As previously explained, this series of articles is not meant to be medical advice, but a guide that may help you as a parent of a newly-diagnosed child with cancer cope just a bit better.
Information is knowledge, and never more so than when you are dealing with childhood cancer!
These articles are meant to help you be the key part of your child’s treatment that you will need to be.
Take what works for you according to your situation and your child’s temperament, personality, fears, strengths, and how they deal with adversity, and leave what does not pertain to your situation.
Part 3 will deal with talking to your child about their cancer; should you or shouldn’t you; when should you; who should tell your child, and how much you should tell your child.
Talking to Your Child about Their Cancer
When your child has been newly-diagnosed with cancer, and once you have overcome the initial shock, the question will probably arise as to whether you should speak to your child about what is wrong with them….
As a parent, your first instinct will be to protect your child, but children are very sensitive and intuitive, and will most probably realise that there is something radically wrong. They may already be going for a series of medical tests and being examined by various doctors; they will pick up that you are stressed, and may worry more if they do not know what is wrong.
Keeping the truth from your child may cause them to feel guilty for making you stressed out, which is not good for them. Some well-meaning family members may say something to them or one of their oncology team or staff at the clinic or hospital may inadvertently let something slip. If your child finds out about their cancer from another source they will lose trust in you as a parent because you were not honest with them.
Why Should I Tell My Child?
Whether to tell your child or not is a personal choice, and one that only you can make, but here are some tips and information that might help you to make that choice, irrespective of your cultural, religious or family beliefs:
- It is recommended that you tell your child about their cancer because children who are not told often imagine things that are untrue or worse, such as a child believing that they got cancer as a punishment because they did something wrong;
- According to leading Health Professionals, telling children about their illness leads to less guilt and stress;
- Children who have been told the truth about their situation are far more likely to cooperate with all the tests and treatment that they will have to undergo; and
- Talking about the cancer that your child has often brings the family together and definitely makes dealing with everything that comes with a diagnosis of cancer
Questions You as a Parent May Have
When considering telling your child about their cancer, many questions are sure to arise, and these may overwhelm you and become a stressor that you definitely do not need:
When Should My Child Be Told?
As a parent, you know your child best, and are therefore the best person to decide when to tell your child. Bear in mind though, that your child will realise pretty soon after diagnosis that there is something wrong, so it may be better to tell them the truth sooner rather than later to avoid further stress; in fact most parents say that it is easiest to tell them as soon as possible after diagnosis. It is recommended that you tell them as soon after diagnosis as possible in order to dispel any fears that could develop, and most certainly before the start of any treatment.
Who Should Tell My Child?
Once again this is a personal decision; many parents tell their child themselves while others find it too painful and cannot face it so get the doctor or other close family members to do so. Another option is to tell your child yourself with the help of a doctor, nurse or social worker. It may also help to discuss exactly what to say with your spouse, your church/religious elder, other close family members, parents of another child who has cancer, or the medical team that is going to attend to your child’s treatment.
Who Should Be There?
No matter who explains the illness to your child, they need to have someone they trust and depend on close when they hear the news as it may be rather traumatic for them. You, yourself also need someone, so it is a good idea to have some close family members present on whom both you and your child can lean.
What Should My Child Be Told?
It is best that you are truthful, gentle and open with your child, but exactly what you tell them will depend on your child’s age and how much they will be able to understand.
You know your child best, but here are some general guidelines which may help:
Up to 2 Years Old
Infants in this age-group understand only what they can see and touch, and will not understand what cancer is. Their biggest worry is being separated from their parents and what is happening right now.
After the age of 1 year, children think about how things feel and how to control things around them; they are afraid of medical tests and may cry and squirm around to try to control what is happening, or even run away.
Children begin to understand and think about what is happening around them at about 18 months, so it is best to explain to them why they are going to the hospital so much, that the tests they are undergoing might hurt, that it is okay to cry, and that you will be with them all the time. Being honest with your child lets them know that you understand their feelings and that it is okay to feel like that, and helps them to trust you and know that they can depend on you.
Give your child a choice about taking meds if possible; if meds can be taken by mouth for example, ask them if they would prefer to take it mixed into some juice – this gives them a feeling of some kind of control over what is happening to them.
2 to 7 Years Old
Children of this age link events to one specific thing, for example they may link having the flu to staying in bed or eating chicken soup. They also often think that an illness is because of something that they may have done, and that “getting better” will automatically happen if they just follow the rules.
Some approaches that may help with this age group:
- Explain that they need the treatment to get better, and so the hurt will go away, or so they will feel better and be able to play without getting so tired;
- Explain that they did not get ill because of something they did, said, or thought, and that the treatment is not a punishment but something that will help them feel better;
- Explain about the tests and treatments honestly. Remind your child that these things are being done to get rid of the cancer and to help him or her get better;
- Explain the cancer in simple terms that they can understand; telling them that the cancer is a contest between “good” cells and “bad” cells, for instance, and that the treatment will help the good cells to be stronger so that they can beat the bad cells.
7 to 12 Years Old
At this age, children begin to understand the link between things and events, and can see their illness as a set of symptoms and not something that is happening to them because of something they may or may not have done. They can also understand that taking meds or undergoing treatments will make them better and will cooperate with their treatment.
It is recommended that you give more details to a child in this age-bracket, but remember to use language and situations that your child is used to and will understand better. A good way to do this is to explain that the body is made up of different types of cells, and that every group of cells has a certain job to do.
Explain to him or her that, just like a sports team, the cells must work together to get the job done, but that sometimes some cells “make trouble” and get in the way of the cells doing the work; these are the cancer cells. Tell your child that the treatments will get rid of the “troublemakers” and this will allow the other cells to work together as a team to make the body work right.
12 Years and Older
By this age children mostly understand that the complicated relationships between events. They can think about things they have never experienced and think of illness in terms of specific symptoms, such as feeling really tired, and in terms of changes or limits to their everyday activities.
They can also understand the reason for the symptoms, which means that if you explain that cancer is a disease in which some of the cells in their body have gone “haywire” or “crazy” they will understand. Explain that these cells have invaded other parts of the body and get in the way of the “normal” cells that keep the body working right. Tell your child that the treatment will get rid of the “crazy” cells, which will make the body work right again and the symptoms go away.
Once again, do some research on the internet, reach out to an organisation like Little Fighters Cancer Trust for a bit of support and information and/or access to resources that will help you find out more and make an informed decision regarding your child’s treatment.
Remember that you are not alone in this, there are many individuals out there able and willing to lend a hand, some support, or even just listen – do not be afraid to reach out for help!
Part IV of this series will deal with “Questions Your Child May Ask”