Four-year-old amputee from Summit County finishes chemotherapy | SummitDaily.com

Four-year-old amputee from Summit County finishes chemotherapy

Alli Langley
alangley@summitdaily.com
Lolli Piper Hope, 4, of Summit Cove, enjoys a book with her dad, Nik, at The Pour House in Summit Cove on Tuesday, June 30, 2015.
Alli Langley / alangley@summitdaily.com |

Lolli Piper Hope started acting like a different person as soon as she finished her last chemotherapy treatment in early June.

“It was almost instant,” said her mother LaRie. “She is a much happier child than she was before cancer.”

When she was diagnosed with a rare soft tissue cancer in August, and her left foot was amputated, friends and strangers across Summit County and beyond gave their support and donated to the Hope family.

On Monday, June 29, doctors removed her port, a device surgically implanted on her rib cage through which drugs were injected.

Her medical team detected no sign of cancer in her most recent scans, so she is now in remission. She will be officially cancer-free after she successfully passes through about 15 more scans spread over the next five years.

Lolli and her family — mom LaRie, dad Nik and younger brother Rukus — persevered through almost a year of driving back and forth to Denver for treatment despite financial and emotional struggles.

“We’ve put on a really good face,” LaRie said. “Cancer sucks.”

WHAT WORKED

Lolli’s least favorite part of the process was when the drugs were injected. LaRie said she had to hold her daughter down almost every time during the three cycles of chemo over about nine months.

For most of treatment, Lolli refused to eat anything besides a handful of foods that included spicy chicken wings, spaghetti and meatballs, and breakfast burritos from a nearby restaurant.

She went through a phase for several weeks when all she ate was slices of ham.

Nik and LaRie were given a juicer, and they made green juices often and told Lolli that if she sucked down one ounce of the drink she could eat anything she wanted, even marshmallows, for the rest of the day. The juice seemed to help.

LaRie, a licensed massage therapist who has studied Eastern therapies and mind-body transformational psychology through the Southwest Institute of Healing Arts, said the three cycles corresponded to the body, mind and spirit in the ways they challenged the family.

Of the alternative therapies LaRie tried with Lolli, sound therapy with tuning forks was the most effective, especially for when Lolli had digestive issues. Combined with diet and yoga, LaRie said Lolli didn’t need to use nine prescribed medications and supplements.

For LaRie, the best days were when she could work and “when we would sleep for more than six hours.” She credited her sanity to regular communication with a mentor from her school as well as a psychology fellow provided by the hospital.

QUESTIONED USE OF DONATIONS

Though Medicaid has covered the family’s medical bills, the last year came with unforeseen costs.

“We’re broke,” LaRie said. “Financially, it strapped us.”

The family didn’t own a car before, and the Hopes were given two vehicles along with the thousands of dollars donated.

They sold one that wasn’t fit for their regular trips to Denver for a few hundred dollars, and they used donation money to buy a Subaru and snow tires as well as pay for gas, food and whatever else was needed to get Lolli through, LaRie said.

Nik left his restaurant job in March and transitioned to being a full-time parent, LaRie said, after dealing with injuries related to years of physical labor. LaRie herself opened a healing practice on Main Street in Frisco but said she wasn’t finding clients and couldn’t put enough energy into the business.

She ended her lease there after a few months and then worked occasionally as a massage therapist at a Silverthorne spa, though she was at the hospital with Lolli most of the time, she said.

LaRie described the months of chemo as exhausting and said the family basically lived out of a vehicle even after totaling a car in an accident in March.

That’s when “any string that was holding all the pieces together just snapped,” she said, and the family was still reeling from hate mail.

In late January, after a February benefit was canceled, the Hopes received an anonymous letter that LaRie said called her a horrible mother and accused the family of misusing the donated funds.

Based on personal details in the letter, LaRie thought someone close to them wrote it, and the family lost a couple friends after confronting them about it.

LaRie addressed the letter online through the public Love for Lolli page on Facebook and wrote that the money was not used to start her business or support Nik’s children from a previous relationship.

A family friend held the funds, which were used for transportation, LaRie said. “That was my understanding of what everybody was raising money for.”

She maintains that she asked for little, and the family continued to live simply. The benefits, donation cans, websites and other fundraisers were created by an acquaintance when Lolli was diagnosed.

“I don’t think anybody understands how much of this I didn’t ask for,” LaRie said.

A LIGHT AT THE END

A few events over the last year stood out to LaRie as happy times.

Lolli met and bonded with Paralympian and local resident Amy Purdy, and, for months, the Make-A-Wish Foundation planned an event that would bring Lolli joy.

Lolli wished for a big house for her family and a farm with lots of animals. The foundation doesn’t do that. She also wanted to ride elephants in Thailand; the foundation doesn’t do that either.

LaRie told the organizer to just surprise the family, and Make A Wish gave them a weekend in Colorado Springs in early June that included a behind-the-scenes tour of the circus and a trip to the zoo. Lolli got to meet a 58-year-old elephant and walk on stilts.

Lolli understood that her body would start growing again once she finished chemo, and, for a while, she talked about how her foot would grow back.

Nik said he explained to her that though she couldn’t regenerate limbs like a lizard, when she gets bigger, she will have more feet than everyone else: one for dancing and one for swimming, one for running and one for hanging out at home.

The best day, by far, was Lolli’s final day of chemo.

“The last year has been a lot of me telling her, ‘No, you can’t do that until chemo’s done,’” LaRie said.

Even the day after her port was removed, LaRie kept telling Lolli to settle down in hopes that resting would help her incision heal faster.

Soon though, likely later this week, she will be hiking on local trails like other 4-year-olds.


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