HUDSON — Fed up with unreturned calls to the FDA, Frank LaFountain drove himself to Washington, D.C., on Tuesday in a last-ditch attempt to save the life of his 12-year-old granddaughter, McKenzie Lowe.
Diagnosed with an inoperable brain tumor known as Diffuse Intrinsic Pontine Glioma (DIPG), the Hudson sixth-grader has already outlived the average life expectancy for children suffering from the rare condition.
This past November, about a year after McKenzie's diagnosis, her family began the process of seeking federal permission to pursue a controversial and experimental treatment for the little girl's rapidly growing brain tumor after several unsuccessful rounds of chemotherapy and radiation.
The Lowe family is still holding out hope that McKenzie can obtain antineoplaston treatment at a Texas clinic.
Dr. Stanislaw Burzynski discovered antineoplastons, also known as ANP, in 1967.
According to Burzynski, the naturally occurring peptides have the ability to reprogram cancer cells without destroying normal cells.
The Burzynski Research Institute has conducted extensive research on ANP over the past four decades, according to the clinic's website, and the treatment has shown great promise in patients with malignant brain tumors.
Help in Washington
An online petition fighting for a compassion exception for McKenzie has received well over 63,000 signatures.
The petition garnered the support of Granite State legislators and last fall, U.S. Sen. Kelly Ayotte wrote a letter to FDA Commissioner Margaret Hamburg.
At the time, Ayotte said she felt decisions regarding a child's medical treatments should be made by the family, not the federal government, noting that the Lowes "are fully aware that the benefits of ANP have been disputed amongst the medical community, with previous FDA actions taken against Burzynski."
U.S. Sen. Jeanne Shaheen also wrote letters to the FDA in support of McKenzie's proposed treatment.
"Every child deserves a fighting chance to live the life ahead of her," Shaheen said on Tuesday. "McKenzie is determined to beat this disease and I hope she can with the best and most appropriate treatment available."
Shaheen vowed to continue working with the Lowe family.
In a letter sent to Commissioner Hamburg Jan. 17, both Ayotte and Shaheen urged the FDA to communicate directly with the Lowe family.
In early December, the Lowe family was told that McKenzie would be permitted to start ANP therapy in Texas, provided the family could find a physician willing to monitor her progress locally, family friend Kim Frenette said.
Burzynski even offered to provide the therapy to McKenzie at no cost, according to her family.
But just over a week later, further complaints against Burzynski were revealed and the FDA told the family they could no longer issue a compassion exemption.
"It's come down to this," said LaFountain via his cell phone as he drove on the interstate Tuesday morning. "So now I'm headed out to bang on a couple doors. They may want me to go away but I'm not backing down."
LaFountain said he recently learned that the FDA has made more than 50 claims against Burzynski and at least one of his patients died while being treated.
Attempts to contact Burzynski's clinic this week were unsuccessful.
Last best chance
Despite the FDA's allegations, LaFountain said he still wants to see his granddaughter obtain ANP treatment, which he was told has about a 30 percent success rate.
"I was told there is now a clinical hold, that no doctor nowhere will be able to obtain this drug," he said. "Meanwhile, kids all over the world are dying right now. Is pumping them full of chemotherapy and radiation really the answer?"
LaFountain said he's now been told a congressional hearing in Washington would be the only way to overturn the FDA ban. His calls to Commissioner Hamburg's office hadn't been returned and he wanted to talk to her face-to-face.
"I've talked to people who took (ANP) 18 or 19 years ago and they're still alive today," he said on Tuesday. "I think we should be given the chance to stand before the lawmakers, to allow these survivors to share their stories."
By midday on Wednesday, LaFountain got his wish and had arranged meetings with legislators and FDA officials, including Hamburg, over the course of the next several days.
There are others
California resident Ric Schiff, a detective whose family was likewise affected by tragedy, planned to join them by conference call.
Schiff, who appeared in the 2010 documentary film about Burzynski, "Cancer Is A Serious Business," is a veteran of the San Francisco Police Department, maintains it was chemotherapy and radiation, not cancer, that ultimately killed his young daughter, Crystin, in the late 1990s.
The girl was diagnosed with a fatal and malignant brain tumor at age four and doctors told the family that an aggressive combination of chemotherapy and radiation would be the only way to buy her some time.
"For six months we literally tortured our little girl," Schiff said. "We had to use rubber gloves to change her diapers as her urine burned with poison."
Six months later, Crystin's tumor was 95 percent diminished, but the family was warned it would most definitely return.
Not wanting to put his daughter through conventional treatment yet again, Schiff learned about Burzynski's treatments.
After two cycles of ANP treatment, Crystin's cancer was undetectable but her neurological functions were deteriorating.
By the end of July 1995, Crystin was dead. Doctors said brain necrosis, not cancer, was the cause.
"The autopsy showed she was completely cancer free," said Schiff. "So the truth is, she didn't die of a terminal illness. She died from bad advice."
Back at home, the cost of McKenzie's current medical regime continues to skyrocket.
One of her drugs costs about $160,000 annually, according to LaFountain. Insurance doesn't want to pay for it, he said, and dozens of area businesses have stepped forward in helping to raise money for the family.
'No common sense'
It's a story Dartmouth, Mass., father Phillip Norton knows all too well.
Norton's son Braiden, now 8, was diagnosed with a brain tumor called Pylocitic Astrocytoma shortly before his second birthday.
Doctors at Boston Children's Hospital performed surgery to remove most of the tumor, but gave the boy a 50 percent chance of survival after the mass, located on Braiden's brain stem, began to grow again.
Specialists at Dana Farber Cancer Center recommended a yearlong course of chemotherapy but after further research the Nortons knew they wanted to find a gentler alternative.
"What they were going to give to my kid was a poisonous joke," Phil Norton said.
Three days before Braiden's first scheduled chemotherapy treatment, the Nortons discovered the Burzynski Clinic. Though doctors at Dana Farber advised against it, the family was soon on a plane bound for Texas.
For the next four years, Braiden wore an IV backpack containing his ANP treatments, but otherwise suffered no side effects,
"He was a normal kid who went to school, played with his friends," Norton said. "With the help of a nurse at school, we were able to treat him at home."
Regular MRIs showed dramatic results and within a month, Braiden's tumor had shrunken by nearly 20 percent.
In February 2012, Burzynski discontinued Braiden's treatment since the tumor was virtually undetectable.
"For the past two years he hasn't even needed to take a Tylenol," Norton said.
But in mid-December, doctors said Braiden's tumor was growing back.
"It was horrible news, but I figured we'd just put him back on the ANP," Norton said. "The FDA said no."
Braiden's doctors, once again, want to start chemotherapy.
"As a parent, how can I put my kid through all that," he said. "Especially after I already know of a better way, a way we already know would work."
"There's no common sense where I live anymore," Norton said.