Rachel A. Ormsby, “Learning to Dance in the Rain: A Parent’s Guide to Neuroblastoma Diagnosis, Treatment, and Beyond” (The Ormsby Family, 2013) 180 pages, nonfiction, $9.99 USD.
Yes, the title is unwieldy, but descriptive. Yes, it is not easy to read if one has been through childhood cancer as I have. Unlike the Ormsbys, I did not get through it with my nephew’s life. So when I was asked to review this book, I agreed without hesitation but took nearly three months to read it. It wasn’t Rachel’s fault. Her writing is simple, easy-to-read, clear. It just brought back memories that are still extremely painful four years later. So why did I stick to it? Why am I reviewing it?
Because I believe in this book.
Rachel A. Ormsby tells the story of her family’s years long battle with Neuroblastoma, a form of childhood cancer. You grow to love Nathan, fight the fight with him, watch him grow. You also learn how Nathan’s life-threatening illness effected his little sister, his parents, his community. You see how various people and organisations pulled together to help in any way they could, from mowing the lawn, to giving Dad time off from the U.S. Air Force often on short notice, to sitting with Nathan in hospital, to providing support for little Kate.
But it is more than a memoir. As its title suggests, it is also a basic guide for parents who find themselves suddenly thrown into the overwhelming, harrowing world of childhood cancer. More often than not, parents have never even considered the possibility that a child can get cancer – let alone their precious child – and no one is ever the same again. It’s a lot to adjust to. And the adjusting continues throughout. There are no breaks, no breathers, and life will never, ever be “normal” again. The cardinal rule of childhood cancer: “Cry as often as you need to; but never where your child will know of it. Never let anyone else cry in front of your child, either. Even when the child is sent home on hospice and all avenues are exhausted, you still smile and you still believe in hope – for your child’s sake.” If that sounds grim, I’m sorry, but that is the reality of childhood cancer.
What Rachel offers with this book is a measure of sanity. Literally overnight in most cases, parents find themselves living out of suitcases in hospitals with rigid rules and having to learn a whole new, until then completely foreign and unthinkable, vocabulary. By the time the journey ends – whichever way it ends – they will be able to read lab results like a technician and round-table talk with a team of doctors like a pro. But at first, it’s all confusing, overwhelming, and too much to process. There were four of us: my grandmother, my mom, my sister, and I. It took all four of us to recall the whole of what doctors said to us because there was so much information to remember. Rachel condenses the most important bits in an easy-to-read format to help you remember and anchor yourself.
She discusses some of the rules and protocols some hospitals may have concerning your child’s care and hospital living. She provides a glossary of basic terms and acronyms that must become part of your everyday vocabulary. She explains some of the tests, treatments, and options you may have for your child. She outlines some of the long term and permanent side effects and how to cope with them. Most valuably, she offers practical suggestions for making the entire unbearable mess a little easier. I especially liked the suggestion of keeping a journal to help you keep track of tests, side effects, medications, schedules, and even things your child says or does that you may forget later (and trust me, you will never want to forget anything, even the bad stuff). The most helpful sections of the book, I think, are the provided spaces for making notes that apply what you’ve read to your child’s unique circumstances and the chapter listing various organisations that have been founded with the goal of making childhood cancer just a little easier, a little happier, if only for a moment. Included are parents’ support groups, wish fulfilling organisations, patient advocacy groups for mediating with insurance companies, and groups which organise periodical gifts for your child and any siblings.
Rachel’s guide is a labor of love that fills a real gap in medical literature at this point. It is by no means all inclusive, nor claims to be. It is a very basic guide at best since childhood cancers are highly individualised, but it can be a true help to parents who are reeling in the first shock-and-awe of being ripped from “normal life” and thrown irrevocably down the rabbit hole of horror that is childhood cancer. Rachel has done a great service with this book as a guide to parents, but also as a means to raise awareness regarding childhood cancer among those still blissfully living “normally”. Because in this case, what you don’t know can hurt you.