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SUPPORT FOR PARENTS

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

You noticed your child wasn't feeling well, perhaps experiencing some pain and fatigue. A visit to the GP and then a referral to a specialist in the hospital indicated something was wrong but a diagnosis of cancer was more than you believed possible.

The truth 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?"

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.

WHAT IS CANCER

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.

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).

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.

The most common childhood cancers are solid tumours and leukaemias.

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. Cells in a malignant tumour are able to 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 a tumour in another area. This is called secondary metastatic cancer.

Malignant tumours are classified by stage and grade and 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, 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 type of cancer in children is leukaemia. These are cancers of the bone marrow. The bone marrow is a spongy material found in the centre of some of our bones. All of our blood cells are produced in the marrow. There are three types of blood cells:

  • red blood cells that carry oxygen 
  • white blood cells that fight infection 
  • platelets that clot the blood (control bleeding) 

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

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).

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.

Your child's education

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.

  • 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.

Most parents will have real 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?

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. Here are some tips that may be helpful:

  • 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
  • Ask your child's friends to be supportive and to stay close
  • 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
  • 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

Talking to your child

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.

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.

Read more about talking to your child

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 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:

  • withdrawal, becoming very quiet
  • crying
  • argumentative and disruptive, fighting, angry, frustrated
  • quality of schoolwork declines, falls behind in class
  • missing school

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.

Include your other children:

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

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.

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

Younger children in particular can be very 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.

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.

Fear that their sibling might die

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.

  • Give them a choice where possible e.g. "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 
  • 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
  • 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

It can be difficult to tell other family members, relatives and friends that your child has cancer. Every family is different but 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.

Family and friends want to help but how? 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.

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?"

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

Here are some other ways friends and family can help and don't be afraid to suggest them:

  • prepare meals to bring to the home or to hospital 
  • feed the family pets 
  • develop a roster for visiting the child in hospital or at home (in consultation with parents) 
  • being a supportive ear for parents, listening in a caring way 
  • providing things the family enjoys, for example, 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

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.'

Taking your child to your family doctor to have these symptoms checked was the first step. A referral to the hospital to see a paediatrician, or perhaps a paediatric oncologist or a haematologist followed and 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. For information about diagnostic tests, visit the webpage on this site.

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 for the results to come back can be difficult because you want the best outcome for your child and for treatment to start right away. It is hard to be patient 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.

Tests and 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.

Treatments

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)

  • 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 individuals. 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 or a 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). 

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)

Don't be afraid to ask questions because the only silly questions are those not asked. Make lists of questions prior to appointments and take someone with you who can write notes while you discuss your child's case with the specialist. You can de-brief later with your family and refer to the notes taken.

View Treatment options

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!

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, 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 and believe that now, more than ever, you need their support. However, you might hesitate because your survivorship concerns and needs 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 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 have felt neglected (and you may feel guilty) so they will need to be supported too 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 the 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 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.

Relationships outside of the family

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.

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.

Finding and accepting help and support It is normal to feel...

Exhausted
Pphysically 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.

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.

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

A bit lost
The way forward is unclear, life feels uncertain.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. 

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 Resources page.

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