We were sitting in a therapist’s office with our four-year-old son. Something was up with Raffi, and we needed to get a handle on it. He was increasingly withdrawn and unable to focus. To us and to the professionals who evaluated him, it looked like a classic case of attachment disorder. We’d adopted Raffi as a toddler, and the diagnosis seemed to fit.

Then I got the call. I’d forgotten to turn off my phone when our therapy session started. I glanced at the caller ID and saw that it was Raffi’s pediatrician. Raffi’s recent eye exam had uncovered a condition known as optic nerve pallor. The most likely cause was poor nutrition; this made sense given that Raffi was malnourished and suffering from rickets when we adopted him. But quick on the heels of this discovery, Raffi had experienced a trio of brief but disabling headaches. Erring on the side of caution, the pediatrician ordered an MRI to rule out any brain abnormalities. Our world was hit with an atomic blast as we listened to the news: “I’m so sorry to tell you this. Raffi has a brain tumor. This tumor is very large, and you need to get him to the hospital—right now. I called ahead. They’re waiting for you.” That ended our therapy session and the world as we knew it. Before we even had time to process what we’d heard, we were on the road, driving 16 hours through a blizzard. By the next afternoon our son was undergoing a biopsy. We were handed the pathology report on Christmas Eve and sent home for the holiday.

And so it began. In just over two years, Raffi endured three surgeries and several failed chemo/drug protocols but the tumor was clearly winning. Raffi's vision, language and motor skills deteriorated, and a cascade of endocrine problems impacted vital functions. Our little fighter had done everything we asked of him but he was no match for his opponent. Raffi’s pediatric oncologist spelled it out for us: Our only option now was to move Raffi to palliative care; a toxic cocktail of old chemotherapy drugs that his doctor referred to as “a sledgehammer, not a precision tool.” At best, it might temporarily slow progression but more likely, it would mean infections, hospitalizations, transfusions. Summed up: a devastatingly poor quality of life in what little time he had left.

I went online to learn more about one of the drugs in this toxic cocktail. I bookmarked a page that I wanted to print but when I went back to the Science Daily site that press release had been replaced by one from a study out of a research lab at Boston College. Dr. Seyfried and colleagues had just published their work demonstrating that a calorically-restricted ketogenic diet had slowed progression of brain tumors in mice by limiting the amount of glucose available for tumor growth. In their paper, they referenced an earlier case study involving two pediatric brain tumor patients that had been placed on a ketogenic diet for 8 weeks. Through FDG-PET imaging, it was clear that this diet had significantly reduced glucose uptake at the tumor site in both children.

We also learned that Johns Hopkins Hospital, among others, had a long history of safely implementing this diet in another vulnerable pediatric population: children with intractable epilepsy (3). They had even written a book on the topic that we could use as our manual for this “off-label” use.

Raffi’s local pediatrician and oncologist conditionally agreed to support our move to keto as long as it was concurrent with conventional care. We agreed to the least toxic option open to us- a short course of a drug which he had already “failed” in the previous year.

Amazingly, Raffi’s tumor shrank by 15% in the first 3 months! His vision improved as did his endocrine functions. This novel approach to cancer management had succeeded where conventional therapies had failed. A few months later, his oncologist stopped the chemo, and Raffi continued with the ketogenic diet as his sole therapy. Even though the diet could not cure our son, we were thrilled to see him regain so much lost ground! Despite all the ups and downs, we were even able to enjoy an extended stay in Mexico. What a joy to watch Raffi run on the beach and hike in the mountains!

Ultimately, a ketogenic diet could not prevent the development of a large and inoperable cyst that impinged on his brainstem. Raffi's life ended on April 17, 2013 just past his 13th birthday.