Summit County girl facing cancer doing better than expected | SummitDaily.com

Summit County girl facing cancer doing better than expected

Alli Langley
alangley@summitdaily.com

Lolli Piper Hope giggled and made faces at her baby brother Rukus. She hid her own face behind sunglasses and the brim of her Winnie-the-Pooh hat.

Sitting at Rocky Mountain Coffee Roasters in Frisco on Sunday, Oct. 26, the 4-year-old pulled off a long, colorful sock to show how much her leg had healed in the two months since her left foot was amputated.

Meanwhile, she chowed on slices of ham and thin squares of cheese. Until a few days ago, the 4-year-old hadn't eaten much solid food for weeks.

In early August, doctors biopsied a large, rapidly growing lump on Lolli's foot. The next day the hospital told her parents the little girl had cancer and they needed to act fast.

They removed Lolli's foot. Two weeks later, the girl began a year of chemotherapy treatment.

At the same time, supporters near and far away quickly rallied as the Hopes faced new financial and emotional challenges. The socially active family prepared for a year of isolation.

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ADJUSTING TO CHEMO

In two months, Lolli has been through eight of 43 scheduled rounds of chemo, said LaRie, Lolli's 32-year-old mom. Treatment is going much better than expected.

At first, though, Lolli refused to take her medications at home.

LaRie and her 36-year-old husband Nik tried everything. When Lolli wouldn't take pills to help with chemo-related constipation, her parents found gummies with fiber in them that Lolli would eat.

Lolli also rejected a numbing cream that would ease the pain around the port in her chest where hospital staff insert a needle and administer the strong chemo treatments every week. For a while she had to be held down for that part of the process.

She's since grown more comfortable with the treatment, LaRie said, and her body is responding well. Lolli's white blood cell count dropped but never to a worrisome level, and now the count is increasing.

The Hopes visit Children's Hospital in Denver for treatment every Monday, and sometimes they stay for five days of chemo. LaRie said they enjoy playing with toys and music instruments at the hospital.

"It's been fun," she said. "At least we're able to have fun."

Two months ago, the family was told they couldn't go hiking or do much outside their 360-square-foot home in Summit Cove.

The Hopes were devastated, but with Lolli's weakened immune system they didn't want to risk her getting sick and spending even more time in the hospital.

Soon LaRie and Nik learned that was the generic message given to families of cancer patients so they could brace themselves for the worst-case scenario. Because Lolli is doing well, she has been going to the movies and visiting family friends.

STAYING CREATIVE AT HOME

The hardest part of the whole process so far has been keeping up with Lolli's nutrition. She wouldn't even eat chocolate in the first few weeks.

The Hopes ended up juicing produce for her, and finally she started eating solid food again.

At home, Lolli plays with Lego toys and has been working on her spelling and math skills.

She paints all the time, and the Hopes recently mailed out the first three of her paintings to supporters who asked to receive them through the "Love for Lolli" Facebook page.

LaRie and Nik have been helping Lolli cope with emotional lows with meditation, yoga, art and music.

Lolli sings and plays ukulele, and sometimes she's joined by 9-month-old Rukus on kazoo and Nik on bass guitar.

She helps with chores and she prepares food for her parents that she doesn't always eat.

"She makes a killer bowl of cereal," LaRie said.

Lolli still has days where she doesn't feel like leaving the house or doing anything but sleeping. The Hopes often let how she feels dictate in what order they accomplish things.

"Everything is Lolli-led these days," LaRie said, "but not in a princess way."

LaRie and Nik have been working with Lolli to create positive tactile associations with her chest port and her stump to counter the negative associations from the medical procedures.

Lolli didn't want to touch her stump for the first two weeks, and bath time triggered emotional breakdowns. The Hopes have helped her overcome the psychological trauma of losing her foot by telling her she needs to love her leg, take care of it, touch it and talk to it.

Her stump is almost fully healed and ready for a prosthetic foot, LaRie said, but as long as Lolli doesn't start trying to use her missing foot as an excuse to avoid doing things, the family will wait to get her a prosthesis when she's ready.

NOT FIGHTING CANCER

Life for the Hopes has been slowly returning to a normal routine.

Nik works on the weekends at a restaurant, and LaRie hopes to return soon to her healing practices of Thai massage, reiki and polarity therapy. She recently took a federal massage therapy exam and is waiting on her state license.

The idea of working physically close to other people's bodies would scare most parents of kids going through cancer treatment, but not LaRie.

"Do I believe I'm endangering my child by touching other people? Absolutely not," she said.

A more cautious attitude is necessary with other types of cancer, like leukemia, LaRie said, but she's not going to start worrying about germs.

"If you think about it and you give it power, you give it power. If you don't, it's not really there," she said. "If she's going to get sick, she's going to get sick."

However, when ski season jumps into full swing and "the entire world shows up on our doorstep," she said, she'll have Lolli wear a mask in public.

LaRie prefers to look at Lolli's treatments more as accepting and managing cancer than fighting the illness. A fighting mentality creates more problems that will need to be addressed later, she said, and conceptualizing cancer as a scary enemy makes it harder to move beyond fear.

Hospital employees have repeatedly asked LaRie to write a book on parenting a child with cancer. If she does write a book, she said, she would focus more on her approach to helping loved ones through the healing process.

COMMUNITY SUPPORT

The Hope family has been overwhelmed by support from friends and strangers.

People have donated vehicles, juicers and meals, and they’ve received proceeds from fundraisers and donations that seem to show up at the perfect times, like when they were struggling to afford gas.

One of LaRie’s best friends wrote to the members of the band Widespread Panic, who signed a poster that will be auctioned off at a fundraiser for Lolli in February.

“The amount of stuff people have given us is unreal,” she said. “Nik and I don’t know how to say thank you to everybody.”

LOLLI FUNDRAISERS

On Friday and Saturday, Nov. 7 and 8, Ollie’s Pub and Grub in Frisco will have contests, raffles, face painting and live music. The fundraiser will start around 4 or 5 p.m. on Friday and 2 p.m. on Saturday.

On Sunday, Nov. 9, businesses displaying Lollipop Sunday fliers in their windows will donate 5 percent of sales to the Hopes.

The Goat Soup and Whiskey Tavern will host an event Feb. 5 with a raffle and live music. An auction will feature a signed Widespread Panic poster as well as donated goods from other bands.

To stay updated with ways to support Lolli, visit the “Love for Lolli” page on Facebook.