Raffi's story

In December of 2004, our 4-year-old son Raffi was diagnosed with a brain tumor. After three surgeries and several failed chemo/drug protocols, it was clear that the tumor was winning. Raffi's vision, language and motor skills deteriorated and a cascade of endocrine problems affected many vital functions. Our little fighter had done everything we asked of him, but he was no match for his opponent.

In March of 2007, we learned of Dr. Thomas Seyfried’s research at Boston College. Dr. Seyfried and colleagues had just published a study demonstrating that a calorically restricted ketogenic diet could slow progression of brain tumors in mice by limiting the amount of glucose available for tumor growth (1). In this paper, Dr. Seyfried had 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 reduced glucose uptake at the tumor site by >21% in both children (2).

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 which served as our manual for this “off-label” use.

With the support of his pediatrician and oncologist, Raffi began a restricted ketogenic diet concurrent with a low-dose chemotherapy drug. (NB: Since Raffi’s team was not comfortable with “diet alone”, we agreed to the least toxic option open to us- a short course of a drug which he had already taken without success in the previous year.)

Amazingly, Raffi’s tumor shrank by 15% in the first 3 months! This novel approach to cancer management succeeded where conventional therapies had failed. Eventually, his team suggested that we stop the chemo. Raffi continued with the ketogenic diet as his sole therapy for 3 more years. During that time, MRI’s and clinical signs both suggested that the tumor was essentially stable. Even though the diet could not cure our son of his disease, we were thrilled to see him regain some lost ground!

Raffi's life ended on April 17, 2013 at the age of 13. Ultimately, he died of complications from a large inoperable cyst that impinged on his brainstem.

 

 
 

References:

1. Zhou W, Mukherjee P, Kiebish MA, Markis WT, Mantis JG, Seyfried TN. The calorically restricted ketogenic diet, an effective alternative therapy for malignant brain cancer  Nutr Metab (London). 2007;4:5.

2. Nebeling LC, Miraldi F, Shurin SB, Lerner E. Effects of a ketogenic diet on tumor metabolism and nutritional status in pediatric oncology patients  J Am Coll Nutr. 1995;14(2):202-8.

3. Freeman JM, Kossoff EH, Hartman AL. The ketogenic diet: one decade later  Pediatrics. 2007;119(3):535-43.