As girl battles a ‘monster’ on her brain, friends rally around her

Parker Monhollon invited the world to join her on the fight of her life last month when her family posted a video to YouTube.

Total strangers — a Kansas City Royal among them — have responded in a giant way that has humbled her family.

In the Jan. 16 video, 8-year-old Parker is in her purple bedroom in Silver Lake, Kan. But she’s not going to talk about her room, she tells her viewers.

“I just got done with MRI. They said I have a brain tumor,” the third-grader says in her singsong voice. “And it’s something that’s on your brain. And it’s called tumors. And they get bigger and bigger. So you have to take these pills.”

The tumor tangled like spider legs in the lower part of Parker’s brain stem — in a vital area that controls her breathing and heart rate — has a long medical name: diffuse intrinsic pontine glioma, or DIPG.

But Parker’s family and friends call it the “monster.”

It is the same brain cancer the country learned more about last year through Lauren Hill, an Indiana teenager with DIPG who got her dream of playing basketball for Mount St. Joseph’s women’s basketball team before she died last April. She was 19.

Parker loves to dance. She takes lessons at an Olathe studio, and since her diagnosis her town of Silver Lake and the close-knit local dance community have rallied behind her, hosting fundraisers and soliciting donations through a “Pie in the Face” challenge that is flirting with viral status.

The Twitter hashtag #ParkerLovesLife has become a rallying cry for her followers on social media.

Dance studios and dance teams from Kansas State University, Johnson County Community College and several Kansas City area high schools have posted tribute videos and sent Parker good wishes.

On Tuesday members of Kappa Delta sorority at K-State posted a music video for Parker set to Rachel Platten’s “Fight Song.”

Kansas City Royals pitcher Chris Young sent a video message this week, too.

Fighting childhood cancers like DIPG is one of the jobs facing the Obama administration’s new White House Cancer Moonshot Task Force, which met for the first time this week. The plan: to spend nearly $1 billion on cancer over the next two years.

Speaking of moonshots, astronaut Neil Armstrong’s daughter died of DIPG before she turned 3 in 1962.

It is a rare, pediatric brain tumor that affects about 300 children, typically between the ages of 5 and 9, every year, according to Boston’s Children Hospital. It is very difficult to treat. The tumors are aggressive, and there is no cure yet.

Since she was diagnosed last month, Parker has posted videos nearly every day to a Facebook page called “Parker Loves Life.” The last few were posted from Memphis, where she and her parents, Danny and Amanda Monhollon, are at St. Jude Children’s Research Hospital.

Parker began radiation treatments earlier this week and is a candidate for clinical trials at several hospitals across the country.

Her diagnosis “has been nothing short of a nightmare” for her parents, said a statement from Parker’s grandfather, Rusty Monhollon.

“The outpouring of love and support they’ve received — from family, classmates, friends, and total strangers — is inspiring and a source of strength and comfort. It allows for both Danny and Amanda to be with Parker during her treatment.

“It also helps big sister Rivers and little brother Dominic have some semblance of normalcy while their parents and sister are away.”

The ‘big bad wolf’

This is the story that Parker’s family has shared with the world on social media over the last few weeks.

Parker was born on July 26, 2007, with multiple heart defects. Doctors told her parents that their baby would need major heart surgery before she was 6 months old. But her heart grew strong on its own, and she didn’t need the surgery.

The first inkling of the brain tumor came about a week before Christmas when her parents noticed Parker’s left eye straying inward toward her nose, sort of like she was going crosseyed but with just one eye. They made an eye appointment for her.

But Ann Rupp, the nurse at Parker’s school, Silver Lake Elementary, worried that something worse was happening to this “firecracker” of a little girl.

“It was just different than anything I’d ever seen before. And she was having headaches and double vision,” Rupp said.

Parker had an MRI on Jan. 15.

The diagnosis came the next day.

“I didn’t think it would be this,” Rupp said. “We called it the big bad wolf.”

Parker’s mom left it up to Rupp to decide how to share the news with Parker’s classmates. So, after parents were informed, the third-graders were called together, and Rupp drew pictures to explain what was going on in Parker’s brain.

They talked about what kinds of treatments Parker might have. They did not talk about her prognosis, “because honestly, we don’t know,” Rupp said.

But news travels fast in a small town. “My mom said she’s only going to live for 15 months,” one student told Rupp.

“I said, ‘Miracles do happen,’ ” Rupp said. “And by golly, if anybody’s going to do it, it’s going to be Parker.”

Macky’s story

Kristine Wetzel, a high school history teacher, is following Parker’s progress from her home in Huntington Beach, Calif.

Wetzel has lived this nightmare herself. Her daughter, McKenna, died from DIPG on July 21, 2011, just days before her eighth birthday.

“The DIPG community is pretty tight, so when a new child is diagnosed, the news goes out very fast.” Wetzel said. “We’re kind of all in this together.”

When McKenna was diagnosed, Wetzel used the Caring Bridge website to keep family and friends informed. “We were keeping it quiet, we didn’t want the attention,” Wetzel said.

But over the last few years more families like Parker’s are using social media, especially Facebook, to share their journeys publicly, Wetzel said.

For instance, a Facebook page called TeamNick is documenting the story of Kansas City third-grader Nick Oudin, who was diagnosed with DIPG in November 2014. In May, Nick was the guest of honor for the SpongeBob SquarePants 400 at Kansas Speedway. And over the holidays, Kansas City firefighters gave Santa Claus a ride to Nick’s house.

After her daughter died, Wetzel created the McKenna Claire Foundation to raise money and awareness for DIPG.

“We discovered that since this disease, like most childhood cancers, was considered ‘rare,’ there was little or no government funding to pay for the research needed to find answers,” Wetzel says in her pitch to foundation donors as she raises money for pediatric brain cancer research.

“If you are a parent, I am sure you can imagine the pain of hearing that not only is there no cure available for your child’s illness, but there is absolutely no hope that she will survive long enough to find one.

“Now imagine the guilt you experience when you look into her expectant face as she waits to hear you tell her everything will be OK.”

Learning that this type of tumor has been to difficult to study and examine in the lab, Wetzel also donated McKenna’s brain to the Monje Lab at Stanford University. “We knew this was a step to keep fighting it,” she said. “My child didn’t have a chance, but I want other children to have a chance.”

Over the last few years more scientists have begun asking patients’ families to consider donating tumors for research purposes. Stanford researcher Michelle Monje has found that one key to dealing with DIPG might lie in an existing drug, one already approved by the Food and Drug Administration.

In laboratory testing, the drug both slowed the growth of the tumor in a lab dish and prolonged the life of mice who had the brain tumor. The research team is now planning trial studies in children with DIPG.

Wetzel and her family packed a lot of life into McKenna’s last few months — a trip to Hawaii, visits to “American Idol” and “Dancing with the Stars” shows.

“McKenna definitely lived a rock star life for a while,” Wetzel tells foundation supporters, “but would gladly have given it all up to be able to run again, to, as she put it, ‘Get rid of that stupid tumor.’ ”

Parker Monhollon has a to-do list, too.

Meet child superstar dancer Kaycee Rice.

Go on “The Ellen DeGeneres Show.”

Swim with dolphins.

Go on a real date.

Her parents recently fulfilled one of their own desires. They each got a tattoo, mom’s on her right forearm, dad’s on his left.

Just one word.

“Parker.”

This story was originally published February 3, 2016 at 3:32 PM with the headline "As girl battles a ‘monster’ on her brain, friends rally around her."