Many different types of programs are available for children and families. Some of these are provided in the hospital and others are found in the community. Team social workers, psychologists, and nurses usually can help you find them. Some kinds of programs offered are:

Support groups

These may be for parents, siblings, or children with cancer. They may be only for certain groups of patients, such as teens or patients with a certain kind of cancer. Some are offered in hospitals and clinics, and others through organizations like the American Cancer Society, the Leukemia and Lymphoma Society, or the American Childhood Cancer Organization.

School programs

Medical centers may have organized school programs, planned school re-entry programs, education programs for staff members at the child’s or sibling’s school, and contact with classroom teachers or teachers who teach homebound or hospitalized students. Some use volunteers for tutoring.

Patient-parent visitation programs

Where available, these programs help parents meet other parents with common factors such as children’s ages, diagnoses, or the area in which they live.

Buddy programs

These programs use volunteers (sometimes university or medical students) to play with or befriend patients.

Summer camps

Many medical centers, communities, or groups like the American Cancer Society, sponsor summer camps for children with cancer and sometimes siblings, too. The focus is on the fun aspects of the camping experience, rather than on having cancer.

Special events

Medical centers often develop special programs to meet fundraising, recreational, or educational needs of children with cancer and their families, such as conferences on certain diagnoses, parent weekends, picnics, and survivors’ days.

Wish fulfillment organizations

Many agencies are set up to grant the wishes of seriously ill children, including cancer patients. Some accept parental referral, but most ask for referrals from a doctor or other team member.

Ronald McDonald Houses

These houses originally were created to be a home away from home for children with cancer and their families. Now they often serve children with other serious illnesses, too. They give parents and children who are outpatients a place to get away and relax, offer another option besides staying in the hospital, and have low or no-cost housing for families during treatment. They also help provide parent-to-parent connections and support.

Follow-up care for the child after treatment

Regular follow-up exams will be very important for many years after treatment of childhood cancer. The doctors who treated the child’s cancer will watch for signs that the cancer has come back, as well as for short-term and long-term effects of treatment. These effects vary with each patient and with each type of treatment. Long-term effects may call for regular monitoring, and follow up each time a new medical problem shows up. Cancer treatment may not have caused the new medical problem, but may still play a role in the type of care the cancer survivor can get for the problem. Or, it may affect how the survivor responds to the problem or its treatment.

Getting and keeping medical records

It is important to know what kind of treatment your child has and what impact this treatment might have as the child grows up. Ask the doctor to help you stay aware of what long-term effects might occur based on the treatments your child gets. And be sure your adult child knows the details of their childhood cancer and its treatment, so that this information can be given to new doctors.

As your child’s cancer treatment winds down, you will need to get copies of treatment records. To start, contact the doctor who treated your child. If any treatment was given at a hospital or clinic, you will need to contact them, too. These records are usually destroyed at some point, and may not be available more than a few years after treatment. There are certain pieces of information that you and your child should have, and keep for the rest of your child’s life:

• Copies of all pathology reports from biopsies and surgeries.
• If there was surgery, a copy of the operative report (or reports, if there was more than one surgery).
• If there were hospitalizations, copies of the discharge summaries doctors prepare when patients are discharged from the hospital.
• If the child had chemotherapy, a list of the total dose of each drug used. Certain drugs may have specific long-term side effects. If you can get a list of drugs from the pediatric oncologist, it can help any new doctors your child has should one of these effects surface.
• If radiation was given, a final summary of the dose and field.
• If your child had a hematopoietic cell transplant (HCT) or bone marrow transplant, you need to know the exact type of transplant and whether your child had chronic graft versus host disease, or any complications.
• Any problems or complications (serious enough to require hospitalization or other treatment) your child had during or shortly after cancer treatment.

Treatments that are used to beat cancer can cause delayed effects that may lead to problems later on. While these result from life-saving treatment, your child and your child’s future doctors need to know about them. Researchers are looking for ways to reduce long-term effects, but right now, children who have been cured of cancer may have to deal with some of these effects for the rest of their lives. For more information, see our document called Childhood Cancer: Late Effects of Cancer Treatment.

Long-term follow up for childhood cancer survivors

Along with watching your child to see if the cancer comes back, there are other special types of follow-up care. Because children and teens with cancer may face lifelong physical and emotional issues, there are guidelines for follow-up care that is designed to look for and help with them.

These special childhood cancer follow-up guidelines are fairly new, and facilities that use them may not be easy to find. But they can offer a unique perspective for parents and survivors of childhood cancer. You can learn more about the guidelines and download them for free at the CureSearch Web site: www.survivorshipguidelines.org. The guidelines are written for health care professionals, so you might want to go over them with your child’s doctor.

Some larger cancer treatment facilities have set up special follow-up clinics for childhood cancer survivors. They help the child, teen, or young adult adjust to their new lives after cancer, including school issues, emotional changes, and employment challenges. But they do not replace the child’s cancer doctor’s medical follow up during and after cancer treatment.

Follow-up clinics offer prevention and screening information. For example, girls who got radiation treatment to the upper chest should get extra breast cancer screening tests in adulthood. Some measures depend on which chemotherapy drugs were used; for instance, children who got the drug busulfan should have their eyes checked each year for cataracts. There are some special tests based on when the child was treated, both by age and year of treatment.

Follow-up clinics also offer help for those with certain types of complications. For instance, those who had stem cell transplants and chronic graft-versus-host disease need more frequent cancer checks. Some types of screening are only done the first 10 years after treatment, but others may be done for many years after that.

Some of the emotional impact of childhood cancer may show up years after the cancer is treated. Special childhood cancer follow-up clinics can often help the survivor deal with these effects as they arise over time. Even teens and young adults who completed cancer treatment long ago may benefit from this type of follow up.