No one is ever prepared to hear that their child has a life-threatening illness. For most parents the first few weeks are a blur. Parents have a lot to manage after a child is diagnosed with cancer and the first few weeks can be overwhelming. Here are some tips, suggestions, and resources to help parents cope during those first few weeks after diagnosis.
Common feelings and reactions when a child is diagnosed with cancer
If your child has been diagnosed with cancer, there are no right or wrong feelings. Some parents have trouble believing that this is happening. Others cry. Other parents focus on making treatment decisions. All of these reactions are normal. Some of the most common reactions to hearing a child has cancer are:
- Disbelief and denial
What can help parents cope with feelings and stress?
- Using support from social workers, counselors, nurses, psychologists, and doctors.
- Leaning on family members or friends, talking with them or letting them help with household needs.
- Using or learning strategies to reduce anxiety or tension, such as exercising, listening to music, or keeping a journal.
- Finding strength in religious beliefs or spiritual practices and talking to pastors, rabbis, or other clergy.
- Openly discussing fear and anxiety with cancer treatment team members.
- Taking care of themselves: eating right, getting rest, and taking breaks.
- Taking control of decisions involving your child as much as possible.
- Expressing anger in a healthy way-- finding private space to vent feelings by shouting, screaming, or crying.
- Talking with other parents of children with cancer.
- Learning to care for their child and getting all their questions answered.
- Knowing that nothing you did caused your child's cancer
Learning about treatment
When a child has cancer, understanding the plan for treatment, the potential impact treatment might have on the child's day-to-day life and the family can help parents cope and begin to plan for the future. At the same time parents are trying to manage their stress and shock, they also are being given a lot of information about their child's cancer, treatment choices, and what will happen. Many parents will feel overwhelmed with information at first and wonder how to keep track of everything. Parents also have questions about how to tell their child and other family members what is happening.
For more information about helping your child cope with their diagnosis, please visit Helping Your Child Adjust to a Cancer Diagnosis. Helping Siblings of Children with Cancer has resources for the special needs of other children in your family. Here are some ideas to help parents keep track of treatment information and what they need to know about their child's care in the first few weeks:
- Get to know the people on your child's cancer care team and what they do on the cancer care team.
- Get a notebook to bring to all your child's appointments to take notes and write down questions before and after the visit.
- Ask a family member or friend to be there and take notes when you talk with health care professionals about treatments or how they are helping your child get better.
- Ask staff to repeat information or explain something in a new way if you do not understand.
- Take time to read through information the treatment team gives you in a quiet space.
- Ask for help in getting second opinions.
- Ask the medical team to focus on teaching you what you need to know to care for your child at home. If your child is in the hospital, ask about classes for parents of children with cancer.
- If it is helpful, you can ask for copies of test and lab results.
- Call the American Cancer Society or other reliable sources for more information about diagnosis and treatment.
- Read about your child's type of cancer.
Creating a new normal
In the first few weeks after a child's diagnosis, family schedules and routines get turned inside out. The first few weeks can feel like a movie of someone else's life. Part of what helps kids with cancer, their siblings, and other family members cope is finding ways to keep as many things the same as possible or creating new predictable routines around treatments schedules. It can take a little while to get through the initial shock and learning about your child's illness, but here are some things to think about and resources to help you keep or create routines while your child is getting treatment:
- Talk with your employer about what is happening quickly after diagnosis to find out what programs and resources are available to help you take time off or keep working during your child's treatment. There are different types of leave, including Family Medical Leave, that may be available. You may also be able to work from home or from the hospital, depending on your job.
- If people in your community and family offer to help, think about things they can do to help that will help your family keep routines. They may be able to help drive siblings to school or to activities, with meals or in other ways to help keep your household running as smoothly as possible. Consider asking a friend or family member to be the contact person for managing and coordinating offers to help.
- Talk with the health care team about when and if your child may be able to return to school. It will help to know how and when school work can be part of your child's life during treatment. See Helping Your Child Manage School During Cancer Treatment for more information
- Ask the health care team for a schedule of treatments for the first few weeks, including how long they think appointments and treatments will last so you have an idea of how the days and weeks flow.
- Talk with the health care team about what medicines your child will take at home and how they can be scheduled to match your family's routines with meals and bedtimes.
- Know that it will take time to create new routines and that your family will adjust.
- Be thoughtful about giving big gifts and rewards as a way of helping your child cope with their situation as treatments can last several weeks, months, and sometimes years. It will be hard to have rewards and treats built in to every hard treatment day over a long period of time. Talk with the health care team about smaller ways to provide encouragement for your child.
- Some families find it helpful to create a website to keep friends and family members up to date on their child's journey.