Kids & Family
Young Girl Hopes for Chance to Give a Special Kind of Thanks
McKenzie Lowe, 12, is hoping for a special exception to undergo an experimental treatment that could save her life.
By Carol Robidoux
McKenzie Lowe needs a miracle. She knows it, and her family knows it.
But for now they will settle for a special exception from the FDA, so she can at least take advantage of an experimental treatment that could save her life. Her family has launched an online petition at change.org, hoping for 100,000 signatures, the minimum number it takes to get things moving in Washington, DC, or so they've been told.
On Thanksgiving Day McKenzie's family, which has ties to Salem, will sit down together to count their many blessings, including the zest for life McKenzie continues to have. They will also quietly acknowledge the one-year anniversary of the unthinkable news, that McKenzie, 12, of Hudson, must live the rest of her life with an inoperable, incurable brain tumor – at least, until that miracle arrives.
Since last year she's undergone two rounds of radiation therapy, the only effective treatment found so far to shrink the tumor, says her grandfather, Frank LaFountain. That is all the radiation she can have.
The only recourse remaining is chemo, according to doctors, none of which has any proven effect on DIPG – Diffuse Intrinsic Pontine Glioma. It's an aggressive and relentless cancer of the “pons” region of the brain stem, which controls breathing and sight, among other bodily functions. The cancer cells grow in and around vital, healthy cells, making it impossible to remove surgically, with out devastating effects.
LaFountain said the family learned two months ago that the tumor was starting to grow again.
"So I started doing some digging and researching for something to help her, and I found out about this experimental treatment, only we need special approval from the FDA to get it," LaFountain said.
Antineoplastons is an experimental cancer therapy administered at the Burzynski Clinic in Texas. LaFountain has flown out there to learn more about the controversial treatment.
He talked to families who say their loved ones survived DIPG because of the treatment.
McKenzie Lowe needs a miracle. She knows it, and her family knows it.
But for now they will settle for a special exception from the FDA, so she can at least take advantage of an experimental treatment that could save her life. Her family has launched an online petition at change.org, hoping for 100,000 signatures, the minimum number it takes to get things moving in Washington, DC, or so they've been told.
On Thanksgiving Day McKenzie's family, which has ties to Salem, will sit down together to count their many blessings, including the zest for life McKenzie continues to have. They will also quietly acknowledge the one-year anniversary of the unthinkable news, that McKenzie, 12, of Hudson, must live the rest of her life with an inoperable, incurable brain tumor – at least, until that miracle arrives.
Since last year she's undergone two rounds of radiation therapy, the only effective treatment found so far to shrink the tumor, says her grandfather, Frank LaFountain. That is all the radiation she can have.
The only recourse remaining is chemo, according to doctors, none of which has any proven effect on DIPG – Diffuse Intrinsic Pontine Glioma. It's an aggressive and relentless cancer of the “pons” region of the brain stem, which controls breathing and sight, among other bodily functions. The cancer cells grow in and around vital, healthy cells, making it impossible to remove surgically, with out devastating effects.
LaFountain said the family learned two months ago that the tumor was starting to grow again.
"So I started doing some digging and researching for something to help her, and I found out about this experimental treatment, only we need special approval from the FDA to get it," LaFountain said.
Antineoplastons is an experimental cancer therapy administered at the Burzynski Clinic in Texas. LaFountain has flown out there to learn more about the controversial treatment.
He talked to families who say their loved ones survived DIPG because of the treatment.
But since the treatment is not yet approved by the FDA, McKenzie can’t access it without a "compassionate use" exemption. The FDA has made 471 exemptions for this treatment to date. Her family is hoping a petition they've launched on change.org will help make her No. 472.
"I just heard from a man in Nashua who said he went to the clinic for his son diagnosed with DIPG at 2, and now he's fine," LaFountain said. "There are success stories."
He says there's a 27 percent cure rate for DIPG with this therapy, which may not sound like much, he says.
"But with conventional medicine, it's zero, so for us, it's all we've got left," LaFountain said.
"We know six or seven kids who've passed away this year – every time we turn around we see these kids who started doing better, then took a turn. Last spring we saw a little girl at Dana Farber who seemed like she was getting better. Then they did reradiation and chemo, and by summer she'd passed away."LaFountain said.
During many sleepless nights over the past year LaFountain has discovered all kinds of remedies discussed, from super doses of vitamin C and herbs, to hot-cold therapy. The more he reads the more suspicious he becomes of the methodology of traditional treatment plans, which seem to him to serve the drug companies more than the sick.
"McKenzie takes a lot of things, vitamin C, graviola, selenium, she tries to follow a healthy diet – these are all things we've heard from cancer survivors and from books, from naturopathic doctors. The cancer doctors for the most part turn their noses up whenever we tell them about something we're read. But she doesn't want to have to keep eating all these pills. She'll try anything to shrink the tumor. We know the chemo will just wear her down and then we'll watch he wither away," LaFountain said.
In support of McKenzie and their daughter, Diann Lowe, he and his wife Joann spend most of their time back in New Hampshire, even though they had retired to Florida. Wednesday night they were at Hudson Memorial School during parent-teacher conferences, getting signatures. Last weekend they collected signatures at a craft fair at the Crowne Plaza in Nashua. They've got about 8,000 signatures so far, and more signature gathering dates planned.
LaFountain said he's also reached out to Sen. Jeanne Shaheen and Gov. Maggie Hassan. He drove some paperwork to Congresswoman Ann Kuster's office in Concord, to eliminate the back and forth by snail mail.
"I'm reaching out to the politicians, and I hope to shake up the FDA. We need to give her a special exemption. I'm ready to stand on the steps of the FDA and not leave until they do." LaFountain said. "And if they arrest me, they arrest me. I'd gladly swap places with her if I could. But I can't, so we'll just press on."
You can sign the online petition at change.org here.
Related Story: Jan. 16, 2013 Outpouring for Girl with Inoperable Brain Cancer
He says there's a 27 percent cure rate for DIPG with this therapy, which may not sound like much, he says.
"But with conventional medicine, it's zero, so for us, it's all we've got left," LaFountain said.
"We know six or seven kids who've passed away this year – every time we turn around we see these kids who started doing better, then took a turn. Last spring we saw a little girl at Dana Farber who seemed like she was getting better. Then they did reradiation and chemo, and by summer she'd passed away."LaFountain said.
During many sleepless nights over the past year LaFountain has discovered all kinds of remedies discussed, from super doses of vitamin C and herbs, to hot-cold therapy. The more he reads the more suspicious he becomes of the methodology of traditional treatment plans, which seem to him to serve the drug companies more than the sick.
"McKenzie takes a lot of things, vitamin C, graviola, selenium, she tries to follow a healthy diet – these are all things we've heard from cancer survivors and from books, from naturopathic doctors. The cancer doctors for the most part turn their noses up whenever we tell them about something we're read. But she doesn't want to have to keep eating all these pills. She'll try anything to shrink the tumor. We know the chemo will just wear her down and then we'll watch he wither away," LaFountain said.
In support of McKenzie and their daughter, Diann Lowe, he and his wife Joann spend most of their time back in New Hampshire, even though they had retired to Florida. Wednesday night they were at Hudson Memorial School during parent-teacher conferences, getting signatures. Last weekend they collected signatures at a craft fair at the Crowne Plaza in Nashua. They've got about 8,000 signatures so far, and more signature gathering dates planned.
LaFountain said he's also reached out to Sen. Jeanne Shaheen and Gov. Maggie Hassan. He drove some paperwork to Congresswoman Ann Kuster's office in Concord, to eliminate the back and forth by snail mail.
"I'm reaching out to the politicians, and I hope to shake up the FDA. We need to give her a special exemption. I'm ready to stand on the steps of the FDA and not leave until they do." LaFountain said. "And if they arrest me, they arrest me. I'd gladly swap places with her if I could. But I can't, so we'll just press on."
You can sign the online petition at change.org here.
Related Story: Jan. 16, 2013 Outpouring for Girl with Inoperable Brain Cancer
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