When you hear the words, “Your child has cancer,” your whole world stops, without permission, as you and your child are thrust onto the rollercoaster ride of pediatric cancer, desperate to get off with your sanity and your child’s life intact. Those months, or as was the case for us, years in treatment, are relentless, fraught with confusion and uncertainty as you desperately and constantly search for answers. For direction. For hope.
We had the most amazing medical team ever. Still, it became clear early on that it was not their job to help me figure out how to manage everything a parent needs to know and do beyond the medical protocol. After all, they were busy saving our child’s life. One of my many coping strategies was constantly seeking out examples of cancer cases that turned out well, as I was desperate for proof that we might make it through this horrific journey with our child alive.
What I never expected to find, some 25 years later, was purpose and meaning in that horrific journey and the ability to be the hope for others, as I so needed others to be for me.
The idea of cancer choosing my daughter, our family, and my life left me speechless. If you’re a cancer patient or caregiver, you’re probably a little speechless right now, too. It also left me pissed off and made me become a fierce warrior for my daughter, our family, and myself.
Cecilia is one of the lucky ones. She survived.
I know that’s your number one hope — that you, your child, your loved one survives and that life can get back to some kind of “normal.” Maybe you’ve already done a little light Google searching on your loved one's form of cancer. Not fun, is it? Yes, cancer survival rates have improved across the board, yet the incidence of childhood cancer has continued to increase over the last thirty years.
Wow.
The good news is that about 80 % of children diagnosed with cancer today survive. Let that really sink in — 80 %. Compare that to children in the 50s, 60s, and 70s. About half of them died. This significant increase in survival is thanks to the incredible work of oncologists, nurses, and researchers worldwide. I am eternally grateful to our oncology team because I know firsthand what amazing work they did for our child and so many others. An 80% survival rate is something to be grateful for. But the first time I heard that, it really didn’t make me happy.
The number of kids who still die today overall — 20% — or who are left with life-altering side effects from the drugs that cure them, is far too high. That is precisely what The Leukemia & Lymphoma Society (LLS) and the Dare to Dream Project are fighting for! The thought that one of those statistics might be Cecilia pissed me off, too, and put me on a mission to help parents like us not just survive this cancer expedition we’ve been forced to take but come out on the other side intact — maybe even stronger as a person, tighter as a family, determined to find a new chapter once your child is cured. Empowered.
I began taking notes over 25 years ago during Cecilia’s treatment when I realized there was no guidebook to help me. Yes, there was a protocol for the medicine that would hopefully let her be one of the survivors and one book geared towards helping us understand the medical side of treatment (which I was very grateful for), but there wasn’t significant information for everything else, including what I could do to contribute to her cure and her daily life during treatment.
- No book with suggestions and advice on how to keep my family intact during this crisis.
- No toolbox for learning how to ask for help from my loving friends and family, who were at a loss for what to do.
- No handbook for how to talk to our medical team and become a collaborator.
- No resource about how to manage the fear and anxiety surrounding a child’s life-threatening illness.
What did I want? I wanted help. I wanted hope. I wanted one book with all that information and more from somebody who’d been there, done that, and who had lots of expert advice to share.
It didn’t exist.
The lack of information for parents navigating everyday life with cancer was heartbreaking and utterly frustrating. Thanks to our local family support group, Jacob’s Heart Cancer Supportive Services, and the bevy of amazing moms I met at the clinic and online, I eventually found my way and my strength. But it should not have been so hard, and I was pissed off, sure that everything I needed to know about how to navigate life with cancer at home and the hospital was there, somewhere, for all cancer parents. But it wasn’t. During treatment, I turned this frustration into constructive habits, and before long, I knew I had a book in me. I saw it as my way of giving back, of being the hope — someday.
With a little more downtime during COVID-19, I revisited my promise to give back to our pediatric cancer community and did some research. I quickly discovered that even 20+ years later, parents of kids with cancer still didn’t have the tactical resources they needed for everyday life. It was time to get to work. I wasn’t just fighting for my kid anymore. I was fighting for every cancer parent out there who didn’t have the time, energy, or emotional bandwidth to figure this out alone.
The Cancer Parent’s Handbook: What Your Oncologist Doesn’t Have Time to Tell You was published on February 16, 2025, Cecilia’s 30th birthday. Now, that’s hope!
The Cancer Parent’s Handbook combines my ambition and desire to help others with the uncanny unfolding of destiny, meeting one person after another, links in a chain that ultimately connected me to getting this book into the hands of cancer parents worldwide. None of it felt like a coincidence, as each person along the way simply led me here in the most intentional and magical way.
My goal? To be the hope for newly diagnosed families, just like so many were for mine, and to arm parents of kids with cancer with practical strategies, not just from me, but from fellow parents in the trenches and a team of oncologists and nurse practitioners who shared their expertise in the book.
Hope isn’t just about believing things will get better, it’s about knowing that even in the hardest moments, you’re not alone. It’s in the hands that reach out, the voices that say, “I’ve been there, I’ve got you,” and the small victories that remind you to keep going. So, hold on. Keep hoping. And when you’re strong enough, turn around and be that hope for someone else.
Laura
Parent, Caregiver, Advocate, Supporter/Donor
