Types of Treatment - Women's and Children's HospitalMost children who have chemotherapy will receive a number of different drugs that work together to fight the cancer. Cancer treatment

Section 5 - Treatment - 1 -

Types of Treatment

There are three main types of treatment used for cancer. These are:

• Surgery

• Chemotherapy (drug treatment) and

• Radiotherapy (x-ray treatment)

Usually, two or all three types of treatment are used in a combined way, which requires very careful overall plan. Using this method, even very advanced tumours, which would have been quite untreatable, can be controlled or cured.

Surgery

Most children with a cancer lump (tumour) will require surgery in order to make a diagnosis. This operation is called a biopsy, which may involve an open operation, or sometimes a core of tumour tissue is removed with a thick needle under a general anaesthetic. The piece of tumour removed is then looked at in the laboratory to find out the exact tumour type. This is very important because different types of tumours require different forms of treatment.

Some tumours can be removed by surgery, but this treatment alone is rarely curative and usually needs to be combined with one or more forms of treatment. Sometimes an exploratory operation is undertaken with multiple samples taken from various sites to work out the extent of the tumour spread. A biopsy can be quite a small procedure, or it may be a big operation depending on the site. The time when the surgery is done will depend on the child’s treatment plan and on the tumour type and it is likely that your child will be nursed in the surgical area.

In some tumours, surgery is the first type of treatment used, but in others it may be delayed for weeks or months to allow drug therapy and/or radiation to shrink the tumour and allow for a curative operation. The timing and extent of the surgical procedure will depend on the site of the tumour in the body and the degree of spread.


Chemotherapy

What is chemotherapy?

Chemotherapy, or chemical therapy, is one form of cancer treatment that involves giving patients anti-cancer drugs. Most of these drugs are known as cytotoxic drugs, which literally means cell (cyto) killing (toxic). Most children who have chemotherapy will receive a number of different drugs that work together to fight the cancer.

Cancer treatment may include chemotherapy, radiotherapy or surgery, and in many cases a combination of these may be used. When chemotherapy is used in conjunction with other types of treatment, it is called adjuvant therapy.

How do the drugs work?

The body is made up of cells and these cells go through cycles of resting, growing and dividing. Different types of cells spend different amounts of time doing these tasks. Cells that grow and divide quickly are more susceptible to chemotherapy. It is during the process of growing and dividing that cytotoxic drugs get into cells and change their make-up so they cannot multiply. As chemotherapy affects cells that divide quickly, it can effect healthy cells too.

Different drugs act at different times of the cycle – some in the growing phase and others in the dividing phase – so for this reason a combination of two or more drugs is usually given.

Does chemotherapy have side effects?

Chemotherapy cannot tell the difference between good cells and bad cells, it simply effects all cells that divide rapidly. Damage to normal cells may lead to side effects.

The normal cells most often affected by chemotherapy include those in the –

• bone marrow (where blood is produced) causing low blood counts

• digestive system (mouth, stomach, bowels or intestines, rectum) which may cause nausea, vomiting or mouth/gut ulcers


• hair follicles (hair loss)

• reproductive system (impaired fertility- discuss this with your doctor)

Normal cells repair themselves much more effectively than cancer cells; therefore the side effects caused by damaging healthy cells are almost always temporary.

Different chemotherapy drugs cause different side effects. Also, people respond to chemotherapy differently, some people will have few problems, others more. You will be given specific information pamphlets on all the chemotherapy drugs your child will receive. This information includes how the drug is given, side effects and precautions.

Most of the side effects can be easily managed but it is important for you to let your doctor or nurse know if you notice any side effects.

It is not possible to resolve all side effects of chemotherapy; however, we will do our best to make your child comfortable.

Who decides what type of chemotherapy and how it will be given?

Soon after your child has been diagnosed with cancer, your doctor will provide you with a detailed outline of the planned treatment and a general timeframe of what will happen and when. This is referred to as the treatment protocol.

How is chemotherapy given?

Chemotherapy is given in a number of ways. These include:

• by injection into a vein (intravenous or IV)

• by mouth (oral or O)

• by injection into a muscle (intramuscular or IM)

• by injection under the skin (subcutaneous or SC)

• by injection into the fluid surrounding the spinal cord (intrathecal or IT)

When chemotherapy is given into a vein, it may be given as a quick dose (push) or infused via a pump from a syringe or a bag of fluid over a longer period of time.


By far the most common ways to give chemotherapy is into a vein or by mouth. It is clearly stated on the treatment protocol how the drugs will be given.

When will my child have chemotherapy?

Chemotherapy is given according to the treatment protocol. Most chemotherapy is given in cycles where your child will have a course of treatment followed by a rest period.

The rest periods allow the body to recover from the side effects of the drugs.

Will chemotherapy hurt?

Oral chemotherapy is just like taking any other medication orally – it does not hurt but some children do not like medicines so the oncology team will give you some helpful hints for taking medicines.

Injections may be part of your child’s treatment plan and to help reduce the pain we use local anaesthetic cream prior to giving needles. Other measures like ice packs may be helpful for IM injections.

Most children diagnosed with cancer have some form of a central line inserted. (There is a chapter explaining these in detail included in the folder) These central venous access devices allow us to give chemotherapy and other medications directly into a vein.

If your child becomes very distressed a referral to the psychologist may be helpful. Some children have found hypnotherapy very helpful.


Will my child be admitted to hospital?

Some chemotherapy is given on an outpatient basis at the Ronald McDonald Children’s Clinic. This may be either a quick push of medication or it may be given over 1-6 hours.

When chemotherapy is given over a longer period of time or requires extra fluid to be given at the same time your child will be admitted to hospital. When this occurs on the treatment protocol your doctor will explain this to you.

When your child is receiving oral chemotherapy at home you will be given information on how and when to administer this.

How long will treatment last?

The length of treatment will depend on the protocol and how well your child’s disease responds to the drugs. The doctor will plan the treatment for a certain length of time known to be effective for children with similar types of cancer.

Bone Marrow Rescue Procedures

Some protocols use such high doses of chemotherapy that the body’s own bone marrow would be permanently damaged or recover too slowly to allow the treatment to be undertaken safely.

For a bone marrow rescue procedure to occur your child will have previously had a bone marrow or blood stem cell harvest. This is a procedure in which cells from bone marrow or blood are collected from the patient or close relative. Once the chemotherapy is given, some of these cells are given back to the patient. These cells then grow and multiply in the patient’s bone marrow. More information regarding this procedure will be given to you if required.


Side effects of Chemotherapy

Chemotherapy cannot tell the difference between good cells and bad cells, it simply effects all cells that rapidly divide. Damage to normal cells may lead to side effects.

1. Bone marrow suppression

Bone marrow suppression is the most common side effect of most chemotherapy drugs. Bone marrow suppression can limit the dose of chemotherapy that can be given and the time between courses. The bone marrow, which is found in the hollow centres of most bones, is the factory where blood is made.

Blood is made up of fluid and cells. There are three main types:

• Red cells contain the pigment haemoglobin, which carries oxygen around the body. Lack of red cells and haemoglobin is called anaemia and causes paleness and tiredness.

Doughnut-shaped, red blood cells carry oxygen around the body


• Platelets are involved in blood clotting. When the platelet count is very low, the child may bruise easily and some times can have nosebleeds. They may also develop petechiae, which are small red spots under the skin.

• White cells are part of the body’s defence system against infection. There are 2 important types of white cell:

• Neutrophils – important in fighting bacterial infections. When the neutrophil count is less than 1.0, the child is said to be neutropenic and is at risk of serious bacterial infections, often with bacteria from within their own body. The lower the white cell count falls, the greater the risk of infection.

• Lymphocytes – important in fighting viral infections and in producing special proteins called antibodies, which help destroy viruses and bacteria.

Taken from Neuro- Oncology Parent Handbook – Royal Children’s Hospital


Anaemia

Anaemia is a low red blood cell count. It can be caused by the cancer itself or from the treatment. The symptoms of anaemia are:

• Sleepiness

• Breathless or a rapid heartbeat

• Dizziness or light headedness, inability to concentrate or headache

• Signs of bleeding

• Pale skin

Contact the hospital if you notice any of the above symptoms.

Anaemia can occur at any time on treatment. The following could help you manage the symptoms until the anaemia resolves or you have a blood transfusion:

• Arrange child’s activities to have time to rest

• Eat a well balanced diet and drink lots of fluids. (refer to the nutrition section for advice)

• Rise slowly after sitting or lying to prevent dizziness.

To correct anaemia a blood transfusion is given as a drip over a few hours and can usually be done on an outpatient basis. White blood cells are removed by filtering, and all blood products are now irradiated before use to help reduce the risk of reaction. Despite these precautions there is a very small risk of reactions or infections from blood.

Bleeding

Platelet numbers may fall low enough to cause minor and major bleeding problems during treatment. This is called thrombocytopenia. If the platelet count falls to a very low level a platelet transfusion will be given to prevent possible bleeding. The ability of platelets to help blood clot is severely affected by even small doses of aspirin. This drug should not be given during chemotherapy. Paracetamoll is a safe and equally effective


substitute. There is a list included in the home care section showing the medications that contain aspirin. The following steps will help minimise the chance of bleeding:

• Use a soft toothbrush – unless bleeding or sore mouth (refer to the mouthcare section)

• Use a lip balm to keep lips moist and prevent cracking

• Blow nose gently

• Caution with physical activity when platelets are low.

If your child has bleeding from the nose, gums and /or mouth or unexplained bruising please contact the hospital. Bleeding can also occur in the bowel which, would show as red streaks in a bowel action or black bowel actions. If urine is pink or vomit is red or a coffee colour then this may be a sign of bleeding and you will need to contact the hospital.

Infections

Fever

Chemotherapy affects the numbers of white cells and this reduces the child’s resistance to infection. Any fever over 38.5°C or two fevers over 38°C that develops during treatment must be taken seriously and medical advice sought from the specialist or local doctor. (You will need to use a thermometer to take your child’s temperature, if you do not have a thermometer, parents have reported that digital thermometers are much more effective than the expensive tympanic thermometers.) Normal temperature is between 36 – 37.5 °C.

If your child has a temperature greater than 38.5 °C with a neutrophil count of less than 0.5 they will require admission to hospital for several days and be treated with intravenous antibiotics. While your child is in hospital your child will be isolated in a single room. If your child has a bacterial infection they may become very ill without prompt medical attention.

There may be times when you are admitted to another ward, if this were to happen then you will be seen by the oncology team when they do there rounds and they will assist the staff with any questions they may have regarding your child’s care.

Chicken pox and Measles

Some of the common childhood diseases such as measles, chicken pox or shingles are dangerous to children receiving


chemotherapy. These can result in a very serious infection, which can very rarely be fatal. It is very important for parents to contact their doctor as soon as the child comes into contact with somebody suffering from one of these diseases. Contact needs to be direct or close, that is person to person contact. It is important to have the diagnosis of the contact person (the person with the disease) confirmed by a doctor if possible.

Chicken pox and measles are both infectious before the rash appears. For this reason it is very important that parents establish a good communication network amongst their relatives, friends and schoolteachers so that they are notified immediately if someone with whom their child has been in contact, whether in play or at school, develops chicken pox or measles.

The infectious period for these two illnesses is shown below:

Chicken pox Infectious for 1-2 days prior to

rash until all lesions have dried and

crusted

Measles Infectious from first symptoms of

fever, cough, red eyes prior to the

rash until the rash fades

(usually 4 days from onset of rash).

Shingles, which is a re-activation of the chicken pox virus in people who have already been infected with the virus in the past, is also potentially infectious and children have been known to catch chicken pox from grandparents with shingles. The infectious period for shingles is the same as for chicken pox and shingles may occur more than once.

Parents and siblings who have already had chicken pox and measles cannot pass the illnesses on from an infected contact to the child receiving treatment for cancer.


If your child has come into contact with someone with chicken pox preventative treatment of an antibody is given by injection. This must be given within three days (72 hours) of a contact if it is to be effective, and even then it will only give protection for about 2 to 3 months.

Some parents have found it helpful to send a letter to other parents at childcare or to have information circulated in the school newsletter.

Mumps and German Measles

Mumps and German measles (Rubella) are not considered to be dangerous, and no special precautions are required.

Common Conditions

Common conditions such as colds and tonsillitis do not usually present any real problems.

Vaccinations

Vaccines containing live viruses, such as measles vaccine, are potentially dangerous, because of the risk of producing an overwhelming infection with the modified virus. Live virus vaccines must not be given to children receiving chemotherapy. It is safe to give live virus vaccines to siblings except in the case of oral polio vaccine. As this can be spread through faeces, you should request an inactivated polio vaccine for your other children.

Vaccines, which do not contain live organisms, include influenza, diphtheria and tetanus (CDT). However, the immune response can be diminished while the child is receiving chemotherapy. Sometimes a decision will be made to defer immunisation until after chemotherapy is completed.

At the completion of treatment discuss vaccinations with your doctor.


Transfusions

During your child’s treatment specific blood products may be needed to top up your child’s own blood supply. They may require a red blood cell transfusion (if your child has anaemia, a low red cell count) or a platelet transfusion (if your child has a very low platelet count or is bleeding).

Are transfusions safe?

Blood donations are carefully checked for viruses (such as HIV and hepatitis) and bacterial infections that might be transmitted by the transfusion. This means that the risk of viral /bacterial infection from blood components is extremely low.

Doctors only order transfusions when they are really needed.

All blood products given to your child will be:

• screened for CMV (cytomeglovirus) – this can cause problems in patients with low white blood cell counts

• irradiated - to reduce the risk of reactions

• white cell filtered - to further reduce the risk of reaction (this can be done in the laboratory or at the time of the transfusion).

Can a family member or I donate blood to be given to my child?

This practice is not recommended as studies have shown that this type of donation is no safer than blood donated through the Red Cross.

It is unlikely that a single donor will be able to meet all the requirements that a child receiving chemotherapy may need.

Relatives of children with leukaemia should not donate blood products as use of these can lead to sensitivities later on. This can be a problem if their child were to need a transplant as part of treatment.

If you/ or family members still wish to donate although it will not be used for your child you may donate to you local Australian Red Cross Blood Service.

Please discuss this further with your doctor if you have any questions.


What tests are required prior to a transfusion?

A blood count will show the levels of red cells and platelets. If the red cells are low enough for your child to need a red cell transfusion then a blood sample will be taken to match the donated blood with your child’s blood. This is called a cross match. It is done to check that the donated blood and your child’s blood are compatible to reduce the risk of reactions. A cross match blood sample is needed for each red blood cell transfusion. It can take up to several hours to prepare the correct blood to give to your child, plan that you may need to be at the hospital for the whole day.

Platelets need to be from a compatible blood group. It can take several hours to obtain the best platelets, as they may need to come from Red Cross or even another hospital.

Red Cell Transfusion (Blood transfusion)

Your child may be given red blood cells if the red cell count is low or they have lost blood from an injury or during surgery. This can be done if your child is a patient in a ward or as an outpatient in Ronald McDonald Children’s Clinic.

The amount of blood given will depend on the size of your child and how low the red cells count is.

A blood transfusion is given intravenously either by an IV line or through your child’s central line or port.

The whole transfusion usually takes 4 to 6 hours to infuse but can sometimes be longer if the red blood count is very low.

During the transfusion your child will be observed for any sign of a reaction such as:

• Temperature / rigor (uncontrolled shivering)

• Rash

• Finding it hard to breath

The most common reactions can be controlled with medications, but children sometimes need to stay in hospital overnight for observation after a reaction.

Platelet Transfusion

Platelets stop your child bleeding by sticking together to form a plug. When platelets are low your child may bruise easily or they may bleed from the nose, gum or other part of the body.


A platelet transfusion can be given if your child is a patient in a ward or as an outpatient in Ronald McDonald Children’s Clinic or after hours in the Emergency Department.

The size of the platelet transfusion will depend on the size of your child.

Platelets can be given intravenously either through an IV line or through your child’s central line or port and it will take about half an hour.

During the transfusion your child will be observed for any sign of a reaction such as:

• Temperature / rigors (uncontrolled shivering)

• Rash

• Finding it hard to breath/ wheeze

• Vomiting

If your child has a reaction it can be controlled with medications. If a reaction occurs then for all other platelet infusion your child will receive a premedication to help prevent reactions.

2. Mouthcare

What is mouthcare?

Mouthcare is regular cleaning of the teeth and gums. During the time children are having chemotherapy and radiotherapy they may need to stop using a soft toothbrush because brushing becomes too harsh on the lining of the mouth, that is when a gentle mouthcare routine should take the place of normal brushing.

Why do we need a gentle mouthcare routine?

Chemotherapy drugs attack and destroy rapidly multiplying cells, such as cancer cells. The drugs cannot tell the difference between ‘good’ and ‘bad’ cells and may also affect cells that line the gut (gastro-intestinal tract), hair follicles and blood cells. The inside of the mouth is lined with cells that produce mucous and has a large blood supply. When you have chemotherapy the mouth lining can become weak. When the lining of the mouth is weak it is easier for bacteria to enter the blood stream and cause infection, which can cause a sore mouth or mucositis. Using a gentle mouthcare routine can help to stop or reduce infections.


What is mucositis?

Mucositis is the swelling or inflammation of the mucous membranes (cell lining) of the mouth and gastro intestinal tract. The swelling causes pain and redness that will effect your child’s desire to eat and drink.

What is good mouthcare?

When your child is between treatments and their white blood cell counts are good and they are otherwise well, good mouthcare is:

• Brushing the teeth using a soft-bristled toothbrush and toothpaste at least twice a day after food. This is to stop plaque build-up and prevent gum disease.

• Make sure toothbrushes are clean and replace them every 1-2 months.

• Before a visit to the dentist, let the dentist know your child is having chemotherapy.

• Remember to tell your doctor if a dental problem occurs.

• Keep lips moist by using creams often after brushing. Creams such as lanolin and white soft paraffin will protect against drying and chapping.

When do we need to use a gentle mouthcare routine?

Gentle mouthcare should be started when your child has low white cell counts, and at any time when gums are bleeding or too sore to brush properly. If unsure when to start check with your doctor or nurse.

When are soreness or mucositis likely to happen?

Mouth soreness is likely to happen 7-10 days after chemotherapy has begun. At this time it is expected that the blood cell counts will be lowest, and that is when the lining of the mouth will be weak.

How is a gentle mouthcare routine done?

Mouthcare should be done four times a day, after meals and before bed.

• Rinse the mouth with the mouthwash ordered by your doctor. Dilute 10-15 mls of chlorhexidine mouthwash with 10-15 mls


of tap water, swish around the mouth and through the teeth, then spit out. Repeat this action three times.

• For infants or children who can’t rinse their mouths, parents should use jumbo probes soaked in chlorhexidine mouthwash (prepared as above) to wet the mouth, massage the gums and clean the teeth. Use a new probe each time and repeat this three times.

• After the mouthwash an antifungal medication ordered by your doctor. (Eg. Nystatin drops, Miconazole gel or Amphotericin lozenges) is put into the mouth and around the gums. Use the amount shown on the label.

• Nystatin drops can be swished around the mouth, then spat out, or swallowed if that is easier.

• The amount of Miconazole gel is usually just enough to coat around the mouth. A teaspoon, probe or dummy can be used to give the gel.

• Each Amphotericin lozenge must be sucked and allowed to completely dissolve.

It is important to note that food should not be eaten and the mouth not rinsed for 20 minutes after the mouthcare to allow for best effect.

Are there any other mouthwashes that taste better?

There are other types of mouthwash that you may find taste better. If using the recommended mouthwash is a problem ask your doctor for a change. Difflam, Amosan and Ultrafresh are three other mouthwashes you could try.

How do I know if my child has a sore mouth?

If your child can’t tell you their mouth hurts, then look for signs that the mouth is sore:

• Drooling (in younger children)

• Difficulty speaking or opening mouth

• Refusing food and drink or pain when eating

• Difficulty swallowing

• Dry or cracked lips

• Pale, rigid gums

• Redness and / or swelling of the gums


• Bleeding gums

• Mouth ulcers

What should I do if my child has a sore mouth or their gums bleed?

• Stop using a toothbrush and change to a gentle mouthcare routine.

• Drink plenty of fluid, as this rinses the mouth and removes any debris

• Avoid irritating food and drink, such as fruit juices, hot foods, hot drinks and strongly spiced foods.

• Use numbing gel on the mouth and gums before eating to help limit pain. DO NOT use gels that have aspirin in them. The Women’s and Children’s Hospital recommend Chlorhexidine and Lignocaine gel.

• Give regular paracetamol for pain.

• If your child still can’t eat or drink you should contact your doctor and your child may need to come into hospital.

• For advice contact your doctor or nursing staff at Ronald McDonald Children’s Clinic or on Brookman ward.

When can my child return to tooth brushing?

When bleeding and/or soreness have stopped, and the white cell count have improved. The white cell count slowly improves ten to fourteen days after the last chemotherapy treatment. A blood test to check the white cell count is the best way to be sure the count has improved. If you are unsure check with your doctor or nursing staff.

Mouth soreness is an unpleasant and uncomfortable side effect of chemotherapy, but it is only temporary and will not be as severe if it is noticed early and treated straight away.

Tips to make mouthcare fun

• Involve brothers and sisters in the game of mouthcare.

• Role-play with Dolly or Teddy.

• Use praise and encouragement; ask for kisses to smell their sweet, fresh breath.


• Play with the swabs, pretending to paint pictures inside the mouth.

• Encourage independence by allowing younger children to hold the swab, put the gel on etc.

3. Constipation

Constipation can be caused by some drugs, but this can usually be overcome by the use of laxatives and an adjustment in the child’s diet (refer to the nutrition section).

Avoidance of constipation is very important if your child is receiving a very intensive chemotherapy protocol. Hard faeces can cause a tear (a fissure) in the anal canal (back passage) which may be painful, slow to heal and can be a site of entry of bacteria into the bloodstream (septicaemia). This may result in serious, even life-threatening, infections during periods of neutropenia. (See common terminology).

4. Sunsmart

Protection from the sun is important for everyone. It is essential for children having chemotherapy and radiotherapy. Chemotherapy makes the skin more sensitive to the sun and it will burn more easily.

It is important to use factor 30 + sunscreen and long sleeved clothing and hats while outside.

Remember SLIP, SLOP, SLAP and WRAP

5. Hair Loss (Alopecia)

Why does hair loss occur?

Hair loss occurs when either chemotherapy or radiotherapy interrupts the normal hair growth.

Chemotherapy disturbs the growth and division of cancer cells but also causes temporary damage to some normal cells, especially those cells which rapidly divide such as the hair follicle.

Hair loss can range from very little loss to severe thinning to complete baldness. Hair loss may also include body hair, eyebrows and eyelashes.

Not all chemotherapy drugs will cause hair loss, so it is important to check with your doctor if the drugs your child will receive will


cause hair loss. Hair loss can occur more than once depending on the treatment that your child receives.

Hair loss may start within a week or so after starting treatment.

If your child is receiving radiotherapy as a part of treatment, they will experience hair loss also. The hair loss occurs in the path of the radiotherapy beam; hair will fall out in the area of the body being treated. This commonly occurs within weeks of starting radiotherapy.

Will my hair grow back?

Yes, hair loss in most cases is only temporary.

After chemotherapy, hair will regrow and this may happen even before treatment has been completed.

You may notice some changes in your child’s hair. It may be a little more curly, thicker or finer than before and may even grow back a slightly different colour.

When radiotherapy is finished, hair usually grows back but it may not be a thick as before. The time it takes to grow back will depend on the dose of radiotherapy and the length of treatment. You should discuss this with the radiation oncologist.

How to care for hair and scalp during treatment?

• Use gentle shampoos

• Pat hair dry

• Use a wide toothed comb when hair is wet

• Use a brush with soft bristles

• Use low heat when drying hair

• Avoid plaiting or braiding hair as the pulls and stretches the hair.

• Avoid elastic bands when tying back hair as it breaks the hair.

• If all hair is lost and the scalp becomes flaky gently rub scalp with damp cotton wool, a mild anti-dandruff shampoo might help.


Coping with hair loss.

Hair loss can be a traumatic part of receiving chemotherapy or radiotherapy. Adolescents may be more affected by hair loss than younger children, because adolescents fear being different from their peers.

Talking about hair loss with the oncology team or with other people who have suffered hair loss may be helpful.

Some people find having their hair cut short before it starts falling out or shaving hair off is best for them. Wearing a bandanna, hair net or a beanie at night can help prevent the loose hairs in the sheets causing itchiness.

What is there to wear?

Hats are great, they come in different styles, and colours and bandannas are also popular.

Wigs are also an option but some find that they are uncomfortable to wear and hot in the summer. If a wig is chosen for a child it is important to remember that they grow and may need to change sizes. To help with wig selection it is suggested that you take a small piece of hair and photo so that the style, colour and texture can be matched.

The cost of a wig may be covered so discuss this with your social worker.

Where can I find help?

You can find further information by asking:

• Your doctor

• Nursing staff

• Social worker

• Cancer information services – CCA, Canteen

6. Nausea and Vomiting, Loss of Appetite

Nausea and vomiting is a common problem experienced during courses of chemotherapy. Normal tissues can be temporarily damaged by chemotherapy, and some of the cells most affected by the drugs are the ones that line the gut, as well as cells in the brain, which control nausea and vomiting. This can cause nausea


and vomiting which sometimes can last for a few days after the chemotherapy treatment stops.

Your child may become anxious when they are to have chemotherapy and other treatments and this can cause vomiting before chemotherapy is given or cause more lasting vomiting afterwards. Children affected in this way can become so upset by clinic visits and treatments that even the smell of the clinic or hospital can make them feel ill enough to begin vomiting.

The effects of chemotherapy vary with each child and the dose given. A drug that makes one child very ill often has no effect on other children. Because the effects are so variable, each child’s treatment must be worked out for their individual needs.

What can be done to prevent or treat nausea and vomiting?

There are some very effective medications available to reduce nausea and vomiting. These are called antiemetics and are best given before chemotherapy. Different drugs work for different people, and more than one drug can be used to give relief. These medications are given either orally (by mouth), or intravenously (into the vein). You will often be given oral medications to use at home if nausea and vomiting continues. In the ‘Nutrition and Cancer’ section there is dietary information on managing nausea and vomiting.

If vomiting occurs, treat the empty and irritated stomach with a gentle plan to re-establish its normal function:

• If vomiting is persistent, don’t force food down. Sip small amounts of fluid like flat lemonade or glucose drinks. If vomiting is not resolving, call the Oncology Unit.

• Carry spare clothes and wipes to places where your child may vomit.

• If vomiting is controlled but the child is still nauseated give diluted milk or fruit juices, weak tea or clear broths to drink. Once fluids are managed, try small amounts of solid food like cereals, yoghurt, or stewed or pureed fruit.

• Avoid any food that triggers symptoms.

Loss of Appetite

Most children experience eating problems while on chemotherapy. Anorexia, or loss of appetite, is one of the most common problems caused by cancer treatment. Children suffering from nausea and


vomiting, diarrhoea or constipation, an altered sense of smell or taste, mouth sores, and other uncomfortable side effects, understandably don’t feel hungry. Once more, the damaging of normal tissues lining the gut causes this loss of appetite. As well as the simple loss of appetite, the child may experience a side effect called early filling, where the child feels full after only a few bites of food. This can lead to weight loss and not eating enough of the right kinds of food.

Don’t force your child to eat discuss this with your doctor and you may also find the ‘Nutrition and Cancer’ section in the folder helpful.

What can I do to restore appetite and encourage eating? I am worried about my child not getting enough to eat.

There are a number of things that can lead to a loss of appetite:

• A sore mouth can make it hard to eat or drink. Chemotherapy can cause mouth ulcers and reduce the production of saliva. In the ‘Mouthcare section’ there is information on managing a sore mouth.

• Chemotherapy can cause changes in the taste buds, which alters the way your child thinks food tastes. Food that children once loved can now taste bad. The sense of smell is also affected by chemotherapy. Smells can be increased so that smells which others are unaware of can cause a loss of appetite, and cause nausea, during chemotherapy.

• Indigestion can also cause a loss of appetite because of a sore throat or stomach. Medications can be given to treat indigestion or lessen the amount of acid produced by the stomach.

Other tips to lessen indigestion include:

• Chew food well and take time with eating.

• Sit upright while eating and for a while afterwards.

• Try to relax at mealtimes and avoid interruptions.

• Rest after eating.

• Avoid highly seasoned, spicy and fatty foods to reduce indigestion.

• If too much saliva is produced spit it out instead of swallowing it.


Other hints to help stimulate the appetite:

• Eat together as a family whenever possible and encourage meal times to be happy, social occasions.

• Allow access to food at all times.

• Serve food in small, attractive portions.

• Decorate food and drinks.

• Try to plan interesting school snacks that are easy to manage.

• Include favourite treats like takeaways.

• Use the time between treatments to make up for lost eating.

Please remember, if none of the above is working and you are concerned about this aspect of your child’s health, ring Ronald McDonald Children’s Clinic during the day, and Brookman ward after hours to discuss your concerns.


What is Radiotherapy?

Since the discovery of X-rays, radiation has been used in medicine to help diagnose (by taking pictures with X-rays) and treat patients.

How does Radiotherapy work?

Radiation in high doses kills cells and keeps them from growing and dividing. Cancer cells are abnormal. Usually they grow and divide much faster than the normal cells around them. Radiation works best on rapidly dividing cells. Your radiation oncologist (doctor) will carefully limit doses of radiation to the healthy cells while giving a high dose to the cancer cells.

Radiotherapy treatment will not hurt as it is just like having an X-ray taken. Your child will not feel anything but will be able to hear the machine as it works. You will not be able to stay in the room while your child has their treatment. There is a TV screen in the viewing room where you can see your child. Most of the time will be spent making sure that your child is in the right position to have their treatment. The treatment itself does not take very long. They are once daily, usually around the same time each day, Monday to Friday. The average course time can be from two – six weeks.

Who has Radiotherapy?

Depending on the type of cancer your child has, your doctor may prescribe a course of Radiotherapy treatment to destroy the tumour and hopefully cure the disease. It may be given before or after surgery or before, after or between rounds of chemotherapy depending on your child’s treatment protocol. The tumours that usually respond to Radiotherapy include brain tumours, neuroblastoma, Ewing’s sarcoma, retinoblastoma, Wilm’s tumour, rhabdomyosarcoma and Hodgkin lymphoma. Children with high risk Acute Lymphoblastic leukaemia will also require prophylactic cranial irradiation.

Radiotherapy may also be given to relieve symptoms of the disease, for example to reduce pain. This is called palliative treatment. These are lower doses and are usually only given over a few days or as a once only dose.

Another form of Radiotherapy treatment is called Total Body Irradiation (TBI). This is often given to patients who are having a bone marrow transplant. Usually six doses are given, twice a day for three days in a row.


Will my child need a general anaesthetic?

Young children usually under the age of five may need to have their treatment under a mild anaesthetic. This is because your child needs to be very still during the radiotherapy treatment. As your child cannot eat or drink for four hours before their treatment, you will probably have a morning appointment. It is suggested that you bring along snacks and a drink for your child to have after treatment. There are tea and coffee facilities available for parents.

The anaesthetic is usually given in the radiotherapy department by an anaesthetist from the Women’s and Children’s Hospital. The anaesthetic induction medicine can be given through your child’s port or central venous line while you are comforting or holding them. You can stay with your child until they are asleep. You then can watch them from the viewing room if you wish. There is an intercom between the rooms so that you can talk and listen to your child. Their heart rate and oxygen levels will be monitored until they start to wake. When the treatment is over, the anaesthetist, a nurse will stay with your child until they wake up. You can stay with your child once the treatment is over. This usually takes around 20 minutes to an hour. You can then take your child home unless they are an in-patient, then they will go back to their ward.

Where do you go for Radiotherapy?

If your child needs radiotherapy, an appointment will be made for you at the Royal Adelaide Hospital (RAH) Radiotherapy Department. Here you will be given an information brochure and shown a video before starting treatment. This aims to give you as much information as possible about the treatment process.

All patients will have a clinic appointment to meet their radiation oncologist and to register as a patient. You will also be given a temporary-parking permit for the length of the treatments, if it is required, by the staff at the Royal Adelaide Hospital. Sometimes you may need to attend radiotherapy while your child is an in-

Viewing Room


patient. Depending on how ill your child is a taxi or ambulance can be arranged to transport you both to Royal Adelaide Hospital.

The radiotherapy team at the Royal Adelaide Hospital, visit to the radiation oncologist.

The team at the Royal Adelaide Hospital includes Dr Martin Borg who is the paediatric radiation oncologist. Two radiation therapists who are skilled in paediatric and adolescent care usually assist him. These will be the ones that will set up your child and actually give the radiotherapy treatment. The nurses, who aim to provide constant care, also give support. They can help you if your child is having any problems. Their aim is to provide personal care in a relaxed setting.

Planning; staging investigations and Simulation

On the second visit, a series of treatment planning stages will make sure that your child is in the exact position each time. This includes a visit to the Simulator X-ray unit in the department this sometimes is referred to as the “set-up”.

This allows the doctor to define and focus on the treatment area required. Sometimes this may take a while and your child may need to be anaesthetised. It may also include a CT scan. You will be able to stay with your child during this period and help to comfort them.

The nursing staff will give you directions on how to care for your child’s skin in the area that is being treated. Lotions and creams should not be applied unless ordered by your radiation oncologist.

Mould room

A trip to the Mould Room to have a plastic mask/cast made may also be required. This mask or cast helps with the treatment of head and neck areas by holding the patient in the correct position. The mask is made from a lightweight plastic material, which allows

The Simulator


your child to breathe easily. It takes a little while for the mask to harden.

All of these steps will depend on the special needs of each patient’s treatment. The appointments will be arranged on the first visit. Some patients require a more complex planning procedure, which may take up to a week or more. The staff will aim to keep this time as short as possible.

Treatment

The department hours are usually between 8:30am – 5:00pm Monday to Friday but occasionally treatment may need to be given between 8:00am – 6:00pm. Treatment appointments are usually arranged weekly. During this period, it is advised that you try to arrange any other appointments around radiotherapy treatment times and to try to give at least a weeks notice if there are any special needs, for example kindy or school times or even nap times.

At each daily visit to the treatment suite, radiation therapists will assist with any problems or queries. Patients will see their radiation oncologist for a regular, twice weekly, review of their treatment progress. If there are any questions, problems or medication requirements the doctor can discuss this with you on the review day. If there is a need to see a doctor between reviews, the nursing staff in the treatment suite can arrange a time.

Mould Room

Treatment Suite


Side effects of Radiation Treatment

Sometimes it is difficult to know whether the side effects your child is having is due to the radiotherapy or from the chemotherapy that they may be having at the same time. The degree of side effects depends on the sensitivity and the size of the area being treated as well as the area being treated.

Possible short-term side effects are loss of appetite, nausea and vomiting, mouth sores and/or sore throat, tiredness, slightly reddened or itchy skin that can become moist and weep for a few weeks. The nurses at the Royal Adelaide Hospital will be able to assist you with dressings if needed.

Also low blood counts, changes in taste and smell, dry mouth and hair loss may also occur. These effects can last from a few days to several weeks. Please see the nurses or doctor, if you are worried at all about any possible side effects

For those children that have brain tumours there may be headaches and changes in your child’s behaviour. They can become aggressive and moody which could be due to the brain swelling and irritation from the treatment. This should soon stop when the treatment stops, please talk to the nurses if you are worried about your child’s behaviour. You can contact the nurses at radiotherapy department or Ronald McDonald Clinic during office hours and after hours and weekends, the nurses on Brookman Ward.

Long Term complications can occur years after radiation therapy, these depend on the area treated and the radiation dose. Questions about late effects can be discussed with your doctor. There is a late effects clinic that happens through Ronald McDonald Children’s Clinic. If you would like more information on this topic please see one of the nurses at the clinic.

How do I prepare my child for Radiotherapy?

An ‘activity book for kids with cancer receiving radiotherapy’ will be given to your child when you attend your first visit to the radiotherapy department. It has games and things to do for your child. It also goes through telling your child about the treatment that they are going to be having and how they may feel. There is a calendar that they can use to count down their treatments and spaces to stick photos or to draw pictures.


Supports Available

This includes the nurses and doctors as well as your social worker. If you need accommodation or assistance with transport, please see your social worker. Parking permits for the Royal Adelaide Hospital are also available from Brookman Ward, please see the ward clerk.

Private Health Insurance (Applies only to private patients)

Please talk to Doctor Borg’s secretary if you have any question’s re billing and the private insurance gap.

Further Information

More Information can be obtained from the Department of Radiation Oncology Information package. Please ask for a copy on your first visit to the Royal Adelaide Hospital.

Websites

You can find more information on the Royal Adelaide Hospital website

www.rah.sa.gov.au/cancer/radonco5.htm

Other helpful sites include

www.cancerbacup.org.uk/info/radiotherapy.htm

and http://australia.vh.org/Patients/IHB/Peds/11Radiation.html


Central Venous Access Devices

Why are they used?

Central venous access devices are used to give direct access to a large ‘central’ vein that goes directly to the heart. These devices are multi-purpose. They allow chemotherapy and blood products to be given, blood to be taken and other fluids and parental nutrition to be given if needed without the use of needles for your child.

What types of Central Venous Access Devices are available?

There are several types of long-term access devices available. The Central Venous Catheter and the Port are the two most commonly used at the Women’s and Children’s Hospital.

The age of the child and type of treatment determines the type of device used. The Oncology team will discuss with you, which venous access device best suits, your child.

Please ask nursing staff for more information about the device your child will receive.


What is a Central Venous Catheter (C.V.C.)?

A Central Venous Catheter is a permanent intravenous (or IV) line. It is a thin flexible silicone rubber tube. The tube may have a single channel (lumen) or two separate channels (lumens) and occasionally may have three channels (lumens).

Who inserts central venous catheters?

A general surgeon inserts all Central Venous Catheters under a general anaesthetic in the operating theatre.

Where is the central venous catheter placed?

The catheter is inserted into the chest wall and tunnelled up under the skin where it enters a large blood vessel in the neck. The catheter is then fed down through the blood vessel. It exists in the chest near the nipple line, and is stitched in place. This site is called the exit site. Occasionally the catheter is placed in alternative sites the indications for which will be discussed by your doctor.

How do you know it is in the right place?


While your child is still in the operating theatre, the position of the catheter is checked using a ‘Mobile Image Intensifier’. When your child returns to the ward, and before the line is used for any medication, a chest x-ray is performed to confirm the position. If there is a problem with the line working at any stage a special dye can be injected into the line and position checked by chest x-ray.

How long will my child be in hospital?

An overnight stay in hospital is required to make sure there is no bleeding and pain is controlled. You will need to be taught how to look after the catheter at home and deal with any problems, which may occur.

Will it be painful?

Regular Paracetamol usually covers the pain for a couple of days after the operation and all pain should be gone after one week.

What stops the catheter from falling out?

The catheter will be stitched in at the start and those stitches will be removed after 7-10 days, when the body’s natural tissue will have grown around the catheter to hold it in place. A clear plastic dressing will be placed over the exit site after a small loop has been made with the catheter on the chest wall.

How is the catheter cared for?

• A clear plastic dressing is applied where the catheter exits the skin.

• This dressing needs to be changed on a weekly basis by nursing staff using a sterile technique. At the same time each lumen of the catheter should be flushed.

• When the catheter is not in use, it should always be clamped. Clamps are used on the thick part of the catheter only.

• Nursing staff need to change bungs monthly.

Can our child play sport and swim?

You should not swim or play contact sport because of the danger of the line being pulled out or becoming infected.


Can the dressing get wet?

Your child is still able to shower and have shallow baths. Bath water should only be hip level, never come above the waist. The dressing is waterproof but if you notice water under the dressing it should be changed by nursing staff.

What should I do if the catheter leaks or is accidentally pulled out?

• You should have been given a pair of clamps to take home with you when you left the hospital. If the catheter is leaking, clamp it between the leak and the chest wall and seek medical assistance immediately.

• If the catheter is pulled out your child needs medical assistance immediately. Press at the neck wound using 2 fingers for 5 minutes to minimise any bleeding.


What is a Port? It is a small metal disc, about the size of a 20-cent coin, with a special rubber centre that can be needled many times.

Who inserts the port?

A general surgeon inserts the port under a general anaesthetic, in the operating theatre.

Where is the port placed?

The catheter is inserted into the chest wall, and tunnelled up under the skin where it enters a large blood vessel in the neck. The catheter is then fed down through the blood vessel. A pocket is made under the skin on the chest wall where the small round metal disc (port) is attached to the catheter and sutured in place.

Placement of Ports


How long will my child be in hospital?

An overnight stay in hospital is required.

Will it be painful?

Regular Paracetamol usually covers the pain for a couple of days after the operation and all pain should be gone one week after the operation.

How is the port cared for?

Once the surgical wound has healed completely there is very little care involved in managing a port. There are no dressings involved and the port is completely under the skin.

The port can be recognised by the small round ‘lump’ on the chest wall.

Can our child swim or play sport?

Your child can swim, shower and play non-contact sports.

How does it work?

The port is attached to a catheter, which is inserted into a large vein, allowing easy access for administration of medications. The port is accessed with a ‘Huber’ needle.

Will the needle hurt?

The days your child has treatment, you may place a special cream (Emla – a local anaesthetic cream) on the port and cover with a plastic dressing at least 1 hour prior to treatment.

The Emla cream will numb the skin. Your child will feel the nurses holding the port but they shouldn’t feel the needle. For some children, having the Emla on their skin causes some anxiety. You may like to discuss ‘options’ with nursing staff.

The needle is a special needle called a ‘Huber’. It has a 90-degree bend so that it sits easily against the chest wall. A ‘Huber’ needle is the only type of needle to be used in your child’s port as it has a special non-coring point.


Why do some children have ports, some central venous catheters?

The two common types of central venous lines used on the Haematology/Oncology Unit are ‘ports’ and ‘central venous catheters’. For children who may need a transplant as part of their treatment protocol, a ‘central venous catheter’ is used. If a transplant is not planned in their protocol, a Port is usually chosen.

There may be other special circumstances that will determine the choice of catheters by your doctor.

Does the port need any care between treatments?

If the port has not been needled for treatment for 4 weeks, it will need a flush with special medication to prevent it from blocking.

How long can the port stay in?

The port can stay in as long as your child’s treatment requires. This varies from a couple of months to a few years. It is usually removed 3-12 months after treatment is completed depending on your child’s needs.

Who can access the port?

Nurses within the Oncology Unit and Accident and Emergency Department are specially trained to access ports as well as some other staff identified in other units throughout the hospital.

Port Removal

When it is time to remove the port, it is removed under a general anaesthetic, by a surgeon in Theatre.

Your child usually will be discharged on the same day.

There will be two small scars, one on the neck and one on the chest wall, after removal of the port. They will not disappear completely but they will fade with time.


Pain Management

Introduction

Effective pain management starts with believing in the pain that the child is reporting and to work with them and their family to achieve the best level of control that is possible.

“Pain is an all-consuming experience for a child and one which they often find difficulty in explaining to adults”

What is pain?

We all know ‘pain’ is a hurt we feel and only recently have we begun to understand how pain works.

Most parts of our body, both inside and out have “pain receptors”. When these are activated by pressure or damage to body tissue, a pain message is started. The message passes along our nerves to the spinal cord (in the backbone), and then to the brain. Our brain reads the pain message, and we feel pain.

Pain is also a very personal thing. Each person’s pain experience is different. For example, the same injury can cause very different amounts of pain in different people. As well, the same procedure can cause a different amount of pain each time it is done

Does cancer have to be painful?

If your child has cancer, you may be concerned that he or she may suffer a great deal of pain. Children’s cancer does not have to be painful and an important goal in treating them is to remove as much pain as possible. With the help of doctors, nurses, and other people caring for your child, almost all pain can be reduced or removed totally.

What causes pain in cancer?

1. Pain from disease

Disease pain is usually due to the pressure from cancer cells on a part of the body. As these cells are removed with treatment, the pain will be reduced or disappear. Your child may have other episodes of pain that may be related to cancer, or more simply just


the normal aches and pains of childhood eg tummy ache or toothache.

2. Pain from procedures

Children with cancer require frequent needles to check how well their treatment is working. These include finger-pricks, jelcos (needles put into a vein), lumbar punctures (spinal tap), bone marrow aspirations (needles into bone), and access to internal central lines (ports).

Until recently, it was not unusual for children with cancer to be very afraid of needles. Many say “that needles are the worst part of having the disease”. The good news today is that there are many ways to reduce this type of pain. The following are some examples of this:

Sedation—“deep sedation” or “conscious sedation”

• Deep sedation occurs when a child goes to theatre and is given a general anaesthetic. This usually happens with bone marrow biopsies or where several procedures need to be done at the same time.

• Conscious sedation is frequently used for lumbar punctures. Different types of drugs are given into a central line or port. The drugs used are (a) Fentanyl given to reduce pain during a procedure and (b) Midazolam (short acting sedative) given to reduce anxiety and to help the child forget the unpleasant parts of the procedure.

Emla and Angel cream

These are local anaesthetic creams and are put on the skin and covered with a clear dressing. Generally most effective if applied one hour prior to a procedure. They numb or “freeze” the area so that the needle is not felt.

These creams can be used prior to intra-muscular injections, lumbar punctures, insuflon insertion and port accessing.

You will be asked to apply one of these creams at home prior to coming to clinic for a procedure. A nurse will explain to you how this is done and answer any questions you may have.

3. Pain from treatment

Side effects from some of the cancer drugs may at times seem worse than the disease itself. Some drugs eg Vincristine may cause jaw pain or leg pain but are usually short-lived. Other drugs


can cause tummy pain and stop your child from going to the toilet (having their bowels opened). Some treatments (both drugs and radiation) can cause the mouth to become sore and ulcers to appear. Your child’s doctor will be aware of these possible side effects and be able to discuss ways to treat them and keep your child comfortable.

Whose job is “pain management?”

Parents, children and health professionals all have a job on the ‘pain management team’. This team works best when all members share information and ideas with each other.

Role of Parents

Parents are experts about their own child. As a parent, you probably know more about your child’s feelings and expressions than anyone else does. This means you should be asked about how your child might react to an event, before it happens, and also be involved in decisions about how your child’s pain is managed.

It is important to know that you can be with your child during most procedures. Children usually feel happier and more secure if they have a parent with them to talk to them in a soothing voice, hold their hand, or rub their forehead. You know best how to comfort your child, however we do not expect you to stay for the procedures that cause your child pain or discomfort, if you choose not to be there.

There are a few methods of distraction included later that you may find useful eg relaxation, diversion/distraction, play and hypnotherapy.

Role of the Child

Your child should be involved as much as possible in deciding how their pain will be managed. The age of the child will affect how much they will be able to do this.

Teenagers can be very active in managing their pain while infants will have very little direct involvement. Increasing a child’s sense of control decreases pain and increases cooperation.


Role of the health professional

The health team caring for your child has three main roles. First they are the experts in the treatment of your child’s disease and the control of symptoms such as pain. Second, they should be teachers, educating you and your child about disease, pain, and treatment choices. Third, they should be working as care givers providing support and assistance to parents and children.

Other team members may be involved with providing care for your child.

1. An acute pain team made up of a group of health professionals who have specialised in pain management.

2. A child psychologist a person who specialises in the mental, emotional or behavioural adjustment of children to their disease.

3. A play therapist who is trained to help your child to still enjoy playing whilst in hospital.

4. An anaesthetist a doctor who specialises in the control of pain during surgery and at other times.

What makes pain worse?

We know that some things make pain worse. Controlling any or all of these can help a child have better pain control.

Anxiety, depression, and fear: No matter how they are caused, negative emotions can make pain worse. If a child has had a bad experience with poorly managed pain, he or she will fear a procedure more and then experience more pain due to being anxious and not relaxed.

Lack of control: Children who are given a choice feel less pain than children who are not consulted eg choosing which finger to be used for a finger-prick.

How can pain be measured?

The best way to measure pain is to ask children how much pain they have in age-appropriate words or words they are familiar with. Three ways to help children to describe their pain by utilising pain tools are:

1. FLACC behavioural scale: A popular tool used for assessing pain in the pre-verbal and nonverbal child when a self-report is not available eg when a child is sedated post theatre or


has a learning disability. The behavioural indicators used in this scale are facial expression, leg movement, activity level, cry and able to be comforted. This scale is suitable for infants up to 7 years of age.

2. Faces scale: This scale shows different expressions from smiling happy face to frowning very unhappy face to depict the worse hurt. This scale is useful for children over 5 years of age.

3. Numerical scale: A simple way to measure pain is to ask an older child (8 years and above) to rate their pain from 0 to 10. Zero is “no pain” and 10 “as bad as it can possibly be”.

With children less than 4 years of age or those children with a mental disability, it is hard for them to tell us how much pain they are in. In these instances we need to observe for changes in behaviour.

Behavioural measures: Changes in how children act may be a clue that they are in pain. Behaviours that suggest pain include crying, fussing or being irritable, avoiding people, sleeping poorly, having a “pain face”, holding or protecting a body area, not being easily comforted or distracted, not eating well, not playing and not being able to concentrate. Some children in pain may become very withdrawn and quiet or they may become angry and physical and not able to communicate verbally.

Children differ in the way pain effects their behaviour. Parents are often able to see changes that mean pain more readily than doctor or nurse because they know their child and how they have reacted previously to pain.

How can we control pain?

Pain is a very complex issue; using several methods of pain management at the same time works well eg a child having a lumbar puncture may find it helpful to combine relaxation techniques with Emla cream and a sedative (midazolam).

Psychological methods

Give explanations

Children need to know what is happening to them. They should be given explanations about what they will feel, hear, and smell in a way they can understand. Younger children are often helped by


using a doll to show what is to be done, but adolescents may respond better to diagrams.

Individualise approach

Each child is an individual. Something that helps one child may not help another. Some children like to know exactly what is going to happen during a procedure. Others want only a few details. Some children like to know things a long time in advance, while others like to find out closer to the time. As a parent you will have a good idea how your child might react. Older children and adolescents should be asked directly what they prefer.

Be honest

It is always a mistake to lie to a child about pain. Children who are wrongly told a painful treatment or procedure won’t hurt will have no trust the next time. Children’s fears and pains should also be accepted. For example you could say, ‘I know this medicine stings when it goes in’, followed by but if you take a breath and blow out slowly, it may hurt less!

Give positive feedback

Children respond well to praise. Co-operative behaviour should be encouraged. Statements like: “I was pleased to see you trying to stay still” or “it was good you told the nurse exactly how you were feeling’ can be helpful.

Relaxation Instructions

Relaxation techniques can be taught by a psychologist, nurse or other professional and are useful in reducing anxiety, nausea and pain. Young children may relax better by involving them in their favourite story.

Imagery

Children can use their imagination to change from being anxious and frightened to being calm and relaxed. Absorbing and focussing the child’s attention on a favourite past activity or storytelling can help.


Play

Play is an essential part of every child’s life. Playing allows children to understand their world. Children relax and forget their worries when they play. Remember though that a child who is playing may still be in pain.

Distraction

Distraction is especially helpful for short pain, such as pain from a finger prick. All children respond to distraction when it is age-appropriate.

Infant’s 0-1 year: Rocking, stroking, patting, use of soother, food, music, soothing talk, new or favourite toy.

Toddler 1-3 years: Rocking, stroking, patting, use of food, music, soothing, self-talk, noisy toys, mobiles and favourite stories read by parent or on tape.

Preschool and School-aged: Self talk, relaxation exercises, control, bubble blowing, music or stories on tape.

Adolescent: Problem solving, Self talk, relaxation exercises, control and conversation.

All of the above methods of distraction are examples and should be made use of from the onset of treatment, following discussion with child and parent as to the best ways to distract their child and a plan implemented. This can be in consultation with play therapist and if necessary the child psychologist.

A distraction basket is located in both the Clinic and Brookman treatment room. It contains goodies such as bubble blowing, pinwheels, Tickle Me Elmo that may help distract the child during procedures.


Hypnotherapy

Children have a high capacity for hypnosis and can quite readily learn how to use self-hypnosis to help control pain, anxiety, needle and other procedural phobias.

We have the availability of a hypnotherapist here at the hospital, if you are interested in this method please discuss this with your doctor.

Physical Methods

A number of physical methods can be useful in controlling some types of pain.

Massage

Gentle massage or stroking can be very calming and soothing for a child. There are many specific methods of massage, but it is best to do what your child finds most effective.

Heat and Cold

Icepack or hot-pack may be useful for disease, muscle and procedural pain.

Pain Medications

The following are examples of some of the most commonly used pain medications.

Mild to moderate pain:

Paracetamol-----given 4-6 hourly when required.

Naproxen and Ibuprofen----given 2-3 times a day, often used for bone pain.

Moderate to severe pain:

Opioids (also known as narcotics):

Codeine (mild opioid/narcotic)-----given 4-6 hourly when required.

Morphine (stronger opioid)-----frequency dependent on route and type of product used eg by mouth, through the skin or into a vein).

Fentanyl (stronger opioid)-----given either under the skin, into a vein or via a patch (gives a steady dose of the medicine through the skin).

Oxycodone (stronger opioid)-----given by mouth 4 hourly or 12 hourly.


Ketamine-------used to enhance the effects of the morphine in controlling pain. Given into a vein.

Gabapentin-----used for the treatment of nerve pain. Given 12-8 hourly.

Amitriptylline-----used to help with excessive anxiety. Given 12 hourly.

Above all it is important to discuss your child’s individual needs for pain medication with nursing and medical staff.


Nutrition and Cancer

Children need good food to stay healthy and to grow well. For children who have cancer, this is especially important. Good food will

• Help with healing

• Protect against infection

• Help your child cope better with the treatment

• Help your child to keep growing normally

Sometimes, children with cancer may not eat well and lose weight. The following section talks about some common issues and how to deal with them. If you wish, you could meet with the dietitian to talk about any problems or concerns that you have about your child’s eating.

Does anything in the food cause cancer?

No. Many parents are worried that certain foods the child eats may have actually caused the cancer. There is no evidence that this is true. Some adult cancers are thought to be linked to diets, which are high in fat and low in fibre (eg bowel cancer), but there is no evidence that food has any effect in childhood cancers.

Can the cancer be treated with a special diet?

No – in fact special diets that are too strict often make it hard for your child to eat enough food to grow properly. There is a lot of information around about certain diets or supplements that claim to cure cancer or to be an alternative treatment. Most of the claims are untrue or misleading. It’s best to discuss any particular diets or supplements with your doctor or dietitian.

So what is the best food for my child?

Children need a variety of foods every day. Choose from the five food groups shown in ‘The Australian Guide to Healthy Eating’

1. Bread, cereals, rice, pasta, noodles

2. Vegetables, legumes (eg baked beans, lentils, chickpeas)

3. Fruit

4. Milk, yogurt, cheese


5. Meat, fish, poultry, nuts, legumes

The guide above shows healthy foods, which provide your child’s body with the nutrients needed. “Extra” foods such as chocolates, chips, soft drinks etc can be added for treats but shouldn’t replace healthy foods.

During times of illness these “normal” guidelines may need to be adjusted for individual needs. It is important to keep “meal times as normal as possible and avoid treating brothers and sisters too differently. At times, however family “routines and rules” do get broken.


Some common problems

Loss of appetite / Not eating enough

This is a common problem during treatment.

• Often it helps to offer small frequent healthy snacks rather than 3 large meals a day

• Nourishing drinks that can be sipped slowly throughout the day can also be useful.

• Keep serve sizes small as large serves can put off children.

• A healthy diet for children does not need to be low in fat. Fat can be a valuable source of energy (Kcals)

Healthy High Energy Snack Ideas

Crackers with cheese and butter, or peanut butter or cheese spread

Pikelets or pancakes with jam or chocolate spread

Quick cooking noodles with lots of butter or cream and grated cheese

Icecream in a cone

Corn chips with melted cheese

Dips (eg avocado with sour cream or cream cheese base) served with chips or vegetable

Try sweet dips (eg cream cheese and chocolate or chocolate spread) with little sweet biscuits or chunks of fresh fruit

Banana cut into rounds and rolled on coconut or powdered chocolate flavouring such as Milo

Waffles or jaffles

Toasted fruit bread with lots of butter

Soup – try cream based ones like pumpkin or cream of tomato

Dried fruit and nuts (if over 5 years of age)

Little tubs of custards or yogurts – stir in a teaspoon of cream for extra calories

Healthy High Energy Drinks

Milkshakes –use full cream milk and add icecream and flavouring


Fruit smoothies – try a banana or strawberries vitamised with milk

Yogurt smoothies – try a mix of fruit juice, yogurt and fresh fruit for a tangy drink

Commercial products eg Sustagen

Polyjoule is a white powder that is sometimes used to add extra energy to a child’s food. It is similar to glucose, however it has no taste and doesn’t effect children’s teeth. It can be added to drinks and semi-liquid foods like custards. Polyjoule only adds energy, not other nutrients such as protein or vitamins. If your child needs polyjoule, the dietitian will explain how to use it.

Nausea and Vomiting

Once again, this is a common problem during treatment.

• Small frequent meals are best.

• Sipping drinks over the day can also be useful.

• Often just waiting for a few minutes after the vomit or once the nausea settles and trying again can work

• Some children prefer cold foods without much smell eg jelly, fruit juice, biscuits etc.

• Avoid fatty and spicy foods such as chips, pizza, fried foods and chocolate until the nausea has settled although taste preferences do vary and many children tolerate salty foods quite well

• Fun distractions or activities while eating may help

A word about food and behaviour

Many parents naturally get worried and anxious when their child is not eating. This can often lead to battles around food and meal times. Force feeding, nagging or bribing usually only makes the problem worse. Try not to fuss too much or show the child how concerned you are.

• Keep meal times pleasant

• Try fun activities such as picnics, video nights or party settings with the child helping to choose the foods served. With the emphasis on the activity and not the food the child may eat more.

• Praise efforts to eat food even if only a little is eaten


• Be gentle and encouraging and try not to let them see if you are anxious - don’t hover placing undue stress by watching too closely

• Share family meal times together – seeing other people eat can encourage children to eat at the same time. Don’t worry if your child doesn’t want to stay at the table the whole time.

• Make the most of times when your child is feeling well to really boost his/her intake.

Sore mouth

This is a common side effect of treatment, which can effect your child’s eating.

• Try soft foods such as custard and yogurt, scrambled eggs, mornays, mashed vegetables with butter, and icecream.

• Remember to add extra butter or cream or grated cheese to whatever foods you can if your child can manage this.

• Nourishing drinks that can be sipped slowly are also useful – see drinks section.

• Avoid foods that might sting eg citrus juice or very salty foods

• Avoid rough foods like toast or foods that may require a lot of chewing.

Taste Changes

Taste changes are common during treatment. This can be confusing for a child when they find their favourite foods taste different.

• Encourage your child to try different foods and flavours. Foods that your child previously didn’t like may now be preferred.

• Strongly flavoured foods such as vegemite or pizza may be preferred. There is usually a preference for salty foods

• Food Fads are common. Due to the taste changes with medications a child may find only a few foods appetising so they choose a limited variety. These fads are often shortlived so it is good to be flexible yet gently encourage alternatives regularly.

• Preferences can change from day to day, which can be frustrating for those providing the food. Try to keep a range of


“favourite” foods available so you can hopefully find at least one suitable alternative.

Nasogastric (or Gastrostomy) Feeding

Sometimes if your child has lost a lot of weight or is not eating very well, nasogastric feeding is needed. The doctor or dietitian will discuss this with you. A soft plastic tube is passed through the nose to the stomach. A special feed (formula) is then dripped in slowly through the tube often as an overnight feed while they eat normally during the day. This will provide your child with extra nutrients that he/she needs. A nasogastric feed can make it easier and less stressful for both the parents and child in their efforts to eat enough. Don’t be discouraged by the appearance of the tube or the concern of discomfort. Many parents describe tube feeding as a very positive step in maintaining a healthy weight. Medications may also be given via the tube.

If feeds are required for a prolonged period of time a gastrostomy tube can be placed directly into the stomach and feeds given in the same way.


Hypnotherapy

Some children find the injections and the vomiting that may be caused by chemotherapy, become increasingly difficult to cope with. Some children benefit greatly by learning relaxation techniques or using imagery learned through hypnotherapy. These new skills can help the children feel they have some control in the area of treatment.

Children as young as four year old can be helped by these methods. They are best introduced early in the course of treatment. Some parents have used relaxation and meditation to assist them through this stressful time. If you would like more information and feel that your child may benefit from some additional help, please discuss this with a member of the Oncology team.


Complementary Therapies The term ‘complementary therapy’ is used to describe all therapies that are not part of Western conventional medicine.

Complementary therapies have three main themes to their use:

• Treatment is holistic - taking into account the physical, emotional, spiritual and social aspects of an illness.

• Focus is on the prevention of illness and treating the cause of the symptoms.

• Regimens are individualised and designed to support natural healing processes.

There are many types of complementary therapies. This list is not exhaustive to be definitive, but can be categorised into four areas:

1. Mind-body therapies like yoga, reiki, meditation, therapeutic touch or positive imagery techniques.

2. Traditional medicine systems which include Chinese medicine (eg. Acupuncture and herbal medicine), naturopathy, homoeopathy and Ayurveda (an Indian system that incorporates diet, exercise, herbs, meditation and lifestyle modifications).

3. Manual handling techniques are widely used, and include chiropractic work, reflexology and massage.

4. Diet and nutrition therapies may also be used such as megavitamin supplements, antioxidants or the popular ‘macrobiotic’ diet.

Why do people use complementary therapies?

Complementary therapies may be attractive to people with illnesses such as cancer. The reasons that people decide to use complementary therapies may include:

• They want to take charge of their own health care decisions.

• They have a preference for ‘natural’ remedies.

• They are dissatisfied with conventional treatments.

• They may offer the patient or parents hope.

• Pressure from well meaning friends and relatives to try miracle cures.


Despite this, if conventional therapies offer a proven benefit, substituting a complementary therapy in its place may result in serious or fatal consequences.

Complementary therapies in cancer

Many people use complementary therapies in the treatment of cancer because the people supplying the therapy offer the person hope of a cure. Cancer sufferers are frequent users of complementary therapies either to cure or improve their condition or to help ease the side effects associated with their conventional treatment.

Although many people claim that complementary therapies may improve or cure certain cancers, there is often no scientific evidence for these claims.

Complementary therapies that can be a useful addition to conventional cancer treatments are massage, aromatherapy or meditation.

Some complementary therapies may interfere with conventional treatments. It is important to always tell your doctor if you are using or intend to use any complementary therapies.

Are complementary therapies effective?

Most complementary therapies await scientific proof of benefit in the prevention or treatment of diseases such as cancer, but there are some studies that show complementary therapies may play a role in the treatment of various diseases.

Are complementary therapies safe?

There is a lack of scientific proof that complementary therapies are safe, however many therapies have been used for centuries by health practitioners. A few therapies have been shown to cause physical harm and occasionally death.

Always check with your doctor before using any of these therapies to ensure your child’s safety.


Many complementary therapies may be costly or involve a lot of time and effort. If you choose to consult with an alternative practitioner, always ensure they hold relevant qualifications.

Suggested questions for investigating a specific therapy

• Ask the therapist or advocate of a therapy what it can offer you?

• How will it improve your health?

• How much time and money is involved?

• Are their side effects?

• What is the failure rate?

• Will it interfere with conventional treatment?

• Has the treatment been tested in clinical trials?

• What is the therapist’s qualifications and are they recognised in Australia?

Where can I get more information on complementary therapies?

• A health professional ( eg pharmacist, doctor or nurse)

• An appropriately qualified and registered neuropath

• Your local Library

• The Drug Information Service at your local hospital

• The Internet has many sites for information, remember to check the accuracy of the information with your doctor.

• The Department of Human Resources

• The Cancer Council – SA

• Cancer Care Centre, Unley

Documents

Types of Treatment - Women's and Children's HospitalMost children who have chemotherapy will receive a number of different drugs that work together to fight the cancer. Cancer treatment