Freephone helpline 0808 808 5555 [email protected] www.lymphomas.org.uk Non-Hodgkin lymphoma in children Non-Hodgkin lymphoma (NHL) is a type of lymphoma, a cancer of the lymphatic system. Lymphomas are the third commonest group of cancers in childhood (after leukaemia and brain tumours). Every year over 80 children in Britain develop NHL. Despite this many parents have never heard of non-Hodgkin lymphoma or NHL before. Treatments for NHL are generally very successful and most children who have lymphoma will be cured. This leaflet aims to answer the main questions that parents of children diagnosed with NHL might ask: ● What is non-Hodgkin lymphoma? (see below) ● What causes NHL? (page 2) • What are the symptoms of NHL? (page 3) ● How is NHL diagnosed? (page 4) ● What further tests might my child need? (page 4) ● What does the ‘stage’ mean? (page 5) ● How is NHL treated? (page 5) ● What side effects is my child likely to have? (page 7) ● How can I best look after my child at this time? (page 10) You may find it helpful to read our booklet High-grade non-Hodgkin lymphoma or one of our type-specific information sheets too. Although dealing mainly with NHL in adults, these provide more detailed information on some of the areas we mention here. Please see our website or ring our helpline (0808 808 5555) for more information. What is non-Hodgkin lymphoma? Lymphomas occur when a type of white blood cell called a lymphocyte starts to grow in an abnormal, uncontrolled way. Lymphocytes are involved in fighting infections. They move around the body in the blood, but also live in our lymph nodes (glands). These lymph nodes are part of our lymphatic system (see figure 1 on next page), which is part of the body’s defence against infection – the immune system. Lymph nodes are found all over our bodies: some are easily felt if they are enlarged, like those in your neck when you have a sore throat; others are deeper inside us and may only be seen on scans. Non-Hodgkin lymphoma in children LYM0076/NHLinChild/2013v2 1/16 In lymphoma, the abnormal lymphocytes Figure 1: The lymphatic system grow in an uncontrolled way within the lymph nodes. This makes the lymph nodes swell and enlarge. These abnormal lymphocytes (lymphoma cells) Lymph nodes may grow in other places too, such as in neck the spleen, liver, gut, skin and bone Lymph vessels marrow. When these areas are affected Lymph nodes by lymphoma, they are called in armpit extranodal sites (meaning ‘areas outside of the lymph nodes’). Non-Hodgkin lymphoma (NHL) refers to any lymphoma that is not a Hodgkin lymphoma. In children about 6 in every 10 lymphomas are NHL; the remainder are Hodgkin lymphoma. Hodgkin lymphoma differs from NHL in both its behaviour and the way it is treated. This information sheet is specifically about NHL in childhood; we produce a separate information sheet about Hodgkin lymphoma in children. Lymph nodes in groin Thymus Diaphragm (muscle that separates the chest from the abdomen) Spleen Liver What causes NHL? In most cases of childhood NHL there is no known cause. There are though a few children who have problems with their immune systems due to congenital immune deficiency or human immunodeficiency virus/acquired immune deficiency syndrome (HIV/AIDS). Children with such illnesses are more likely than other children to develop NHL. However, most children in the UK who develop NHL were previously fit and well with no other medical problems. It is important that you know: ● Your child didn’t catch lymphoma. ● Your child did not inherit lymphoma from you. ● Your child can’t pass it on to anyone else. Who is affected by NHL? NHL is a relatively rare disease in children but some types are seen more commonly in late teenage or early adult life. NHL is rare in children under the age of 2 years. Boys are more often affected than girls. NHL is much more common in adults with almost 12,000 people diagnosed each year in the UK. Many of the types of NHL seen in adults, especially the low-grade types, are almost never seen in children. Non-Hodgkin lymphoma in children LYM0076/NHLinChild/2013v2 2/16 Most of the lymphomas seen in children are what are known as high-grade (rapidly growing) lymphomas. Although this may sound alarming, the high-grade lymphomas are in fact more likely to be cured with treatment. The outcome for children with NHL is much better than it is for adults. What different types of NHL are seen in children? The different types of NHL seen in children are divided by the type of lymphocyte they develop from. Lymphocytes are either T cells or B cells, so the types of NHL are known as either T-cell or B-cell lymphomas. The B-cell lymphomas seen in children include Burkitt lymphoma (BL) and diffuse large B-cell lymphoma (DLBCL); the T-cell lymphomas include lymphoblastic lymphoma (T-LBL) and anaplastic large cell lymphoma (ALCL). B-cell lymphomas (Burkitt and DLBCL) account for around half of the NHL seen in children, T-LBL for up to a quarter, and ALCL for about 1 in every 5 cases. If you would like further information on lymphoma classification please ring our helpline (0808 808 5555). What are the symptoms of NHL? The symptoms children with NHL develop are quite variable, depending on the exact type of lymphoma or where the disease develops. Symptoms such as unexplained fever, weight loss and night sweats can occur in all types. Burkitt lymphoma often involves lymph nodes in the abdomen or the bowel itself. As a result it may present with massive abdominal swelling, pain, vomiting, or with a build-up of fluid in the abdomen. It may also cause fluid to collect in the chest, which can result in difficulty breathing. The other common form of B-cell NHL, diffuse large B-cell lymphoma (DLBCL), can develop in the chest, abdomen and sometimes the bones. This type of lymphoma, like Burkitt lymphoma, is rapidly growing, sometimes called 'high grade'. Both types can present with what is known as ‘bulky disease’, meaning the lymphoma has formed large lumps. T-cell lymphoblastic lymphoma (T-LBL) most commonly causes enlargement of glands inside the chest around the heart, in an area known as the mediastinum. Enlargement of these glands can put pressure on the trachea (windpipe) and result in coughing or wheezing and shortness of breath. These symptoms may be mistaken for asthma. Sometimes the glands will also put pressure on the blood vessels inside the chest. This pressure can lead to swelling of the neck and redness of the face and can make the neck veins stand out. Shortness of breath may also be due to fluid collecting in the chest around one or both of the lungs. Much more rarely B-cell lymphoblastic lymphoma (B-LBL) can occur. It causes symptoms similar to those seen with T-LBL but lumps and nodules under or in the skin/scalp occur quite commonly. Non-Hodgkin lymphoma in children LYM0076/NHLinChild/2013v2 3/16 Anaplastic large cell lymphoma (ALCL) can present anywhere in the body, either in the lymph nodes or elsewhere in extranodal sites. The lymphoma often causes pain and swelling, for example in the gut, bones and skin. How is NHL diagnosed? If any type of lymphoma is suspected, a number of tests will be needed. These aim firstly to confirm the diagnosis and the precise type of lymphoma. Further tests then assess what areas of the body are being affected. To make the diagnosis, a small operation to remove some or all of the involved lymph node will be needed. This is known as a biopsy. Your child will usually be given a general anaesthetic to send them to sleep for about half an hour. Sometimes the diagnosis may be made by drawing off a sample of the fluid from the chest, if there is any. Often your local hospital will carry out the biopsy but will send the sample to a specialist centre to be examined. The sample needs to be looked at under a microscope by an expert lymphoma pathologist. Other specialist tests that look more closely at the cells may also need to be done to make a definite diagnosis. What further tests might my child need? Your child will need other tests too. These tests will be to find out what parts of the body are affected by the lymphoma. Knowing this allows the doctors to help plan the best treatment for your child. This process is known as ‘staging’. The tests may include the following: ● blood tests ● chest X-ray ● ultrasound scan ● computed tomography (CT) scan ● magnetic resonance imaging (MRI) scan. Your child will probably also need to have a bone marrow biopsy and a lumbar puncture. Both of these are usually done with your child asleep (under general anaesthetic). A bone marrow biopsy involves taking some of the bone marrow from the hip bone using a special needle to see if any lymphoma cells are present. A lumbar puncture (LP) involves taking some of the cerebrospinal fluid (CSF) from your child’s back using a special needle. The CSF is the clear liquid that cushions and protects the brain and spinal cord. Lymphoma cells may be found in the CSF in some types of lymphoma, so the fluid is examined to see if any lymphoma cells are present. If you would like more information about these tests, please ring our helpline (0808 808 5555). Non-Hodgkin lymphoma in children LYM0076/NHLinChild/2013v2 4/16 What does the ‘stage’ mean? The ‘stage’ of the lymphoma tells the doctors where the lymphoma is in your child’s body. It is based on the doctor’s examination and on the results of any tests that have been done. There are a number of different staging systems for lymphoma but the one used most often for NHL in children and young people is the St Jude classification. Stage I One group of lymph nodes or a single extranodal site affected, but not in the chest or abdomen Stage II One of the following: Stage III Stage IV ● Two or more groups of lymph nodes or two extranodal sites on one side of the diaphragm* ● One extranodal site and the nearby lymph nodes affected on one side of the diaphragm* ● The lymphoma was in the abdomen but has been completely removed by surgery One of the following: ● Lymph nodes or extranodal sites affected on both sides of the diaphragm* ● Lymphoma that started within the chest ● Lymphoma that started alongside the spine or on the outer covering of the brain ● Lymphoma that is in the abdomen only but cannot be removed by surgery Lymphoma in the bone marrow or in the central nervous system (the brain and spinal cord), whether or not there is lymphoma elsewhere * a sheet of muscle that separates the chest from the abdomen (see figure 1 on page 2) Lymphomas that are stage I or II are often referred to as localised NHL; stages III and IV may be referred to as extensive or advanced-stage NHL. This may sound alarming but there are good treatments available for all stages of NHL in children and most children have stage III or IV disease. How is NHL treated? This information does not give advice on what sort of treatment your child should be having. Different sorts of treatment are needed depending on which type of NHL your child has and what stage it is. Your hospital specialist is the best person to talk to you about your child’s treatment. Non-Hodgkin lymphoma in children LYM0076/NHLinChild/2013v2 5/16 The outlook for children and young people with NHL has improved considerably over the last 30 years: today most are cured with chemotherapy. Radiotherapy (treatment with X-rays) is rarely required. Chemotherapy Chemotherapy means treatment with drugs. Many of the drugs used to treat NHL are known as cytotoxic drugs, meaning they kill cells (‘cyto’ means cell and ‘toxic’ means poisonous). A number of different drugs may be used to treat NHL. Several different sorts of drugs are usually given together. Each combination of drugs is known as a drug regimen. Using a variety of drugs and often giving them again a few weeks later increases the chances of killing all the lymphoma cells. You will be given information about all the drugs your child will receive and the likely side effects of each drug. Some of these drugs have to be given intravenously (meaning into a vein). Most children with NHL will have a central line put in to one of their main veins (see figure 2). The ‘line’ stays in throughout their treatment, making it easier to have blood tests as well as the chemotherapy. Lines used in children may be in the form of a Hickman® or Broviac® line or a portacath. These lines are put into one of the big veins just above the heart during a small operation before treatment starts. You will be given instructions about how to look after the line at times when your child is not in hospital. Figure 2: A central line The line is inserted into the chest here Superior vena cava Catheter tunnelled under skin Tip of central catheter Heart The line comes out here Clamp Connection for drips or syringes Some drugs are given orally (by mouth). Chemotherapy may also be given into the CSF (the fluid surrounding the spinal column). Chemotherapy given this way is called intrathecal chemotherapy. It is given during a lumbar puncture (LP), generally with your child under a short general anaesthetic. Treatment with chemotherapy can last from a few months to 2 years, depending on the type of NHL your child has. Non-Hodgkin lymphoma in children LYM0076/NHLinChild/2013v2 6/16 Treatment of specific types of NHL All types of NHL in children are treated with chemotherapy. The precise combination of drugs used and how long they are given for varies with the type of lymphoma. The treatment regimens used have been worked out over the last 20 years with the help of clinical trials run in the UK and Europe for children with NHL. Your child’s specialist will discuss with you the treatment they are recommending. They will provide you with details of the drugs and the treatment plan. They will also discuss the option of your child entering a clinical trial if one is currently available. Burkitt lymphoma and diffuse large B-cell lymphoma (DLBCL) If your child has one of these types of lymphoma their treatment will be several courses of fairly intensive chemotherapy, including intrathecal chemotherapy. The exact number of courses of treatment will depend on the stage of your child’s lymphoma and how well it responds to treatment. Lymphoblastic lymphoma (T-LBL) If your child has this type of lymphoma, they are likely to receive a course of treatment similar to that used for children with acute lymphoblastic leukaemia. Doctors know from previous research that this is the best way to treat this type of lymphoma. The course of treatment usually lasts for 2 years, with intensive blocks of treatment given over the first 6–9 months, followed by a less intensive ‘maintenance therapy’ for the remainder. Nearly all the therapy is given as an outpatient although hospital admission is occasionally required. Most children will manage to return to school during some of the intensive phases and during all the maintenance therapy. Anaplastic large cell lymphoma (ALCL) The current treatment for this lymphoma involves six courses of chemotherapy after a short initial (pre-phase) course. What side effects is my child likely to have? Because chemotherapy drugs work by killing any cells that are dividing, they affect normal cells as well as cancerous cells. It is this damage to normal cells that causes many of the side effects. The normal cells in the body that are dividing include those in the bone marrow, gut and hair follicles. Most side effects are only short term but some can be longer lasting. Some side effects (known as late effects) may only become apparent in the future. Your specialist will give you information on all the drugs your child will be receiving. There are a number of general side effects that can occur with most chemotherapy drugs. Certain side effects may be specific to some drugs only and your child’s specialist will give you advice about these. The following are some of the more common side effects of chemotherapy. Do discuss with your hospital team if you have concerns about side effects not mentioned here. Non-Hodgkin lymphoma in children LYM0076/NHLinChild/2013v2 7/16 Nausea and vomiting Your child may feel sick for about 24–48 hours after receiving a course of intravenous chemotherapy. They will be given anti-sickness medicine before and during their treatment to help prevent this. If sickness continues to be a problem other antisickness medicines can be tried to help control vomiting. Some children feel sick because of worry before their treatment but feel better as soon as the treatment is over. Let the team looking after your child know if this is a problem, as other medicines or help from a psychologist may be useful. Hair loss Many of the chemotherapy drugs used can lead to a temporary loss of hair. The hair will grow back again, and in some cases it will be thicker, within a few months of stopping intensive treatment. The hospital can arrange for a wig to be provided (sometimes privately) until the hair grows back. Some children prefer to wear hats or scarves. Loss of hair can be distressing and it is best to help your child decide what they want to do about their hair loss. Sore mouth and throat Some of the chemotherapy drugs can make the lining of the mouth and gut very sore. Your child may be given mouthwashes to use on a regular basis as it is important to keep the mouth as clean as possible. Regular toothbrushing with a soft brush is important too. The doctors may also prescribe preventative agents during your child’s chemotherapy to protect the lining of their mouth. Painkillers can be given if a sore mouth is causing particular problems. Weight gain or loss Because chemotherapy may damage the lining of the gut and make your child feel sick, your child may not eat well and could lose weight. The hospital team including the dietitian will give you advice on how best to feed your child. If your child’s weight falls too much, they may be fed through a tube passed through the nose into the stomach – known as a nasogastric (NG) tube – or fed intravenously through their central line – known as total parenteral nutrition (TPN). Keeping your child well nourished during treatment is important as it aids recovery. Should you want to give your child any unusual foods or herbal remedies, do discuss this with the team first. Some herbal remedies contain moulds or fungus that would be dangerous for your child. Some drugs such as steroids can cause a marked increase in appetite. These are not the same as ‘anabolic’ steroids sometimes used by bodybuilders. The steroids used in lymphoma treatment could make your child gain weight rapidly, develop a rounded, moon-like face or weaken the muscles in their legs. These changes will disappear gradually when treatment is completed. Non-Hodgkin lymphoma in children LYM0076/NHLinChild/2013v2 8/16 Effects on the blood and risk of infection Chemotherapy particularly affects the cells of the bone marrow. The bone marrow produces the body’s blood cells: ● white blood cells, which fight infections ● platelets, which help prevent bleeding ● red blood cells, which carry oxygen. Chemotherapy briefly stops the bone marrow working, which slows the growth of normal blood cells so fewer blood cells are made. For this reason your child’s blood count will usually be checked at each hospital visit. A blood count can be taken from the central line or is sometimes done by pricking a finger to obtain a drop of blood. Treatment may need to be delayed for a few days if the blood count hasn’t recovered from the last chemotherapy and is still too low. One important type of white blood cell is called a neutrophil. If your child has a low number of neutrophils, the doctors and nurses will tell you that your child is neutropenic. Being neutropenic means that your child is at risk of severe bacterial infections. Your hospital team will give you advice on some of the things you can do to limit the risk of infections. They will also tell you what symptoms to look out for and how to get in touch with them immediately if you are worried. Measles and chickenpox can be particularly serious for children who have no immunity to these infections and who are also having chemotherapy. The doctors will usually test your child’s blood at the start of treatment to check whether they are immune to these infections. If they are immune, there is little risk of re-infection. If not, you should inform your hospital team immediately if your child comes into contact with either of these infections. The team may need to arrange treatment to lower the risks for your child. They will also want to avoid contact between your child and other children who are at risk. A lack of red blood cells is known as anaemia. This may make your child more tired or short of breath. Occasionally it may be necessary for your child to receive a blood transfusion. Low numbers of platelets may make your child more likely to bruise or bleed, for example they may get nosebleeds. If your child starts bleeding, they may be given a platelet transfusion to help stop the bleeding. For further information about neutropenia, anaemia or low platelets please ring our helpline (0808 808 5555). Fertility Fertility, meaning the ability to have children in the future, can be reduced in some people who have undergone treatment for lymphoma. The newer drug regimens mean this is becoming less of a problem in children treated for lymphoma. Your child’s doctors should discuss with you – and your child, depending on their age – the risks Non-Hodgkin lymphoma in children LYM0076/NHLinChild/2013v2 9/16 of infertility following the treatment that is being planned. Post-pubertal boys will be offered sperm collection and storage where possible. Many children who have had treatment for lymphoma have gone on to have children of their own. When your child grows up, they will be able to have sex in just the same way as other children who have not had lymphoma or lymphoma treatments. As they become sexually active, it is therefore important that they take contraceptive precautions in order to avoid unplanned pregnancy. Risk of other cancers There is evidence that some chemotherapy drugs (and radiotherapy, although this is rarely used to treat children with NHL) can lead to a slightly higher risk of developing another cancer later in life. Your child will need to be aware of this in the future. They should know to always see a doctor promptly for any concerns about their health. How can I best look after my child at this time? The following section looks at some of the practical issues that often concern parents looking after children with lymphoma. Your hospital team will be able to give you more specific advice on these topics. Our helpline team are always happy to discuss anything that is concerning you too (0808 808 5555). Where will my child be treated? In the UK most children with NHL are referred to a paediatric oncologist or haematologist working in a specialist centre called a Principal Treatment Centre (PTC). There are only about 20 specialist paediatric oncology centres in the UK and Ireland. Often some of the treatment can be given at your local hospital, under the guidance of the PTC. This sort of care is known as ‘shared care’. Your specialist centre will give you all the information you require about your child’s treatment. They will also introduce you to all the members of the ‘multidisciplinary’ team who can help you, your family and your child through their therapy and beyond. Doctors working in paediatric oncology and haematology are members of the Children’s Cancer and Leukaemia Group (CCLG). This organisation has been running treatment trials for children with cancer since 1977. They have also developed protocols (treatment plans) that are used by all the centres that treat NHL in children. Children treated for NHL in the UK may be offered the chance to take part in a national or international treatment study or clinical trial. Because childhood NHL is a relatively rare disease, it is important that trials involve as many children as possible. Trials now often involve children from the UK, Europe and the rest of the world. Over the last few years such collaboration has led to improved outcomes for children with NHL. The challenge for future trials is to find treatments that reduce the risk of side effects, particularly late effects. But these new treatments must still be just as good at curing lymphoma in children. Taking part in any trial is entirely voluntary, so if you prefer you can opt for your child to receive the current ‘gold-standard’ therapy. This is the treatment that doctors think is the best from previous clinical trials. Non-Hodgkin lymphoma in children LYM0076/NHLinChild/2013v2 10/16 Hospital and ward life Once a diagnosis has been confirmed, your child’s doctors will probably wish to start treatment as soon as possible. You will have the chance to talk things through with the doctors and nurses before treatment starts. They will give you information about your child’s particular treatment and what side effects you might expect them to have. You should also be told about how things are arranged in the hospital and what support is available. This may include help from a number of different staff such as social workers, outreach nurses and play specialists, who may be able to visit you at home. Often, treatment for NHL will mean that your child needs to spend some time in hospital. Most hospitals encourage one parent to stay with their child and often accommodation can be arranged for you nearby. Relatives, including any brothers and sisters, will also be welcome to visit. But any potential visitors with colds, flu or other infectious illnesses should be asked not to visit your child. What should I tell my child? Telling your child that they have cancer can be a difficult thing to do. You may be tempted to withhold information that seems too frightening. Experts working in this field generally agree it is best to be honest with your child. Most also advise that parents should use the words ‘cancer’ and ‘lymphoma’ openly. Your child will know that something is wrong because of visits to the doctor and the various tests that they have had. What you tell your child will depend on your child’s age and understanding. Young children between the ages of 2 and 7 will vary in how much they understand of illness, particularly their own. It is important that they understand that the lymphoma has not been caused by anything they have done wrong and they are not being punished for anything. They need simple, clear explanations about their treatment. There are publications designed for this age group that can be used to explain how treatment works. Play specialists on the wards are trained to help parents explain things to their children (including the affected child’s siblings), often through pictures, paintings and play. Older children aged 7 to 12, are less likely to think their illness has been caused by something they did wrong. At this age children can understand that they need treatment to get better and that they need to cooperate with the doctors and nurses. You can explain that the treatment will help the ‘good’ cells to do their job properly and get rid of the ‘bad’ or ‘out-of-control’ cells. Sometimes it is difficult for them to accept this, especially if they weren’t too unwell to start with. We produce a booklet that is designed to be read to, or by, children with lymphoma; please ring our helpline (0808 808 5555) if you would like a copy. Teenagers are able to understand things that are outside their personal experience and can cope with more complicated explanations. Teenagers may sometimes appear to be coping well and get very involved in understanding their treatment. At other times they may become withdrawn, and need a lot of family support. Sometimes they Non-Hodgkin lymphoma in children LYM0076/NHLinChild/2013v2 11/16 seek support from their peers rather than their parents and often require their own space. Your child may also wish to – and can – discuss the progress of their treatment with the doctors on their own. They might feel embarrassed and self-conscious about their treatment and may lose self-esteem. They may worry about dealing with both the physical and emotional effects of their treatment. Parents need to be sensitive to the varying feelings and moods of their teenagers. It is hard enough being a teenager without having to cope with having treatment for lymphoma. Some young people will be more outgoing and confident than others, but they will all have good days and bad days. Finally, if you do not know the answer to your child’s question you should say so, and ask your child’s doctor or nurse to help. Your child will lose confidence in you if you avoid the subject or give incorrect information. Be honest, if you don’t know what to say or how to say it, ask the team for advice. We produce a booklet that is designed to be read by young people with lymphoma; please ring our helpline (0808 808 5555) if you would like a copy. What happens when we go home? If your child is young, you may find that they behave more childishly when they are ill. Older children may become aggressive or jealous of their brothers and sisters. Whatever your child’s age, maintaining a routine that is as familiar as possible will help your child to adjust and cope. What happens when my child goes back to school? It is important for your child to continue normal schooling and their social life as much as possible during treatment. Lessons are usually available on the hospital wards for those who are well enough to participate. The hospital teacher, social worker or outreach nurse can arrange a visit to your child’s school. If necessary home tuition can be arranged. Before your child returns to school the head and class teacher should be made aware of your child’s illness and any side effects of their treatment. Outreach nurses from your unit will help liaise with schools on your behalf. Warn the teacher of the risk of infection to your child and ask that they inform you if there is serious illness in the school. The risks from measles and chickenpox can continue for 6 months after stopping treatment. It will be helpful if the teacher can prepare the class for your child’s return too. The teacher should explain that children get better after lymphoma and it isn’t like cancer sometimes is in older people. The class should be aware of any hair loss or weight change that may have occurred. It should be explained that these changes are just for now and will gradually go away. Young children can be very insensitive and thoughtless to anyone who is different and find it difficult to cope with a change in the appearance of a friend. It may help to explain to your child that not everyone understands as much about cancer as they do. Non-Hodgkin lymphoma in children LYM0076/NHLinChild/2013v2 12/16 What happens when treatment is finished? Once your child has finished treatment, the doctors will usually arrange some repeat scans and other tests to make sure all is well. After that, your child will be seen regularly in the clinic for several years. In the first instance, visits are usually every couple of months and scans or X-rays may be required at the same time. Initially the doctors will be checking mainly to make sure that the lymphoma has not come back. Less frequent reviews are needed as time goes by and scans or X-rays will stop. After a few years the doctors will be checking mainly that your child is growing and developing well. Usually, the visits end up being just once a year until your child is safely through puberty. Taking care of yourself When you first learn that your child has NHL your reaction will probably be a combination of shock, fear, numbness and disbelief. Some parents find it very difficult to take it all in at the first visit. Sometimes it is simply a relief to find out at last what is wrong with their child’s health. You might feel very angry and wonder why this has happened to your family – these feelings are very common. It is very important you know that there is nothing you could have done to prevent your child from developing NHL. The treatments offered throughout the UK are pretty much identical as most units offer the same treatment. However, if you are concerned or have any worries about the treatment, you can ask for a second opinion. Most specialists will be supportive of this. If you would like to seek a second opinion you can discuss this with your child’s hospital specialist or GP. Having a seriously ill child can put a great strain on a relationship. It will help if you and your partner can talk together about your child’s illness so that misunderstandings do not arise. It is important that you continue to make time for yourself, look after yourself and spend time with your partner doing some of the things that you normally enjoy. This will help to create a sense of balance in your life and will enable you to recharge your batteries. It will help you to find the strength to continue to cope with both your child and your family during this very demanding period in your life. Your child needs your help and support and you can only give them this if you are well yourself. Many children’s cancer centres have parents’ groups where you can meet other parents of children with cancer and talk about your fears and anxieties. Our helpline staff will always be happy to talk about anything that is worrying you. They might also be able to put you in touch with someone who has had similar experiences to your own. You might like to see what people are saying on our website forums too. A final note The treatment of NHL has changed dramatically over the years: it is now a condition that can usually be cured. Children with NHL can grow up normally, continue their schooling, go on to higher education if they want, have normal jobs and relationships, and enjoy a normal life. It’s just these next few months that may be difficult … but remember, there are lots of people around who can help. Non-Hodgkin lymphoma in children LYM0076/NHLinChild/2013v2 13/16 Acknowledgement We would like to thank all of our expert reviewers and the many people affected by lymphoma who help us in the preparation of our information. In particular we are grateful to Dr Georgina Hall for her assistance in the preparation of the latest version of this article. Dr Hall is consultant paediatric haematologist at John Radcliffe Hospital, Oxford. Useful sources of further information and support CLIC Sargent Provides support and information to children with cancer and their families, including accommodation near hospitals, grants and benefit advice, and free breaks for families in need. HoratioHouse 77–85 Fulham Palace Road London W6 8JA 0300 330 0803  via website www.clicsargent.org.uk Teenage Cancer Trust (TCT) Provides specialist units to treat teenagers and young adults with cancer, offers a support network to teenagers affected by cancer, funds specialist nursing posts and research into teenage cancer. 3rd Floor 93 Newman Street London W1T 3EZ 020 7612 0370  via website www.teenagecancertrust.org Children’s Cancer and Leukaemia Group (CCLG) CCLG, the national association of healthcare professionals involved in the treatment of children with cancer, provides information for patients and families. University of Leicester 3rd floor, Hearts of Oak House 9 Princess Road West Leicester LE1 6TH  0116 249 4460 [email protected] or via website www.cclg.org.uk Childhood Cancer Parents Alliance (CCPA) Formerly known as NACCPO; this is a group of parent-run organisations that work together to support children and young adults with cancer. SDVS, 131–141 North Walls Stafford ST16 3AD 01785 220637 or 07982 426142 [email protected] www.childcancerparents.org Non-Hodgkin lymphoma in children LYM0076/NHLinChild/2013v2 14/16 Make-A-Wish Foundation UK Grants wishes to children and young people (aged 3 to 17) who are fighting lifethreatening illnesses. 329–331 London Road Camberley Surrey GU15 3HQ 01276 405060 [email protected] www.make-a-wish.org.uk Starlight Children’s Foundation Aims to brighten the lives of seriously ill children (aged 4 to 18) by granting wishes and providing in-hospital entertainment for children to take their minds off their illness. Starlight Children’s Foundation Macmillan House Paddington Station London W2 1HD  020 7262 2881 via website www.starlight.org.uk Youth Cancer Trust Provides free activity-based holidays for young people (aged 14 to 30) who have, or have had, cancer. Tracy Ann House 5 Studland Road Alum Chine Bournemouth BH4 8HZ 01202 763591 [email protected] www.youthcancertrust.org Selected references The full list of references is available on request. Please contact us via email ([email protected]) or telephone 01296 619409 if you would like a copy. Cancer Research UK. Non-Hodgkin lymphoma – UK incidence statistics 2009. Available at: info.cancerresearchuk.org/cancerstats/types/nhl/ (accessed Nov 2012). Miles RR, et al. Risk factors and treatment of childhood and adolescent Burkitt lymphoma/leukaemia. British Journal of Haematology, 2012. 156: 730–743. Okebe JU, et al. Therapeutic interventions for Burkitt lymphoma in children (Review). Cochrane Database of Systematic Reviews, 2011. CD005198. Reiter A, Klapper W. Recent advances in the understanding and management of diffuse large B-cell lymphoma in children. British Journal of Haematology, 2008. 142: 329–347. Non-Hodgkin lymphoma in children LYM0076/NHLinChild/2013v2 15/16 How we can help you We provide: ● a free helpline providing information and emotional support  0808 808 5555 (9am–6pm Mondays–Thursdays; 9am–5pm Fridays) or  [email protected] ● free information sheets and booklets about lymphoma ● a website with forums – www.lymphomas.org.uk ● ● the opportunity to be put in touch with others affected by lymphoma through our buddy scheme a nationwide network of lymphoma support groups. How you can help us We continually strive to improve our information resources for people affected by lymphoma and we would be interested in any feedback you might have on this article. Please visit www.lymphomas.org.uk/feedback or email [email protected] if you have any comments. Alternatively please phone our helpline on 0808 808 5555. We make every effort to ensure that the information we provide is accurate but it should not be relied upon to reflect the current state of medical research, which is constantly changing. If you are concerned about your health, you should consult your doctor. The Lymphoma Association cannot accept liability for any loss or damage resulting from any inaccuracy in this information or third party information such as information on websites which we link to. Please see our website (www.lymphomas.org.uk) for more information about how we produce our information. © Lymphoma Association PO Box 386, Aylesbury, Bucks, HP20 2GA Registered charity no. 1068395 Updated: March 2013 Next planned review: 2015 Non-Hodgkin lymphoma in children LYM0076/NHLinChild/2013v2 16/16