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Saturday, June 28, 2014

Hudson girl begins treatment for cancerous tumor

McKenzie Lowe’s extended family, and even a few close friends, have taken on the look of a highly skilled team these days, with each individual working in concert to achieve one common goal: Get 12-year-old McKenzie well.

McKenzie, a Hudson middle school student, was diagnosed in November 2012 with diffuse intrinsic pontine glioma, an inoperable brain tumor. ...

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McKenzie Lowe’s extended family, and even a few close friends, have taken on the look of a highly skilled team these days, with each individual working in concert to achieve one common goal: Get 12-year-old McKenzie well.

McKenzie, a Hudson middle school student, was diagnosed in November 2012 with diffuse intrinsic pontine glioma, an inoperable brain tumor.

Last week, while she was beginning her long-awaited treatment, parents Ron and Dianne Lowe, grandfather Frank LaFountain, and friend and neighbor Kim Frenette were out canvassing Greater Hudson for donations of any kind to help offset the steep cost of the treatment.

Part of that mission are fundraisers, the next of which will be July 12 at the Hudson Fish and Game Club.

The most recent, Pizza Night at Kendall Pond Pizza’s Hudson and Pelham locations, was a resounding success, LaFountain said Friday.

But raising funds and monitoring McKenzie’s treatment are only the latest challenges in a long, arduous journey that the family began by facing the granddaddy of all challenges: convincing a bunch of federal bureaucrats to allow McKenzie access to a highly controversial drug whose creator, equally controversial
Houston physician Stanislaw Burzynski, was sanctioned by the Food and Drug Administration amid a firestorm of criticism over his experiments and trials.

The drug – antineoplaston, or ANP – was sought by the Lowes after they learned of cases in which it stemmed the growth of cancerous tumors in certain patients who Burzynski treated with ANP.

The family became especially interested when the drug appeared to shrink tumors in patients with DIPG, the type McKenzie has.

The treatments began Tuesday, and as of Friday, it has been “So far, so good,” LaFountain said.

“This is day four, and so far she’s not feeling any effects,” he said Friday. “She’s feeling good, seems to be sleeping well.”

The regimen requires the intravenous administration of ANP for 20 hours a day.

The drug is pumped from a pouch into an IV port implanted in McKenzie; she carries the pouch and small, portable pump in a “side purse,” LaFountain said.

“She can do a lot of things, ride her bike, walk her dog” while hooked up to the device, he said, but more strenuous activities such as playing soccer are off limits for now.

McKenzie’s parents drive her to Dr. Terry Bennett’s Rochester office, where McKenzie spends two to three hours a day. A nurse who agreed to be specially trained in order to treat McKenzie monitors her signs, does blood checks and adjusts the equipment as necessary.

The family reached a milestone in March when the FDA granted McKenzie a compassion exemption to its ban on ANP. But there was still a lot of work ahead: They needed to find a local doctor to oversee the treatments.

Enter Bennett, a 72-year-old Rochester physician who stepped up after hearing of McKenzie’s plight –
which sounded a lot like the experience he had several years ago.

Bennett, diagnosed with cancer and given months to live, successfully appealed to the FDA to gain access to an off-label version of a drug usually used to treat breast cancer in women and get it covered by Medicare.

Bennett said at the time he came forward because of the similarities in his and McKenzie’s cases, and he empathized with what she was going through.

“I thought, ‘If there’s any way they can make this happen, I’m all for it,’ ” he said.

“We have a (sick) little girl here. I will supervise what goes on here the best I can.”

And he will fulfill that commitment, Bennett said this week, even though he has come to view Burzynski as an opportunist who apparently has no problem pricing his drug beyond the financial means of most middle-class families.

“I’m looking at this $30,000 bill on this ‘free’ deal,” Bennett said, referring to the cost of McKenzie’s first month of treatment. Calling Burzynski “an extraordinarily greedy man,” Bennett said he hopes the Texas doctor relents on his financial demand, but, “So far, he’s not bending.”

“I agreed to do this, and I’m keeping my word,” Bennett added, saying he feels badly that the Lowe family needs to work so hard to raise funds to cover the costs.

“I’m doing it for free, the nurse is doing it for free; she’s carrying the freight on this,” he said.

LaFountain, meanwhile, said the family knew of the costs going in and has taken a “we’ll do what we need to do” attitude.

“We’ve known there are administrative costs all along,” LaFountain said, crediting Bennett for “sticking by his word” even though he’s upset with Burzynski.

Dean Shalhoup can be reached at 594-6443 or dshalhoup@nashuatelegraph.com. Also, follow Shalhoup on Twitter (@Telegraph_DeanS).