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.
There are some things to remember right now:
Kenzie's Gift is here to help you, your child and family cope throughout this journey.
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.
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.
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)
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, 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.
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.
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.
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:
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.
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:
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:
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.
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.
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.
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.
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.
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:
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.
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.
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.
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).
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 usually 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 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:
Full Blood Count - Quantities of different types of blood cells are counted. This is important for monitoring the side effects of treatments.
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.
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.
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.
Similar to the CT scan, the MRI builds up a series of pictures of the inside of the body using magnetic waves. Whilst the scan is painless, your child lies within a narrow tunnel and it is very noisy. Your child may be given a sedative or general anaesthetic to ensure they lie still and also to calm them while they have the scan. 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.
This scan uses sound waves (too high for us to hear) 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 are often used to examine the abdominal area and the heart.
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.
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)
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:
Your specialist will meet with you to discuss the treatment plan and he or she should:
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.
"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.
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.
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.
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.
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.
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.
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.
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.