Neuroblastoma isn’t rocket science, it’s more complicated. So after the young son of aerospace engineer Rachel A. Ormsby was diagnosed with Stage IV neuroblastoma in 2006, Ormsby decided to write a book to help others navigate the new world into which her son Nathan and the entire family had been thrust.
“Learning to Dance in the Rain: A Parent’s Guide to Neuroblastoma Diagnosis, Treatment and Beyond” is not intended to be encyclopedic; it simply shares experiences and knowledge, parent to parent. The 187 pages are organized into sections such as “Bone Marrow Transplant” and “Types of Medicine.” The book also tackles topics such as “How to Manage Cancer 101,” which covers emotional pitfalls such as assigning blame. A glossary decodes the acronyms that are suddenly household names. A Facebook page for the book invites families to share lighter moments and hospital humor that only those in similar shoes can appreciate.
The book won’t earn Ormsby another patent, as her engineering work has, or additional income. As a gift to other families, she and her husband, Scott, offer the book for free download in PDF format on http://www.dancingintherainNB.com
. She doesn’t see a point to selling it, because she would funnel proceeds back to the families coping with the disease. It is $2.99 on Kindle, the minimum charge allowed. “We don’t plan on making money or raising money,” Ormsby said, “we just want to make some families’ lives that little bit easier.”
Those who want a paperback copy can e-mail dancingintherainNB@gmail.com
. The book is dedicated to Ormsby’s children, Kate and Nathan, who turns 11 in November. Nathan’s condition has been stable for five years.