While researching this book, I was repeatedly told by parents to "write the truth." Because the "truth" varies for each person, more than 100 parents, children with leukemia, and siblings share portions of their experiences. This book is full of such snapshots in time, some of which may be hard to read, especially by those families of children newly diagnosed. Here are my suggestions for a positive way to use the information contained in this book:
• Consider reading only sections that apply to the present or immediate future. Even if your child's prognosis indicates a high probability of cure, reading about relapse or death 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 while encountering difficulties in others. The more you understand about 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 oncologist and/or pediatrician for answers (or more questions). The more you learn, the better you can advocate for your family and others.
• I have struggled to keep each chapter short and the technical information easy to read. If you want to delve into any topic in greater depth, Appendix D, Books and Online Sites, is a good place to start. It contains a short list of pamphlets and books for parents as well as children of all ages. Reading tastes are a very individual matter, so if something suggested in the bibliography is not helpful or upsets you, put it down. You will probably find something else on the list that is more appropriate for you. (If you are interested in more technical information, a bibliography of medical journal articles can be found online at http://www.patientcenters.com/ leukemia.)
• Share the 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.
Best wishes for a smooth journey through treatment and a bright future for the entire family.
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