Learning that your child has cancer often makes parents feel like their world has been turned upside down. Everything in their life 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?"
A cancer diagnosis is shocking and overwhelming, particularly in children. But prognosis of childhood cancer continues to improve. And the chance of being cured continues to increase.
Grieving is a normal response to a loss. The loss can include the loss of your previously healthy child, the loss of your normal daily routine, the impact of the diagnosis on other family members, and the financial impact of the diagnosis. The grieving process varies from person to person. The child with cancer, the parents, siblings, and other family members will all experience grief.
Here are some practical things that you can do to help during this time:
At times, ignorance or a lack of understanding is your worst enemy. Arm yourself with information to lessen frustration. Do not hesitate to ask questions about your child's disease. You may wish to keep a notebook with all the medical records and information about your child's diagnosis. Sometimes, parents can be too numb or too upset while at the hospital or healthcare provider's office with their child to remember everything the healthcare provider said. Write things down. Consider bringing another family member or close friend to the appointments. They can provide support, ask clarifying questions, and help you review everything afterward. Or talk with the healthcare provider about recording your conversations so you can review them later.
As time goes on, you will be able to look back and see that things are improving and that you are moving forward, even though at times it may not seem so. A private journal lets you express emotions that you may not want to share but are important to acknowledge.
This way you will understand what expenses will be covered and what you may have to pay. Try to build a relationship with a specific person in your insurance company. This can be a customer support person or a benefits person. They can help you with your insurance plan. For example, they can help when you have questions about medical bills or if you need preauthorization for special procedures.
You will still have grocery shopping, laundry, and going through the mail to do on a daily or weekly basis. Having 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. But if the thought of managing day-to-day activities causes worsening, or even overwhelming anxiety, don't force yourself to do "normal" tasks. There is nothing normal about your current situation. Don't hesitate to change your responsibilities and ask for help.
Although your main focus is on your child with cancer, try to spend time as you normally would with your other children and your spouse. It is healthy to have fun together, even when a child in the family has cancer. Easing stress and strengthening family relationships will help all of you cope better with your child's disease.
Find out about supportive services available at the hospital to help you cope. These could be social workers or meetings with other families. Do not be afraid to ask for help. Each family's need for support is unique. Friends and family members will often ask "Is there anything I can do to help?" Consider saying "yes" to this question. Ask them to pick up your groceries, help with the laundry or housecleaning, pick up your other children from their activities, or make dinner. "Assigning" a friend or family member something to do to help you will also help them feel like they are contributing.
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 they 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. They may believe that they are being helpful to you, but instead may be making your situation feel even more overwhelming. It is important for you to stay away from these discussions if they are not helping you. And if you can't do so, try to politely tell the person their comments are distressing, rather than helpful. It is healthy to be "selfish" and ask for what you need, as well as what you do not need during this time.
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.
Below is a list of tips for patients, parents, and siblings that may help each person cope with their emotions, depending on the age of the child with cancer and the age of the siblings:
Playing soft music
Distracting with toys or colorful objects
Creating a cheerful hospital room
Having siblings visit
Keeping their regular schedule for sleeping and feeding
Arranging visits to ill brother or sister
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 reassurance often to toddlers that mommy or daddy will soon be back
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
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 maintaining usual routines
Having one parent see child daily, if possible
Remaining alert to changes in behavior
Reassuring child about parent's distress or sadness
Offering repeated reassurance that your child is not responsible for the cancer
Teaching that sadness, anger, and guilt are normal feelings
Letting your child keep feelings private, if that is preferred
Suggesting personal recording of thoughts and feelings through writing or drawing
Arranging for physical activity, when possible
Providing explanations your child can understand about diagnosis and treatment; 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
Teaching about normal feelings of fear, anxiety, sadness, or anger
Encouraging sibling to communicate feelings; suggesting sibling write, telephone, or 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 siblings having fun, despite brother's or sister's illness
Planning for daily availability of a parent
Explaining that parents' distress, sadness, or crying is okay
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
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
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
Encouraging usual involvement in school and other activities
Asking relative or friend to take a special interest in each adolescent sibling
The various members of the cancer team can assist your family, as needed. The seriousness of a cancer diagnosis and the difficulties of treatment cannot be forgotten.