Hudson girl and her family continue race against time
APRIL GUILMET Union Leader Correspondent
McKenzie Lowe, 12, is all smiles after smashing a pie in teacher Alex Sobolov’s face during a fundraiser held in her honor Friday at Hudson Memorial School. Lowe has been battling DIPG, a rare and inoperable brain tumor, since November 2012. (cOURTESY)
HUDSON — As McKenzie Lowe counts down the days until her 13th birthday, her loved ones are racing against time.
The Hudson seventh-grader, whose battle with a rare brain tumor made national headlines when her family fought with the Food and Drug Administration to obtain a cancer treatment, is suffering many side effects as her disease progresses.
“She’s getting worse,” Lowe’s grandfather, Frank LaFountain, said. “Her balance and vision have been affected. But I remind her that we’ve been here before.”
Lowe was diagnosed with an inoperable tumor known as DIPG in November 2012.
LaFountain said he put his retirement plans in Florida on hold to assist with his granddaughter’s care. Earlier this year, he joined forces with family friend Kim Frenette and McKenzie’s parents, Ron and Dianne Lowe, in their efforts to convince the FDA to grant a compassion exemption. The federal agency eventually honored the family’s request on the condition that they find a local physician to oversee Lowe’s treatment. By late spring, the middle school student began antineoplaston (ANP) treatment, an alternative medicine for brain tumors developed by Texas doctor Stanislaw Burzynski.
Lowe wore a small backpack to carry the medicine, which was administered intravenously. LaFountain said the treatments, which weren’t covered by insurance because they aren’t yet approved by the FDA, weren’t well-tolerated by his granddaughter. The ANP treatments cost the family about $15,000 per month.“She had crippling headaches and her blood counts got very low,” he said. “At full dosage, her body just couldn’t handle it.”
Lowe went off ANP in mid-August, he said. Since then, her family has been researching other treatment options. She is currently on a regimen of gene-targeted drugs prescribed by doctors at Dana Farber.
The family departed for University of Chicago on Sunday, where they will meet with another team of physicians. LaFountain said his granddaughter may eventually undergo a tumor biopsy.
He’s hoping she may be eligible for a surgical procedure to implant radioactive seeds inside the tumor, which could slow its growth and possibly even shrink it.
“There are so many different treatment trials going on around the country right now,” LaFountain said. “The good news is, there seems to be more options than we had a year and a half ago.”Lowe continues to attend school when she’s feeling up to it, wearing special glasses to combat the double vision caused by her growing tumor. “She wants to be there,” her grandfather said.
A nurse has been assigned to accompany her around school.
Meanwhile, the Friends of McKenzie Lowe organization continues raising money to assist the family in their fight.
On Friday, her Hudson Memorial School classmates paid a small fee to see a staff member take a pie in the face. Sitting in a wheelchair, Lowe got in on the fun. The event raised more than $500, according to school officials.
Lowe, whose birthday is Oct. 8, has requested more Lego toys for the occasion.
“She’s obsessed,” her grandfather laughed. “I think she probably has about 30 Lego sets and counting.”
For more updates on Lowe, including local fundraising, visit Friends of McKenzie Lowe on Facebook.