Four-year-old Summit County girl bravely faces amputation, chemotherapy
FUNDRAISERS AND DONATIONS
This Sunday, Sept. 14, the public is invited to a cook-out fundraiser starting at 11 a.m. at Rainbow Park in Silverthorne. The benefit will have a silent auction and other items for sale.
Next Sunday, Sept. 21, drivers can get their oil changed for Lolli from 10 a.m. to 2 p.m. Vista Subaru-Chrysler of Silverthorne will donate labor, oil and filters and give all proceeds from $30 oil changes to the Hope family.
People can donate to Lolli Hope’s family at gofundme.com/d39djo or to the “Lolli Piper Hope Donation Fund” at any Wells Fargo bank. Supporters also can send well wishes to: Miss Lolli Hope, PO Box 5373 Dillon, CO 80435.
For updates about Lolli and more fundraisers and community support efforts, visit the “Love for Lolli” page on Facebook.
Lolli Piper Hope passed out bright pink birthday cake. One piece for her mom, one for her dad, one for each of her parents’ friends and their kids.
She looked around to make sure the dozen people gathered at Ready, Paint, Fire! in Breckenridge to celebrate her fourth birthday had a piece before she ate.
Then, it was time for presents.
With her left foot wrapped in bandages, the girl who loves dancing and drawing slowly stood on her other leg to show off a gift, a handmade tutu. Knowing Lolli, she probably wanted to spin and jump around in the rainbow-colored tulle.
Instead, she smiled as she gripped the chair next to her, twisting her hips and wobbling back and forth.
Suddenly, an adult friend picked her up for a hug, accidentally putting pressure on the medicine port implanted in the left side of Lolli’s chest. She started crying.
The friend handed Lolli to her mom, LaRie, who held and consoled her for a few minutes until her sobs faded. LaRie passed Lolli to her dad, Nik, taking the couple’s infant son, Rukus, and reaching over to rub Lolli’s head.
Lolli’s pain was a blunt reminder of what lies ahead for the Hope family. The Aug. 31 party, mostly smiles and paint, was a last hurrah before Lolli started chemotherapy three days later on Sept. 3. On Sept. 11, she officially turned 4.
During Father’s Day weekend in June, the Hope family was at a friend’s house when Lolli fell down some steps and landed on her left foot.
Her parents noticed a bump, but everyone, including a nurse practitioner, thought the bump was a minor injury from the fall. Lolli continued to dance, run and play like normal.
An X-ray a week later still couldn’t explain the bump, which hadn’t changed in size. Local doctors soon referred the Hopes to Children’s Hospital of Colorado in Denver.
In July, LaRie and Nik packed Lolli and baby Rukus into a borrowed car, drove down and scheduled an MRI for August.
Then the bump started growing.
Lolli complained of pain in her foot and nothing seemed to help.
Then came the gut-twisting, rapid-fire medical decisions.
After the MRI, Lolli’s doctor, orthopedic oncologist Dr. Travis Heare, told the Hopes the bump looked more worrisome.
What did worrisome mean? LaRie wondered. The family returned the next day for a biopsy surgery.
While Lolli lay in recovery, her doctor sat her parents down in a room with two new faces. His reddish glassy eyes gave away the diagnosis.
Cancer. The doctor said he almost watched the bump grow in front of his eyes.
The cancer was rhabdomyosarcoma, he said, a rare, aggressive soft tissue cancer found mostly in children that typically spreads undetected through the body by the time a tumor is the size of a pea.
Lolli’s tumor was the size of a cherry on the surface, LaRie said, and grew inward to consume two-thirds of Lolli’s foot.
Back in Denver the next week, doctors said their only option was to amputate.
Then, even without her foot, Lolli’s cancer could spread and doctors worried they would discover more cancer too late. Amputation and chemotherapy would be the one-two punch.
LaRie, who has a background in alternative healing therapies, said everything happened so fast. She and Nik were numb. Though she may protest some aspects of Western medicine, she went along with the doctors’ treatment plan. For her, cancer is different.
“It’s not my scope of practice,” she said. “I told them, ‘I’m going to follow your rules 100 percent. You cure cancer. I’ll rehabilitate her after.’”
Nik struggled more with trusting the doctors’ decisions.
“I want to see what they see,” said the father who has worked as a mechanic. “I want to see the issue before I make a fix.”
In the end, the Hopes agreed to move forward — amputation and all.
When LaRie, 32, and Nik, 35, married, they both changed their last names to Hope.
Nik’s grandma always said, “If you think you have nothing, you always have hope.”
LaRie met Nik 14 years ago, she explained while nursing Rukus at Lolli’s birthday party. They worked together at the old Denny’s in Silverthorne.
LaRie arrived in Summit County with her military family a few years before that. As a teenager, she lived in the Breckenridge bed and breakfast her parents ran.
She played instruments and sang, and, among other things, she and Nik connected through their shared passion for music. For the last 10 years, they could be found dancing at local music shows. Lolli’s middle name was inspired by a Phish song.
Nik and LaRie, though drawn to each other, faced external forces in the beginning trying to pull them apart. LaRie’s family, who had moved away from the area, didn’t approve of their relationship. They no longer speak.
Like many longtime locals, the Hopes have worked different jobs around the county.
“We kinda live the no-plan plan. It works well for us,” LaRie said.
Nik has installed fireplaces and fixed up cars. LaRie worked as a hairdresser for years.
More recently, LaRie has been using her love of yoga, massage and therapies like reiki to build a business. She aims to help clients heal and discover their own power, and two years ago she moved to Arizona where she pursued a degree in mind-body transformational psychology through the Southwest Institute of Healing Arts.
Living apart was hard on the family, and LaRie moved back in December with Lolli and continued her studies online. Nik supported the family by working almost every day as a cook and manager at Peppino’s Pizza and Subs in Frisco.
That was the no-plan plan until Lolli’s diagnosis.
Medicaid will cover most of her medical bills, but the situation still brings a host of other expenses and financial stress.
“Before this happened we were just barely…” LaRie said, trailing off. “Just like everybody else in Summit County.”
THE BAD BUMP
On Wednesday, Aug. 20, Lolli said goodbye to her left foot.
“Bye foot, you’re a bad foot. You need to go. Bye,” she said.
How do you explain to a 3-year-old that she has cancer? That her foot needs to be amputated? That, for the next year, food will taste bad and she can’t play outside?
LaRie and Nik told Lolli that her body flipped a self-destruct switch and rewiring that circuit would take at least a year.
The bad bump in your foot is cancer, LaRie said. We have to get rid of the bad bump.
“And give me a new, good bump?” Lolli asked.
In the hospital halls, nurses talked about who had been assigned Lolli that day.
“You got Lolli!? I wanted Lolli,” the Hopes heard them say.
Hospital staff say kids her age generally throw a fit, even for small procedures. But not Lolli.
“The moment I think she’s going to lose it, like every other 3-year old would, is when she always pulls through,” said her anesthetist Mahsa Hashemi. “I think we’re kind of all a little blown away by how she has handled everything.”
Though the subtype of cancer Lolli has comes with some scary statistics, the hospital is confident she will survive.
Mary Ann Hensley, the nurse coordinator with Lolli’s team, remembered the girl’s first few steps using a walker after her foot was removed.
“I think this is working,” Lolli said, lighting up. “I think this is going to work!”
Lolli has always made friends with strangers and been the center of attention, LaRie said. Cancer hasn’t changed that.
One day after Lolli’s amputation, LaRie’s friend Emma Hirsch surprised her at home. Lolli had drawn herself on her chalkboard with a frowny face, but when Hirsch showed up with a cinnamon roll, Lolli redrew herself, this time with a smile.
Then Hirsch noticed Lolli had drawn an X where her foot used to be.
Are you upset about losing your foot? Hirsch asked.
Lolli said yes, she was sad. Then she started dancing the robot. That’s Lolli, the same girl who told her doctor — the one with the big, bushy moustache — that he looked like the Lorax from Dr. Seuss.
Before one of her surgeries, Lolli’s anesthetist paused before administering drugs because the young patient looked on the verge of getting upset.
Nik told Lolli to close her eyes and take a yoga breath.
In… Out… She relaxed.
Kids usually need meds to calm down, the anesthetist said. All Lolli needed was yoga.
Ask a nurse. Parents of kids with cancer often don’t use the C-word or tell their kids they’re going into surgery. Not the Hopes.
“I’m not going to be the kind of mother who lies to my kid about anything,” LaRie told the anesthetist.
Lolli knows step-by-step what’s happening. When her parents learned her foot would be amputated, they showed her photos online of other children with amputations and an elephant amputee.
LaRie and Nik also have held Lolli to the family’s rules, which often get thrown out the window when kids get sick. She still must eat right and use her manners.
Instead of seeing Lolli’s cancer as a potentially terminal illness, LaRie and Nik choose to see it as a chance for the family to spend more time together and an opportunity for Lolli, in some still unknown way.
“Everything is what it is,” LaRie said, “and everything’s perfect regardless.”
She and Nik have focused on teaching Lolli to express her emotions with her body. On blank paper, the kinesthetic learner paints and draws her feelings.
“I’m having a sad day today,” she says sometimes, and LaRie will ask how she can help.
But it’s not always that easy. Some days, her inner toddler emerges like a tornado, screaming and kicking.
“She’s a fighter, which I hope plays out to be in her benefit with this,” LaRie said.
‘THIS IS HOME’
Earlier this summer, before the amputation, Lolli danced at a Summit School of Dance camp.
When dance instructor Katie DeSantis later heard about Lolli’s diagnosis, she created a “Love for Lolli” Facebook page, started a donation campaign and organized a benefit event.
“It was just so heartbreaking that now she can’t come back for a while,” DeSantis said. “They’re going to need so much help. I just don’t want people to forget.”
Friends of the Hope family placed donation jars and fundraiser fliers around the county. Firefighters raised money at a gas station, and a handful of businesses pitched in by donating a portion of sales.
At first, the Hope family didn’t have a car, which made back-and-forth trips to Denver even more difficult.
Word spread, concerned strangers pulled strings and the Hopes suddenly had two cars. Others have given food, raised money through garage sales and planned more events.
“I can’t even keep track of all the fundraisers,” said Hirsch, one of LaRie’s best friends. “We all don’t have family up here, so the support has been absolutely flabbergasting.”
The money donated will stay in the bank until the Hopes need to use it for medical costs, transportation and other expenses during Lolli’s treatment and recovery. She will need new prosthetic feet as she grows.
The Hopes plan to give any money leftover after the long process to one or more families facing similar situations.
“It will be paid forward with the same intention it was given to us,” LaRie said.
The outpouring of support is a testament to the amazing community in Summit, Nik said. Even people they’d never met — like Ready, Paint, Fire! owner Beth Huelin, who donated the birthday party — have helped.
“All of that just solidifies that this is home,” Nik said.
After a hectic month of being embraced by friends and strangers, near and far, the Hopes are now facing the reality of a year of chemotherapy.
Almost every week they will drive Lolli to Denver for treatment, and her weakened immune system means the family must hole up in their 360-square-foot studio in Summit Cove.
Since Lolli started chemo Sept. 3, they’ve stopped sharing food and drinks and are vigilant about anything that enters the house that could make her sick.
“Having to pull the plants out of the house was really emotional,” Hirsch said. “She’s a granola kid. She’s got her hands in the dirt.”
The family will turn their home into Lolli’s preschool, and they’ve moved and rearranged the small place so everyone will be on the floor with Lolli, as she scoots around.
“We’ll try to do everything possible to keep the cabin fever to a minimum,” Nik said.
LaRie decided to take a break from her studies, Nik dropped down to working just a few days a week, and the couple told most of their friends they can’t visit.
“Any local event they’re always there,” Hirsch said. “Being cooped up in the house is a huge shift.”
Since starting chemo, Lolli moves from one extreme to another without much warning, LaRie said, sometimes refusing to take her medicines or eat. Not even chocolate.
Everything becomes more difficult when Nik is away at work. LaRie said she now understands the look of madness she sees on parents’ faces on the hospital’s oncology floor.
Baby Rukus sometimes is the only thing making the Hope family smile. Meanwhile, Lolli hops and hobbles, often finding herself stuck on the ground.
She keeps asking for her new foot.
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