Kenzies Gift Journey Kit

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Information Book

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Kenzie’s Gift PO Box 13224 Tauranga 3141

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Phone: 027 345 2514 Email: hello@kenziesgift.com Web: www.kenziesgift.com

First published 2011 Second edition 2019 ©Kenzie’s Gift

3 Yo u r J o u r n e y K i t f r o m K e n z i e ’ s G i f t …

A note from Nic Russell, Director Kenzie’s Gift The first few weeks after a cancer diagnosis can be very stressful. Your family has received some emotionally difficult news and there is an overload of information coming at you, all at once, from many different areas.

The resources inside the Kenzie’s Gift Journey Kit are designed to help and support you, your child and family as you embark on this challenging journey together.

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A fun-filled Diary for your child

When used in combination, the three printed items can provide you, as parents or caregivers, with summaries of information about the diagnosis and treatment of child cancers, some tips for coping, useful ways to organise important medical details for your child, and much more.

The Diaries and Book are conveniently sized to fit into your bag and can be taken to appointments and on hospital visits. Your child will enjoy filling in their own Diary with space for drawing pictures, pasting in photos and writing down other details that may be important for them.

I established Kenzie’s Gift to honour my own daughter, Mackenzie, and the journey our family experienced after her diagnosis of child cancer at the age of three. I am fortunate to have a team who share a commitment and dedication to help other parents and children cope with their own journeys and we hope that you will find the resources in this Pack helpful.

MacKenzie’s by-line was ‘live it, laugh at it, love it.’ Through Kenzie’s Gift, we hope to improve outcomes for family and whanau, restore brightness of spirit and inspire hope for positive futures.

Nic Russell Director, Kenzie’s Gift

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A Diary for Parents

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A comprehensive Information Book for Parents

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In the Pack you will find a letter of support from Kenzie’s Gift Ambassador Nigel Latta and:

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A note from Nigel Latta, Ambassador for Kenzie’s Gift Kenzie’s Gift helps children and young people cope with the personal and family stresses that arise when either a sibling or parent is diagnosed with cancer.

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Their community programmes provide strategies and therapies designed to address the trauma, emotional and psychosocial issues surrounding cancer diagnosis and survivorship. There is an immediate need for medical and psychosocial support for the child but the need to support siblings and parents is also vital to ensure the family can cope with the trauma associated with a cancer diagnosis.

The services and resources offered by Kenzie’s Gift are informed by current, evidence-based best practice for the provision of psychosocial care and support for children and young people and are delivered by registered Adolescent and Child Psychotherapists who are well qualified, skilled and passionate about the work they are doing within the community.

I applaud Kenzie’s Gift founder and director Nic Russell. Ms Russell has endured the tragic loss of her own daughter to cancer and has, with courage, tenacity and determination, used this experience to help other parents and children who are sharing, or have shared, a similar journey.

The development of the Journey Kit by Kenzie’s Gift clearly demonstrates their ongoing commitment to invest in and support the future of our children, our families and whanau and I feel sure you will find reassurance and value from the information provided here.

Yours sincerely

Nigel Latta

Nigel Latta is a Clinical Psychologist and Author. He lives in Auckland with his wife and two children. For more information please visit Nigel’s website www.goldfishwisdom.org

5 About Kenzie’s Gift

A diagnosis of cancer can be devastating for families, especially when it is a diagnosis of child cancer.

There is an immediate need for medical and psychosocial support for the child.

Siblings and parents need support too so they may find ways to cope with the trauma associated with a cancer diagnosis.

Kenzie’s Gift offers community services and support for families and whanau living with a diagnosis of, or bereavement from, cancer. We support children diagnosed with cancer, their siblings, and children whose parents may be experiencing cancer.

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We hope that you will find this booklet helpful. Please contact us for more information about our services. We’re here to help.

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We provide age appropriate one on one therapy for young children and teens conducted by our team of registered Adolescent and Child Psychotherapists, and support parents by offering advice and practical information. Our services are endorsed by well known Clinical Psychologist and author Nigel Latta.

6 The first few days …

These days may feel like the longest of your life, a waking nightmare from which you hope you will soon awaken and everything will be as it was before you heard the words, ‘your child has cancer.’

The diagnosis has brought your world to a stop. The doctors are using words that are new to you and describing a disease that has always happened to someone else. The question you ask is, ‘Will my child die?’

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You may feel shock, distress, disbelief, fear, sadness, anxiety, confusion, exhaustion, anger, worry, pain, denial, guilt … and these feelings and emotions may happen one at time or all at once.

This is normal and OK. There are some things to remember right now: - The team looking after your child will do their very best to successfully treat the cancer and explain the benefits and side-effects. It is important not to lose hope.

- Take some time to sit down, read the information you’ve been given, begin the process of understanding what needs to be done.

- Your family and friends are there to love and support you. Reach out to them.

- Kenzie’s Gift is here to help you, your child and family cope throughout this journey. Based upon our own experiences and those of the people Kenzie’s Gift has helped, we have put together some information in this booklet that we hope will inform, support and reassure you.

Have a look through the list of contents on the opposite page and if there is anything we’ve missed, let us know. If we cannot provide what you need, we’ll point you in the right direction.

7 What is cancer?

- What causes cancer?

Diagnosis - Why do we have so many tests?

DIAGNOSTIC PROCEDURES

Childhood cancers - solid tumours - leukaemia

Treatment

The hospital

- getting to know your way around - people to know

Help for parents -

it’s OK to feel … keeping yourself sane talking to extended family and friends talking to your other children talking to your child

Education - during treatment - returning to school

Moving forward “You can get back to normal now!”

Child cancer support organisations Some medical terms

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COPING WITH SIDE EFFECTS

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Along the way …

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surgery chemotherapy radiotherapy bone marrow transplant

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So let’s begin …

8 So let’s begin …

There are some practical things you can do, starting ‘now’ Understanding can be the foundation for coping. Listen carefully to the information given about your child’s illness and the treatment options. Ask someone to go with you to upcoming appointments so they can take notes and debrief afterwards with family and supporters.

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If something you are told is unclear, ask for further explanation until you fully understand. Remember you can always seek a second medical opinion. Ask questions. Write them down as they come to you and don’t be afraid to ask them at consultation time. Your Kenzie’s Gift Parents’ Diary has space for noting questions and answers.

Take a tape or digital recorder to appointments. Most specialists are happy for you to record the discussions. Use your Kenzie’s Gift Parents’ Diary to note down times/dates for upcoming appointments and treatment times Read as much as you can about your child’s cancer. Some helpful websites are listed at the back of this booklet. Ask questions about anything you see on the internet or in a book that you are not sure of.

If English is not your first language or you have a hearing difficulty, ask your specialist to arrange for an interpreter or someone who can help with language and hearing problems.

Caring for yourself is important too

Look after your own health. You need to be strong and healthy for your child right now.

Talk to someone who has experienced what you are about to face. Perhaps you know someone whose child has experienced cancer. Contact details for helpful support organisations are listed in the back of this booklet. Talking to someone who has ‘been there too’ and knows how you feel can really help.

Take some ‘time out’ for you. Of course you want to be with your child 24/7 but it’s OK to take a break. You need to have a breather and no one will think less of you for spending some time away from your child Accept offers of help from family, friends and colleagues. You may be away from home for long periods of time so it’s nice if extended family can stay with your other children, a neighbour can provide dinner for the family, or friends offer to sit with your child in hospital so you can have a break. People will want to help. Let them.

Don’t be afraid to ask for help. Sometimes people want to help but don’t know how. If you need someone to pick up your other children from school, ask a friend to do this for you. They will be happy to feel needed and know they are helping.

9 What is cancer?

Approximately 150 New Zealand children under 15 years of age are diagnosed each year with a childhood cancer. More than 80% of these children will survive. (Ministry of Health 2011) The cell is the building block of life and cancer is a disease of the cell.

Each cell contains a set of instructions telling it to carry out a certain function within the body. Some cells are programmed to build our organs, others our bones and muscles and some are on ‘standby’ to heal a wound, fight infection or replace diseased cells. There are over 200 different types of cells and so there can be over 200 different types of cancer.

Whilst cells may do different things, they all divide and reproduce in similar ways.

- Nothing you or your child did or did not do caused the cancer. Please do not feel guilty because neither you or your child are responsible for the cancer.

- Most cancers are NOT caused by an inherited gene from the parents and it is very rare for a second child in the family to develop cancer.

Child cancers differ from adult cancers because they occur in different parts of the body and respond to treatment in different ways. In general, the causes of childhood cancer are still not known. Some research suggests cancers may begin at the foetal stage, inside the womb, where cell division is rapid. Other research investigates environmental factors (exposure to toxins) or the contracting of viral infections. The percentage of childhood cancers inherited from parents is very small although certain genetic conditions such as Downs Syndrome can increase the risk of leukaemia and retinoblastoma, a rare form of eye cancer.

Survival rates for childhood cancer have improved dramatically over the last 50 years.

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It is important to remember that: - Cancer is not contagious (infectious) so your child did not ‘catch it’ from someone nor can they pass it on to anyone.

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What causes cancer?

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The most common childhood cancers are solid tumours and leukaemias. You can find more information about these cancers on page 12, Childhood Cancers.

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Sometimes the division and reproduction process goes wrong and ‘abnormal’ cells are produced. These cells are unable to carry out their instructions and are called ‘cancer’ cells. They continue to reproduce and group together to form solid tumours, causing problems by pressing onto surrounding organs and tissues.

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During division and reproduction, a healthy cell will make an exact copy of itself. One cell becomes two, two become four, four become eight and so on. When our bodies are growing, cells divide more rapidly. A healthy cell reproduces a certain number of times before it dies naturally but will die prematurely if it is damaged or finds itself in the wrong place (for example, a liver cell finds itself amongst bone cells).

10 Diagnosis You may have noticed that your child was more tired than usual, lacking in energy, quiet and withdrawn. Perhaps he or she was complaining of headaches or pain or just saying to you, “I don’t feel well.” A visit to the family doctor for a check-up was followed by a hospital referral to see a specialist, perhaps a paediatrician, a paediatric oncologist or a haematologist. Now you have received news you never expected or wanted to hear: a diagnosis of cancer for your child.

Right away the doctors are recommending ‘tests’. There can be a confusing number of these with unfamiliar names and purposes. Let’s talk about the diagnostic procedures now.

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Why do we have so many tests?

Tests are needed to give an accurate diagnosis of the cancer. As we mentioned earlier, there are many different types of cancer so the specialists need to know exactly what type of cancer your child has so they can determine the best treatment. The information gained from tests can then be shared amongst the medical team looking after your child.

The tests will also determine the stage and the grade of the cancer and provide an overall assessment of your child’s general health.

Waiting for tests to be scheduled, completed and results known can be a difficult time. You want the best outcome for your child and for treatment to start right away. Waiting for tests to be scheduled, completed and results known can be a difficult time. You want the best outcome for your child and for treatment to start right away. Being patient can be hard but all the necessary information is needed from the tests to ensure the correct diagnosis is made and the most appropriate and effective treatment is given to your child.

Use your Kenzie’s Gift Diary to record test results and other information.

Diagnostic procedures Your child may not have all of these procedures but we provide an overview for your information. Some of these tests may be conducted only once or, as your child goes through treatment, certain tests may be done more frequently to monitor the effectiveness of the treatments.

You may ask to see (and have copies made) of the results of any tests conducted. You may also request that results be sent to your GP too so he or she has a complete record of your child’s diagnosis and treatment. A team of specialists (a multi-disciplinary team) will be caring for your child in hospital so having records all in one place, with your GP, can be helpful in the future.

11 Biopsy A small part of the tumour is removed either with a special needle inserted through the skin into the tumour (a needle biopsy) or during a small operation (an open biopsy). The sample is then tested in the laboratory to determine what type of tumour it is (it may be ‘benign’ or ‘malignant’ (cancerous) – a list of common medical terms can be found on page 36).

Bone marrow aspirate If a leukaemia is suspected, a needle is inserted into the bone of the hip and a small amount of the bone marrow is removed. This test is done under sedation or general anaesthetic to ensure as little discomfort as possible. The bone may feel sore for a few days after the test. The sample is then examined in the laboratory and provides information about the type of cells in the bone marrow, whether any are malformed and immature and if there is an imbalance in the cells being produced.

Blood tests Blood tests are carried out before, during and after treatment has finished as part of follow up consultations. The samples are sent to a laboratory for analysis and reporting. The reports are then returned to your specialist.

There are many reasons for blood tests and some include: - testing for infection

Blood chemistry Determines how well the body’s systems are functioning, such as the liver and kidneys.

Blood cross-match Used to find blood from a donor that is a match for your child in case a blood transfusion is needed.

Blood culture Provides evidence of infection.

Lumbar puncture In some cancers such as leukaemia, lymphoma (cancer of the lymphatic system), and occasionally brain tumours, cancer cells can pass into the fluid surrounding the brain and spinal cord. This fluid is known as the cerebrospinal fluid or CSF. A needle is inserted between two spinal (vertebral) bones in the lower spine and a few drops of the CSF fluid are taken. This test is usually done under a general anaesthetic.

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Common blood tests are: Full blood count Quantities of different types of blood cells are counted. This is important for monitoring the side effects of treatments.

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- to see if your child has had viruses in the past such as measles or hepatitis.

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- to detect the tumour ‘markers’ in the blood (tumours create hormones or proteins that can be found and measured in the blood; these markers can help determine the type of tumour present and also how the tumour responds to treatments)

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to monitor how the body’s systems are doing (e.g. liver)

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12 Diagnostic procedures cont’d...

X-rays X-rays are taken when solid cancers (tumour) are suspected in the chest, bones or abdominal area. A tumour can look different from healthy tissue under an x-ray.

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CT (computerised tomography) scan The CT scanner takes a series of x-rays of the soft tissues and a computer builds up a three-dimensional picture of the inside of the body. The CT is painless but your child may be given a sedative or anaesthetic to ensure they lie still throughout the scan.

MRI (magnetic resonance imagery) scan Similar to the CT scan, the MRI builds up a series of pictures of the inside of the body using magnetic waves. The scan is painless but very noisy. Your child lies within a narrow tunnel and may be given a sedative or general anaesthetic to calm them and ensure they lie still during the procedure. Earplugs or headphones (they can listen to their favourite music) are given too and it may be possible for you to remain in the room with your child during the scan.

Ultrasound Sound waves (too high for us to hear) are used to build up a picture of the inside of the body. The technician will spread warm gel on the area of the body to be scanned and a small handheld device is passed over the area. Ultrasound scans are painless and often used to examine the abdominal area and the heart.

Bone scan A small amount of a radioactive substance is injected through a vein, usually in the arm, and is taken up by the bones. Areas of abnormal bone absorb more of the substance than healthy bone and so show up under the scan as ‘hot spots’.

Childhood cancers The most common cancers in children are solid tumours and leukaemia Solid tumours Sometimes the division and reproduction process of our cells ‘goes wrong’ and ‘abnormal’ cells are produced. These cells are unable to carry out their instructions and group together to form solid lumps called tumours. Tumours can be either benign (non-cancerous) or malignant (cancerous).

Cells in a benign tumour cannot spread to other parts of the body but they can keep growing at the original site and press on surrounding organs and tissues.

13 Cells in a malignant tumour can spread beyond the original tumour site into surrounding tissue or to other parts of the body. Malignant cells travel throughout the body in the bloodstream or the lymphatic system and begin to divide and grow to form tumours in other areas. This is called ‘secondary’ or ‘metastatic’ cancer.

Malignant tumours are classified by stage and grade. You may have heard these words being used. The stage relates to how far the cancer has spread in the body and the grade describes the type of cells contained within the tumours.

Cancer stages: Stage 1: the cancer is small and localised and has not spread beyond the original site Stage 2 or 3: the cancer has spread into surrounding tissues/structures Stage 4: the cancer has spread to other parts of the body (secondary or metastatic cancer) Leukaemia The most common cancers in children are those of the bone marrow. This type of cancer is known as leukaemia. The bone marrow is a spongy material found in the centre of some of our bones and it produces all of our blood cells.

There are three types of blood cells:

The large number of immature cells inhibits the production of healthy, mature blood cells. This reduces the body’s ability to fight infection. Production of red cells and platelets is lessened too and this can result in anaemia and significant bruising.

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Leukaemia occurs when the marrow creates a large number of immature blood cells. These cells cannot perform their functions properly because they cannot grow to maturity. The word ‘leukaemia’ refers to white cells as the disease usually affects their production. Acute Myeloid Leukaemia affects the early white myeloid blood cells and Acute Lymphoblastic Leukaemia affects the lymphoblasts (early lymphoid white blood cells).

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Red, white and platelet cells grow from ‘stem’ cells within the bone marrow.

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- platelets that clot the blood (control bleeding)

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- white blood cells that fight infection

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- red blood cells that carry oxygen

14 Tr e a t m e n t Your specialist will advise a treatment plan based upon all of the information gathered from tests and surgery.

If English is not your native language or you have a hearing difficulty, ask the Hospital to provide an interpreter or someone to assist you. It is extremely important that you fully understand all aspects of the treatment your child will receive.

There are currently three main ways of treating your child’s cancer: - Surgery where the tumour is removed in a surgical operation (localised at the cancer site)

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- Chemotherapy where cancer cells are killed with anti-cancer drugs (systemic, whole body) - Radiotherapy where high energy rays are used to kill cancer cells (localised at the cancer site) There is no one single treatment plan that fits everyone because we are all unique. Your child will receive an individualised treatment plan based upon the stage and grade of their cancer and their overall health.

Your child may receive a combination of treatments, for example chemotherapy and radiation. In this section we will also discuss Bone Marrow Transplant.

Don’t be afraid to ask questions about the treatment plan: what are the names of the drugs to be used and the dosage frequency? What side effects can be expected, both short and long term? Who will be administering treatment and where in the hospital will it be given? You may accompany your child to treatment and don’t hesitate to query the medication being given, checking the labels to be sure it is for your child (whilst mistakes are rare, they can happen).

Use the Kenzie’s Gift Diary to write down questions and make notes.

Your specialist will meet with you to discuss the treatment plan and he or she should: - describe the plan in ‘easy-to-understand’ terms - outline the benefits, risks and potential side effects of treatments - describe any other types of treatments that may be appropriate - repeat the information as many times as necessary so that you completely understand - explain the consent process (you will need to provide your parental consent to the treatment).

15 Don’t be afraid to ask questions. Try making lists of queries and discussion points prior to appointments and take someone with you who can write notes while you discuss your child’s case with the specialist. You can debrief later with your family and refer to the notes taken.

Surgery

Surgery will most likely be needed if your child has been diagnosed with a solid tumour. The tumour will be removed surgically during an operation while your child is under a general anaesthetic.

Surgery may be the only treatment required if the tumour is benign (noncancerous), or a small cancerous tumour is removed completely and there is no evidence to suggest the cancer may have travelled to other parts of the body.

Chemotherapy

‘Chemo’ = ‘chemical and ‘therapy’ = treatment.

What is chemotherapy?

As we’ve noted earlier, our cells are ‘born to divide’ and cancer cells are no exception.

These drugs target our healthy dividing cells too, like those in our mouth and skin and the cells powering our immune system. Chemotherapy treatment must be managed carefully to maximise the damage to dividing cancer cells, minimise harm to our healthy cells and reduce associated side effects. Such management may include using different combinations of drugs, varying the dosages of these drugs and administering the drugs at different times.

How is it given?

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Carried through the bloodstream, these drugs find cancer cells wherever they may be, even those that have spread from the original tumour site. Leukaemias need chemotherapy because, as cancers of the blood, the cancer cells are all through the body.

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Chemotherapy drugs are also known as ‘cytotoxic’ drugs because they damage or kill dividing cancer cells.

- Intravenously through the vein via a drip To minimise the distress of needles and injections, your child may be fitted with a Hickman line, also known as a ‘central’ line or ‘portacath’, to receive chemotherapy. Blood samples can be taken through the line too.

The end of the tube outside the body is sealed with a cap that is removed for administration of chemotherapy or for taking blood samples. The line is cleaned and examined regularly by the medical team, and remains in place for the duration of treatment.

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- By injection into the muscle or under the skin

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- By mouth, in liquid or tablet form

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Chemotherapy is given in one or a combination of three ways:

16 Tr e a t m e n t c o n t ’d . . .

What are the side effects?

The drugs used in chemotherapy are strong and your child may experience side effects. The number of side effects experienced and their duration and intensity varies for each individual and in this section we discuss some of the more common side effects. Your medical team will provide you with complete information and outline medical remedies and general tips for coping with side effects. Remember that most of the side effects will stop when treatment is finished.

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Use your Kenzie’s Gift Diary to write down appointments for treatment and also to record side effects experienced and their severity. This information is very helpful for the medical team when determining future treatments. If side effects become severe and if you are concerned, call your medical team right away. The Diary has a place for noting down those contact numbers too.

Common side effects are: -

Feeling sick (nausea) or being sick

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Diarrhoea and/or constipation

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Mouth ulcers

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Changes in taste – food doesn’t taste the same

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Hair loss

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Increased skin sensitivity and dryness

Chemotherapy targets reproducing cells so the production of blood cells can drop. ‘Blood count’ tests are conducted during treatment to monitor the effects of chemotherapy on the blood.

The number of red cells will be reduced. This is called ‘anaemia’ and can cause tiredness and feeling faint or dizzy. Anaemia can be treated with a blood transfusion.

Our white cells help us to combat infection and chemotherapy can reduce their number too. This is known as ‘lowered immunity’ and if the white cell count becomes too low, chemotherapy may be temporarily stopped to allow the cells time to reproduce. A reduction in white cells means your child may be more susceptible to infections such as a cold so it is important that you contact your medical team if you think your child is unwell. Prompt treatment with antibiotics can prevent the development of a more serious condition.

A low number of platelets can produce a condition known as Thrombocytopenia.

Your child may bruise more easily or bleed longer if they cut themselves. If platelets become too low, a platelet transfusion may be needed.

17 Radiotherapy

‘Radio’ = radiation and ‘therapy’ = treatment

What is Radiotherapy?

Radiotherapy uses high energy rays on one area of the body to destroy cancer cells (in solid tumours) and minimise harm to healthy cells.

All of our cells contain a set of instructions telling them what to do. These instructions are known as DNA. Radiotherapy destroys the DNA within a cancer cell, causing the cell to die and so shrinks the tumour.

How is it given?

Radiotherapy is not painful and each treatment session may last 5-10 minutes. It is similar to having an x-ray taken where your child will be asked to lie very still while the radiotherapy takes place. A mild sedative may be given if your child is unable to remain still.

Radiotherapy can cause a skin reaction around the area being treated, similar to sunburn and the severity of the reaction depends on the area being treated and the type of skin your child has. If you see this reaction on your child, advise the medical team.

Bone Marrow Transplant

As we mentioned earlier, healthy stem cells within the bone marrow mature into three types of blood cell: white, red and platelets.

The aim of a bone marrow transplant (also known as a stem cell transplant) is to replace abnormal bone marrow with healthy marrow so the body can produce normal blood cells again.

There are two main types of transplant and both procedures are complex and require extensive discussion about the risks, benefits and side effects.

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The side effects of radiotherapy are usually mild and fatigue can be one of the most common. Your child may feel very tired during the treatment course and for some weeks afterwards. Loss of appetite is also common.

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Treatments are scheduled daily, Monday through Friday, for a number of weeks, as determined by your specialist.

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During treatment, your child is placed on a couch and made comfortable. While treatment is taking place, your child is alone in the room but can speak with the radiographer in the adjoining room. You may sit with the radiographer too and speak with your child.

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Prior to the commencement of treatment, technicians may scan your child with a CT scanner or simulator to locate the area of the body to be treated. Marks may be drawn on the skin to help the radiographer (technician giving the treatment) locate the area accurately each time.

18 Tr e a t m e n t c o n t ’d . . .

There are two main types of transplant:

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Autologous: Your child’s own stem cells (bone marrow) are used as a supportive treatment for high-dose chemotherapy or radiotherapy (such intensive doses can damage the bone marrow, both the abnormal and healthy stem cells). Stem cells are collected and stored prior to high-dose therapy and then re-infused into the damaged bone marrow to encourage the production of healthy blood cells.

Allogeneic: Stem cells (bone marrow) are provided by a donor. High doses of chemotherapy are given to remove a child’s own marrow and the new marrow from the donor is transplanted. The healthy stem cells are administered via the central line. Isolation in a sterile facility is required after this procedure because your child will be exceptionally vulnerable to infection until their body can re-build a healthy bone marrow system.

The healthy stem cells are given via the central line. Isolation in a sterile facility is required after this procedure because your child will be exceptionally vulnerable to infection until their body can re-build a healthy bone marrow system.

Both transplant procedures are complex and require extensive discussion about the risks, benefits and side effects.

Coping with Side Effects Both chemotherapy and radiotherapy have a wide range of side effects and your medical team will ensure that all of these are explained to you. In this section we will cover those side effects most commonly associated with chemotherapy. The side effects from radiotherapy are covered on page 17.

Your child may experience some side effects and not others, or perhaps all but at different times with varying degrees of severity. The Kenzie’s Gift Diary can be used to record side effects: what they are, how severe they become and when they occur (for example, immediately after treatment or perhaps a day or two later). Recording this information will help you and your team manage the side effects and make your child more comfortable.

Your child may receive more than one chemotherapy agent. Different agents have different effects so be sure your specialist tells you which treatments your child will receive and describes the side effects normally associated with them. Responses to the agents may vary depending on the individual. Being prepared and knowing what to expect can be helpful.

19 Chemotherapy and radiotherapy target diseased cells but healthy cells are also affected.

If you notice any of the following symptoms becoming pronounced or worse, contact your medical team right away: - Temperature above 38 degrees, chills, muscle aches (could signal infection) - Weakness, feeling faint, difficulty breathing (could indicate anaemia) - Extensive bruising, bleeding gums, blood in urine or stools (indications that the blood is not clotting properly)

Common treatment side effects Feeling sick (nauseous) Chemotherapy and radiotherapy can make your child feel sick and also be sick (vomit).

If your child feels sick, see if they can sip liquids or nibble on dry toast or plain biscuits.

Avoid foods and drinks that are spicy, acid, sweet, salty or hot in temperature and try for foods that are bland and cold. If your child has been sick, then keep the fluids coming as best you can, giving small amounts at a time (even a teaspoon-full) until your child can manage more liquids and a little solid food.

Skin irritations Both chemotherapy and radiotherapy can cause rashes, redness, itching and general skin sensitivity so, in general, keep your child out of the sun, use a good high factor sunscreen, and cover exposed skin on face, arms and legs with hats and clothing. Your medical team can recommend appropriate moisturisers and creams. Most readily available creams and applications contain perfumes and other chemicals that may cause further irritation.

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Constipation and diarrhoea Chemotherapy, additional medications, lack of fluids and less activity than normal can all contribute to constipation and/or diarrhoea so encourage your child to drink plenty of fluids (warm water can be helpful). For constipation, serve foods that are higher in fibre such as raw vegetables, whole grain bread and dried fruits (for example raisins) and encourage your child to move about as much as possible or undertake some gentle exercise with you.

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Mouth ulcers Be sure to let your medical team know if your child develops mouth ulcers as they could become infected. Clean teeth gently and encourage your child to drink to keep the mouth moist. Avoid spicy foods or acidic/fizzy drinks which could irritate the mouth.

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Encourage your child to drink plenty of fluids. ‘Little and often’ may work best. Regular intake of fluids will reduce the likelihood of dehydration and also help the body cope with the medications. Cubes of ice or a fruit ice block can also help when your child finds drinking difficult. Keep some on hand in the freezer. Encourage small snacks during the day rather than large meals.

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Distraction can help so try reading to your child, listening to music or watching TV together.

20 Coping with Side Ef fects cont’d...

Hair loss A discussion with your child about hair loss may help you decide how best to manage this common side effect. Some younger children may choose funky hats and head scarves whilst older children may prefer to wear a wig. Be sure to provide hats outside in the sunshine and a warm beanie at night and during the day, if needed, as your child will feel colder.

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It is always best to decide how to approach the hair loss before it happens and sometimes cutting the hair short before it begins to fall can help your child adjust and feel ‘more in control’.

Long term side effects Some long term health issues have been linked to cancer treatments but it is important to remember that most children will not experience any of these problems. Your child will be monitored during follow up consultations and this can help to identify and manage any long term side effects.

The likelihood of long term side effects depends on the type of cancer and treatment given, the duration of treatment and the child.

Here we list some potential long-term side effects. You may wish to discuss these in detail with your specialist to see if they apply to your child.

Puberty and fertility/infertility Certain treatments may affect or delay the onset of puberty and affect fertility, specifically, some chemotherapy drugs and radiotherapy treatment to the brain, abdomen or pelvis (including testicles or ovaries). If your child has reached puberty at the time of treatment, tests can be conducted to determine any potential problems.

Some treatments can affect your child’s ability to have children of their own and this is difficult to determine until puberty. If your child has reached puberty, tests can be done to identify any problems.

It can be very distressing to think that your child may not be able to have children and this knowledge will be difficult for your child too, as he or she moves towards adulthood. Having open and full discussions with your specialist will help.

Growth and development Radiotherapy can have an adverse impact on your child’s growth in two ways: - Growing bones treated with radiotherapy may not develop properly.

- Radiotherapy to the brain may affect the production of growth hormone produced by the pituitary gland in the brain. Treatment with artificial growth hormone may be given.

Discuss the likelihood of this side effect with your specialist.

21 Intellectual development Most children recover fully after treatment and return to school with no learning problems at all. Lengthy periods of time away from school during treatment may cause ‘catching up’ difficulties but with some extra help, your child should be fine.

Some children who have received treatment for brain tumours may develop learning difficulties as a result and will need special help at school. Seek advice from your medical team about arranging this help for your child.

Heart, lungs, kidney function Both chemotherapy and radiotherapy can have effects on the efficiency of the heart and lungs and these effects may not become apparent until some time after treatment has finished. If your child is at risk, close monitoring during follow ups will reveal potential issues.

Some types of chemotherapy drugs can cause problems for the kidneys but these are usually not severe or long lasting.

Development of a second cancer

Getting to know your way around The hospital may be your ‘new home’ for some time so it’s a good idea to have a look around. Once you have your bearings, family members and friends will know where to come to visit (if appropriate) and you can focus on your child, working with the medical team to provide care, comfort and reassurance.

It’s good to know where: - visitor lounges / parent facilities are located - the restrooms are - the public telephone is - you can buy food and something to drink (hospital café, vending machines) - you can eat and drink in the Ward

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Your specialist will discuss this with you.

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- Some cancer treatments may increase the risk of other cancers.

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- A family may have an inherited risk factor for cancer (very rare).

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It is possible, but extremely rare, for a child to develop a second cancer later in life as a result of treatment for the first. There are two main risk factors for this:

22 T he Hospital cont’d...

It’s also a good idea to learn the names of the people looking after your child and their roles. Read name tags, note down names and titles and learn who is best able to answer a specific question, provide information or supply things you may need (for example: test results, food or drink for your child).

People to know

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You will meet a number of medical professionals in the hospital who are dedicated to providing the best treatment and care for your child. The Kenzie’s Gift Diary provides a section where you can write down the names of all the people involved in your child’s care.

A multi-disciplinary team of medical professionals will care for your child. This is a group of people who work within different areas of cancer treatment and ‘join forces’ to give your child the highest standard of care and the best treatment available. The team meets regularly to keep each other up to date on your child’s progress.

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Here are some of the people you will meet on your child’s team: Consultant: a doctor or surgeon who specialises in your child’s cancer and heads up the team.

Paediatric Oncologist: a doctor who specialises in the treatment of child cancers.

Surgeon: a doctor specialising in the surgery associated with your child’s cancer.

Registrar: a doctor who changes wards every 4-6 months. Oversees day-to-day care and monitoring of patients, meets regularly with Consultant and carries out medical procedures.

House surgeon/officer: a doctor similar to a Registrar who changes wards every 3 months. Organises day-to-day care, conducts medical procedures and reviews..

Oncology Nurse Specialist: a nurse who specialises in caring for patients with cancer.

Radiologist: a doctor specialising in use of x-rays and scans to help with diagnosis and treatment.

Play Specialist: helps your child prepare for treatment and provides therapeutic play.

You may also meet the following people from time to time: Dietician: provides advice on nutrition.

23 Physiotherapist: uses exercise to help your child improve physically after treatment.

Social Worker: provides an emotional and psychological assessment of your child and offers social, emotional and practical support post diagnosis and for as long as needed to the child, parents and siblings too.

Help for parents It’s OK to feel as if you are on a rollercoaster of emotions and feelings. One day you may feel strong and able to cope but the next you are falling apart. As well as learning about your child’s cancer and treatment, you may also discover more about yourself: understanding your response to a situation that has probably never happened before, feeling an intensity of emotion you never thought possible and finding a way to manage all of this so you can move forward.

Denial ‘This isn’t happening to us!’ It is hard to comprehend that your child has been diagnosed with cancer and sometimes we just ‘deny everything.’ That’s OK too.

Guilt ‘Was it something I did or didn’t do that caused the cancer in my child?’ ‘Am I being punished for something bad I did in the past?’ Nothing you have said or done, or failed to say or do has any bearing whatsoever on your child’s cancer.

Anger You might feel anger at your partner, your other children, extended family, friends, colleagues, God, doctors, nurses, the family dog and even your child who has cancer. You may say hurtful things to someone that you regret later or feel resentful of other parents whose children are healthy and well. You may

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Fear and anxiety Cancer is scary and when it happens within your family, you are always on high alert. Varying degrees of fear and panic are almost constant. It’s hard to know what lies ahead and that may make you anxious too.

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Mood swings You may want to throw rocks in anger one moment, cry your heart out with unbearable sadness the next. All of that is OK so let it happen. It’s better out than in.

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Most of us can find ways to cope but sometimes things become so overwhelming we just can’t. Don’t be afraid to get help from professional counsellors, support groups or friends. Often we just need someone to listen, to pick us up, dust us off and set us back on our feet.

24 Help for parents cont’d... become angry at friends who don’t behave as you expect them to or with all of the doctors and nurses for talking in such unfamiliar ways and putting your child through such difficult tests and treatments. All normal.

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Sadness You want your children to be healthy and enjoying life so when your child is seriously ill, you may become sad and feel completely overwhelmed by it all, hopeless and helpless. Cancer and its treatment have an enormous impact on everyone and it is OK to feel sad. Sadness can also make it hard to sleep and to eat. Support from those around you can help and a professional counsellor may provide a way forward too.

Keeping yourself sane!

You are so focussed on caring for your child that it’s easy to forget to look after your ‘self ’ too. Responsibilities to family, an employer and in other areas of your life still go on so it’s a lot to juggle all at once and we often place ourselves last on the list of priorities.

So what to do? It’s true you won’t have much time for yourself but there will be some and it’s important that you take it and make the most of it without feeling guilty or undeserving.

Here are a few tips: - Do something you enjoy, even if it’s just a cup of coffee with a friend or colleague, a beer with the boys, a walk on the beach or a hot bath with fragrant oils.

- Reach out to extended family and friends for help. Sometimes people don’t know what to do so tell them what you need, perhaps some baking for a family treat or picking the other children up from school.

- Accept that sometimes you will cope well but at other times you won’t. Don’t beat yourself up on the days when you just aren’t managing too well.

- Look after yourself. Try to eat and sleep well, exercise if possible and keep the lines of communication open with your partner.

- Keep up your usual interests as best you can. Socialise with friends and attend your book discussion group. Distraction from cancer is good for you and gives your friends an opportunity to see and support you.

25 - Take note of little joys during the day and file them away in a mental ‘treasure box’: the sight of a beautiful garden or a bright, laughing smile on your child’s face.

- Break seemingly impossible tasks or the length of a day into little steps and take one at a time. Reward yourself with a treat (a favourite chocolate bar perhaps?) when you accomplish a step - Learn and practice relaxation techniques such as deep breathing or meditation.

You can often do these wherever you are.

Ta l k i n g t o e x t e n d e d f a m i l y a n d f r i e n d s It may be difficult telling other family members, relatives and friends that your child has cancer. Every family is different and being open and honest can be a good way to start. Providing information and reading material you receive from the hospital may help others ‘get the picture.’ In general, the greater the understanding, the more helpful and supportive others can be.

Here are some other ways friends and family can help: - prepare meals to bring to the home or to hospital - feed the family pets - develop a roster for visiting your child in hospital or at home (in consultation with you) - being a supportive ‘ear’ and listening in a caring way - providing things the family enjoys, perhaps a day at the beach or a fun bicycle ride - drop off and pick up children from school or after school activities (sports, hobbies etc) - clean the home, do the laundry, water the plants and tend to the garden

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Your friends can coordinate themselves into a Team, dividing up tasks to meet a family’s needs – this can be really helpful.

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The best support can be an offer of something definite, for example, “Let me go to the grocery store for you today” or “Can I mow the lawn for you?”

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Extended family and friends will be concerned. They will want to help but do not always know what you need or even how to offer assistance. ‘Call me if you need anything’ places additional stress on overwhelmed parents who must then think about what they need, pick up the phone and ask.

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Family and friends want to help … but how?

26 Ta l k i n g t o y o u r o t h e r c h i l d r e n Siblings of a child with cancer can experience the same feelings as you.

Your other children may also feel resentful of the attention their brother or sister is receiving and they can feel left out, angry and isolated. Their needs can often be overlooked, especially in the initial weeks after diagnosis, and often these feelings are ‘bottled up’ because siblings feel you have enough to worry about.

These feelings may be expressed outside of the family unit, perhaps at school, so it’s a good idea to let teachers know that a brother or sister has been diagnosed with cancer. Teachers will be aware of the stress within the family and can alert you to any behavioural changes at school, like:

- crying - argumentative and disruptive, fighting, angry, frustrated - quality of schoolwork declines, falls behind in class

Include your other children:

Encourage visitors to bring a small gift for other children too if they have brought one for the sick child.

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- missing school

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- withdrawal, becoming very quiet

If a sibling is having trouble coping, let your medical team know. Hospital Social Workers can recommend support systems, such as Kenzie’s Gift and others, that can help.

- Let them know you still care about them. With all the attention the sick child is receiving, siblings may feel left out and neglected - Try to keep the family routines as normal as possible. Enlist the support of wider family and friends to help and keep children well informed in an open and honest way

Reassure them that they cannot ‘catch’ cancer

Your other children may feel anxious about the diagnosis so let them know that they cannot ‘catch’ cancer from their sibling and the likelihood of inherited cancer is very rare. They may complain of feeling unwell too. Listen to what they have to say, offer reassurance and your time so they know you are giving them attention too.

Encourage them to show their emotions and tell you how they feel Your other children will be on the same emotional rollercoaster. Let them know it is OK to feel anger or fear, sadness and grief. Help your children give voice to their feelings by asking some leading questions and reassure them it is safe to speak openly and express themselves.

27 Feelings of guilt It is not unusual for a child to feel that the cancer of a sibling is their fault. Perhaps they said terrible words to him or her, or wished that something awful would happen to them. They may feel guilty because they are healthy and their brother or sister is not. Reassure them that nothing they said or did caused the cancer.

School Children at school may tease or leave your children out of social circles, fearing they may ‘catch cancer’ from them. Let teachers know about the cancer diagnosis within the family so they can help other staff and pupils understand. Involving your children’s close friends in discussions about the cancer can also be helpful.

Fear of hospital and treatments

Some tips for supporting siblings: -

Give them a choice where possible: who would they like to pick them up from school? Auntie Martha or Uncle Joe?

- Fair and consistent discipline, even during tough times, is important.

- Seek advice and support from your care team if you have difficulties with your other children that you cannot manage.

- Let your children know they can always ask questions, speak openly, confide their fears, worries, joy and sadness with you.

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Many people hear the word ‘cancer’ and associate death with it. Your other children may think their sibling will die. They may not express this to you because they are scared it could happen or they do not wish to upset you. Once again, being open and honest is important here. Explain that the medical team is providing the best possible treatment for the best possible outcome and that many children do get better but, with cancer, it is not always the case. If you feel unable to answer some questions, assure your children that you will find the answer and let them know. Ask your medical team for advice and information.

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Fear that their sibling might die

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Often one parent will spend more time at the hospital and the other will be with the family.

Something as simple as a phone call from hospital to speak to children at home can help everyone feel connected.

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Younger children in particular can be frightened by the thought of their sibling in hospital and the sight of the sick child, either in hospital (for example, with tubes attached, lying in bed) or at home (hair loss) can be upsetting. Be proactive if you can, explaining what the treatments are, what the tubes are for, how the treatments may affect the child and what others in the family may expect to see.

Children can often be reassured by visiting the hospital and seeing where their sibling is but they should not be forced to go if they are unwilling.

28 Ta l k i n g t o y o u r o t h e r c h i l d r e n c o n t ’ d . . .

More tips for supporting siblings: - Let all of your children know – and often – that you love them.

- If one of your children enjoys Facebook or Blogging, ask him or her to relay information through social media. This is a good way to keep the friends of your child with cancer ‘in the loop’ and will give other children in your family an important role to play.

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- Sometimes as a parent, you can become too tired to talk on the telephone, relaying information. If you have an older child, suggest he or she assume this responsibility.

- If difficult information needs to be shared with the family, ask a member of your care team to deliver this at a family meeting.

- Involving your other children in the ‘support team’ can help them feel needed and appreciated at a time when the focus is on the child with cancer. Enlist their help with running the household, doing the shopping, keeping relatives and friends informed.

- Take as many opportunities as you can to be with your other children, to play, cuddle and enjoy ‘special time’ together.

Ta l k i n g t o y o u r c h i l d Most parents find this hard to do when a child has cancer. How much do you tell them? What do you tell them? Do you give honest answers to their questions?

Sometimes we feel we cannot give an honest answer because we want to protect our child or because it is easier for us.

Children are quick to sense when something is wrong and will need reassurance.

Younger children may not understand what cancer is but they will be fearful of all that is going on: the hospital, tests and treatments, unfamiliar people and separation from home and family. What they want most is reassurance, that you are with them and the hospital team is there to help. Most hospitals have Play Specialists on staff who, through therapeutic play, can help your child understand what is happening. You and your other children can often participate in the play with your child so the environment becomes more familiar and less threatening.

29 Older children are better able to understand their diagnosis and, even though it is difficult, being honest when discussing cancer is usually the best approach. Talking to them openly about their diagnosis, treatment and future can help to alleviate the fear of all that lies ahead.

If you’re finding it hard to talk to your child, let your hospital Social Worker or Play Specialist know. They have resources that can help.

How to manage your child’s behaviour A cancer diagnosis will have a huge impact on your child. Fear and feelings of anxiety may cause him or her to become more ‘needy’ and dependent, argumentative and difficult. The medications your child receives can also affect behaviour causing irritability, outbursts of anger and tears. Such unpredictability can make it hard for you to know what to expect.

Here are some tips that may help: - as parents and partners, find time to talk to each other about the effect your child’s illness is having on you and the rest of the family - try spending most of your hospital visiting time during the day and go home in the evenings to be with family (if possible) - set behavioural limits, make these clear to your child and stick to them - if treatment is lengthy, work out a strategy to care for your child and ensure other family members are not neglected - adjust expectations to how your child feels physically on any given day

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During treatment, your child will be given gifts and extra attention from you and from visitors. When treatment is finished, there may be an expectation that this will continue. Issues with discipline can arise when the special attention ends and normal life resumes.

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Children need guidance and structure from their parents, even when they are unwell. The rest of the family may feel neglected and maintaining routines, structure and boundaries within the family can be a challenge, especially if your child requires lengthy treatment and long stays in hospital.

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The emotional aspect of a diagnosis can make discipline difficult. You may feel helpless and guilty. Watching a child go through treatment can be hard and so it is natural to want to make the child the centre of attention, offering treats and special privileges but too much can have consequences for your child and family.

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The entire routine changes for you and your child with lengthy stays in hospital and attending appointments. The treatments can make your child feel unwell for some time and then there are the physical side effects to manage, in particular, changes in their appearance (hair loss) which can affect confidence and self image (especially in older children).

30 Ta l k i n g t o y o u r c h i l d c o n t ’ d . . .

- reward good behaviour with praise - make it clear to your child that misbehaving will have a consequence. This could be ‘time out’ or temporary revoking of privileges, and ensure that the consequence is realistic, something that you can enforce and carry out - seek help from your medical team. They have helpful resources on hand and can suggest parent support services which could be helpful

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If you are having a difficult time managing your child’s behaviour or feel there is something else going on (for example, you observe dramatic changes in your child’s personality and behaviour or your child will not respond to the boundaries and limits you have set), then seek help from : - supportive family and friends - your child’s care team - Kenzie’s Gift

Yo u r c h i l d ’ s e d u c a t i o n School is an important part of a child’s life. It provides structure, learning, opportunities to develop social and communication skills, and offers purpose and a focus on the future.

A diagnosis of cancer and ensuing treatment may mean long absences from school – weeks, maybe months – and this can make it difficult for children to keep up with their work and maintain contact with friends.

A strategy to maintain education whilst undergoing treatment is best planned in consultation with the care team in hospital, your child’s teacher(s) and the school’s administration.

During treatment At times during treatment your child may be too unwell to do schoolwork and will probably miss the camaraderie of friends and the school environment. Here are some tips that may help during this time: - The hospital has a teacher on staff who can arrange for schoolwork to be sent to the hospital and will help your child work on lessons.

31 - Depending upon your child’s education stage, it may be important for them to do some work every day, if they can, so they do not fall too far behind.

- Consult with your child’s teacher(s) at school and hospital staff (teacher and Social Worker) to determine your child’s needs and develop an action plan Encouraging classmates to write letters, postcards, send text messages or post on Facebook can really cheer up your child and keep them up to date with what is happening at school.

Returning to school When treatment is finished (and perhaps during treatment too), your child will be able to attend school. The prospect of returning to school can be exciting (seeing friends again) but also daunting for your child. They may have concerns about the way they look (while hair grows back), whether friends have forgotten them or if they can catch up with schoolwork and ‘fit in’ again.

- Consult with your child’s teacher(s) about the return to school, discuss what has happened to your child and provide information to help them support your child at school (the hospital Social Worker can provide resources). It helps if teachers understand the treatment your child has received and side effects that may affect them at school - If your child cannot return to school full time, send them along for a few hours a day or even just to enjoy lunchtime with friends. This will ease them back into the routine and help friends adjust too

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Here are some tips that may be helpful:

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You may need some help from your care team to move forward here because part of your child’s recovery from cancer – and you and your family’s too – is to find a routine again so you can all resume activities that may have been put on hold.

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Most parents may have concerns about the return to school because it is natural to want to protect our children from harm or hurt. ‘Will my child be up to it physically?’ ‘What about the risk of infection when my child’s immune system is still recovering?’ ‘Will my child be teased because of the way they look?’

- Be sure teachers are keeping an eye out for physical or emotional issues that may develop upon a return to school - Ask a Dean or member of staff to be available for your child, should they need to talk to someone at school

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- Make the school aware of needs your child may have, for example, they may want to wear a hat or bandanna for a while, or be unable to participate in sports activities for a period of time

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- Ask your child’s friends to be supportive and to stay close

32 Moving on …

“You can get back to normal now!”

After your child finishes treatment, well-meaning friends might say, ‘Now you can get back to normal!’

‘Normal’ after a diagnosis of cancer can be very different from the way it was before and you may feel that things will never be ‘normal’ again. Be assured that it is ‘normal’ to feel this way!

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Recognising the need to find a routine again, pick up the pieces and resume activities that were affected or put on hold by the cancer diagnosis is one thing … but making it happen can be quite another.

Because in many ways life will not be quite the same and here are some issues that may arise for you.

Health and safety of your child It is instinctive for parents to be protective and cautious. Learn to ‘let your child go’ and return to their life as well. Finding the right balance may require some experimentation on both sides and if you need advice, you may wish to follow up with your hospital care team or Kenzie’s Gift.

Talking to other parents of cancer survivors Meeting with others who ‘know how it is’ and have shared a similar experience can be very beneficial. You can gather tips, ideas and strategies that could be helpful in your own situation.

Perceived ‘abandonment’ by medical team When your child was first diagnosed, the medical team assembled and cared for your child and you. You may still have follow up consultations with certain members of the team but the intense medical support ended when treatment finished. While it’s a relief to have all of that behind you and your family, you may feel lost, nervous, alone, a tight-rope walker without a net below. You may feel you need their support more than ever but might hesitate because your survivorship concerns and needs may seem less than those of parents with children undergoing treatment. The hospital Social Worker and Kenzie’s Gift can be very helpful at this time.

Relationships within the family When treatment is over, you may recognise the need to re-establish ‘ground rules’ for your children, including the one who has experienced cancer. No doubt it has been a challenge to maintain discipline and family ‘rules’ and routines while your child has been unwell and re-instating certain boundaries and behavioural expectations can be

33 just as difficult afterwards. It is natural to want to ‘shower’ the sick child with extra attention and to relax some of those standards you held previously. As a result, your other children may have felt neglected (and you might feel guilty) and will need support as the family settles back into routines. Not an easy way forward for any parent, especially when you are still so emotionally and physically exhausted and worried about your child who is just emerging from treatment.

There is nothing wrong with getting some help at this stage. Support organisations like Kenzie’s Gift can assist you and your hospital Social Worker can help too. Talking to other parents who have experienced a similar situation can also be of value.

Remember that the setting of ground rules and disciplines after treatment is finished sends a clear message to the child who was diagnosed with cancer that you fully expect him or her to live a long and happy life.

Open communication within the family is important. Arrange regular family meetings for as long as needed, to discuss the impact cancer has had and to help family members return to their ‘old’ roles.

Finding – and accepting – help and support

- frightened and anxious – treatment is finished, ‘My child has no safety net’ Discuss your feelings during follow up consultations at the hospital and ask for extra help and support if you need it.

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- afraid the cancer will come back – fear of recurrence is common and it is OK to feel this way.

Discuss this with your hospital team too – they can give you information and reassurance that will help calm anxieties and fears.

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You and your immediate family are working hard to get back on track with ‘the new normal.’ People outside do not always understand that this process can go on for some time and is not over for you. The lack of comprehension can be interpreted as ‘they don’t care’ and so some distance or resentment in relationships may occur. Give friends and family time to adjust and explain to them that their support is still needed and appreciated.

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A diagnosis of cancer places the family under considerable stress but also affects the relationships you have with those ‘outside’, for example extended family, friends, and colleagues. You may have noticed that some extended family members ‘hung tough’ at the start and then dropped away as the journey went on. Colleagues and friends who were attentive at the beginning may now behave as if everything is OK: your child is back at school, obviously well, end of story! Not so for you.

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Relationships outside of the family

- exhausted, physically and emotionally – tears may never be far away and some days you can hardly get out of bed.

Be gentle on yourself and your children. You’ve been through an ordeal.

- a bit lost – the way forward is unclear, life feels uncertain.

34 Moving on … cont’d There is no doubt that life will never be quite the same but ‘life before cancer’ had structure and some of that can be re-established in this ‘new normal’. Work together, be creative, think of ways to move forward with your family by involving them in the decision-making. You may need help from support groups so don’t be afraid to access it.

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- guilt – so much of this is your fault!

Feeling guilty is normal so don’t beat yourself up. Remind yourself that the cancer was not your fault and there is no way you could have prepared yourself for it. You’ve done exceptionally well, caring for your child and keeping the family going too. Remember to celebrate the family’s accomplishments, no matter how small. Recognise achievement – especially your own. Enjoy special time with your partner and treat yourselves, often.

- alone – you may feel you are the only parents in the world whose child has been diagnosed with cancer.

You are not alone – many others have walked this road before you. Your hospital Social Worker can help. Much can be gained by talking to those who have been there too and understand how you feel.

Many of these feelings will pass over time but if they don’t and you or members of your family are not coping, please ask for help. A number of organisations are there to assist and contact information is listed on the following page.

Kenzie’s Gift is a good place to start. Even if they don’t have quite what you need they can refer you to people who do.

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Child Cancer Support Organisations Kenzie’s Gift

www.kenziesgift.com Kenzie’s Gift offers community services and support for families and whanau living with a diagnosis of or bereavement from cancer. Focuses on children diagnosed with cancer, their siblings, and children whose parents may be experiencing cancer. Also provides advice and practical information for parents.

027 345 2514 hello@kenziesgift.com PO Box 13224, Tauranga 3141

35 Child Cancer Foundation

www.childcancer.org.nz A national organisation providing information, practical and emotional support and financial assistance to children and families affected by child cancer.

0800 424 453 Email enquiries can be made from the website PO Box 152 Shortland St Auckland 1140

CanTeen

www.canteen.org.nz National organisation with a mission to support, develop and empower young people living with cancer through a national peer support network and professional, educational and recreational programmes.

0800CANTEEN (226 8336) Email enquiries can be made from the website PO Box 56-072 Dominion Road

Newtown Wellington 6021

Make-a-Wish Foundation

www.makeawish.org.nz National organisation granting the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength and joy.

0800 807 080 Email enquiries can be made from the website PO Box 8029 Symonds Street Auckland 1150

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PO Box 7309

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reception@skylight-trust.org.nz

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www.skylight.org.nz National organisation offering a wide range of services to support people of all ages facing issues of loss, trauma and grief. Also equips, trains and supports those wanting to assist them, such as family, friends, community volunteers and professionals.

0800 229 100

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Cancer Society of New Zealand

www.cancernz.org.nz National organisation providing a wide range of services and support for people with cancer and their caregivers/supporters. Call for information about your local division of the Cancer Society.

0800 CANCER (226 237) admin@cancer.org.nz PO Box 12700 Wellington 6144

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Helpful Websites

www.clicsargent.org.uk Extensive information about all aspects of child cancer. www.cclg.org.uk and www.childcancer.org.uk Information about child cancers, latest research and news. www.royalmarsden.nhs.uk/cancer-information/children Medical information about children’s cancers, treatment and care. www.macmillan.org.uk/Cancerinformation/Cancerinformation.aspx Medical information about cancer. www.lrf.org.uk Information about blood cancers (leukaemia and lymphoma) and latest research

37 Some medical terms

Cannula: small plastic tube inserted into a vein – allows fluid to be given and blood to be taken Carcinogen: cancer causing agent Catheter: flexible, thin tube – allows fluid to be given or drained from parts of the body (for example a urinary catheter) Cells: the building blocks of the body Cerebrospinal fluid or CSF: fluid surrounding the brain and spinal cord

Lumbar puncture: needle is inserted between two spinal (vertebral) bones in the lower spine to remove a few drops of cerebrospinal CSF) fluid for analysis Lymph: part of the immune system, ‘almost clear’ liquid carried within the lymphatic system of vessels throughout the body

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Immune system: body’s defence system against infection and disease Immunosuppression: reduction in the immune system Intravenous: into a vein

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Benign: not cancerous Biopsy: a small sample of body tissue taken for analysis Blood count: blood test to check the number of different blood cells Bone marrow: spongy tissues found within bones, produces the body’s blood cells Bone marrow aspirate: small sample of bone marrow removed from the hip foe analysis

Chemotherapy: drugs given to destroy or stop the growth of cancer cells Congenital: a condition existing from birth CT (computerised tomography) scan: takes a series of x-rays of the soft tissues to produce a three-dimensional picture of the inside of the body Electrolytes: minerals and salts within the body Haematology: study of blood and blood diseases Haemoglobin: exists within red blood cells and carries oxygen throughout the body Hickman line: (also known as a portacath) narrow plastic tube inserted into a major chest vein to administer chemotherapy and other medications and to take blood samples Histopathology: study of body tissues

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Allogeneic: stem cells (bone marrow) are provided by a donor (bone marrow transplant) Alopecia: partial or complete hair loss Anaesthetic: drug used to put a patient to sleep (general) or to numb part of the body (local) Anaemia: low blood haemoglobin Autologous: where your child’s own stem cells (bone marrow) are used as a supportive treatment for high-dose chemotherapy or radiotherapy.

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You will probably hear a lot of words that are new to you and here we list some of the more common ones.

If at any time you do not understand words used by your medical team, don’t be afraid to ask for an explanation.

38 Some medical terms Lymphoma: cancer of the lymphatic system

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Malignant: cancerous Metastases: cancer (tumours) that have spread from the original (primary) cancer site to other parts of the body MRI: magnetic resonance imagery.

Similar to the CT scan, builds up a series of pictures of the inside of the body using magnetic waves Neutropenia: lowered number of neutrophils in the blood Neutrophil: white blood cells (most common white cell in the blood, fights infection) Oncology: study and treatment of cancer Platelets: cell within the blood, helps with clotting Prognosis: the expected outcome of a disease and treatment Radiotherapy: use of high energy x-rays to treat cancer tumours Red blood cells: carry oxygen (and haemoglobin) Relapse: disease returns after treatment Remission: no evidence of disease Stage (of cancer): there are four stages defining the size and extent (spread) of the cancer Stem cells: a primary cell in the bone marrow from which all types of cells are made Subcutaneous: under the skin Tumour: abnormal lump of tissue Ultrasound: scan using sound waves to create a picture of the inside of the body White blood cells: fight infection (of three types: granulocytes, lymphocytes and monocytes)