HUDSON — McKenzie Lowe, a Hudson 12-year-old battling a rare brain tumor, will soon undergo a new treatment with a little help from her friends.
When Rochester physician Terry Bennett heard Lowe’s story, he knew firsthand what the preteen and her family were going through.
Bennett, in his late 70s, was also given a devastating diagnosis several years ago. Much like Lowe, he’s managed so far to beat the odds through unconventional means. That’s one of the reasons he stepped forward to oversee Lowe’s care.
“She’s only 12 — how could you not reach out,” Bennett said on Tuesday. “And right now, the clock is ticking for both of us.”
In late March, the Food and Drug Administration granted Lowe a compassion exemption, which will allow her to begin antineoplaston (ANP) treatment, an alternative medicine that controversial Texas doctor Stanislaw Burzynski has been using to treat certain brain tumors for nearly four decades.
Conventional treatments have failed Lowe, who was diagnosed with DIPG, a rare and inoperable brain tumor in November 2012. Over the past several months, her parents, Ron and Dianne Lowe, her grandfather, Frank LaFountain, and family friend Kim Frenette have been pleading with the FDA to grant a compassion exemption. The agency honored the family’s request on the condition that a local physician oversee McKenzie’s treatment.
Bennett said after he was diagnosed with a rare liver cancer known as biliary adenocarcinoma, he battled the FDA to allow him to be treated with a breast cancer drug that wasn’t approved for off-label use.
“I am alive today because I am stubborn and left no stones unturned in my own case,” he said.
Still, he warned that the odds aren’t in Lowe’s favor. “Don’t expect a miracle,” Bennett said. “When you discard the chaff, Burzynski only saves about five percent of patients like McKenzie.”
Last week Lowe underwent an MRI that revealed the tumor is slowly growing.
“It’s looking slightly bigger than it was before,” Frenette said. “But she’s still feeling pretty good, all the more reason why it’s so important for her to begin treatment soon.”
With Bennett overseeing Lowe’s treatment in New Hampshire, the family has found a registered nurse who has volunteered to travel to the Burzynski Clinic in Texas to learn how to administer the infusions intravenously.
LaFountain said Burzynski has agreed to provide the infusions at no charge, though other expenses are expected to be considerable. Lowe’s family and friends are raising funds to assist with upcoming travel and other expenses, which Frenette said the family would be expected to pay out-of-pocket.
A “Friends of McKenzie Lowe” page has been set up on the Go Fund Me website to help the family. Hudson resident Casey Meehan, a friend of the family, said the goal is to raise $20,000. As of Tuesday afternoon, $1,270 had been raised.
“She’s full of an amazing passion to live life to the fullest, despite her ongoing battle with this horrible disease,” Meehan said of Lowe. “We are running out of time, but not hope.”