What Parents Can Expect When a Child Has Cancer

What Parents Can Expect at the Time of Diagnosis of Child with Cancer

  • Parents faced with a new diagnosis of cancer in their child experience a period of shock, grief and sadness, numbness, fear, helplessness, guilt, anger, and confusion that may vacillate from one extreme emotion to another and may reappear at different times during the child’s treatment. These are all normal emotional responses to the stress of learning of a diagnosis of cancer in your child.
  • Shock and denial turn into hope and “what can be done” as parents learn about the treatment for their child and how they will become an integral part of the treatment and care team in helping their child survive.
  • Whether you have an infant, young child, school-aged child, or teenager with cancer, treatment will require at least one parent to remain with that child at least for the initial phases of therapy for some diagnoses and for all of therapy for others, due to the intensity of the treatments, multiple clinic and or hospital visits, need to administer medications, and to monitor for side effects. This invariably requires adjustments in work schedules or employment, especially if both parents are employed outside the home and/or obtaining outside help from family or professional caregivers.
  • If you have a school- or college-aged child diagnosed with cancer, depending on the diagnosis, the child may need to remain out of school for a period of time with homebound instruction or, if college aged, temporarily withdraw from school or take classes online.
  • Financial concerns may arise due to loss of income, increased medical expenses due to deductibles and co-pays, transportation costs, child care for siblings, travel to distant treatment centers, etc.
  • Parents will also face challenges with how to communicate to the child and siblings about the diagnosis, treatments, procedures, and impacts on the body and appearance, family routines, school, and relationships with peers and the outside world.
  • Parents will also be challenged to learn and master an enormous amount of information about their child’s treatment, roadmap, protocols, specific side effects to chemotherapy, medical terminology, tests and procedures, giving medication, potential complications and what to look out for, and new routines.

What Parents Can Expect During Treatment

  • As treatment and clinic and hospital routines become more familiar, focus may shift to how you as parents and/or a couple, and your child and siblings are coping emotionally. It’s important to try to maintain as much “normalcy” in the child’s and family’s life as possible, which includes maintaining appropriate limits and discipline, going to school or working with a teacher for those who are home bound, social connections and play dates, exercise, bedtimes, family outings, contact with grandparents and other relatives, and “couple” time. Balancing attention given to siblings is especially important.
  • Often there will be an outpouring of support at the beginning of treatment from the community—including neighbors, the school, co-workers, and friends—to offer practical support, conduct fundraisers, deliver meals, run errands, etc. Usually, that support drops off after several months or years in treatment. Many parents continue to enjoy enormous support, and others feel isolated and alone in their journey.
  • Many families gain a tremendous amount of support by being involved with one of many childhood cancer organizations, which serve to connect families, provide counseling or education, and offer recreational opportunities for the whole family. Please refer to “Life with Cancer: Pediatric Oncology Resources”
  • Treatment for some may involve consultations or therapies, including transplant or proton beam radiation, at other or multiple treatment centers out of the area for long periods of time. This situation causes tremendous physical, emotional, and financial challenges for parents trying to maintain employment, care for siblings, manage the household and schoolwork, and meet the needs of all family members.
  • Cancer for some may involve relapse or progression during therapy or recurrence after completion of treatment. Relapse means much uncertainty as new or additional, more-intense therapies are initiated.

What Parents Can Expect At the End of Therapy and Beyond

  • At the end of therapy, parents often have intense feelings and mixed emotions running the gamut of relief, joy, elation, fear, sadness, loss, guilt, and grief, often with many unanswered questions. These emotional responses are all normal and not unexpected.
  • Parents will have hope that life will now return to “normal” and worry that it may not; hope that they can now put cancer behind them, but find often that they can’t; and hope that there will be no long-term consequences, but worry about potential late effects and impact on quality of life. These are also normal responses to having completed therapy.
  • Parents will have to navigate a new normal of living without the safety net of frequent medical appointments and may have increased worry and anxiety about recurrence and flashbacks about previous therapy. Gradually, families come to terms with the new life after cancer, not quite the same as before, but enriched by friends they have met and experiences they have had along the way.
  • Follow-up visits with an emphasis on recovery and transitioning back to health as well as cancer surveillance will persist for many years. Two years after completion of therapy, survivors and families will be transitioned to long-term follow-up, which focuses on late effects and quality of life.
If you are affected by cancer, we invite you to connect with us—whether you're a patient, family member, or friend.