One of the first questions you might have asked the cancer care team after your child was diagnosed with cancer was "When will this be over?" After many weeks, months, and even years you might find that the end of treatment is both exciting and little scary. It's important for your child and loved ones to know that it can take time to adjust to being done with treatment.
Adjusting to the end of treatment
Some families find that when treatments and medicines stop, everyone may feel a little worried and afraid. You or your child might be afraid the cancer will come back when treatment stops. You might also feel unsure of how your child will do when they return to school and other activities. Many families find they miss seeing the people on the cancer care team as often as they did during treatment. Here are some things you can do to help manage different feelings you might have when treatment ends.
- Talk to your cancer care team if you are concerned about the cancer coming back so you know what to watch for and how they will be checking your child for signs that cancer has returned.
- Ask what follow-up schedule you will have, including when your child will have labs or other tests that can tell you more about how they are doing.
- Talk to other parents whose children have finished cancer treatment.
- Know that fear of cancer coming back may never go away completely, but most people find it does get better with time.
- If you or your child are finding are finding that you spend a lot of time worrying about the cancer coming back, talk to the cancer care team about referrals for counseling or other kinds of support for managing stress and anxiety.
- Know that it's normal to have a hard time when treatment ends, even if you and your family have been looking forward to it.
What do children need to help them?
Your child's reaction to being done with treatment usually depends on their age, personality, type of treatment received, and other factors. The most important thing is for them to grow and develop the same way they would if they had never had cancer. For some children the first few months and years after treatment are a time of catching up with peers. As much as possible they will find security in routines and knowing what to expect day to day. Here are some tips for things you can do to support child development and create routines for children of different ages:
Infants and very young children
- Should start catching up with physical and social development when treatment ends.
- Benefit from caregivers talking and reading to them, with time for face-to-face interaction.
- Should have time to interact with other infants and children their age, such as in day care, play groups, or music classes.
- Develop through playing with toys they can safely hold and pick up.
- Need consistent caregivers and regular routines for eating, sleeping, playing and other daily activities.
- If infants and very young children do not seem to be doing things that other children their age are doing, they might need what is called an Early Intervention Evaluation to identify areas where they need extra help.
- Some services that can help children when they need help meeting developmental milestones include: physical therapy, occupational therapy, or speech therapy. Talk to your cancer care team about any concerns you have about development and ask for a referral for this kind of evaluation.
Toddlers and preschoolers
- Consistent limits and rules help toddlers and preschoolers feel more secure. Caregivers can be clear with the child about what the rules and limits are so they know what to expect.
- Need time to play as a way to explore the world around them and understand it.
- Play time should include time interacting with children their age and time playing alone. Preschool, regular play dates, or classes for children their age to provide time for interactive play. Quiet time that supports alone play can be added to daily routines. You might try a daily quiet time that allows alone play, especially if your child stops napping regularly.
- Can be encouraged to be as independent as other children their age. They might be ready to begin or continue toilet training, learn to dress themselves, or put on their own shoes.
- Should return to school as soon as they are able. Going back to school supports social, academic, and coping development and provides a consistent daily routines. See Returning to School After Treatment Ends for more information.
- Can resume activities they enjoyed outside of school or find new activities to try. Developing or advancing skills build self-esteem and a sense of accomplishment.
- Usually enjoy forming relationships with other children and enjoy being part of programs for kids with cancer, even after treatment ends.
- Might be more afraid about treatment ending and worry about it. Make sure they have correct information about how they will be cared for and ask them to let you know if worrying is making it hard to do things they want to do or is keeping them up at night.
- Might find it hard to be seen as a "normal" kid after having cancer. Stay in contact with the child's school so any problems can be addressed quickly.
- Might find it hard to get back into the relationships with friends they had before treatment and feel upset. It can help to have a trusted adult that teens feel comfortable talking to about their feelings. This could be a parent, other caregiver, teacher, or member of the cancer care team.
- Might be ready to take on more responsibility at home and can be encouraged to manage the things they are ready for. Many teens are ready and can be encouraged to help make appointments, learn to drive, or get a job.
- Can enjoy discussing issues and ideas with parents and other caregivers. It might help to ask teens questions about their ideas and decisions without being critical.
- Might need support with school work and help making plans for life after high school. As they transition to adulthood, this is a time for them to explore opportunities that will help them reach their goals. See Returning to School After Treatment Ends for more information.
- Might be ready for some rules to be relaxed, especially as they show they are ready for more responsibility.
- Might think it is OK to stop follow up visits or other care. Education about long-term follow up care and support to help them follow through can help them. Late Effects of Childhood Cancer Treatment explains why follow-up care is important.