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Introduction We hope that this guide will help you to help your child on the long road to recovery. Now that you have been told that your child has cancer. This booklet attempts to give you some of the answers but you will need to talk about in detail with the doctors and nurses in the hospital. They may also have more detailed information to give you about the specific type of cancer which your child has. Children’s cancers Children's cancers are rare. Only 1 in every 600 children under 15 years of age develops a cancer, and these are quite different from cancers affecting adults. They tend to occur in different parts of the body, they look different under the microscope and they respond differently to treatment. Cure rates for children are much higher than for most adult cancers and over 60% of all children can now be completely cured. What causes cancer? Nobody knows the cause of cancer, although there are many theories. A great deal of research is currently underway studying a number of possible causes. In general cancer occurs when cells in the body become out of control and multiply. They stop working properly and as their numbers increase they form a lump or tumour. When cancer cells break away and spread to other parts of the body they may produce secondary tumours known as metastases. Cancers are not infectious. It is exceptionally rare for a second child in a family to develop cancer. Parents often worry that their child has a cancer because of something they did or did not do. This is not the case and parents should not feel guilty or take any sort of blame for their child developing cancer. Although the total number of children developing cancer has changed little in the last 40 years, the prospects for many have improved dramatically with advances in treatment Ten Year Survival Rates With improvement in knowledge about cancers and evolution of more effective multi-modality treatment protocols, the outcome of pediatric cancers has improved markedly. International data shows that seven in 10 children with cancer are now cured, compared with fewer than three in 10 in 1962 - 1966. Diagnosis, Staging and Tests Before the specialists decide on the best way to treat your child, various tests will be done to diagnose and 'stage' the cancer. They also assess your child's general health, as this may affect how treatment is planned. The tests enable the specialist: • To be quite sure that the correct cancer has been diagnosed. Sometimes it is very difficult to be certain of the exact type of cancer, and for this reason further opinions from doctors in other parts of the country may be sought. You can be confident that your own doctor has the support of other experts around the country and abroad.

• To find out exactly where the tumour is and whether it has spread to other parts of the body. This is called staging. The tests involved may delay the start of treatment for a few days, but without this information the right treatment cannot be chosen. • Usually starting treatment is not a matter of urgency. It is much more important to get all the necessary information together and so ensure that the right treatment is given. Each different test is now explained. Some of these tests are repeated during the course of treatment to study progress and check for any side effects of treatment. Biopsy If it is suspected that a tumour is malignant (cancer), the surgeon may remove part of it, either by inserting a special needle through the skin (needle biopsy) or by doing a small operation (open biopsy). The specimen obtained is examined by the histopathologist (person who studies body tissues) who can tell whether or not it is malignant and exactly what type of tumour it is. It usually takes several days to get the results of biopsies. Sometimes the surgeon may be able to remove the whole tumour rather than just taking a biopsy. Blood tests Blood tests are done at the time of diagnosis and often during the following years to check the effects of treatment. Blood samples are sent to a number of laboratories for different tests. In the haematology department the blood cells are counted and this is one of the main ways in which the side effects of treatment are monitored. Microbiologists (people who study germs) may check the blood to see whether there is infection and this is called a blood culture. The blood may also be examined in the chemistry laboratory so that certain salts and chemicals in it can be measured, which gives information about kidney and liver function for example. Blood samples may also be used to cross-match blood in case a transfusion is necessary during treatment. Bone marrow aspirate In several cancers, the bone marrow may be affected. To tell whether or not it is affected, a needle is put into the bone of the hip and some of the marrow is drawn out and taken for examination in the laboratory. This test is usually done under a general anaesthetic or heavy sedation, to avoid any discomfort to your child. Older children may prefer local anaesthetic. Lumbar puncture In some conditions such as leukaemia (cancer of the white blood cells) or lymphoma (cancer of the lymph system), malignant cells can pass into the cerebrospinal fluid (which surrounds the brain and the spinal cord). To find out whether this has occurred, a few drops of the fluid are removed by inserting a fine needle into the back between two vertebral bones in the lumbar (lower) spine. A

lumbar puncture is usually done under an anaesthetic and sometimes drugs are injected into the fluid at the same time as part of the treatment. X-rays There are various ways of examining what is happening in different parts of the body. An ordinary x-ray can show whether there is a tumour in the chest, abdomen or bones as tumour tissue looks different on x-ray from ordinary tissue. Sometimes special dyes are injected into one of the child's blood vessels to get an even better picture. Ultrasound scan Ultrasound waves are sound waves that the human ear cannot hear. A special machine directs the waves at a certain part of the body. The sound waves are then converted into a picture which helps to tell healthy tissue from a tumour. Ultrasound scans are completely safe and are used particularly to look at the abdomen and heart. Bone scan Small doses of a radioactive substance can be injected into a vein to show up abnormal areas in the bones. If your child has a bone tumour or a tumour which has spread to, a scan will show how much of the bone is affected. CT scan A CT (computerised tomography) scan is a method of taking pictures of soft body tissue. Pictures of the part of the body to be scanned are taken from different angles by a camera in a rotating drum. A computer integrates the pictures to reveal any tumours. Scanning is painless but your child may be given a sedative or general anaesthetic to ensure that he lies still. MRI (magnetic resonance imaging) Magnetic waves are altered in different ways as they pass through the body depending on the type of cell. MRI scanning builds up a series of cross section pictures of the body. The process is harmless and painless, but the machine is noisy and looks frightening, as the patient has to lie in a tunnel. Your child may be given a sedative or general anaesthetic to make sure that he lies still.

Central Lines Children undergoing treatment for cancer will often require repeated blood tests and insertion of needles to enable chemotherapy and other drug treatment to be given. Even though doctors and nurses are very experienced at taking blood and inserting needles it can sometimes hurt and is not a pleasant experience for the child. Many children therefore have a special device called a central line, which is used to take samples of blood and to administer chemotherapy and other drugs (such as antibiotics). It can also be used to give blood or platelet transfusions. A central line is a fine plastic tube, which is inserted into a vein in the child's chest. This procedure is carried out under a general anaesthetic. When inserting the line, the surgeon makes a small cut into a vein in the neck and feeds the line down towards the heart. The other end is then tunneled under the skin to emerge on the front of the chest as an external line. A removable bung is placed on the end of the line, which allows sampling of blood or injection of drugs. Although inserted in a similar fashion, some lines do not come out through the skin. Instead, the line ends in a reservoir or 'port' that is buried under the skin. The port acts like the bung at the end of the external line, but remains inside the body until the line is removed. As nothing comes out through the skin ports can be easier to look after but they still need to be accessed with a needle. Central lines can remain in place for many months and are a very good way of avoiding the discomfort of repeated injections. However, there are three main potential problems: falling out, blockage and infection. Sometimes it is obvious why a line has fallen out, e.g. the toddler who runs about while still attached to a drip stand. Other times it is not so clear such as when a child wakes up and the line is next to them in bed. Fortunately, lines that fall out do not normally lead to much blood loss. Blood may ooze down the tunnel under the skin where the line was but because this is not a proper vein, the blood clots and seals it off very quickly. Occasionally lines may appear to be blocked. This can be caused by the tip of the line lying at an odd angle against the wall of the vein, or the line becoming clogged even if it has been flushed regularly. If this happens things can be done to relieve the blockage so that the line can be used again. If the blockage is not successfully opened the line may need to be removed. Despite being carefully looked after, many lines become infected. Antibiotics are given but sometimes the line may need to be removed. Before your child is discharged home the nurses will show you how to care for the central line. Make sure that you feel confident about this and don't be afraid to ask any questions. If you do have any problems contact the hospital staff who will be happy to offer advice. 1. Central line is inserted into the chest. 2. The line is tunnelled under the skin. 3. It comes out here.

Staff Involved In the Care of Your Child Many people will be involved in the care of your child whilst in hospital. Some of them are described below. Although you will not meet all of them, you will probably come into contact with many of them including the staff in the hospital outpatients department. Pediatric oncologist Pediatric oncologists are doctors who have chosen to specialise in children's cancer. Ward Doctor In the hospital you will meet resident doctors. Most of the tests and treatment are done by these doctors under the supervision of the senior doctors. Nurse The Nurse Manager is in charge of the ward. Team leaders, staff nurses, trainee nurses and nursing assistants work under the Nurse Manager's direction. Surgeon Surgeons carry out operations. They may take a biopsy (remove a piece of tissue from the tumour for examination under the microscope) and / or remove the whole tumour. They also put in central lines. Radiotherapist Radiotherapists are doctors who have specialised in radiation treatment. If your child needs radiotherapy it will be planned by a radiotherapist and given by radiographers. Radiologist Radiologists use x-rays and other scans to get pictures of the body which they can then interpret. Psychologist A psychologist may be able to help children who have difficulties with behavior or learning during their treatment. Nutritionist Nutritionist looks after the nutritional needs of your child during treatment. Pharmacist The pharmacist is responsible for preparing and dispensing the drugs your child receives. They are based in the hospital pharmacy department and may visit the ward.

Play therapist The Play therapists is trained to help children cope with the experience of being ill and in hospital by using play. Pathologist The pathologist specialises in analysing specimens, such as samples of tissue taken at biopsy. Treatment

At present, there are three main ways of treating cancer. The tumour can be removed by operation (surgery); cancer cells can be killed by radiation (radiotherapy), or they can be killed with drugs (chemotherapy). Your doctor will discuss with you which treatment(s) should be used for your child. Surgery Surgery plays a very important role in the treatment of tumours. Depending on the size and position of the tumour in the body an operation to remove it may be the first part of treatment. More often though a biopsy of the tumour is taken first to make the diagnosis. (A biopsy involves taking a piece of tissue from the tumour for analysis in the laboratory). Sometimes, an operation may be dangerous or cause too much damage to tissue because of the size and position of the tumour. In these cases chemotherapy or radiotherapy may be given before an operation to shrink the tumour and make surgery easier. Radiotherapy Radiotherapy uses high energy x-rays which destroy cancer cells. It is normally used to treat one (local) area where the tumour was found. Radiotherapy is given each day Monday to Friday with weekends off. How long a course of treatment lasts is variable, but it may be anything up to six weeks. Before treatment begins it is necessary to undergo what is known as 'planning'. This allows the radiographer to work out the exact position in which to place the child, and ensures that treatment is given to exactly the right place each time. Radiotherapy is painless and usually only takes a few minutes each day. During the treatment the child must lie perfectly still to ensure precise delivery of the radiotherapy. Sometimes it is necessary to give a sedative to help the child lie still and occasionally an anaesthetic is needed. Radiotherapy is a very effective treatment against cancer cells but it can cause some damage to healthy cells next to the area being treated. The immediate side effects of radiation are usually very mild. The skin may become sore as if it were sun burnt. Other potential immediate side effects depend upon the part of the body being treated. For example radiotherapy to the stomach and/or the pelvic area can cause problems such as diarrhoea, nausea and loss of appetite. It is important to remember that these side effects, although troublesome, are temporary and can be treated. Radiotherapy can cause some longer term side effects which will not be instantly apparent. As time goes by the effect of radiation to any growing tissues may become more noticeable. In particular, radiation to the brain can have important 9 effects on growth and development. Your doctor will be able to discuss these with you in more detail. Chemotherapy Chemotherapy can be given in different ways, either by mouth or intravenously (by injection into a vein).

There are many technical terms used to describe how the drugs are given and you will see these on drug charts and on treatment plans (protocols). The common terms are shown in the following table:
How Given Into a vein By mouth Into muscle Under skin surface By lumbar puncture Medical Term Used Intravenous Oral (per mouth) Intramuscular Subcutaneous Intrathecal Shortened Term IV PO or O IM SC IT

Whichever way the drugs are given, they are absorbed into the blood and carried around the body so they can reach all the cancer cells. This makes chemotherapy particularly useful when cancers have spread. Chemotherapy has to be carefully planned so that it progressively destroys the cancer during the course of treatment, but not the normal cells and tissues. It may for example be given intensively in high doses over a short period, or it may be given in lower doses over a longer period. When treatment is given by intravenous injection the drugs are usually diluted into a bag of liquid such as saline (salt water) and given through a 'drip' into a vein in the arm. In this situation a fine tube is inserted into the vein and taped securely to the arm. The tube is called a cannula. The other way of giving intravenous chemotherapy is through a central line. This is a common way of giving chemotherapy to children. Most of the drugs have significant and potentially unpleasant short-term side effects, such as hair loss and nausea and vomiting. There are, however, effective ways of controlling some of these problems and reducing the distress they may cause. The main areas of the body that may be affected by chemotherapy are where normal cells rapidly divide and grow: the mouth, digestive system, skin, hair, and bone marrow. Further information about the potential side effects of cancer treatment can be found at the end of this booklet. It is important to be aware that while most side effects are temporary, some treatments may have longer term effects. These may not always be obvious at the time and careful follow up to detect any of these long term effects is needed after treatment has finished. Individual drugs and their side effects are described further on. Side Effects of Treatment Since chemotherapy and radiotherapy work by killing dividing cells, they will affect normally dividing cells as well as malignant (cancerous) ones. The normal cells which divide most rapidly in the body are those in the bone marrow, the gut and the hair follicles. These are the areas where the immediate side effects of treatment are seen. The following are the main temporary side effects which may be experienced as a result of treatment for cancer. Bone marrow suppression (Low Blood Count)

Blood cells are made in the bone marrow (the spongy material which fills the bones). There are red cells, which carry oxygen around the body, platelets that help the blood to clot normally and white cells which fight infection. Almost all chemotherapy as well as some radiotherapy causes bone marrow suppression. This means that the bone marrow cannot make the usual number of cells and a blood or platelet transfusion may be necessary. When the white cell count is low, infections are quite common. Your child will have regular blood tests (known as blood counts) so that the timing and dose of treatment can be changed as necessary. Following a cycle of chemotherapy, the blood count usually takes 3 or 4 weeks to recover. Risk of infection All through chemotherapy your child will be more at risk of infection. When the white cell count is low your child may absorb germs from his own skin or gut. In spite of this he will be able to cope with most minor infections perfectly normally. However, some infections that usually cause little trouble may prove more serious. Measles and chicken pox can be particularly serious if your child is not immune. If your child is exposed to either of these, let the doctor or nurse know straight away so that a protective injection or medication can be given. If your child develops one of these infections let the hospital know immediately so that appropriate treatment can be given. If your child is generally unwell or has a fever, especially when you know the blood count is low, seek advice from the hospital. Your child will probably need to be admitted for intravenous antibiotics until the hospital can be sure about the type of infection. Hair loss Many of the drugs used in chemotherapy make your child's hair fall out temporarily. It always grows again quite normally within a few months of stopping treatment. Radiotherapy to the brain also causes hair loss and sometimes there may be permanent thinning of the hair at sites where a very high dose has been given. Loss of appetite and weight Chemotherapy may make your child feel sick and directly affect the lining of his gut so that he will not want to eat and will lose weight. Modern anti-sickness drugs are now very effective. Your child's weight will be checked regularly. If he is losing too much weight he may need to be fed through a naso-gastric tube (a tube passed through the nose and into the stomach) or intravenously through the central line. The weight usually returns to normal when treatment is over. Drowsiness About 6 weeks after radiation to his head, your child may feel sleepy for a few days but this will soon pass. Longer-Term Side Effects After treatment for cancer, most children will not have any serious long term problems. Attending the follow up clinic is very important to check for any problems that may arise. Puberty and fertility

Certain treatments may affect puberty and fertility. These are: 1. Radiotherapy to the brain 2. Radiotherapy to the lower abdomen or pelvis, including the ovaries and testicles 3. Total Body Irradiation (TBI) usually done with a bone marrow transplant. 4. Certain chemotherapy drugs. 5. Surgery to the ovaries, womb or testicles. Your child will be watched carefully at the follow-up clinic for signs of puberty. If this appears to be delayed hormone replacement therapy may be needed so that puberty can occur. It is difficult to know whether these treatments have affected fertility until your child is old enough for tests to be carried out. This will be discussed at follow up clinics. Growth and development Radiotherapy can have important effects on growth and development. It may affect growing bones: for example, if radiotherapy is given to the spine, the child may not grow quite as tall as expected. If it is directed at a leg, then that leg may be shorter than the other. Radiotherapy to the brain may affect production of growth hormone in the pituitary gland. The pituitary gland helps regulate growth and development from childhood to adulthood. It does this by producing hormones. If your child does not produce enough growth hormone from the pituitary gland he will not grow normally and may need treatment with synthetic growth hormone to help growth. This hormone is extremely expensive and currently not easily available in Pakistan.

At the follow up clinic your child will be regularly weighed and measured. If growth is not satisfactory tests will be done to see if growth hormone replacement is required. Heart and lungs Certain treatments can have effects on the heart and lungs some time after treatment is completed. These treatments include some chemotherapy drugs and radiotherapy. If your child is at risk of these problems they will be regularly followed up with echocardiograms (heart ultrasound) and sometimes it is necessary to perform special tests on the lungs (lung function tests). Kidney problems These can occur after some types of treatment for childhood cancer but fortunately they are not usually severe. Removal of one kidney as part of treatment does not usually cause any problems because the remaining kidney can make up for the one removed. Certain anti-cancer drugs can cause problems for the kidneys. If your child has these drugs your doctor will organise checks on their kidneys from time to time. Patients whose kidneys are working satisfactorily at the end of treatment should not develop problems in the future. Intellectual development and education Following treatment most children are able to continue in normal education and their intellectual development is not affected. However, some children, especially children treated for brain tumours, may develop learning difficulties and may require special help at school. The extent of these difficulties will depend on the age of your child, when they were treated, and the treatment they received. Second cancer A very small number of children cured of cancer can go on to develop another, different cancer later on in life. There are two main reasons for this. Firstly, although rare, some families have an inherited risk factor for cancer. Secondly, some anti-cancer treatments can themselves increase the risk of other cancers. Your child's doctor will be able to discuss any concerns you may have about this in more detail. Drugs and Their Possible Side Effects How individuals are affected by chemotherapy will vary. This is a list of possible side effects. Your doctor will discuss with you those which are likely to occur during your child's treatment. How individuals are affected by chemotherapy will vary. This is a list of possible side effects. Your doctor will discuss with you those which are likely to occur during your child's treatment.
Drug Actinomycin (intravenous) Asparaginase (subcutaneous; intramuscular) Temporary side effects Longer term effects for which children will be monitored* Bone marrow suppression, hair loss, nausea and vomiting, occasional liver disturbance Allergic reaction

Fever, hair loss, nausea and tiredness, Liver damage, lung damage shortness of breath, sore mouth and skin Carboplatin (intravenous) Bone marrow suppression, nausea and vomiting Chlorambucil (oral) Bone marrow suppression Risk of reduced fertility Bone marrow suppression, nausea and Cisplatinum (intravenous) Damage to kidneys and hearing vomiting, damage to kidneys and hearing Cyclophospamide and Bone marrow suppression, hair loss, bladder Damage to kidneys, risk of reduced Ifosfamide (intravenous) irritation, nausea and vomiting fertility Bone marrow suppression, diarrhoea, hair loss, nausea and Cytosine Arabinoside (Ara-C) (injection) vomiting Daunorubicin and Epirubicin Bone marrow suppression, nausea, hair Weakened heart muscle (intravenous) loss, sore mouth Doxorubicin Bone marrow Weakened heart (Adriamycin) (intravenous) suppression, hair loss, nausea and vomiting muscle Allergic reaction, bone marrow suppression, hair loss, nausea Etoposide ( VP 16) (intravenous; oral) and vomiting Mercaptopurine (oral) Bone marrow suppression, skin rashes Bone marrow suppression, diarrhoea, mouth ulcers, nausea and Metho trexate (intravenous; oral; intrathecal) vomiting, sensitivity to sunlight Bleomycin (intravenous) Prednisolone and Dexamethasone (oral; intravenous) Procarbazine (oral) Thioguanine (oral) Vincristine and Vinblastin (intravenous) Big appetite, fat cheeks, risk of infection, raised blood sugar Bone marrow suppression, nausea and vomiting Bone marrow suppression Constipation, hair loss, pain in the jaw, tingling fingers and weak ankles (occasionally)

Understanding Of Some Terms Alopecia Loss of hair Anaesthetic Drugs to put the patient to sleep (general anaesthetic) or to numb a part of the body (local anaesthetic) Benign Not cancerous although may be capable of causing problems Biopsy Small sample of body tissue Blood count The number of cells of different types in the blood Bone marrow The spongy material in the centre of the large bones of the body which makes blood cells; the factory of the blood Carcinogen A cancer causing agent Cardio- To do with the heart Catheter A thin flexible tube used to pass fluid into the body or to drain fluid from the body (for example, urinary catheter, central venous catheter [long line]) Cerebrospinal fluid (CSF) The fluid produced within the brain which surrounds the brain and spinal cord Chemotherapy Chemical drug treatment Chronic Long-standing or long-lasting Dysfunction Not working properly Endocrine To do with hormones

Excision Cutting out Genetic Condition caused by abnormal genes (may be inherited) Haematology The study of blood Histopathology The science or study of body tissues Hormone A substance made and secreted by a gland and carried in the bloodstream to parts of the body where it has a specific effect on the way the body works Immunology The science or study of the body's system for fighting infection Immunosuppressive Lowering the body's ability to fight infection Intravenous (iv) Into a vein Lymph Almost colorless liquid, part of the body's defence against infection, carried in a network of vessels Lymphocyte A white blood cell produced by a lymph gland, which fights infection Malignant/Cancerous. If a tumour is malignant it grows uncontrollably and can travel to other parts of the body Metastases Tumours that have come from a first (primary) tumour in another part of the body; also known as secondary tumours Morbidity The state of being diseased; ill effects Nausea Sickness Neuro- To do with the nerves or nervous system Neutropenic Low levels of neutrophils Neutrophils White blood cells which fight infection Oedema Swelling caused by fluid Oncology The study and treatment of cancer Opthalmology The study of the eyes Oral In the mouth Osteo- To do with the bones Paediatric To do with children Platelet Blood cell which helps to prevent bleeding Prognosis The expected outcome of a disease and its treatment Prosthesis An artificial replacement of, for example, a bone Pulmonary To do with the lungs Radiotherapy The use of x-rays to destroy cancer cells

Relapse The return of a disease after previous treatment Remission A period of good health when there is no detectable disease Renal To do with the kidneys Subcutaneous Under the skin Therapy Treatment Toxic mean Poisonous; for example, cytotoxic drugs poison cells Tumour An abnormal lump of tissue formed by a collection of cells. It may be benign or malignant