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Coping with a Diagnosis of Cancer in Children
A diagnosis of childhood cancer is shocking and overwhelming. However, the prognosis for childhood cancer continues to improve, and the chance of being cured continues to increase.
Learning that their child has cancer usually makes parents feel like the world has been turned upside down. Everything may suddenly feel out of control. Your initial thoughts may be "How could this have happened to my child?" and "How will we get through this?"
Coping with the diagnosis
Some practical things that you can do to help during this time include the following:
Learn as much as possible about your child's disease. At times, ignorance or a lack of understanding is your worst enemy. Arm yourself with information in order to prepare for what lies ahead. Do not hesitate to ask questions about your child's disease. Sometimes, parents can be too stunned or too upset while at the hospital or doctor's office and realize later that they forgot everything the doctor had said. Write things down. It is helpful to keep a notebook with key information and questions about your child's diagnosis and treatment plan. Some parents find it useful to have a trusted family member or friend attend meetings to help gather and understand information.
However, you should be cautious about some sources of information regarding cancer. Well meaning friends and family members may try to help by providing what they think is factual information about cancer or its treatment. There is also a lot of information on the internet including false claims or “miracle cures”. Some of the information from family, friends or the internet may be correct, but much is outdated, may not apply to your child or is simply incorrect. Please tell your provider about any information you discover that you think may be important for your child’s treatment or well-being. Your provider can help you sort through this complicated information and make sure that your child is receiving the best treatment available.
Keep a journal of your feelings about your child's disease and the impact on your life. Writing often helps people express strong, complicated feelings and clarify their thoughts. This can be helpful in decision-making.
Learn about your health insurance benefits. This way you will understand what expenses will be covered and what you may have to pay. Financial Counselors and Social Workers can help with these issues.
Continue doing at least some of your usual, daily activities. You will still have normal chores and activities such as grocery shopping, laundry, and going through the mail. Keeping some of these "regular" activities will help you cope and feel more in control. Using a cell phone to communicate with the hospital is one way to accomplish these activities and still be in touch with what is happening with your child.
Take care of your family relationships. Although your primary focus is on your child with cancer, it is important to also spend time as you normally would with your other children and family members. It is healthy to have fun together, even when a child in the family has cancer. Relieving stress and strengthening family relationships will help all of you cope with your child's disease.
Use support services and groups in the area, as well as national support groups and their resources.
Social workers are excellent sources of information about useful resources in the hospital and in the wider community. They can help find solutions to emotional challenges such as worry and anxiety and to practical challenges such as school, work and transportation arrangements. They can also help find answers about your child’s medical condition and treatment plan.
Child-life specialists can help children and siblings of all ages understand and cope with what is happening – for example, medical tests or procedures that may be required.
There are a variety of other professionals who are available to help such as psychologists, psychiatrists, and chaplains.
There are also a wide variety of activities that can support positive coping such as art projects, camps and educational programs. Each family's need for support is unique.
Do not be afraid to ask your providers for any help that you need, they will connect you with the right resources.
Friends and family members will often ask "Is there anything I can do to help?" Consider saying "yes" to this question and ask them to pick up your groceries, help with the laundry or housecleaning, pick up your other children from their extracurricular activities, or make dinner. They will feel like they are contributing – and they are.
Avoid emotionally draining situations.
Sometimes, well-meaning friends and family members will say the worst possible thing at the time of a cancer diagnosis. They truly want to help or be supportive, but sometimes do not know how to respond. Their words may hurt you or disappoint you, even though that was not their intention. You must realize that people will not know what your needs are unless you tell them. Sometimes, it is simply easier to be forthright and tell someone "I would just like you to sit quietly with me and keep me company" or "I need to spend some time alone right now." Do not be afraid to express your needs during this time.
Other parents or acquaintances may want to talk to you about their experiences with cancer. Sometimes you will find this helpful, but it can sometimes make you feel overwhelmed. It is important for you to avoid these discussions if they are not helping you. It is healthy to ask for what you need, as well as what you do not need during this time.
Share what you have learned.
You will have important knowledge and skills that you learn as you experience your child's illness. You could help other parents and their families by sharing your experiences in a support group or other setting where it is clear that the other parents are asking for your support.
The following is a list of suggestions for patients, parents, and siblings that may help each individual cope with his or her emotions, depending on the age of the child with cancer and the age of the siblings:
Infants and very young children (birth to 3 years of age).
- For patients:
- Soft music
- Distracting with toys or colorful objects
- Creating a cheerful, hospital room
- Having siblings visit
- Keeping their regular schedule for sleeping and feeding
- For siblings:
- Providing cuddling
- Hugging frequently
- Arranging visits to ill brother or sister o Keeping them near parents, if possible
- Using relatives, friends, or a daycare center to maintain their usual daily routine
- Having one parent spend time with them daily
- Recording lullabies, stories, messages when parent cannot be at home
- Offering frequent reassurance to toddlers that mommy or daddy will soon be back
Toddlers, preschool (3 to 5 years of age).
- For patients:
- Giving very simple and repeated explanations for what is happening
- Providing comfort when child is upset or fearful
- Checking on child's understanding of what is happening
- Offering choices when possible
- Teaching acceptable expression of angry feelings
- Maintaining a normal daily schedule for feeding and sleeping
- Giving simple explanation for parent's distress, sadness, or crying
- For siblings:
- Giving a simple explanation that brother or sister is sick and that people are helping
- Offering comfort and reassurance about parent's absence
- Arranging for reliable daily care and maintenance of usual routines
- Having one parent see child daily, if possible
- Remaining alert to changes in behavior
- Reassuring child about parent's distress or sadness
School-aged children (6 to 12 years of age).
- For patients:
- Offering repeated reassurance to your child that he or she is not responsible for the cancer
- Teaching that sadness, anger, and guilt are normal feelings
- Allowing your child to keep feelings private, if that is preferred
- Suggesting personal recording of thoughts, feelings through writing, drawing
- Arranging for physical activity, when possible
- Providing explanations your child can understand about diagnosis and treatment plan; including your child, when appropriate, in discussions about diagnosis and treatment
- Answering all questions honestly and in understandable language, including, "Am I going to die?" (talk with cancer care team about how to answer)
- Listening for unasked questions
- Facilitating communication with siblings, friends, and classmates, if desired
- Arranging contact with other patients to see how they have dealt with diagnosis
- For siblings:
- Teaching about normal feelings of fear, anxiety, sadness, or anger
- Encouraging sibling to communicate feelings; suggesting sibling write, telephone, send drawings or recorded messages to patient
- Providing understandable information about diagnosis and treatment
- Answering all questions honestly, including, "Will he or she die?"
- Listening for unasked questions, especially about personal health
- Offering repeated reassurance that sibling is not responsible for causing the cancer
- Informing teachers and coaches of family situation
- Arranging for school and other activities to continue on schedule
- Supporting sibling's having fun, despite brother or sister's illness
- Planning for daily availability of one parent
- Explaining that parents' distress, sadness, or crying is okay
Adolescents (13 to 18 years of age and older).
- For patients:
- Giving information on normal emotional reactions to a cancer diagnosis
- Encouraging expression of feelings to someone: parents, family, or staff
- Tolerating any reluctance to communicate thoughts and feelings
- Encouraging journaling
- Providing repeated reassurance that they are not responsible for causing the cancer
- Being included in all discussions with parents about diagnosis and treatment planning
- Being encouraged to ask questions (parents should listen for unasked questions)
- Addressing spiritual concerns about "Why me?"
- Permitting private time for interaction with team professionals
- Offering assurance that parents and family members will be able to manage crisis
- Encouraging sharing news of diagnosis with peers, and classmates
- Arranging for visits of siblings and friends
- Facilitating contact with other adolescent patients, if desired
- For siblings:
- Involving adolescent in events around diagnosis
- Reassuring that cancer is not contagious
- Offering assurance that nothing they did or said caused the cancer
- Providing detailed information on diagnosis and treatment plan
- Answering all questions honestly
- Arranging access to treatment team, if desired
- Discussing spiritual issues related to diagnosis
- Encouraging expression of feelings
- Arranging for management of daily life at home
- Providing assurance that family will be able to handle crisis
- Informing teachers and coaches of family situation
- Encouraging usual involvement in school and other activities
- Asking relative or friend to take a special interest in each adolescent sibling
What is grieving, and how does it relate to my child's diagnosis?
Grieving is a normal response to a loss. Losses can include the loss of your normal daily routine, the impact of the diagnosis on other family members, the financial impact of the diagnosis and the loss of the certainty that your child is healthy and safe. The grieving process varies from person to person in terms of the reactions to grief, as well as the time it takes to go through the grief process. The child with cancer, the parents, siblings, and other family members, will all experience grief. The normal responses to grief are often described as “stages”, but not everyone experiences all possible reactions or experiences them in a particular order. Here are some examples of very common responses to grief:
Denial. Denial is a response where people cannot believe that the cancer diagnosis is true for their child. One may feel numb, or in a state of shock. Denial is a protective mental strategy people use when a life event is too overwhelming to deal with at the moment. It is normal, usually time-limited and is not a problem unless it stands in the way of getting the child needed medical care.
Anger. In this response, you understand the cancer diagnosis and are very upset and angry that it has happened to your child and your family. One of the best ways of dealing with bursts of anger is to engage in exercise or some form of physical activity. Talking with family and friends, other parents who have a child with cancer, and your health care team, may also be helpful. The child also needs to be able to express his or her anger. Children can express anger in different ways depending on their age and personal style. Some children may be able to talk about their feelings directly with family members, other children or health care professionals. Other children may not be able to talk about anger or other strong feelings so directly. Children may also find therapeutic play with a child-life specialist, play therapist or psychologist useful. Older children may use other strategies such as writing in a journal.
Bargaining. Questioning family or faith traditions, asking "Why my child?" and "What did we do to deserve this?" are common questions in this response. It is normal for parents to make bargains with themselves, in hopes that this will make the cancer diagnosis go away. Guilt may also be present in this response. Searching for something that you personally did or did not do, which could have contributed to the cancer in your child, can be a part of bargaining. Parents may tell themselves that they promise not to do something they previously did (such as arguing with family members), or to start doing something they have not done (such as going to church regularly), in exchange for their child's cancer recovery. It is important to remember that there is nothing that you or your child did which contributed to the cancer. It is no one's fault.
Depression or sadness. Parents and children may feel a profound sense of sadness. This is normal. It can be accompanied by physical changes, such as trouble sleeping, or excessive sleeping, changes in appetite, difficulty with concentrating on simple daily activities, or feeling a constant fear that someone else in the family will be diagnosed with cancer. It is important to talk about these feelings with a health care professional, such as a social worker, counselor or psychologist or meet with a support group to help you cope with these normal responses.
Acceptance. Parents usually come to a point where they have accepted the cancer diagnosis and where cancer has been incorporated as part of the family’s life. Parents have made an adjustment to their child's illness. This does not mean that they will never feel other emotions, but usually families find that they are better able to manage their lives overall once they reach this stage.
Acknowledging that you are grieving is a good way to cope with a cancer diagnosis. You may find yourself moving in and out of the various responses to grief as your family goes through the cancer experience. By giving yourself, your child, and your family permission to do this, you will be better able to cope. Your social worker can help you and your child find ways to manage the normal responses to grief such as anger.
Your Health Care Team
Your health care team is one of the best sources of support for both you and your child. The team will be with you and your child for every step of this journey. You and your child are important members of this team. It is very important that you and the team establish a strong relationship built on trust. Trust can be hard to establish when you child’s health is at stake. Trust is built on open and honest communication. Do not hesitate to tell your providers all of your questions, concerns and opinions. By doing this, your providers will get to know you and your child better and be better able to help.