Be Your Child’s Advocate

Parents may need to educate other family members, friends, school personnel and healthcare providers about long-term and late effects. Here are some steps parents can take:

  • Talk to your child's doctors and discuss the potential for long-term and late effects, as well as an ongoing plan to evaluate potential effects of treatment.
  • Keep a record of physical and emotional symptoms that your child experiences and discuss them with your child's treatment team.
  • Make sure that your child's oncology team, primary care providers and specialists — cardiologists, allergists and endocrinologists, for example — are in communication.
  • Keep all medical records, including dates and locations of treatment, specific drug and supportive therapies (such as blood transfusions) and doses and specific sites and amounts of radiation therapy, if applicable. Keep copies of blood, marrow and imaging test (MRI, CT scan, x-ray) results.
  • Ask your child's doctor for a written summary of your child’s cancer treatment, including names of all drugs used, whether radiation was used, what type of surgical procedures were performed and whether your child experienced any unusual or severe acute complications of cancer therapy.
  • Help your child develop and maintain a healthy lifestyle after treatment ends, including appropriate exercise, sun protection, good nutrition and not smoking. Enlist the help of health professionals as needed.
  • Keep follow-up appointments with the oncology team even if your child is feeling well.

 Read the PDF, Beyond Treatment, for more information on survivorship and life after treatment.

Transitioning to Adulthood 

Your child’s need for follow-up care will continue even after your child becomes an adult. Educate your young adult on the importance of follow-up care.

Keep in mind that the day your child becomes a legal adult, members of the healthcare team will start asking him or her to make medical decisions and sign consent forms. Your young adult will need to give providers permission in order for healthcare professionals to communicate with you about his or her medical information.

Your young adult will need to determine who will be the primary decision maker for his or her continued medical care. Some young adults may feel more comfortable leaving their parents in charge of their care. Other young adults may wish to take a more active role. You may need to step back and allow him or her to make decisions. Either way, be respectful of your young adult’s wishes. Remind your young adult to tell members of the healthcare team who will be the main contact person.

If your young adult moves away for college or work, he or she will need to find new healthcare providers to continue follow-up care. Your young adult can ask members of the healthcare team for a referral to a survivorship program in his or her new city. If there is not a survivorship program nearby, help your young adult to find a good primary care provider who can provide the necessary follow-up care. Your young adult can also ask the insurance provider for a list of in-network providers. Any new providers will need to know your young adult’s detailed medical history and survivorship care plan. You and your young adult should work with members of the healthcare team that treated the cancer to coordinate care and transfer medical records to new providers.

For childhood cancer survivors, maintaining health insurance is very important. Young adults can remain on a parent’s health insurance plan until they turn 26 years old. After that, they will need to find their own health insurance plan. Young adults also need to learn how to create and follow a budget and to manage their finances.

Visit Got Transition for a list of available healthcare resources and more information for you and your young adult about the process of transitioning from pediatric healthcare to adult healthcare.

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