June Special Feature
"My Nutrition Story" | By Lorna Day
I asked the oncologist, “Is there anything I can do with diet to help fight Sam’s cancer?”
His response, “There’s nothing you can do, and this will probably come back again.”
Those words shattered my hope and I decided the very next day that I don’t do nothing very well.
With a pit in my stomach, I began looking into nutrition to fight cancer and it turned out there was an abundance of information on the topic. I started with Anti-Cancer: A New Way of Life, by David Servin-Schreiber, a physician and neuroscientist, who discovered his own brain tumor. After treatment and some time in remission, he relapsed. He asked his oncologist if there was anything else he could do to keep his cancer from spreading, which was validating to read that a neuroscientist was asking the same questions I asked. I suddenly felt a lot less dumb.
His doctor had also told him, “There’s nothing else you can do. Just keep doing what you’re doing.”
Turns out, Dr. Servan-Schreiber doesn’t do nothing very well either. He began researching diet’s impact on cancer and changing his lifestyle by turning to whole, organic, nutrient rich, cancer fighting foods.
I’d found my hope in his example. Someone much smarter than me, who’s proficient in scientific medicine, had embraced a new diet and went on to live another 20 years.
I’d always wanted to be one of those super healthy people. I wanted to glow, and feel good, and be disciplined with my food. I wanted to be better than frozen pizza or chicken dinosaurs on a Friday night. I wanted to know what I was talking about when it came to nutrition. I devoured those books. While my brain filled up with knowledge, my spirit filled with hope. I found many more stories like how Kris Carr kept her rare sarcoma from growing with a clean, high nutrient vegan diet. I bought magazines from Whole Foods. I watched food documentaries. I bought a juicer. I bought more books and watched numerous TED talks. I switched to all organic produce and I bought a farm share. There was so much to read, so much to cook, and a world of hope to indulge in.
Instead of choosing any particular diet – like paleo or vegan – I focused on the nutrients. I fed our family more fresh vegetables, spices with medicinal value, grains and legumes I’d never heard of. Any food with anti-cancer properties made the grocery list. We ate less red or processed meat and chose milk alternatives instead of dairy.
“Ok you guys, here’s the deal….” I said to my family before serving sticky ginger tempeh with balsamic and garlic collard greens. “I’m going to make a lot of new stuff. But each time I make a new meal, you have absolute veto power.” They nodded. “If you don’t like it, I won’t make it again.”
“Yay!” said Natalie.
Sam nodded. “Cool.”
Encouraged, I went on. “I think I can make a lot of meals you’ll love and still be healthy.” My family sat at our kitchen table with glasses of green juice and plates full of unfamiliar vegetables, and they eagerly gave me their critiques like a group of restaurant critics. The collard greens were a thumbs up. The sticky ginger tempeh was never to be served again.
For several weeks the new version of family meals were more colorful, medicinally rich, disease fighting cornucopias, my personal contribution to Sam’s cancer treatment.
One morning when I was changing the bandage on Sam’s fleshy, raw, radiated foot, I noticed a few spots of lush new skin had appeared. It looked so interesting and lovely, like little droplets of new life vigorously multiplying in this hospitable environment. I really don’t know whether he would have healed the exact same way without being so well fueled by nutrition, but when I saw those clusters of dividing skin cells flourishing on his fragile foot, it reassured me: Good nutrition will help Sam heal. With all that Sam had going on in his body, and with my new available time after leaving my job, it was hard to find the downside of ultra-healthy eating.
Sam continued on an outpatient chemotherapy routine of five days on, then two weeks off - for almost a full year. I told his doctor (different from the one who said his cancer would come back) we were eating differently. Healthier. I didn’t ask for his opinion. I was surprised at his encouragement.
“A healthy diet can support his immune system and maybe help get rid of some of those microscopic cells floating around in his body.”
Several weeks into the diet change, I noticed a difference in Sam. He seemed to bounce back faster after chemo. His skin had a brightness to it in all the right colors. Most significantly, Sam never got even a hint of a sniffle throughout the cold and flu season. When a third of his classmates missed multiple days of school, Sam continued to attend whenever he wasn’t at the hospital for his treatment.
I noticed some changes in myself as well. I also didn’t get sick while the people in our community struggled through the usual seasonal illnesses. Before Sam had cancer, I suffered from sinus infections every May and a chest cold every October. I could practically put those on the calendar. A specialist determined that I needed surgery to fix a deviated septum, which I opted to postpone until Sam got better. After embracing a high-nutrient, whole foods diet, I quit getting sick. It was a fascinating experiment and each little improvement in our health motivated me even more.
Pretty soon, food had our attention and the kids managed to add humor to the way in which our family was oddly growing clean and green.
“Wow mom, kale chips and olives are just what every kid wants for an after-school snack.”
“Mom, can you not put quite so much nutritional yeast on my popcorn this time?”
At the dinner table Natalie and Sam joked and giggled and humored me and my new obsession. But Sam drew the line when I suggested he use beet juice in the shaved ice he hoped to sell to the neighbor kids on a warm spring Sunday afternoon.
I wondered how all of these nutrient dense foods might be nourishing Sam’s organs. They’d surely taken a beating from the chemotherapy. If what I observed on the outside was equally restorative on the inside, perhaps Sam’s body would become more resilient to disease, including cancer.
Once I became a health nut, I started to feel that the world was working against me. Birthday parties, school parties, sleepovers, summer camp, even the childhood cancer non-profits, offered processed snacks with other non-food ingredients designed to lure more children and sell more products.
In the hospital, friendly volunteers would roll their carts full of goldfish crackers, juice boxes and fruit snacks through the infusion center for kids to take something appealing. When I heard them coming, I would close the curtain around Sam’s bed to shut out the friendly “Hello! Would you like a snack?” I had tried asking if they had anything healthy - but mushy red apples or snack bags of mini carrots were all they had to offer. I got to thinking: medicine and health are quite different things. Sometimes, they are even in conflict with each other. The hospital is where we could get the medicine Sam needed to kill the disease or to ease the side effects, but home is where he would get the nutrition he needed to be restored back to good health.
Over time, as we watched Sam’s disease progress, my strategy shifted. I was confident the nutrition was having a positive effect on his body and general health, but it didn’t stop the cancer from growing. With each frightening scan, I re-evaluated our approach. I hired a functional nutritionist and had Sam tested for food sensitivities. We saw a Chinese medicine doctor who sent us home with a powdered tea that tasted like dirt. Sam didn’t complain. I saw a Naturopath who taught me to read his bloodwork beyond what the oncology team considered relevant. His vitamin D levels were low, so I boosted them. Sam was sensitive to chicken eggs, so we switched to duck. His liver numbers crept upwards with more toxic medications, so I added milk thistle, and sprinkled our food with parsley and cilantro
Sam got used to his new diet, and yet the tumors kept growing. Up until that moment I had considered the Ketogenic Diet too extreme. At the same time, I’d discovered there were several institutions working on targeted drugs for Ewing sarcoma. Clinical trials would begin soon. Sam might be a candidate if he could stay alive long enough to access them.
That’s when the ketogenic diet started to look more appealing.
I have a friend who is a Ph.D. researcher in Nutrition with expertise on pediatric metabolic disorders and fatty-acid oxidation. I still don’t fully understand what this means, but my friend is one of the smartest people I know. I trust her. She told me she had read enough about the ketogenic to become curious about its impact on cancer. She grasped the scientific rationale but cautioned me, “We still don’t have enough research to confirm how effective it could be, but I’ve read a few pretty incredible case studies.”
The ketogenic diet is intended to switch a person’s fuel supply from glucose to fats. Our cells use carbohydrates, which break down to glucose for fuel. Cancer cells do the same but to a frenzied extreme. It’s why we hear people say that sugar feeds cancer. Normal cells in our body, including our brain cells, can also use ketones, derived from fat. Many cancer cells can’t (including Sam’s cancer), so the shift from glucose to ketones leaves cancer cells starving while the rest of the body thrives.
A ketogenic diet is extremely low in sugar and carbohydrates. It’s high in good fat like avocado, coconut oil, macadamia nuts and fattier meats. It requires a moderate protein intake, while it’s very low in carbohydrates. Leafy green vegetables are important, but root vegetables contain higher amounts of glucose. I’ve never heard a doctor speak about the ketogenic diet with any particular expertise, but I’ve heard them express their disapproval. I’ve seen them roll their eyes, speak sarcastically about it with peers, and discourage patients by telling them it’s very difficult to maintain. I would have preferred a scientific, here’s what we know and here’s what we don’t know, approach to the conversation but it was hard to find.
My Ph.D. friend and I decided on a modified ketogenic diet, which could still have the metabolic effect without the risks posed by the more cautious medical team members. I bought the books, and the blood-glucose monitor and the keto strips to test Sam for ketone levels. I promised him meals with bacon and avocado and continued providing all of the vegetables and spices he’d learned to appreciate. I monitored his bloodwork and paid attention to his energy.
At the same time, we started the diet, Sam also started a new drug - Pazopanib. We expected the side effects to be hard to tolerate and were told it probably wouldn’t work. After two months on both the drug and the diet, Sam felt fantastic and his scan results stated for the first time in three years, “Decreased metastatic disease.”
Sam’s doctor suggested, “I don’t really understand what you are doing, but keep doing it. It’s working.”
After six months on the diet and the drug, Sam’s tumors began to grow again.
In the end, we found no diet or drug that could save him.
It’s difficult to say whether these various diets had any impact on Sam’s disease. I could look at it as a waste of time and energy - missing out on all of the sugar and all that. But I choose to see it as an awakening. Nutrition made a difference and it changed our whole family. I learned that kids can adapt, and we have influence on the wellness culture around us, even for children. I learned that when a doctor says, there’s no evidence to support X, they usually mean that the research simply hasn’t been done.
I tell this story because I believe kids with cancer will live better during and after cancer if they feed their bodies well. This is the reason why the Sam Day Foundation promotes wellness for kids with cancer. It can be so difficult to go against a culture that says kids should eat whatever they want, but personally, I don’t regret a single day of being hopeful and adaptable, and feeding my family well.
If you’re interested in learning more about the role of nutrition in helping children living with cancer, here are a few links to articles published by credible sources. Because here at Sam Day Foundation, our mission is to help kids with cancer live well.
Role of Nutrition in Pediatric Patients with Cancer
Nutrition for Children with Cancer
CAC2 Member Blog–Fueling the Lifelong Fight Against Childhood Cancer: Nutrition for Patients and Survivors
