When Daniela Djordjic brought her son in to get his shots that September day in 2000, she was understandably nervous. Just two weeks earlier, 2-month-old Jovan had been rushed to the emergency room after he turned blue during a crying fit. Doctors intubated him until he stabilized, and sent him home a few days later with a diagnosis of whooping cough.

Except Djordjic and her husband, Voya, had never noticed a cough. They kept vigil over Jovan, jumping to soothe any sign of discomfort before it could turn to tears.

At the pediatrician appointment, the crying and choking began again. Lynn Porter, MD, called code blue, and what seemed like “the whole hospital ran in,” recalled Daniela, now 49, at her home in Peabody, MA. “He almost died endless times. It was very stressful, and I was lost.”

ICU doctors at Tufts Medical Center in Boston struggled to determine the problem. Jovan, who had seemed small and quiet but normal, could no longer breathe on his own. He needed almost constant sedation with Fentanyl to keep him from ripping the intubation tubes from his mouth and nose. Each time the doctors removed him from the ventilator, Jovan could only make it a day or night on his own. So much blood was pulled for testing that he needed transfusions, but a diagnosis remained elusive.

Three months later, the 28-year-old parents, both refugees from the Bosnian War, were given two options: A tracheostomy tube could be inserted in the baby’s neck so they could stop sedating him; or they could remove him from the ventilator and do nothing. “It’s your decision,” the doctor said.

“Do we want to pull the plug?” said Daniela. “I try to block that memory. How can you say, ‘I don’t want my child to live’? We said, ‘Of course we want him to live,’ with the hope that things will change. We still didn’t even know what the condition was.”

Muscle samples taken from Jovan’s hand during the trach surgery revealed missing cells in his myelin, the protective sheath around nerves that allows the brain to communicate to muscles. Doctors predicted Jovan would remain ventilator dependent and start losing his ability to move. The Djordjics sought a second opinion. That doctor ran more tests, verified that Jovan would become paralyzed from the neck down due to polyneuropathy, the malfunction of many peripheral nerves. He ran a vocal cord test that, because one of the cords was paralyzed, meant there was a 50 to 70 percent chance a future child would have the same genetic mutation. He estimated Jovan would live a year.

The prognosis confused Daniela. Why would Jovan die so soon if he was already on life support? The doctor explained that many infants with complex medical conditions develop pneumonia and respiratory problems they can’t survive, even on a ventilator.

Trach surgery was in early December. On New Year’s Day, 2001, Jovan was sent to Franciscan Children’s Hospital in Brighton, MA, a long-term pediatric rehabilitation facility, where his parents began learning how to care for him. A few months later, surgeons inserted a gastrostomy tube into the 9-month-old’s stomach so he could be fed nutritional formula that way. In October 2001, more than a year after his first hospitalization, Jovan finally came home.

Home Is Where the Heart Is

By then, the Djordjics were living in a tiny two-bedroom apartment in Somerville, MA. “Their apartment looked like an ICU,” said Kathleen “Kathy” Ryan, a former case manager with Home First, a program funded by the Massachusetts Department of Developmental Services to help families whose children qualified for living in pediatric nursing homes.

“At the time, there were only three pediatric nursing homes in the state,” Ryan said. “The department had finally gotten the message that people should not grow up in nursing homes. Voya and Daniela were working really hard at keeping Jovan alive and out of the hospital.”

Ryan understood the challenges of navigating medical services because of her own experience caring for a profoundly disabled son. She became a trusted resource for the overwhelmed couple, helping them obtain items they needed for Jovan's care, such as a wheelchair van. The couple had no idea they could be reimbursed for certain expenses, which added up quickly.

As predicted, Jovan began losing his ability to move. In a slow progression, he lost movement in his legs, then his fingers, then his arms, becoming a quadriplegic by age 8. In terms of what Jovan has lost, nothing has changed since then. However, what he’s gained is something of a miracle, thanks to his medical team, modern technology, the devotion of his family and caregivers, and maybe, just maybe, his mother’s homemade soup.

Getting a Diagnosis

Despite the prediction that Jovan would likely die before age 2, he turned 21 in 2021, the same year he finally received a more precise diagnosis than the earlier one of polyneuropathy. The medical mystery was solved during an appointment with a neurologist new to the family. He asked many questions about Jovan’s early life and family history. When he asked Daniela and Voya to remove their shoes, he knew he had the answer. Voya’s high arches—which run in his family—are a classic symptom of Charcot-Marie-Tooth disease, CMT, for short.

Caused by genetic mutation, Charcot-Marie-Tooth, pronounced (shar-KO mä-ré tooth), is a progressive nerve disease named for the three physicians who first described it in 1886. CMT damages the peripheral nerves that extend to the feet and hands, and interferes with the brain’s ability to communicate with muscles. Many people with CMT experience muscle pain, hand tremors, cold hands and feet, chronic fatigue, and develop trouble walking. Most have a normal lifespan, only very rarely do they have breathing problems. Jovan seems to be among the most extreme cases.

At an appointment in 2021, one of Jovan’s doctors asked Daniela, “How is he still alive?” After listening to her daily routine, which includes feeding him homemade food through his G-tube, he remarked, “I think it’s the nutritious food you’re giving him every day,” recalled Aleksandra “Aleks” Samardzic, Daniela’s older sister.

When members of his CAPE (Critical Care, Anesthesia, Perioperative, Extension and Home Ventilation Program) team from Boston Children’s Hospital attend conferences and discuss their “against all odds” cases with peers, they always talk about Jovan.

“He is the only one who eats food,” Daniela said. “He, knock on wood, has never had any bed sores. His skin is so good. And he’s been healthy.”

Beyond Canned Nutrition

When Jovan got home in 2001, Daniela fed him Peptamen Junior, the same canned nutrition the hospitals used. These formulas typically contain whey protein, fiber, medium chain triglycerides (MCT), and are fortified with vitamins and minerals.

“He did not tolerate the canned liquid food very well,” Samardzic said. “He had constant diarrhea. First, she tried to adjust the feeding times and quantities, but that didn’t help.” One day in 2002, when Jovan was 2, Aleksandra and Daniela’s mother, Javorka Vujnovic, who was living in the United States at the time, wondered aloud, “Why don’t we just give him some chicken soup?”

“I looked at her and said, ‘That’s not a bad idea,’” Daniela said. The memory still makes the sisters laugh.

This strategy of figuring things out as they went along, even without a true diagnosis, resonates with Ryan. “In the beginning, you really, really, really want to know. Then you realize your child is going to tell you who they are, and you’re just going to have to respond to their needs as they go along in life, and I think that’s what they’ve figured out. I mean, this family is so darn clever.”

Jovan’s doctor was not opposed to his eating food, only concerned it would not be nutritionally sufficient. Daniela began feeding Jovan some homemade food and a can of Peptamen Junior per day. Not only did his bowel movements stabilize, but his skin grew healthier, and he looked happier.

She began experimenting more and more with the food until she was able to wean Jovan from the Peptamen Junior.

“Mothers feeding children is extremely important,” Ryan said. “That’s why people are so resistant to G-tubes when they’re told their children have to get them. We’re wired to feed our children. Daniela’s a good cook, and she wants him to have good, healthy food. He can’t taste a thing, but it doesn’t matter to her.”

Over the years, Daniela perfected a food plan that met Jovan’s nutritional needs and caused no digestive discomfort. Many ventilator-dependent children struggle with digestion. Because of this, when Jovan’s G-tube was installed, the surgeon cut a muscle on the side of his stomach to move food into his small intestine faster. Unfortunately, Jovan developed a dumping syndrome, also called rapid gastric emptying, which means the food moves too quickly into the small intestine. The accelerated digestion can cause nausea, abdominal cramping, and a rapid rise of blood sugar levels that causes sweating and discomfort. To prevent these issues, Jovan is fed just a bit of food through his G-tube at regular intervals throughout the day.

The Daily Menu

Breakfast starts at 9 a.m. Earth’s Best Organic Whole Grain Oatmeal Cereal, unsweetened almond milk, and fruit (blueberries, apple, or banana) are blended to the point of near liquefaction in a heavy-duty Oster blender. The meal is put in a syringe and a small amount is placed into Jovan’s G-tube every 30 minutes.

Jovan’s diet is mostly vegan because he has issues digesting protein. For lunch, Daniela or one of Jovan’s caregivers consults the notebook kept in a kitchen drawer to see which vegetables he’s been fed recently. They chop up and simmer several new varieties, using organic produce whenever possible. Once soft, the vegetables are allowed to cool, and then put into the blender along with two tablespoons of Californian extra-virgin olive oil, some fresh garlic, and a bit of salt. One slice of whole-wheat bread (baked daily by Daniela) is torn into chunks and added to the blender along with two hard-boiled eggs and, sometimes, cooked rice. Once the blender is 75 percent full, water is added to thin the mixture, and then blended into Jovan’s “soup of the day.” About a half-cup of soup goes into the G-tube via syringe starting at 3 p.m., a process that’s repeated every half-hour until 9 p.m. Overnight, he receives Pedialyte via a feeding pump to keep him hydrated.

Even though there was concern early on that real food wouldn’t be nutritionally sufficient, it is proving to meet Jovan’s needs quite well. His blood is tested regularly, and Daniela tweaks his diet as needed. “Last time when they were doing his bloodwork when we were in the hospital, his vitamin K was a little low,” she said. “We added a few leaves of baby spinach to his diet. We make these little adjustments, but everything else seems to be fine.”

"In the more than 10 years that I've been seeing him at the house, I've marveled at the family's ability to support Jovan in his physical needs, especially with natural, well-balanced table foods," said David Casavant, MD, senior associate in Critical Care Medicine, Department of Anesthesiology, Critical Care, and Pain Management at Boston's Children Hospital and assistant professor of anesthesia at Harvard Medical School. "He's the example I think of when I explain to other patients that formula is good, but often some wholesome food can be better than something made in a factory."

Daniela doesn’t think of the cooking she does every day as anything special. When she came to this country in 1998, she was surprised at how much packaged food people ate, and confused they didn’t know how to make something as simple as yogurt. “We grew up on a mini-farm” that provided the family with eggs, milk, and meat, said Samardzic. “I don’t think our mother or grandmother ever bought any canned ingredients or ready-to-eat meals. For Daniela, switching to homemade food was just a matter of time.”

The family keeps a garden, and Daniela eats a vegan diet, always mindful of her health because so much of her son’s daily care rests upon her shoulders. She is a one-person command central who schedules the around-the-clock skilled nursing care (always challenging, and even more so during COVID), provides physical care for her son, deals with all the medical bureaucracy, and makes sure the home is stocked with medical supplies.

“She doesn’t crush,” said Samardzic. “Sometimes she’s like, ‘I don’t know if I can take this anymore physically.’ But mentally, never, never. She’s extremely, extremely strong.”

After so many years of caring for her son, Daniela knows when Jovan is in pain or something is off. “For me, after 21 years, I think it’s simple,” she said. “What you need is people. You need support in the house, of course. But you also need to know who to call and how to navigate the system. I started doing that a long time ago with the 12 doctors he has. There’s always one person I know the direct line to.”

The family prefers dealing with routine medical issues as they arise at home, resorting to hospital visits only for emergencies. Sometimes trips to the hospital can exacerbate challenges—or introduce new ones—especially if the visit occurs on a weekend when Jovan’s regular doctors are not there.

“He is alive because of medicine, obviously, and all the medical equipment,” said Samardzic. “But we are also spiritual beings, and we have energy, and we know ourselves the best. Sometimes we have to listen to our intuition, and that’s what she’s doing when it comes to him, too.”

"I think the truly magic ingredient, and the thing that makes it uniquely successful is love, and that is what abounds in this family," Dr. Casavant said.

A Good Life

In 2022, Jovan will graduate from the Kevin O'Grady School, which educates students with significant disabilities. Stephanie Couillard, M.Ed., an assistant program director there, said he is the only homeschool student she knew of who'd graduated from the 12th grade, the highest level offered.

Jovan exudes happiness around those he loves and has a good sense of humor. He gets a kick out of watching the movie "Bridge to Terabithia" with his nurses and PCAs, for example, because he knows the scene of Jess and Jack in the forest always makes them cry.

Voya, who, with Daniela, owns Sigma Pros, a general contractor and millwork supplier based in Wakefield, MA, installed a floor-to-ceiling pipe by Jovan's bed that has several articulating arms that can swivel in, left and right, and up and down, depending on what Jovan wants to do, which is typically a lot. One shelf holds his Tobii, an eye-tracking computer that speaks for him. Out of necessity and personality, Jovan is a direct communicator and often asks Daniela to connect him with people, including his grandparents in Bosnia, via video calls.

Another shelf holds a TV screen that he uses to watch movies, golf, and college football. He enjoys following the news, especially 60 Minutes, and his current crush, WCVB Channel 5 meteorologist Cindy Fitzgibbon, sent him a Happy Birthday video for his 21st birthday.

Bath time, often reduced to sponge baths for people with severe disabilities, is a joy for Jovan. Years ago, Voya designed a special tub for him with a reclining insert that can support his body.

At bath time, which occurs several times a week, the lightweight, fiberglass tub gets placed on a waist-high folding table similar to a massage table. A long extension hose attached to the bathroom showerhead fills the tub, and then a lift device moves Jovan from his bed into the tub via netting.

During a recent bath, a nurse scrubbed Jovan’s feet while Daniela washed his hair using a shower attachment. His head was wrapped in a towel warmed in the microwave while Safa Rizvancevic, a personal care attendant from Bosnia who has been with the family so long she is considered family, ran to the basement for more warm towels straight from the dryer. The machine lifted him from the tub, and he was rinsed, dried, and moved back to bed, where his skin was moisturized and he was given a foot massage. The final touch was Daniela, long hair pulled back into a no-nonsense ponytail, touching her nose to his, joy spreading over both of their faces.

His family remains determined that Jovan enjoy as full a life as possible. Each summer, they travel to a special place, often Long Island, via a caravan of vehicles that transports family members, nurses, PCAs, and all the equipment Jovan needs, including his tub, which is used as a bed for the ride. “Everything moves,” said Samardzic. “It is a mission.”

Once at the hotel, they remove all the furniture from one room so it can be outfitted into a replica of Jovan’s room at home. With such complex medical needs, it’s important that the care routine run like clockwork.

The hotel is located on a 2-mile-long boardwalk that parallels the ocean shoreline. Syringes filled with food and water are stashed in Jovan's small backpack so he can stay on his feeding schedule. The length of the boardwalk allows everyone to walk together for an hour and 40 minutes before they need to return indoors to attend to Jovan’s medical needs. Look at any photo of Jovan at the ocean and you will see his face lit with happiness.

“I meet a lot of families who have children with serious problems,” reflected Kathy Ryan. “There are moments of worry and depression and loneliness and fear. The thing about this family that I’ve always admired is that they always were up for celebrating something. They are very loving people, and they were that way to begin with. I don’t think that was new because of Jovan. They understand that there are things in life that should be celebrated and marked, and they do that, and I love that about them.”

Future Strategy

Pre-COVID, the Djordjics bought a neglected, but beautiful property in Topsfield, MA, not far from their home. They are renovating it with the hope it someday serves as a place for children with disabilities to spend time together, having fun and learning. Daniela hopes to teach younger families what she's learned, not just about physical care and feedings, but also about how to navigate medical systems, minimize hospital visits, and advocate for a loved one if a hospital stay becomes necessary. She wants parents to know they can trust themselves.

"Listen to your instincts. That, I learn over and over again. Most of the time, we know, but we don't listen to our gut because someone went to school," she said.

Call it mother's intuition, call it old-fashioned commonsense, call it what you like. But for Jovan "Jovi" Djordjic, the most important prescription, the one that has kept him not just alive but smiling, has always, always been love.

When you visit The Charlie Foundation for Ketogenic Therapies website, you see a quote at the top of the homepage: “In 1993 the ketogenic diet cured Charlie Abrahams’ epilepsy.”

“Cured” is a word you don’t often see. To learn more, I reached out to Charlie’s dad, Jim Abrahams (who directed the Hollywood movie Airplane! in 1980). Abrahams is the co-founder of The Charlie Foundation, established in 1994 to provide information about ketogenic diet therapies for people with epilepsy and other disorders.

“The word cure is controversial,” Abrahams said. “The Epilepsy Foundation raises money by saying there are no cures. But I know hundreds of people who have been cured. Charlie turned 30 in March 2022, and he has had no seizures in 25 years.”

This story starts in 1993, when 11-month-old Charlie developed severe epilepsy, sometimes suffering as many as 100 seizures a day, even while on several medications. His medication-resistant condition, known as refractory epilepsy, occurs in about 30 percent of people with epilepsy, according to Johns Hopkins Medicine. Even brain surgery provided no relief. And the drugs his son had to take had massive side effects, effectively turning him into a nonfunctioning zombie, Abrahams said.

Desperate to help Charlie, Abrahams began reading medical studies at the library. He came across a study published in late 1992 in Epilepsia, the leading authoritative source for clinical research for all aspects of epilepsy and seizures. The study showed that in 58 consecutive cases, putting kids as sick as Charlie on the ketogenic diet improved seizure control in 67 percent of them. When Abrahams came across that study, only about a handful of children around the world were still being treated with a keto diet, despite the fact that it was a well-established approach to controlling epilepsy.

As the 1992 study explained, “the ketogenic diet was developed in the 1920s as a treatment for intractable childhood seizures when few antiepileptic drugs (AEDs) were available.” However, as AEDs were developed by pharmaceutical companies, doctors began abandoning the keto diet in favor of using drugs.

“There are still children whose seizures are refractory even to modern therapy, but use of the ketogenic diet appears to be waning,” the 1992 study warned. “At Johns Hopkins, we continue to believe that the diet is very effective and well accepted by patients and families.”

“The study was hot off the presses,” said Abrahams. “Still, no doctors had mentioned it to me. I called Dr. John Freeman at Johns Hopkins,” who had worked on the study.

Dr. Freeman immediately began working with the family. In just one month on the original ketogenic diet designed in 1923 by Dr. Russell Wilder at the Mayo Clinic, Charlie became seizure- and drug-free. There are five variations of the keto diet, and “classic keto,” the original, is the strictest, with 90 percent of calories coming from fat, 6 percent from protein, and 4 percent from carbs.

“Most kids like Charlie can get off the keto diet after 18 months to two years. After two years, they are drug- and seizure-free,” said Abrahams. “We tried after two years to wean him off the diet, but the seizures returned. For his brain to heal itself took longer than some other kids.”

The family was able to get Charlie off the keto diet after a total of five years. The seizures never returned, and Charlie now eats whatever he wants.

Unnecessary Suffering

While Abrahams was very grateful his family got Charlie back, he began to realize that much of the suffering his son went through had been unnecessary. He would wake up in the middle of the night, thinking "90 percent of these seizures didn't have to occur. This was not a pie-in-the-sky diet,” he said. “There were 70 years of medical history about the diet and how well it worked for kids like Charlie. Different hospitals with the same patient populations published about the efficacy and had the same results. For roughly one-third of the children who experienced multiple daily seizures, the seizures went away with the ketogenic diet.”

Abrahams expressed his frustration in a 1994 Dateline special. "You pour the drugs down your child's throat despite the fact there's something inside you that says, 'Wait a minute, this can't be right.'"

Dr. Donald Shields, a child neurologist, was one of Charlie's doctors. He also appeared on the Dateline episode to talk about the drug protocols he had tried with Charlie. Most of the mainstream drugs had been exhausted, and Dr. Shields was considering using more experimental ones. Even though he had some knowledge of the work Johns Hopkins was doing with the keto diet, he admitted on the program that he had tried to dissuade the family from pursuing the dietary approach.

"There's no big drug company behind the ketogenic diet," Dr. Shields said. He said he "hated to admit it" but agreed with the reporter that one of the reasons the ketogenic diet was not more popular with doctors was because there was not a big drug company behind it, selling it to the doctors.

Abrahams soon channeled his anger into action, first co-founding The Charlie Foundation with his wife, Nancy, in 1994. In 1997, he directed and produced “First Do No Harm,” a made-for-television movie starring Meryl Streep that somewhat mirrors his family’s experience with the ketogenic diet, highlighting the side effects anticonvulsive drugs can have on children with epilepsy.

“When we started the foundation, I said, ‘I’ll be doing this maybe a year. It’s so obvious. Do you want to drug your kid, cut his brain, or change his diet?’ I was wrong,” Abrahams said.

Thirty years ago, when Abrahams questioned doctors about how much of their formal medical training was devoted to studying nutrition and diet therapies, he would usually get an answer of “zero” or worse, a lecture.

Back then, the doctors would argue that they didn’t have the science so they couldn’t recommend the diet, he said. But now the mechanisms of how the ketogenic diet works are understood and its effectiveness against certain diseases, like epilepsy, are known in the medical field.

Still, Abrahams gets emails every year from upset families saying their doctors never mentioned the ketogenic diet. “It’s a broken record. It’s more maddening today than it was 20 to 30 years ago. I still struggle with the whole notion of forgiveness.”

If a person is working with a trained dietitian and there are no contraindications, like if the body can’t digest fat, there’s no excuse not to recommend the keto diet, he said. He used to believe that if a neurologist ended up having a child with epilepsy, that would help advance the use of the diet. Over the years, he did meet two neurologists in that position, neither of whom put their children on the keto diet. While this may seem baffling, it makes a certain type of sense to Abrahams.

“Imagine being a 60-year-old neurologist. God knows how many patients you never recommended the diet to even with the abundance of efficacy. How do you look in the mirror and think, ‘How many people’s lives did I screw up?’ All of the other influences add up. Medical schools—who designs the curricula? Is that influenced by the drug companies? I don’t know. Let food be they medicine has been around 2,500 years. There are powerful forces that influence our medical system that don't have much to do with good health."

Lynn Tryba: How did you come to learn about the keto diet for cancer?

Miriam Kalamian: In December, 2004, my husband, Peter, and I found out our 4-year-old son, Raffi, had a brain tumor the size of an orange. They said it was inoperable, told us what we had to do, and warned us not to go online. I went online.

Tryba: What did you see?

Kalamian: It was a horrible shock—it was all bad, nothing positive, nothing to give us hope. We went along with the standard of care, which was chemotherapy every week for 14 months. Three months later at his post-treatment MRI, they said, “It’s lit up like a Christmas tree. We have to radiate.” He wasn’t even 6. They don’t usually do radiation to kids that young because it impairs cognition. We were on the edge of agreeing to this, but then they said they couldn't do it because the tumor was diffuse and infiltrated, the same reason they couldn't operate. We did the unthinkable and had surgeries done by the only doctor who would agree to it. He did it in a two-part surgery. The first part was fairly successful in that it stopped the tumor growth, but it impaired a lot of my son’s executive functioning. The second surgery was not successful. It grew back in they hypothalamus within a few weeks and started invading new areas as well.

Tryba: What did you do next?

Kalamian: We enrolled Raffi in a clinical trial, but it didn't take long to learn that it wasn't working. At this point, they were out of treatment options and were going to move Raffi to palliative care. I was looking online at one of the drugs in the palliative protocol. The drug had a lot of awful side effects so I wanted to print this out to review it with his doctor. I was staying with my mom at the time because my son’s trial was in New York. Her printer wouldn’t work, so I bookmarked the page. A few days later, when I was at a spot with a working printer, I went back to the bookmark. Except it wasn’t the article about the chemo drug anymore. It was an article by Dr. Tom Seyfried involving a diet he had used in a mouse model of glioma, a type of brain tumor. I had brought up mouse model studies to my son’s medical team in the past and they would say it was going to be years before the research can be done in people, if they were tried at all, and years more before a treatment was approved. But Dr. Seyfried’s paper also included a reference to a case study with two children with advanced brain tumors who had been put on a ketogenic diet for eight weeks. The tumors had responded in both cases. I emailed Dr. Seyfried’s lab. A couple of hours later, he emailed me back, sending me a paper by Linda Nebeling PhD, MPH, RD, FAND. He also told me about The Charlie Foundation for Ketogenic Therapies. Although he's not a medical doctor, he was passionate and excited to help. I’m looking at this information and thinking, “Well, why wouldn’t we want to try it?” One of the kids was still alive more than a decade after the treatment. And we could still do the chemo alongside of the diet if that’s what we decided to do.

Tryba: You stumbled across the ketogenic diet by serendipity.

Kalamian: The other serendipitous thing was that the team of epileptologists at Johns Hopkins hospital, led by John Freeman, MD, had just put out their fourth edition of The Ketogenic Diet: A Treatment for Children and Others with Epilepsy. This was the first time they offered any speculation on the use of it in brain tumors. It was just one paragraph buried in a short section on speculation near the end of the book, but it was the first glimmer of hope we'd had in ages. Keto diets had been used as a treatment for epilepsy since the 1920s. And here it was, a protocol for kids that we could use with Raffi.

Tryba: Did you put Raffi on a ketogenic diet after that?

Kalamian: Yes, and I was terrified to take this on without medical support from his brain tumor team, but we had no choice. When you’re dealing with kids, doctors are even more reluctant to stray from the norms than they are with adults. We had local support from his pediatrician, general oversight from his local oncologist, and two moms in a support group for kids with epilepsy who were following the modified Atkins diet. That was enough of a start. I fasted Raffi like they were doing at the time for kids with epilepsy, but this was trickier to do outside of a hospital setting. Kids shift quickly into ketosis and by by night time, that poor kid was ketotic. That’s how quick kids can make that switch to ketosis. The book had warned this could happen and we followed the protocol to reverse it, and just kept going. We had started it right after an MRI showing progression had formally kicked him out of the trial. Three months later, his next MRI showed the tumor had shrunk. The only other treatment he'd received was a reduced dose of a chemo drug that Raffi had already failed. We had to go along with that because the local oncologist had to stay within the good graces of his profession, but he was clear that this is not what had caused the shrinkage. After Raffi’s next good MRI, the oncologist started skipping treatments. He gave us a three-week holiday and finally said, “We’re just damaging him with this stuff. Let’s not do this anymore to him.”

Tryba: How were you feeling at that point?

Kalamian: It’s what put me on the path to get my degree in nutrition. I was hoping for anything, just a few more months with Raffi, anything. When we were told the tumor had shrunk, we sent the MRI scan to two other centers, the one that had conducted the clinical trial and another center where he had been treated. Both concurred there had been tumor shrinkage, between 10 to 15 percent. But nobody was going to say it had anything to do with the diet. I literally begged the consultant nutritionist for The Charlie Foundation to have a call with me. She was resistant due to the liability. I said, “Listen, I’ll sign any waiver you want. I know I’m doing this wrong, and I’m afraid I'm going to harm him.” That’s what got her to work with me. She has a heart, and the thought of damaging a kid . . . She spent an hour and a half on the phone with me, and cleared up the things I was doing wrong. The good MRI was June. My talk with the nutritionist was July. By August, I was enrolled in a program leading to a Master’s degree in human nutrition.

Tryba: How was Raffi by then?

Kalamian: My son was doing great! He was getting stronger and healthier and back to school and enjoying life. Peter and I were enjoying this extra time with him. I got my degree from Eastern Michigan University in 2010. To become a Certified Nutrition Specialist took another couple of years. My son died in 2013, a year after I got my certification. If we could have gotten the tumor to shrink before his surgery, if we had known then what we do now, we could have avoided a lot of the damage. One of the main benefits in initiating a ketogenic diet early on is you can get a better tumor resection. But most people are not finding out about this until after surgery because they’re rushed into surgery being told it’s an emergency. In many cases, it’s not.

Tryba: Does the keto diet help with all cancers?

Kalamian:. There’s a standard of care therapy for brain cancer, and it has a standard outcome, which is piss-poor. When you combine the diet with it, you can get another year. I have clients who are four, six, eight years out from diagnosis. I work with one that’s 10 years out. The ketogenic diet’s positive effects are clear on brain cancer, not so clear on other cancers. I still think reducing inflammation and lowering glucose and insulin impacts the tumor or just the cancer, in general, and makes the other therapies you’re doing more impactful. If you can compromise the metabolic needs of the cancer cells while nourishing the rest of the body with the right kinds of nutrition, with ketones to replace the sugar you’ve pulled out, then you’re going to get a better outcome, even if it's just an improved quality of life. That alone is huge!

Tryba: Why don’t doctors start using food in conjunction with standard of care medicine?

Kalamian: Because they don’t understand the power of food and nutrition. They just see food as something that provides enough calories so you don’t lose weight. But the type of fuel you put in the body makes a difference in what the cancer can utilize and what compromises it. When it’s compromised and you hit it with therapy, it’s going to be more impactful.

Tryba: How do we change the perception that nutrition doesn’t matter?

Kalamian: Change is happening, but most oncologists are so stuck in the nutrition paradigm. You could hand them all the evidence on diet, but their bias prevents them from believing it. Then you have the ones who say, “It looks like maybe nutrition does have an influence,” but they often end up suggesting a plant-based diet as though there was evidence for it, which there's not. There's this fear that their patients will lose weight, which is often the case with keto. Thankfully, recent research has shown that the weight loss with keto is more likely be from fat, not muscle. There also seems to be some benefit from fasting around chemotherapy. I have a modified fasting protocol that includes broth that people drink for a little bit of protein and gut protection. It provides calories but keeps you in a fasting mimicking state during chemo treatments, which lessens GI side effects and makes infusions more impactful. The fasting state sensitizes cancer cells, making them easier to kill.

Tryba: What clinical evidence shows following a ketogenic diet offers therapeutic potential for people with cancer?

Kalamian: There’s been some beautiful work with women with breast cancer showing that the body composition is better in women who are able to follow even a modified low-carb ketogenic diet and that their biomarkers are better than women on a control diet. You may have seen an explosion of information about a new preclinical pancreatic cancer study that came out showing people on the ketogenic diet were doing better than those who were not. They’re organizing an official clinical trial. A few years ago, Memorial Sloan Kettering, a very reputable center, started a trial for ketogenic diet for newly diagnosed endometrial cancer. Almost 100 percent of women who develop endometrial cancer are obese and insulin resistant. There are some high-level people involved in this research, like Lewis Cantley, he’s the one who discovered a pathway that promotes cancer called P13K. That pathway is very active in a lot of cancers, like ovarian, breast, and prostate cancers. Cantley spent the majority of his career working with pharmaceutical companies to develop P13K inhibitors for that pathway. Sorry to get technical. These inhibitors block phosphorylation of the insulin receptor on cancer cells.When you do that, then glucose and the insulin stay in circulation instead of going to feed the cancer cell. But this can turn people into diabetics, which results in poor cancer outcomes.

Tryba: Wow.

Kalamian: The next level of that was, “Now they're diabetics, and this drug is failing, so what should we do?” They knew from earlier research that women on Metformin because of high blood glucose had a better outcome in cancer. Then, it became, “Well, what if we combined it with a ketogenic diet?” since that also lowers blood glucose. They spent all this time and research money on a drug with horrible side effects of hyperglycemia and other issues. And here’s this diet that also inhibits that pathway because the body is perceived to be in a starvation state so Cantley began to suggest putting these women on keto diets alongside the drug. In a starvation state, activity in these pathways associated with growth slows down.

Tryba: Could you explain that a little more?

Kalamian: I call it abundance and austerity. When there’s abundance, the body goes, “Oh yeah, let’s grow, grow, grow. Hey, you cells over there, we don’t know what you’re about, but here, take some of this, we got plenty.” But when you’re fasting or when you’re calorie restricting or you’re carb restricting, when you’re limiting those nutrients the body is used to getting, then the body goes, “Wait a minute, we’ve got to keep the essentials up and running. But you cells over there, you're not helping us at all so you’re not getting any of this supply.” It has a major impact on those pathways. Everybody that’s even studied a little bit of cancer biology understands this but they don’t make the mental leap needed to of put it into practice. I mean, think about it. Oncologists have spent a fortune on medical school. Protocols replace curiosity. They have an algorithm they’re going to work with. They're in a clinical practice where they are respected by their colleagues.

Tryba: It’s perverse though.

Kalamian: It is perverse. It’s not in the best interest of the patient. But they don’t have the time, number one. They don't make a move without evidence from clinical trials, which are so much more challenging in diet research. They’re also worried about losing their standing in their profession. There’s a few of them out there. There’s Dr. Jethro Hu at Cedars-Sinai. He’s running a clinical trial on the effects of a ketogenic diet on newly diagnosed glioblastoma. After he was about year into that study, he said to me, “I was blown away. I expected there to be some impact on the tumor. But I didn't expect to see this much improvement in quality of life.”

Tryba: What was he seeing in the trial?

Kalamian: His clients were generally sailing through the radiation and chemo intensive protocol, whereas the people who continued eating standard diets were experiencing more profound side effects. For the most part, if you’re not reducing the inflammation caused by the treatment, you’re having to take a steroid drug called dexamethasone. It reduces inflammation yes, but one of its many side effects is that it raises glucose. In most cancers, but especially in brain cancer, this is associated with a much poorer prognosis.

Tryba: Some oncologists are kept in place by their financial dependency or fear of losing their status where they are working?

Kalamian: Yes. One example is Colin Champ, a radiation oncologist. He’s a Paleo guy, goes by Caveman Doctor. You look at what he was putting out there 10 years ago, and you’re thinking, “Oh great, a whole new wave of people who are going to make a difference.” And then he gets dismissed because of his blog posts. He's now started his own clinic in Florida.

Tryba: I feel bad for the people who might not find a person like you to work with.

Kalamian: Or the people being fed this misinformation about how unpalatable, dangerous, or impractical keto is. In my practice, we meet with people, collect information about their food preferences, and make beautiful meal plans or recipe books for them based on what they want to eat, not on what we think they should eat. We take people’s desires into account, but if they desire Entenmann’s pastry, well that’s definitely not going to work. Keto is about 5 to 10 percent carb. When you have fat and carb in combination, like an Entenmann’s pastry, that’s where you’re doing the most damage. But there are replacements for those things. If you’re a packaged food addict and you want to do keto, there are packaged foods you can buy. Of course, that's not ideal, so we steer people toward the better quality ones if that’s what they need to do to get up to speed with the diet. But we’re always working on moving them to the next step of using whole foods and tracking their nutrient intake for themselves. My son’s endocrinologist told me that the diet was not possible for most people. He said it was too difficult. I explained to him that difficult was sitting in the waiting room when my kid’s having his third surgery. That’s difficult. The diet’s a walk in the park.

Tryba: I don’t understand the disconnect. When you have someone you love who’s going through treatments, especially radiation, or if you read about the possible side effects from drugs, it’s endless. You have to get your blood and organ function monitored to make sure that the treatments are not pushing them into organ failure. It’s strange to me that doctors will say, “Oh, but asking someone to change their diet will be too hard for them.” Not only that, if you get away from packaged simple carbs, you feel better, even if you don’t have a cancer diagnosis. I have a friend who has multiple sclerosis. She found the Wahls Protocol. And just recently there has been some exciting new published research showing that keto is slowing progression of MS.

Kalamian: Absolutely. Good choice.

Tryba: Her doctor said the same thing, “Diet doesn’t do anything.” Really? Because it dropped her inflammation significantly. She lost the extra weight she was carrying. She has had no disease progression for years and has not had to use any of the MS drugs.

Kalamian: Isn’t that amazing? It’s food and supplements and exercise and improving sleep. I saw somebody took a photo of something on a doctor’s wall, and it said, “Don’t confuse your Google search with my medical degree.” It was up next to his medical degree on the wall. It’s this hubris. It’s this arrogance about their position in life because there’s that reverence for doctors. You go to other countries where doctors don’t have that status, where it may be easier to get your degree because you don’t have to have all that money for med school, you don’t have the status either. You’re there to help the family figure out what to do because they don’t have the resources to do a $100,000 treatment.

Tryba: The hubris is weird because there are advances in some cancer statistics but so many of them remain horrendous.

Kalamian: Peter Attia has a podcast called The Drive. He’s a medical doctor interested in healthy aging. He has interviewed doctors about this exact thing. I saw it early on when people said a miracle drug had come out for brain cancer called Temodar. It moved the needle on the median survival by just 10 weeks. That makes it a breakthrough drug, 10 weeks. The ketogenic diet alongside the standard of care often gives people at least an additional year, maybe a year and a half. They’re not going to get a dime for the diet. That’s the other part of it, the funding for the research. Pharmaceutical is not going to fund a diet study. Siddhartha Mukherjee wrote a book called The Emperor of All Maladies: A Biography of Cancer, which won the Pulitzer Prize. He posted at one point, “We’ve got the funding for the drug. But now we need $300,000 for the ketogenic part. Does anybody have any idea of how we can find the funding?” That’s Siddhartha Mukherjee. Nobody’s handing him $300,000. Dr. Jethro Hu at Cedars-Sinai also needed to get companies to donate equipment and food for his clinical trial on the effects of a ketogenic diet on glioblastoma.

Tryba: Why doesn’t the government provide more funding for studies?

Kalamian: It’s the government’s ties with the pharmaceutical industry. They want to support the institutions. Institutions get some of their money from the government. But they get the major part from pharmaceutical companies. The more clinical trials they’re running, the higher their prestige. Mass General and Dana-Farber are constantly pumping out all these clinical trials where all they’re doing is using people to gather data so they can move to another part of the clinical trial. They’re getting these tiny little incremental benefits. A couple of doctors are understanding of that and are more supportive of the diet option now. If somebody brings up that they want to do a ketogenic diet, the doctors will say, “Yes, that’s a really good plan.” But they never bring it up because it’s not a part of the standard care. It’s not an approved therapy. They don’t feel it’s within their wheelhouse to discuss diet unless they're asked to.

Tryba: How do you do this work of educating people about the power of keto for cancer without feeling crushed?

Kalamian: Because of my son. Any time somebody wants to put their foot on my head, I say, “No, I’m fighting for my kid right here. I’m fighting for the families, not just kids anymore. I’m fighting for the families that have a dog in this fight.” That’s what keeps me going. I have always looked at what I do as leaving a legacy for my son. I attribute that legacy to Dr. Tom Seyfried's efforts. A change in diet won't appeal to everyone with cancer, but it should be an option for those who want to make the effort. I want other people to be successful without having to cobble bits of info together like I had to do.