UPDATED: 'I've got special people and the Almighty helping me'

From left, Karen Purington, her daughter, Nicole, and Bruce Knight. (The Lebanon Voice photo)

Bike run will benefit Lebanon girl stricken with cancer; updated at bottom with donation address and contact info on benefit ride

LEBANON - Nine-year-old Nicole Purington, an irrepressible, bubbly grin on her face, grabs a cracker and scoots up on a chair at the kitchen table where her mom talks about her daughter's lifetime battle with the stage four Neuroblastoma cancer that's threatened her since she was an infant.

You'd almost never guess she was anything but a healthy, happy youngster, till you notice the pair of hearing aids she wears, her auditory range compromised by 18 months of intense chemotherapy that began when she was just six months old.

Karen Purington has a hard time taking her eyes of her youngest daughter.

"She also has aspects of autism and Asperger's, which means she doesn't realize danger, so I keep an eye on her," says Karen, who has been caring and advocating for Nicole since she noticed a hard mass in her stomach when she was just three months old.

With an eye to continuing to care for Nicole and help the Purington family which has been beset by a host of financial and medical challenges, the Patriot Riders of America will host the 2016 Nicole Purington Benefit Ride on June 5.

Karen Purington said recently the problems with Nicole surfaced as an infant when she noticed a hardness in her stomach.

"The doctor said it was gas," she said. "Then some time later I saw a bulge on the side of her head.

"They did a CT scan and found a bone mass, that's when I said I want to go to a Boston hospital," Purington remembers. "We went down there and they tried to do a scrape on the inside of her head, they couldn't stop the bleeding; we almost lost her then."

That was on Nov. 13, 2007. Nicole was given a massive transfusion of blood and an aggressive chemo treatment to staunch any advance of the tumor. At that point they knew Nicole had cancer, they just didn't know what type. It took an agonizing month for doctors at the Dana Farber Cancer Institute to learn it was neuroblastoma - nervous system cancer - an often deadly form of the disease that shows up in about 650 each year nationwide, most of the victims under 2 years old.

Karen spent the next two and a half years in Massachusetts so she could be close to her ailing daughter who endured 18 months of intense chemo.

"Her whole body looked like it was just punched," said Karen, stifling tears.

After two and a half years Nicole was released from Dana Farber and the family came home to their Gully Oven Road home with its beautiful grounds and small pond where Nicole last Monday was busy showing off baby ducklings that'd just hatched within a few days.

Even though Nicole was home, when they first returned in 2009, they still had to travel to Boston four times a week for more chemo.

Ironically, now that they were finally back home together, the Puringtons would find it hard to keep the home they loved so much.

At the end of 2009, her husband, Dean Purington, lost his job at Spencer Press where he'd worked for many years when the company abruptly closed. He immediately began working to get his GED.

Karen had enrolled Nicole in the Baxter School for the Deaf in Falmouth. Nicole's hearing was impaired likely due to the chemo. She's unable to hear high-pitched sounds of words that have a "th" or "sh" due to the whistling component involved in the phonics, Karen explained.

In December 2010 Dean had a heart attack just two days after Karen had ovarian polyps surgically removed.

"We thought we were going to lose the house," she said. "We didn't get paid for three months; they were going to take the house. We cashed in our 401Ks and got penalized. Our truck was repossessed."

That's when she asked Bruce Knight, a retired Sanford firefighter, if he could help.

"I knew firefighters sometimes do benefits, so I asked," she said.

Knight, who serves as a volunteer driver for York County Community Action and had been driving Nicole and Karen daily to the Baxter School for several months, was more than ready to lend a hand.

"I asked Bruce if he could do some charity run and he said yes," she said. "He also got me in touch with (former Assistant Rescue Chief) Jason Cole, they saved my house."

She said Cole helped in many ways, including getting his Rescue crews to help stack donated firewood to heat their home one winter and helping to organize a breakfast benefit at Stokewoods Restaurant.

That's how the Nicole Purington Benefit Ride to help the Purington family got started. Knight, who is the president of the Patriot Riders of America, Chapter 1, began the ride six years ago. Each year it has blossomed, from some 25 riders the first year to some 75 last June, Knight said. The Patriot Riders of America Chapter 1 also helped replace the roof on the Puringtons' home a couple of years ago.

All the proceeds of the ride go to help the Puringtons, and while things may be looking up for the family, they still face stiff financial obstacles and looming health concerns for Nicole.

With the help of Knight, Dean Purington got a job as a mechanic at North Country Tractor in Sanford, but that's still just one paycheck coming in to help the family pay its $1,500 a month mortgage, which had to be refinanced to help pay medical bills and transportation costs.

There's been other hardships. Last year their water system failed. Plus before he got the job at North Country Tractor, Dean got infections in his teeth and they had to all be pulled, costing about $8,000. At the time he had no dental insurance.

And just this past February her car broke down and she had to get a new car, which with its 15.9 interest rate makes the car payment some $200 a month.

And to add insult to injury, the government stopped her daughter's social security payment because they have assets beyond their house of more than $5,000, Karen said. Those assets include one car that's broken down, the one she bought, a Harley Davidson motorcycle (our one luxury, Karen admits) and a $1,000 certificate of deposit she won't touch because it's there to take care of Nicole "if something were to happen," she says, her voice tightening.

Other health issues continue to haunt Nicole as well.

Two years ago she began to have tingling in her hands and feet.
They did another CT scan and an MRI. Karen believes the tingling is again, due to the massive chemo she underwent at such a young age.

Additionally, a bone specialist has indicated Nicole could also have MS, so they continue to monitor her spinal development with an eye toward puberty when MS can become a more significant challenge due to growth spurts.

But one challenge Nicole doesn't face is a plethora of people who want the best for this adorable little girl.

For Knight, the Benefit Ride is a labor of love for someone he dearly adores.

"She's the cutest thing, I just love her," said Knight, who added Nicole, herself, comes along for the ride in a special sidecar.

The hour and a half benefit run begins at Iron Tails Saloon with registration from 9-10:45 a.m. on Sunday, June 5, with kickstands up at 11 a.m. The run will meander down Milton Mills and County Road to Sanbornville then up Routes 153 and 11 to an ice cream stand in Newfield, Maine, then return to Iron Tails for food, fun, music and raffles.

The cost to participate is a donation of any amount.

For more info on the benefit ride contact Knight at 207-651-9328.

If you can't go on the benefit ride but want to contribute make you check out to The Nicole Purington Fund and mail to The Nicole Purington Fund, Sanford Institution for Savings, 900 Main Street
PO Box 472, Sanford, Maine 04073-0472.

Karen said tops on her prayer list for this year's benefit would be hoping to free her family from the monthly $200 car payment and maybe getting some gas cards, but whatever the outcome, she's confident someone's looking out for Nicole, her and Dean, as well as an older daughter, 12-year-old Katelyn, who suffers from ADHD and a heart condition.

"I've got special people and the Almighty helping me," she said as Knight smiles from across the kitchen table and a bemused Nicole looks back and forth still smiling.