help towards the costs. 

Read more about help with travel and travel costs in our information about day-to-day living.

Treatment as an inpatient

There might be times when your child needs to stay in hospital overnight. This might be for treatment or for monitoring of side effects, such as serious or persistent infections

A family member should be able to stay with them. Young Lives vs Cancer has information about staying in hospital with your child and what you’ll need. This also has information about packing your child’s bag and how to talk to them about their stay.

If it’s not possible to stay with your child, reassure them that you’ll be back as soon as you can, and, if possible, when this will be. You could also ask the hospital if and how you can contact your child (for example, by videocall) while they are away from home.

It’s often possible to visit a hospital before treatment starts so that you and your child can familiarise yourself with the environment and ask any questions. For example, you might like to find out about:

  • facilities, such as WiFi access, a TV, a shared space such as a family room or common room and a kitchen
  • social and emotional support, for example through social activities, social workers, play specialists or counsellors – some of this support might be available at the hospital and some within the community
  • educational support through hospital teachers
  • visitor policies, such as when visiting hours are and what visitors can and shouldn’t bring. 

I decorated Sonny’s hospital bedroom so that it didn’t even look like a hospital anymore. It was December when he moved in and there were fairy lights everywhere. We tried to make it quite fun. He had lots of things he could do in bed like Lego, drawing, playing with stickers.

Laura, whose son, Sonny was diagnosed with lymphoma at age 5

You might also be interested in information about Young Lives vs Cancer’s home from home scheme. This offers a limited number of free places for families to stay, close to their child’s principal treatment centre (PTC) during treatment. 

When will my child need to go to hospital?

When and for how long your child goes into hospital depends on factors such as:

  • Their treatment schedule, including the type and dose.
  • Times when their medical team needs to keep closer checks on them – for example if they develop an infection that needs treatment, or need monitoring for side effects of treatment.

Your child’s medical team should give you information about how much time your child is likely to spend in hospital.

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How can a social worker help?

A social worker can support children who have cancer and their families. They can help with a range of things to help with practical, social and emotional aspects. For example, they could help to:

  • Explain your child’s lymphoma to them.
  • In some circumstances, arrange travel (possibly also for any other children you have) to and from the hospital. This might include organising help towards travel costs. 
  • Communicate with your child’s school to help organise school work for when your child is able to study.
  • Apply for financial support that you might be eligible to receive.
  • Put you in contact with other families who have experience of a child who has, or has had, cancer.
  • Listen to you if you want to talk about how you’re feeling.

If you are interested in the support of a social worker, ask a member of your child’s medical team for information. Some hospitals have social workers provided through the charity Young Lives Vs Cancer.

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How can I explain lymphoma and lymphoma treatment to my child?

Lymphoma can be difficult to understand, particularly for a child. 

Go at your child’s pace and be honest and straightforward with them. Some people think it’s better not to tell them things that could frighten and upset them. However, children very often notice when something doesn’t seem quite right – for example, if they see you looking worried or overhear parts of conversations between adults. It can be confusing and unsettling if they don’t know what this is about, which can lead to anxiety and mistrust.

Once you know the diagnosis, talk to your child about it. Think about where and when you’ll tell them and whether you’d like someone else to be with you, for example, family or a member of your child’s medical team. You could also contact our Helpline Team to talk through ideas.

Below are some suggestions to help explain lymphoma and its treatment. You’ll also find some general tips for talking to children about lymphoma and a list of resources you might be interested in.

You might also find our video animation helpful. Depending on the age of your child, you could look at areas of our website together.

Lymphoma

Everyone’s body is made up of millions of tiny cells. Sometimes, if something goes wrong, the cells can grow out of control and form a lump. The lump of cells is bad and can make you unwell. The name of the illness is ‘lymphoma’.

Lymphoma treatment

You can also explain to your child that they might need medicine (treatment) to control or get rid of the cells. This medicine might make them feel tired or unwell because it is so strong. Prepare them for any changes that might happen after they start treatment, for example hair loss, sickness and fatigue and let them know that these should get better in time.

Our animation explaining high-grade lymphoma is designed for children with a family member who has lymphoma, but you might find it useful to share with your child.

Remote video URL

Tips for talking to a child about lymphoma:

  • Think about the questions your child might ask. 
  • Use words like ‘cancer’ and ‘lymphoma’ to avoid confusion.
  • Reassure your child that there is nothing that they did, or didn’t do, to cause the lymphoma. Let them know, also, that they can’t pass it on to other people.
  • Be honest if you don’t know the answer to a question. You can suggest ways you could try to get the information they would like you to.
  • Get an idea of the treatment your child might have, so that you can tell them a bit about it. Reassure them that there is an expert team of doctors and nurses working together to help make them better.
  • Explain that everyone is different – they might assume that what happens to other children at the hospital will happen to them, but this won’t necessarily be the case. Even if other children they see have the same type of cancer and the same treatment as your child, different people respond differently.
  • Give your child information in chunks so they have a chance to think about it rather than being overwhelmed by lots of information all at once. Let them know that they can ask questions as and when they want to.

Consider resources you could use to help explain lymphoma. For example:

Your key worker can usually give age-appropriate resources to help discuss with your child and any siblings.

Louisa Male, Clinical Nurse Specialist

Think about the possibility of your child asking questions that might be very difficult for you to answer – for example, whether the treatment will definitely work. Our Helpline Team are here to support you if you’d like to talk through possible approaches. Young Lives vs Cancer also has information to help you support your child, including if they won’t get better.

I noticed that there can be a real elephant in the room when it comes to discussing the fact that your child might not get better. For what it's worth, Sonny didn’t ask me this – possibly as he was so young. However, I had decided that I would not ever lie to him, and that my answer would be that the medicine the doctors are giving you is to prevent that happening. Sonny is now at university. He’s 19 and has been in remission for almost 14 years. 

Laura, whose son, Sonny was diagnosed with Burkitt lymphoma at age 5

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Supporting your child with their emotions

There is huge value in simply being with your child – no matter their age. Even watching a film together or playing a game together can help them to feel your support. 

Lymphoma is likely to affect some aspects of day-to-day life. Wherever possible, try to keep a sense of normality.

  • Keep a routine. This helps to give a sense of familiarity, control and emotional safety, which is especially important after unsettling news.
  • Allow your child to do their usual activities when they can. This can help give them something else to focus on. It might provide an outlet to express and cope with their feelings.
  • Keep ground rules. This can be difficult if you don’t have much energy or feel guilty for doing so. However, it can be more unsettling to a child if day-to-day rules are not upheld. Although there are bound to be times when flexibility is needed, basic ground rules are an important part of consistency and routine.

Supporting young children emotionally with their diagnosis

An important part of supporting children is taking care of your own wellbeing.

Being open and honest is often the most helpful approach in supporting young children. 

  • Let them know that they haven’t done anything to cause their lymphoma, and reassure them that they can’t give it to anyone else.
  • Give some notice about upcoming treatment. However, going into a lot of detail about the whole, longer-term treatment plan could be overwhelming.
  • Prepare your child for the fact that there will be times that they are unable to go to school. This might be because they have a hospital appointment or because they need to rest after treatment. 

Keep in mind that young children might express themselves behaviourally when they are struggling emotionally. Try to help your child find ways of expressing themselves, for example, through drawing or play, as well as talking. It can also be helpful to let their teachers know about their situation so that they can offer support. Sharing some of your own feelings about treatment with your child might help to normalise emotions. In turn, it can help them to tell you how they’re feeling.

Cancer can feel like such a rollercoaster of a journey. Consider talking to a counsellor from the get go, so you can ride the wave of the storm, not deal with the trauma in one hit later – this can benefit both you and your child.

Charley, whose daughter Jess was diagnosed with T-cell lymphoma type at age 2 

You can also speak to your child’s clinical nurse specialist to find out about support available to help your child deal with difficult emotions.

Supporting teens emotionally with their diagnosis

It can be difficult to get the balance between offering support and respecting the independence and privacy of a young person. Try to be led by them. 

  • Keep in mind that there might be times when they want your company, to talk or to do something fun. However, there might be times when they’d prefer to be alone.
  • Speak to them before their hospital appointments. Try to find out if they want to lead the discussions with their doctors with you there to support, or if they’d prefer you to ask the questions.

Before starting treatment, their medical team should tell them about any side effects they are likely to experience. These can be particularly challenging for a young person to deal with. For example, they might feel self-conscious if treatment changes their appearance by causing hair loss or a change in weight. Their medical team should offer support to help manage any side effects. 

As young people try to cope emotionally with what is happening, their behaviour might change – for example, they might show anger, become withdrawn or engage in risky behaviours. Try to find effective ways of communicating and let them know that you are ready to talk if and when they’re ready. 

Some young people might prefer to talk to someone outside of the family, for example a close friend or other young people who are affected by cancer. Our Helpline Team is also here to offer support. You or the young person could also talk to their medical team about the psychological support available to them, for example counselling, to help process their emotions. 

Our Young person’s guide to lymphoma has more information for young people aged 16 to 25, including about lymphoma, its treatment and tips to live well during treatment and beyond.

Our information for children and young people who have been diagnosed with lymphoma might also be of interest to teenagers and young adults aged up to 24 years.

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Your child’s education

Your child is likely to need some time out of school during and after lymphoma treatment. Reassure them that you, the hospital and their teachers will work together to help keep them up-to-date, both in terms of learning and any other aspects of school life. 

Some children might make insensitive comments, which can feel very hurtful. It can help to explain to your child that not everyone understands as much about lymphoma as they do. Encourage your child to talk to you about how they are finding school and whether they are having any difficulties so that you and their teachers can support them.

Talking to your child’s school

Talk to your child’s school about what’s happening. Find out how they can support your child’s social, emotional and educational development. 

It might help to tell them about your child’s lymphoma and treatment plan, including any side effects. Let them know that lymphoma and some treatments can increase the risk of infection for several months after treatment finishes. Ask them to let you know as soon as possible about any illnesses at the school, particularly chickenpox, measles and shingles.

Your child’s consultant or GP can write a letter to help explain their situation. If your child would like them to, their keyworker can also help to explain your child’s diagnosis to their teacher and let them know how they are feeling.

The government website has information about illness and your child’s education

With your child’s permission, we can support informing their school, classmates and year group about the diagnosis. This can help to increase understanding about absence from school and things like hair loss and any other changes in physical appearance. It can help for pupils to know the basics: cancer is not contagious, and you don't get it because of anything you have done. The person with lymphoma is still the same person. Just by being ‘normal’ with them, their friends can make a big difference to how the person feels.

Louisa Male, Clinical Nurse Specialist

Finding out how the hospital can support your child’s education

You can also ask the hospital how they can help to support your child’s education, for example, by providing access to hospital teachers. They might also be able to arrange for a member of hospital staff (such as a social worker or clinical nurse specialist) to visit your child’s school to help teaching and pastoral staff to support your child.

Young Lives vs Cancer has information about school, such as communicating with your child’s school, staying in touch with friends during treatment and exams while your child is having treatment. Children’s Cancer and Leukaemia Group also has information about dealing with school for children diagnosed with cancer.

The hospital set up a Skype call between Sonny and his classmates, which absolutely made his day. 

Laura, whose son, Sonny, was diagnosed with lymphoma at age 5

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After treatment

Finishing treatment is a time of adjustment and finding a ‘new normal’ to live well, with and beyond lymphoma

Your child should be supported by their medical team in their recovery from treatment, including information about keeping well after treatment. They should be offered personalised care and support that is suited to their individual needs.

After treatment, your child will have follow-up appointments. Their medical team should tell you what the schedule for these is and about any symptoms to look out for that you should contact them about between appointments. They should also talk to you and your child about possible signs of late effects (health problems that can happen months or years after treatment) and what to do if you notice them.

Although it can bring relief and a sense of celebration, some people find the end of treatment difficult, having felt well-supported by the regular interactions with their child’s medical team. There is no right or wrong way to feel – try to be patient as you and your family adjust.

I felt a bit strange not wanting to go home after Sonny’s treatment, but the hospital explained to me that this is actually very common. I’d got used to us having frequent contact with the medical team so it took time to get used to dropping this down to follow-up appointments.

Laura, whose son Sonny was diagnosed with lymphoma at age 5

Young Lives vs Cancer has tips from parents and one of their nurse educators about dealing with mixed emotions as your child approaches the end of cancer treatment.

You might find that friends and family are counting down the days to your child finishing treatment. However, for many parents and people with lymphoma, this brings a mix of emotions. For example, excited that there’s no more chemo, but daunted at the idea of no more treatment sessions you’ve relied upon to kill cancer cells, and the uneasy feeling worrying the lymphoma could come back. This can feel like a huge conflict of emotions.

Charley, whose daughter Jess was diagnosed with T-cell lymphoma type at age 2

Treatment summary

As part of their care after treatment, your child’s medical team should offer personalised care and support suited to their individual needs. This includes giving you a written treatment summary, outlining your child's lymphoma diagnosis and treatment, its possible side effects and late effects

The treatment summary should also tell you what symptoms to look out for and who to contact if you notice them, including an out-of-hours number to call if you need to. The summary should outline your child’s follow-up plan and any lifestyle recommendations, for example about diet and exercise.

Medical matters after treatment

Your medical team will give you and your child information about health and safety precautions to take after treatment, both now and in the future. We outline some of these below. 

It’s important that any health professionals treating your child know that they have had lymphoma and what treatment they’ve had. This will be outlined on the treatment summary.

Your child might also need to carry a card with information if they:

The purpose of these cards is so that anyone providing medical care in the future (including doctors, dentists and anaesthetists) can take any necessary precautions. This might include more close monitoring and, if appropriate, offering a different treatment.

General health and safety precautions

There are some general health and safety precautions your child can take to help them stay well after lymphoma:

  • Limit skin damage from the sun. Treatments such as chemotherapy and radiotherapy can have a lasting impact on our skin’s sensitivity to sunlight. Exposure to UV radiation from the sun can also increase the risk of developing other cancers. Take care to avoid damage from the sun by covering your child’s skin and using a high factor sun screen (SPF 50), particularly when UV rays are strong. Cancer Research UK has more information about sun, UV and cancer. The NHS website also has advice about sun safety.
  • Keep up-to-date with any vaccinations needed. Ask your child’s consultant or clinical nurse specialist for advice about vaccinations, including whether your child should have the annual winter flu jab and the pneumococcal pneumonia vaccination. Some vaccines given in childhood might also need to be repeated. Your child might be advised to wait until at least a year after finishing treatment to have some live vaccines.
  • Get advice from your child’s medical team about travelling to another country, if this is relevant to your child’s situation.
  • Some treatments for lymphoma can affect the heart. If your child gets pregnant later in life, they might need a scan of their heart and to be monitored more closely during labour.

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Taking care of yourself

Having a child diagnosed with lymphoma can bring many challenges. Find ways to support your wellbeing, as well as addressing practical concerns.

Your wellbeing

Lymphoma can heighten tension, stress and anxiety. It can affect relationships within and outside of the family. Try to find effective ways of communicating with the people around you; honest conversations can help to connect with others, and support you and them through this difficult time.

You might also find it helpful to be in touch with others who can relate to your experience of having a child who has cancer. Some hospitals have support networks where you can connect with other parents and carers about your experiences and how you’re feeling – ask your child’s medical team if they can signpost you to any sources of such support.

I think I could have benefitted from being in contact with others who have been through a similar experience. I had questions that weren’t necessarily medical, and I didn’t want to look online. I had feelings that I thought might be unusual but now know are quite common. I would have liked someone to have said to me, ‘take help when it’s offered’. I also found it helpful that my sister took on communicating with others about our situation, so that I didn’t have to keep repeating information and conversations.

Laura, whose son, Sonny was diagnosed with lymphoma at age 5

Some people feel uncomfortable with making time to relax and do enjoyable things; however, taking care of your emotional wellbeing can be greatly beneficial to your child. At a time of continual readjustment, getting enough rest to be able to offer reliable and consistent support to your child is key. Try to build in time do things ‘away from your child’s lymphoma’, for yourself, as a family, and with your partner, if you have one. Friendships can also be an important source of support.

I found that being honest with friends from the beginning was helpful. For example, you could explain 'I won’t always feel strong, and there are going to be worrying times. Let me talk about them.’ You might want to think about asking them to avoid the cliché comments like 'stay strong' or 'I don't know how you do it'. Instead, I asked them to use phrases like 'how's today?' or 'what can I do to help?'

Charley, whose daughter Jess was diagnosed with T-cell lymphoma type at age 2

If you’re looking after a child who has lymphoma, you meet the UK Government’s criteria of being a carer. There is information on the GOV.UK website about the support you might be entitled to as a carer. You can also find out about the practical and emotional support you might be able to access in our information about caring for someone who has lymphoma.

Practical concerns

In addition to concerns about your child’s health and wellbeing, you are likely to have practical concerns about day-to-day life

  • Ask your child’s medical team what help is available to you and your family.
  • Find information at GOV.UK about financial support you might be entitled to claim.

Home Start is a charity that offers volunteer-provided support to families across the UK, including with practicalities such as household chores and shopping.

There are many other organisations that offer support and information dedicated to children and young people with cancer.

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Further reading