Nancy Keene manages to compress the whole possible experience of childhood leukemia into this 400+ page book. She talks about every aspect of a child’s illness and potential outcomes.
 

The text starts by guiding readers through the different varieties and subtypes of leukemia, with the assumption that the reader has absolutely no baseline knowledge of health care whatsoever, let alone leukemia. The use of the first person stories helps to illustrate the text and be much more digestible than the medical tome it initially appears to be. Additionally, the appendices in the back addressing blood tests, resource organizations and other resources are a great reference for parents and professionals alike.

The bulk of the book is filled with chapters detailing treatment and related topics from “Forming a Partnership With the Medical Team” to “Central Venous Catheters” to “Insurance, Record-keeping, and Financial Assistance.” Keene does a wonderful job of balancing the complex health care world with practical advice and real world stories from patients and families. The chapters try to cover a wide expanse of experiences and encompass what the vast majority of patients are likely to experience while also acknowledging that all children are unique and that each child’s team should be consulted for individual advice. The book goes on to cover post-treatment experiences including immediate after-care, relapse, hospice care, death and bereavement. I appreciate that the author did not shy away from these difficult topics and was able to address them in a direct but sensitive way, often relying on stories from parents to help illustrate her points.

The author’s accurate information about hospice, in particular, may be helpful to refute the myths about hospice that are often found on the Internet and, even, floating around hospital hallways. Although she acknowledges that recovery may note be possible, Keene manages to encourage parents and caregivers throughout the book by buoying them with statistics and cure rates as well as success stories from other families and reminders that they did nothing to contribute to their child’s cancer without instilling false hope.

I imagine the excerpts from families will be the parts of the book that parents will be drawn to the most. The stories those families provide are real in a way that an author’s words cannot be and they add great value to the book. They help explain definitions by giving a real world scenario. For example, Keene introduces a symptom such as anemia and follows it with a parent story about a time her child became anemic, what it looked and felt like for their family.

Very practical advice is also included. For example, a sample letter to notify a school of a child’s illness, buying gel caps to cover pills, tips on conflict resolution and reminders that, even though the children are minors, they have a say in what is happening with their treatment and how to navigate those tricky conversations.

Keene educates caregivers on what behaviors and emotional responses to expect from patients and children and methods to respond to them, and gives friends and family helpful, practical advice on what/what not to do/say to be helpful to the family during and following a child’s treatment. And—she goes one step further to give insight to well-meaning loved ones as to why those gestures are not helpful. All of this great information in one place makes this book an indispensable resource for families and loved ones of a child being treated for any variety of leukemia and a great resource for oncology social workers to have in their library.