Newly diagnosed

Having a child with cancer is one of the biggest challenges a family can face. There’s no right or wrong way to react to the diagnosis. Many parents feel different emotions at one time or another. But with the help of the healthcare team, loved ones and other parents, you will find ways to cope.

The first feeling many parents say they feel is shock. Parents often describe feeling numb and dazed, as if they had the wind knocked out of them or had been hit over the head. In fact, shock and the feeling of numbness can serve a purpose. They allow you some time to start to understand the news and also begin to deal with the emotions that come with it. Feeling shocked or numb can help to buffer painful feelings and fear that follow the diagnosis. As you work through your shock:

• Know that shock is a normal reaction that should pass with time.
• Seek comfort from your spouse, family and friends.
• Ask a friend or family member to go to appointments with you.
• Ask the healthcare team to repeat information.
• Take notes during meetings so that you can review them later.
• Ask if it’s OK to record important meetings with doctors.
• Talk about how you feel with nurses, social workers and counsellors.

You may find it hard to believe that your child has cancer. Denial and disbelief are normal coping strategies that help to buffer and delay some of the more painful emotions that are yet to come. Through denial and disbelief, you gain a little bit of extra time to adjust to the reality you now have to face. It’s OK if these feelings mean that you ask the healthcare team a lot of questions or even seek a second opinion. Ask and get answers to all your questions – the answers can reassure you. Many parents also find it helpful to talk to other parents about their experience. Denial and disbelief are not a problem unless they stop you from making timely decisions with your doctor.

Having a child with cancer may seem like a crisis beyond your control. It’s normal to be afraid and anxious. At first, you may be most afraid that your child is going to die, be unhappy or be in pain. Later on you may worry about things like side effects or how your family is coping. You may be especially anxious at the time of diagnosis. Fear of the unknown, fear of the impact of the cancer treatment on your child and an uncertain future are major causes of anxiety.

While having a child with cancer is always scary, you may find that your fear becomes more manageable after you have a treatment plan and start to follow it. Ways to manage your fear and anxiety include:

• Get accurate information from reliable sources, starting with your healthcare team.
• Figure out how much information is right for you. When it comes to information needs, everyone is different. Sometimes too much information can be scary. You may also need different kinds of information at different times.
• Develop a trusting relationship with the healthcare team and work with them to provide care for your child.
• Discuss fears and anxieties with the healthcare team – don’t be afraid to ask for information, explanations and reassurance.
• Talk about your fears and anxieties with other parents to see how they coped.
• Use your favourite ways to help relieve anxiety and tension or learn new ways to do it. Examples include being physically active, meditating, listening to music, deep breathing, getting outside or watching a funny movie.
• Be involved in your child’s care and focus your time and energy on what you can do to make them comfortable.
• Realize and accept that some things cannot be controlled.
• Find strength in your faith, religious beliefs or spiritual practices.
• Know that it isn’t your fault – or anyone else’s – that your child got cancer.

When someone you love is very ill, it’s very easy to get angry and want to blame someone or something. You may be angry at the doctor for diagnosing your child with cancer, your friends for not helping enough or your employer for not being flexible enough. You may be angry at yourself, your spouse or even your sick child.

You may feel that you should hide your anger. It is OK to feel angry, but you do need to find a way to let out that anger in a way that respects and doesn’t hurt others. Unresolved anger can take away the energy you need for coping with the diagnosis and upcoming treatment. To deal with anger you can:

• Recognize why you are angry and find a way to accept it.
• Try to describe angry feelings rather than act on your anger.
• Let the anger out. Find a private space to scream, punch a pillow, shout or cry – anything that is not harmful but will help release the anger you have inside.
• Do something physical such as walking, playing a sport, gardening or any other exercise to relieve the tension.
• Express feelings by writing a letter that doesn’t get sent or by keeping a journal.
• Talk with other parents who have dealt with similar feelings.
• Talk about your angry feelings with someone on your child’s healthcare team.
• Make an appointment with your own doctor to discuss these feelings and find ways to deal with them.

It’s quite normal to feel guilty that your child has cancer, as if it’s somehow your fault. Your child’s cancer is not a result of something that you said or did. It is not a result of something your child touched or ate. It is no one’s fault. Most cancers in children have no known cause or are caused by factors that you do not control (such as genetic mutations).

You’ve probably heard that early detection is very important for treating cancer. Don’t let this make you feel guilty that you didn’t notice symptoms sooner or take your child to a doctor more quickly. Most cancers that occur in children happen very quickly and have symptoms that often resemble other common childhood illnesses. Medical studies suggest that the success of treatment in most cases of childhood cancer depends more on the type of cancer and finding the right treatment and less on early diagnosis. Cancer is rare in children and most often takes some time to diagnose. To deal with guilty feelings you can:

• Talk to the healthcare team.
• Ask any questions you may have about what caused the cancer, but accept that there may not be an answer.
• Talk about your feelings with other parents of children with cancer.
• Realize that finding a reason for something is not going to change the fact that it has happened. Try to focus on dealing with the decisions and tasks that must be faced when a child is diagnosed with cancer.

Grief is not just about death. Grief is a normal response to distress or loss. In general, parents grieve the loss of a normal life, realizing that life may never be the same again. The grieving process may vary from person to person. How parents grieve and how long parents grieve will be different for everyone. As you deal with your grief, you can:

• Cry to help relieve tension. Frequent crying is fine. It doesn’t mean that you are weak or that you can’t cope.
• Talk to other parents about their grief and what helped them deal with it.
• Seek help from a social worker, counsellor, your own doctor, spiritual care worker or other members of the healthcare team.

It is normal for parents to feel a deep sadness and constant worry after a child is diagnosed with cancer. This is a traumatic and unexpected event that has drastically changed your family’s life. Your hopes and dreams for a happy, healthy, carefree child have been dashed. Thinking about what the upcoming weeks and months will bring can add to that sadness.

Parents may suffer from depression or anxiety as they start to realize the impact of a child’s cancer diagnosis on the family. You may think about all the decisions you have to make and everything you have to do. Hopelessness and despair can easily set in. You may find it hard to sleep or eat. You may feel like you don’t have the energy to do everything that needs to get done. Attention spans are short. The ability to think clearly and to care for yourself become monstrous tasks. Your worries may feel overwhelming.

Unfortunately, there is no hiding from these painful emotions. Feeling sad, depressed or worried will come up time and again during your child’s treatment and recovery. Some parents report having these feelings months and even years after the child has finished treatment. Ways to cope include:

• Try to eat right, get enough sleep and look after yourself in order to be able to look after your child.
• Ask for help and accept offers from friends and loved ones to help deal with the practical aspects of everyday life and lessen the burden of daily demands (for example, offers to provide meals, carpool kids to activities or babysit). Everyone needs more support to get through this.
• Express your feelings through talking, writing and crying.
• Get support from a social worker, counsellor, your own doctor, spiritual care worker or other members of the healthcare team.

Severe depression doesn’t go away on its own. You may need medicine, therapy or both. Talk to a doctor if you need medical help.