ON THIS PAGE: You will read about how to cope with challenges in everyday life after your child’s medulloblastoma diagnosis. Use the menu to see other pages.
What is survivorship?
The word “survivorship” means different things to different people, but it often describes living with, through, and beyond cancer. In some ways, survivorship is one of the most complex aspects of the experience because it is different for every child and his or her family.
After active treatment ends, children and their families may experience a mixture of strong feelings, including joy, concern, relief, guilt, and fear. Some people say they appreciate life more after a diagnosis of medulloblastoma. Other families stay very anxious about their child’s health and become uncertain about coping with everyday life.
One source of stress may occur when frequent visits to the health care team end after completing treatment. Often, relationships built with the health care team provide a sense of security during treatment, and children and their families miss this source of support. This may be especially true when new worries and challenges surface over time, such as any late effects of treatment, educational issues, emotional challenges, sexual health and fertility concerns, and/or financial issues.
Every family faces different concerns and challenges. With any challenge, a good first step is being able to recognize each fear and talk about it. Effective coping requires:
Understanding the challenge your family is facing,
Thinking through solutions,
Asking for and allowing the support of others, and
Feeling comfortable with the course of action your family chooses.
It may be helpful to join an in-person support group or online community of childhood CNS tumor survivors. Support groups also exist for parents of children diagnosed with a CNS tumor. This allows you to talk with people who have had similar first-hand experiences. Other options for finding support include talking with a friend or member of your health care team, individual counseling, or asking for assistance at the learning resource center of the place where your child received treatment.
Changing role of caregivers
Parents, other family members, and friends may also go through periods of transition. A caregiver plays a very important role in supporting a child diagnosed with medulloblastoma, providing physical, emotional, and practical care on a daily or as-needed basis. Many caregivers become focused on providing this support, especially if the treatment period lasts for many months or longer.
However, as treatment is completed, the caregiver's role often changes. Eventually, the need for caregiving related to a child’s diagnosis will become much less or come to an end as your child gets older. Family counselors at pediatric cancer centers can help with this transition. You can also learn more about adjusting to life after caregiving.
Healthy living after medulloblastoma
Survivorship often serves as a strong motivator to make lifestyle changes, often for the family as a whole.
Children who have had medulloblastoma can enhance the quality of their future by following established guidelines for good health into and through adulthood, including not smoking, maintaining a healthy weight, eating well, managing stress, and participating in regular physical activity. Talk with the doctor about developing a plan that is best for your child’s needs. Learn more about making healthy lifestyle choices.
It is important that your child has recommended medical checkups and tests (see Follow-up Care) to take care of his or her health. Rehabilitation may be recommended, and this could mean any of a wide range of services such as physical therapy, family or individual counseling, nutritional planning, and/or educational assistance. The goal of rehabilitation is to help survivors and their families regain control over many aspects of their lives and remain as independent and productive as possible.
Talk with your health care team to develop a survivorship care plan that is best for your child’s needs.
Looking for More Survivorship Resources?
For more information about survivorship, explore these related items. Please note these links will take you to other sections of Cancer.Net:
Survivorship Resources: Cancer.Net offers a lot of information and resources to help survivors cope, including specific sections for children, teens, and young adults. There is also a main section on survivorship for people of all ages.
ASCO Answers Cancer Survivorship Guide: Get this 44-page booklet that can help with the transition into life after treatment. It includes blank treatment summary and survivorship care plan forms. The free booklet is available as a PDF, so it is easy to print out.
Cancer.Net Patient Education Video: View a short video led by an ASCO expert that provides information about childhood cancer survivorship.
The next section offers Questions to Ask the Health Care Team to help start conversations with your child’s health care team. Use the menu to choose a different section to read in this guide.