Table of Contents
By Dagmara Beine, PhD, PA-C
My daughter, Zuza, was born on July 1, 2011. As a baby, Zuza didn’t smile for a long time, most of her baby pictures show her eyebrows furrowed, almost as if she was contemplating what this human experience would be like for her. Along with her contemplative nature, she was also an incredibly sweet and easy baby.
At age three, Zuza began to complain of leg pain. She lost her appetite and some weight. She started picking up frequent colds and would take longer to get over them. My husband, Ryan, and I both worked as emergency room physicians’ assistants, and between our combined medical experience and our parental intuition, we sensed that something serious might be wrong. We pressured Zuza’s pediatrician to run labs.
On a Tuesday afternoon at the end of February 2015, I found myself anxiously awaiting the phone call that would change our lives forever. I still remember the feeling in my body, like it already knew what my mind was about to learn. That morning, I took the phone into the shower with me to be sure I wouldn’t miss the call.
Eventually, it rang and the pediatrician confirmed my fears. Zuza’s lab results suggested that she had acute lymphoblastic leukemia (ALL)—a fast-moving cancer of the blood and bone. ALL is the most common leukemia diagnosis in children. Because ALL progresses quickly, we were advised to start Zuza on chemotherapy right away. With immediate treatment, the survival rate is very good: 80 to 90 percent of patients with ALL will attain complete remission.
Misdiagnosis and Lessons in Pediatric Cancer Therapy
The day after she was diagnosed, Zuza began inpatient chemotherapy with vincristine. We were informed that she would likely have neuropathy as a side effect and that it was a possibility that she would stop walking completely. Though we were overwhelmed and terrified, we were also happy to be told that, despite the toxicity of the treatment, it would make the cancer go away.
Several days into Zuza’s treatment, however, Ryan and I learned that her diagnosis was incorrect. In fact, Zuza had acute myeloid leukemia (AML), a less common but more dangerous form of leukemia with a five-year survival rate. The first of many pediatric cancer lessons that Ryan and I learned the hard way is that misdiagnoses are not uncommon.
As of this writing, nine years into the journey, Zuza has attained five-year remission once and relapsed three times. She has gone through chemotherapy many times and undergone two bone marrow transplants. We have done conventional therapy combined with various integrative therapies. We have seen her suffer terribly through side effects such as mucositis and dangerous complications such as graft-versus-host disease. We have also watched her sail through serious treatments with almost no side effects or complications whatsoever, jumping on the trampoline within hours of being discharged from the hospital.
While we don’t know whether Zuza will ultimately vanquish pediatric cancer, we do know what has prolonged or shortened her treatments, what has reduced her side effects, what has allowed her to return home to her own bed and family more quickly, and what has spared her unnecessary (and often toxic) side effect-management treatments.
We’ve observed, studied, and consulted with world experts in the treatment of childhood pediatric cancer as well as experts in the most effective comprehensive integrative therapies. What I can say is this: With cancer, there is no silver bullet. But there is a better way than what conventional oncology can offer.
Undoubtedly, the oncologist will know what chemotherapy to use, the surgeons will know what to cut out, the radiologists will know where to radiate, and the transplant doctors will know how to replace your child’s immune system. Their immense knowledge is valuable; this is what they were trained to do, and many of them do it expertly.
That said, most pediatric oncologists are not educated in nutrition, and the inpatient nutritionist is most likely developing the nutrition plans around what is on the formulary at the hospital. The pediatrician did not receive lessons in medical school about the importance of gut healing beyond Pepcid and proton pump inhibitors.
In short, I can say with some assurance that the biggest issue in pediatric cancer is the lack of comprehensive medical support, particularly in matters of nutrition, sleep, movement, stress reduction, healing of the gut after chemotherapy destroys the microbiome, ways to harness the power of epigenetic tests to inform individualized treatment regimens, and how to safely manage treatment side effects or reduce the risk of complications. This is not about who’s to blame, but rather finding a better way to navigate the broken system that your child is now a part of.
Integrating functional therapies doesn’t guarantee sustained remission, but I believe it is a better way. I have witnessed my share of miracles: pediatric patients who came to me when there was “nothing more that could be done,” and with integrative therapies achieved complete remission.
Using a comprehensive integrative approach does not guarantee a cure but it does involve less suffering. It leaves no rock unturned, and it can decrease the chance of relapse and late effects.
Somatic Versus Metabolic Cancer Theory
What exactly is cancer? Cancer is defined as the uncontrolled division of abnormal cells and the spread of those cells throughout the body. As these abnormal cells grow and spread, they affect the rest of the body’s organs.
This is a very basic description of what cancer is. However, there are different theories about why cancer cells grow out of control. Most current research and treatment protocols are based on the somatic theory of cancer, which proposes that cancer is caused by genetic mutation. These mutations accumulate until they result in a tumor that must be removed to prevent metastasis and death.
These mutations are considered random, so the only things a patient can do are surgery, radiation, or chemotherapy to remove the cancer. If your oncology team tells you that your child’s pediatric cancer is just bad luck, they are basing this statement on somatic theory.
The metabolic theory of cancer, on the other hand, looks at the cancer cell itself and its cellular environment. The origins of this theory trace back to Otto Warburg, PhD, MD, who won the Nobel Prize in 1931 for discovering that pediatric cancer cells consume more glucose and produce more lactate than normal cells.
Nearly a century later since the pioneering work of Otto Warburg, Thomas Seyfried, PhD, a pediatric cancer researcher and professor of biology at Boston College, further developed the theory that cancer is a metabolic disease whose etiology is not primarily in the nucleus but in the mitochondria—the energy factories of the cell. In this paradigm, oncogenes are the symptom of an underlying process, not the cause.
Whereas conventional oncology treats cancer like it’s a weed—doctors pull it (surgery) or treat it (chemotherapy or radiation) and hope it does not come back—the metabolic approach to cancer looks at the soil the cancer grew in.
Nuclear cell transfer studies back up the metabolic theory. In these studies, researchers remove the nucleus (where the genetic information is stored) from a cancer cell and insert it into a healthy cell. If cancer is encoded in DNA, it would follow that the healthy cell would become cancerous. But in fact, the result is typically a healthy cell. And vice versa: If researchers remove a healthy nucleus and insert it into a cancer cell, it would follow that the cancerous cell would become healthy. But, in fact, the result is typically a cancerous cell.
There are a lot of legitimate questions concerning the somatic theory, and many well-respected researchers and clinicians are increasingly considering cancer to be primarily a metabolic disease, not a genetic one. Indeed, many illnesses—including cancer, mental illness, Alzheimer’s disease, and diabetes—are now being investigated for their metabolic (often mitochondrial) origins, rather than their genetic origins.
At the very least, the metabolic approach to illness offers a new lens through which to understand serious disease. At its most profound, it completely overturns the prevailing medical model of what cancer is and how to treat it.
Despite this developing understanding of cancer, most treatments—and research funding—remain based on the somatic theory. Between 2003 and 2013, more than sixty-two new oncology drugs were approved, many targeting oncogenes. Of these, only forty-three percent offered a survival benefit of three months or longer. Thirty percent offered no survival benefit at all.
Through my extensive research, personal experience, clinical practice as an integrative oncology practitioner, and collaboration with experts in the field, I have arrived at the viewpoint that the etiology of cancer is a multifaceted matter, far from being definitively categorized, and is probably attributable to a synergistic interplay between somatic and metabolic theories.
Ultimately, while genetics can influence disease processes, they do not dictate these processes, as many have been led to believe. In fact, according to some estimates, genetics cause only five to ten percent of cancers. This means that diet, exercise, toxic exposure (including EMFs), anxiety and stress, food allergens, infections, and other lifestyle factors play a much larger role than is typically acknowledged by conventional oncology. This means you also have more power to help your child than you may think.
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Dagmara Beine holds a PhD in Integrative Medicine, has over a decade of experience as a certified physician’s assistant in Emergency Medicine, and is the founder, CEO, and clinical practitioner at her Wisconsin-based integrative health clinic, Zuza’s Way. Motivated by her daughter Zuza’s multiple fights against acute myeloid leukemia (AML) and a steadfast belief that there is a better way than what conventional oncology can offer, Beine changed her medical direction from emergency medicine to integrative oncology and developed a holistic, terrain-based approach to treating her patients.
Well Being Journal adapted the above excerpt from A Parent’s Guide to Childhood Cancer by Dagmara Beine, PhD, PA-C, © 2024, and reprinted with permission from Chelsea Green Publishing.
