Every three minutes a child is diagnosed with cancer. The devastation of the news can cripple a family as they are faced with the challenges ahead. They will have to alter their normalcy to routines of tests, tears, chemo, surgeries, advocacy, medication, child life, hospitalization, resiliency, and build friendships with medical team members, patients and families.
One mother is standing up against Neuroblastoma and providing a guide book to the caregivers affected by the diagnosis.
About the Book
When Nathan was first diagnosed with neuroblastoma in 2006, our family entered a world we knew nothing about. The world of childhood cancer is terrifying and complicated. We had a lot to learn and quickly. We had to learn about treatments, scans, blood draws, labs, medicines, and side effects, including how to handle them. We looked for help from other parents and Nathan’s medical staff. One thing that would have helped was a guide that we could have read and made notes in as we traveled this path. A guide to all those things other families have already learned. Something we could have carried around with us that would help us make sense of this new vocabulary and the things we needed to know. This book is for just that purpose. It is intended to help navigate some of the things you will find during your child’s treatment and recovery from cancer. It is not intended to be inclusive or to replace the doctors; it is intended to share experiences and knowledge, parent to parent. This book contains what my family has learned from the medical staffs we have worked with, other parents, and the kids we have been privileged to meet on our journey.
The book is organized into sections by topic so the reader can flip to whichever section is needed.
- “Cancer 101” is a short course on cancer treatments and scans. It has a lot of the technical information with a bit of personal experience.
- “Bone Marrow Transplant” describes the unique things that are associated with a bone marrow transplant (BMT). BMT is such an extensive and unique treatment it gets is own section.
- “How to Manage Cancer 101” is our families experiences. It has all those things we have learned during our journey. Topics include assigning blame, keeping family and friends informed, loving on the other family members, accepting help, defining primary and alternate care givers, and relating those funny hospital humor stories.
- “Types of Medicine” is about the many types of treatments and medicines available. This section talks about things like clinical trials, FDA approved drugs, supplements, and researching new medicine or treatment options.
- “Long Term Side Effects” is about the late effects that Nathan has experienced and how we have addressed them. Topics include hearing loss, learning issues, physical therapy, pain and a general attitude of being a cancer survivor.
- “Wish Trip” describes the trip Nathan was given by the Special Wish Foundation. This section describes our trip so that when the time comes for your “Wish” from your local “Wish” foundation you can have an example of what one is like.
- “Organization and Resources” is a short list of those groups that helped us. Links are included on this website to each of these resources.
- Finally, there is a glossary of terms and acronyms that is used in the book. An inclusive list of all those new words that you hear in the hospital would be a book of its own.
Where to Get a Copy
The book is available on Amazon and also through their website Dancingintherainnb.com. They have teamed up with a Christian Ministry called MJ Ministries to help raise funds and provide books for free. You can request an English or Spanish copy here or make a donation to help continue this free service for families.
This is an amazing book that provided me with additional insight to working with children and families affected by an illness. I would strongly recommend it to families facing neuroblastoma and medical professionals working in the field.