Childhood Cancer

Childhood Cancer Survivors

Childhood Cancer Survivors

A Practical Guide to Your Future, 3rd ed.

By Nancy Keene, Wendy Hobbie, Kathy Ruccione

More than 420,000 children, teens, and adults in the United States are survivors of childhood cancer. The surgery, radiation, chemotherapy, and stem cell transplants used to cure children can affect growing bodies and developing minds. If survivors know of these potential problems, they can take steps to identify, cope with, or treat them early if they do develop. Childhood Cancer Survivors charts the territory for survivors by providing helpful information about:

  • Medical late effects
  • Emotions
  • Follow-up care
  • Staying healthy
  • Jobs and insurance

Woven throughout the text are true stories—practical, poignant, moving, funny—from more than 100 survivors of childhood cancer.

How to Use this Book

While conducting research for this book, we were repeatedly told by parents to “write the truth.” Because the “truth” varies for each person, more than 100 parents, children with brain or spinal cord tumors, and their siblings share portions of their experiences. This book is full of these snapshots in time, some of which may be hard to read, especially by families of newly diagnosed children. Here are our suggestions for a positive way to use the information contained in this book:

Read the last chapter first. Many children survive and it helps to read their stories.

Consider reading only the sections that apply to the present or the immediate future. Even if your child’s prognosis indicates a high probability of cure, reading about recurrence or bereavement can be emotionally difficult.

Realize that only a fraction of the problems that parents describe will affect your child. Every child is different; every child sails smoothly through some portions of treatment but encounters difficulties during others. The more you understand the variability of cancer experiences, the better you will be able to cope with your own situation, as well as be a good listener and helpful friend to other families you meet with differing diagnoses and circumstances.

Take any concerns or questions that arise to your neuro-oncologist and/or nurse practitioner for answers. The more you learn, the better you can advocate for your child.

Share this book with family and friends. Usually they desperately want to help and just don’t know how. This book not only explains the disease and treatment but also offers dozens of concrete suggestions for family and friends.

If you want to delve into any topic in greater depth, Appendix C, Books and Websites, is a good place to start. It contains a list of reputable websites and an extensive list of books for parents and children of all ages. Reading tastes are very individual, so if something suggested in the appendix is not helpful or upsets you, put it down. You will probably find something else on the list that is more appropriate for you.

Best wishes for a smooth journey through treatment and a bright future for your entire family.