By KAY HUNTER SABER
In April 2016, our youngest son, Ramsey, was diagnosed with Philadelphia chromosome-positive acute lymphoblastic leukemia (Ph+ ALL). From that moment onwards, everything we knew as a family changed. What followed was two years of intensive chemotherapy in Spain, and then a bone marrow transplant in London in 2019.
My husband and I took it in turns at Ramsey’s bedside, alternating every 48 hours until we were too exhausted and had to go down to every 24 hours. Over the course of treatment, he was put under general anesthetic 23 times. We learned to feel his skin for fever -that’s one of the first things you learn. You learn to stay alert even when your own body is begging for sleep. There is no “off switch” when you are caring for your child through such an intense experience and you live in survival mode. This medical protocol meant weeks and sometimes months at a time in the hospital. To enable us to get through these endless days and nights we created healing spaces in his hospital rooms. We prioritized keeping everything super clean, often using essential oils where permitted, finding natural light where we could. We sourced bone broth and nutrient-dense foods and explored complementary approaches… breathing techniques, physical exercises both in and out of bed, all of which I have shown in written and illustrated form in the book, “Step by Step”.
After his transplant, our cancer nurse specialist, Filippo, asked me a question I have never forgotten. He wanted to know what we had done that meant Ramsey could leave the hospital early and, more importantly, not come back with a secondary infection. Up to 75% of patients develop a significant post-transplant infection. Ramsey did not. Filippo had seen the hospital rooms we stayed in, how we managed the space, and he felt it was something worth sharing. For seven years I have avoided writing about it. Procrastinated. Possibly just couldn’t. Ramsey’s story belongs to him and is not for me to tell. But Filippo’s question… it stayed with me and eventually I sat down and began to put together what became” Step by Step: A Parent’s Guide to Caring for a Child with Cancer.” It is not a medical book. It’s a practical, holistic guide, carer to carer, covering things like creating healing spaces, using food as medicine, building your support network, looking after yourself as the caregiver, advocacy, and emergency preparedness. All the things I wish someone had handed me on day one. It’s small enough to fit in a handbag, with notes pages at the end of each chapter so you can write down your own questions and concerns to take with you when you see your medical team.
I am hopeful that something in it will be of help. Even one tip, one piece of advice, if anything in these pages can help one other person — one child, one family – then Filippo’s question was worth answering. I want it to reach families when they need it and give them something practical to hold onto. Nine years on from diagnosis, Ramsey is here. We are no longer going to hospital for daily, weekly or monthly blood tests.
For the first time since 2016, we feel “off the leash.” I am only now just feeling, after all these years, that we are stepping back into the world of light. I don’t know how long that takes… it has taken us a very long time, but we are getting there. If you are reading this and you are somewhere in this journey, I want you to know that you are stronger than you realize.
Trust your instincts. Be your child’s advocate. Look after yourself too, learn to accept help when offered and on the difficult days, take it a breath at a time. Step by step. Paso a paso.
Here are the links to where the book is published:
USA – https://www.amazon.com/dp/B0GSX46FMP
UK – https://www.amazon.co.uk/dp/B0GSX46FMP
Plus, for a free PDF of our book, visit www.theoilchemist.com