Raffi’s challenge
by STACIE DUCE - Ravalli Republic
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Holding a self-portrait he recently painted, Raffi Walsh poses for a photograph under the watchful eyes of his parents, Mimi Kalamian and Peter Walsh. After five failed chemotherapy drugs, three surgeries and participation in a clinical trial, Raffi’s battle with a tumor in his brain has taken a turn for the better after his parents started him on a rigorous diet.
PERRY BACKUS - Ravalli Republic
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First-grader Raffi Walsh said his favorite part of school is lunch.
Thursday he sat with his classmates in the cafeteria at Washington School in Hamilton. While some ate peanut butter and jelly sandwiches, other’s had lasagne on a tray from the school kitchen.
Raffi opened one plastic container of pasta and meat sauce and another of chicken broth.
What his classmates would never know is that his pasta is a Japanese noodle made from yams and his broth was supplemented with 20 grams of a highly-refined coconut oil, called MCT.
“It’s good,” Raffi said of his pasta. “I like it cold.”
Maybe that’s why he told the lunchroom aid who offered to heat his food in the microwave that he only wanted it cooked for “two seconds.”
“Two seconds?” she asked.
“Two seconds,” he confirmed.
Raffi knows what he wants in life and, most of all, he doesn’t ever want to have another chemotherapy treatment.
“That used to be a pain in the butt,” he said.
His new diet may help his wish come true.
Raffi was diagnosed with an aggressive brain tumor just before his fifth birthday.
His parents, Mimi Kalamian and Peter Walsh, did everything they could to find him the best care. Raffi doesn’t remember much of his time in a Denver hospital, nor the details of his treatments in New York, but he does remember the three-hour train rides with his mother each week from Connecticut to downtown New York City.
“It was rough, but we tried to make the best of it,” Mimi said. After five failed chemotherapy drugs used during 83 chemo treatments, three surgeries and participation in a clinical trial, “It was clear that the tumor was winning,” she said.
Raffi’s vision, language and motor skills suffered significant damage from the growing tumor. He also endured a “cascade of endocrine problems affecting many vital functions,” she said.
Almost by accident, Mimi discovered some research on a classic ketogenic diet that was having remarkable results for patients suffering from debilitating epileptic seizures. Johns Hopkins had also been using the diet for years to treat other conditions, including cancerous tumors.
The ketogenic diet had been shown to slow the progression of cancer by limiting the amount of glucose made available for tumor growth.
For Raffi, his tumor shrunk by 15 percent after following the rigorous diet for only three months.
The ketogenic diet is high in fat, provides adequate protein and requires a very low intake of carbohydrates.
For breakfast, Raffi likes to eat a boiled egg and a slice of apple. For dinner he might have slices of cucumber and meat “rolled really tight, like this,” he said.
For dessert, his dad has come up with a variety of concoctions that use cream cheese, heavy cream and sugar-free Jell-O.
“We’ve found a lot of good recipes,” Peter said.
The MCT oil Raffi takes replaces sugar and is burned much more efficiently.
“It actually promotes the burning of body fat for fuel,” Peter said. He is considering buying it in bulk and rebottling it for distribution locally.
“We’ll call it Raffi’s snake oil” he joked.
Peter uses the oil in salad dressings and mixed with butter and he regularly serves a large portion in Raffi’s broth.
“It metabolizes so quickly by the liver that it doesn’t seem to have any side effects,” Peter said.
While Raffi was “resistant” in the beginning of his strict diet, over the last year he has learned to adapt and conform. He did say, like any kid would, the thing he misses eating most is pizza.
Mimi has such a passion for her new awareness of the power of dietetics that she has enrolled in a long-distance master’s program with Eastern Michigan University to earn a degree in human nutrition.
“It’s not so radical that you can’t do it concurrent with your conventional treatments, but there are a few limitations,” she said. “But it only works if you do it correctly and rigorously.”
While some initially might consider the diet to be unhealthy for a kid, Mimi and Peter have statistics to prove otherwise.
Raffi’s body mass index has dropped dramatically in the last year. They say his overall quality of life has improved with some recovery of his vision, increased stamina and improved pituitary function.
They work closely with Raffi’s pediatrician, Dr. Blaise Favara.
“He’s very supportive,” said Mimi. “We’re getting much better care in Montana than anywhere else,” she said. “In New York I was just a number, no one even knew my name, I was just Raffi’s mom.”
But in Hamilton and through her course study, she collaborated with others including her husband and Favara to present at an international symposium on the medical benefits of the ketogenic diet in Phoenix last month.
They also hope to educate as many people locally as they can.
This weekend they are hosting a silent auction to benefit Favara’s nonprofit South Valley Child and Family Center. They are also implementing “Raffi’s Challenge” to “change the face of cancer” as well as raise funds and awareness.
The event will be Saturday, May 17 from 2 to 4 p.m. at their family business, Main Street Rugs in Hamilton, where six oriental rugs will be auctioned and all proceeds will go the family center.
They also have educational posters hung to share their story and Raffi’s amazing medical history.
The conclusions of several medical studies proclaim “A ketogenic diet can be successfully implemented in pediatric oncology patients as a means to effect tumor metabolism.”
Mimi concurs. “Every time I see a child carted off to radiation, my heart just sinks,” she said. “I don’t want them to go through that unnecessarily.”
So while Raffi’s lunch may be unique from that of his classmates, it fits right in with his unique style and personality.
It’s not often you see a first-grader wear a collared shirt and tie to school.
“I have two ties and a bolo tie,” he said. “I like to wear ties, so my dad told me what to do so they don’t ruin,” he said as he swooped his pink striped tie over his shoulder. “I don’t want to stain it with meat sauce,” he said.
To learn more about this weekend’s benefit auction or about the ketogenic diet, contact Mimi or Peter at Main Street Rug Co. 126 Main Street in Hamilton or call 363-0338.
Reporter Stacie Duce can be reached at 363-3300 or sduce@ravallirepublic.com
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Reader's Comments >>
Tresa Gibson wrote on Mar 11, 2009 10:59 PM:
Tresa
Fletcher's mommy "
Louise Toulouse wrote on May 16, 2008 8:40 PM:
Love, LULU "
chik wrote on May 16, 2008 4:52 PM:
Great work Stacie! thanks for bringing this story to us! "
Lauri Mosbrucker wrote on May 16, 2008 8:49 AM:
I too, have had brain tumors I've had removed, but I have gained a lot of weight and I was wondering if this MCT would help me also. I'm very interested in learning more, and I will keep Raffi in my prayers that he won't have to go through anymore chemo or surgeries, it's just not fair to little kids. "