Brain cancer diagnosis doesn't dim local girl's passion for life

At 11 years old, Shannon Mayhan dreams of mythical creatures and magic, of unicorns, kittens and all things that sparkle.

Her bright pink room overflows with stuffed animals and bejeweled crowns won at beauty pageants, the walls decorated with giant drawings of purple cats, mustaches and Harry Potter posters.

Her parents, Luke and Elizabeth Coyle of Kalispell, put their faith in a different kind of power, one that they hope will cure their daughter.

Over the summer of 2017, the Coyles began to notice changes in Shannon’s behavior. She slurred her speech and had trouble with her vision and motor skills.

Though her pediatrician initially suggested a simple eye exam, Elizabeth said she knew something else was wrong and pressed for more.

Following an MRI on July 14, the family received the news of every parent’s nightmares.

Shannon was diagnosed with diffuse intrinsic pontine glioma (DIPG), a severe form of childhood brain cancer that affects the brain stem and has no known survivors.

Aggressive cancer cells intertwine and grow rapidly amongst brain cells crucial for vital functions such as walking, talking, eating and breathing, causing problems with balance, chewing and swallowing, nausea and vomiting, headaches and facial weakness or drooping.

The location of the tumor makes it inoperable and the outcome of such a diagnosis has changed little in the last 40 years.

“When they diagnosed her they said it’s pretty uncommon for anyone with this diagnosis to live more than 12 months, even with treatment,” Luke said.

That was seven months ago.

Despite the dim prognosis, Luke said he and his family refuse to give up hope.

“I trust God, and I just continue to believe that he’s going to lead me down the path that will save my little girl because that’s all I care about,” Luke said. “There’s a lot of research going on. There’s always the hope that something comes along before she runs out of time.”

Immediately following her diagnosis, Shannon and her family traveled to Denver, Colorado for a 6 weeks of radiation treatment in hopes of shrinking the tumor and slowing the progression of her symptoms.

When they first arrived in Denver, Shannon’s condition began deteriorating. She struggled to pick things up and, unable to walk, was temporarily confined to a wheelchair.

A phobia of needles and the large, unfamiliar machines terrified Shannon at first, Luke said, but over time she learned to handle her treatments with courage and grace.

“After I got used to it, I’m like, it’s just another everyday life thing,” Shannon said.

Not long into the three months they would spend in Denver, Luke said he and his family began to experience the power and importance of community.

Luke’s sister and her family of six let his family of five stay with them for the entirety of Shannon’s treatment, providing a home environment and opportunities to reconnect with family.

Shannon’s school in Kalispell, Helena Flats Elementary, provided season passes for the family to the Denver Zoo while her fellow students organized a day of work, doing odd jobs around Kalispell to raise money for their classmate.

As her treatment progressed, Shannon began to show signs of improvement, and after a few weeks, most of her symptoms faded.

Once Shannon regained her balance and began walking again, multiple Denver families made donations to help her successfully compete in a local beauty pageant, where she took second place.

Though not a cure, the radiation proved effective enough to get Shannon back to feeling like herself.

Following her treatment, Luke said their family got busy making memories, making the most of each day.

A donation from family friends and coworkers sent the family to the Wizarding World of Harry Potter in Orlando, Florida where Shannon saw a real fire-breathing dragon and used her own inner magic to cast spells on floating feathers.

Two weeks later, the Make-a-Wish Foundation sent the family on a cruise to Hawaii, where Shannon learned to surf and played in the ocean.

Once home again, Shannon returned to school, where her parents said she’s most in her element — playing basketball, socializing with friends and reading book after book.

“I re-learned how to draw, but when I’d write, my hand kind of shook,” Shannon said. “But that didn’t stop me because I love writing.”

On days when her symptoms subside, Shannon journals, tells stories and plays with her cats.

Her parents described her as outgoing and vibrant, a people-person with no filter and extra flare. She looks out for her two little brothers, Quincy, 7, and Riley, 4, and shows a relentless passion for life.

“I’m so blessed. She’s just a great kid,” Luke said. “I don’t know what my family is like without her. She’s the fire.”

But over the last month, some of the symptoms that vanished with radiation have begun to return, and on days when her illness rears its head, Luke said, Shannon’s flame dims.

On those days, Elizabeth said her daughter prefers to snuggle up and stay close, though she rarely talks about what’s bothering her, opting instead to focus her attention on do-it-yourself projects and videos.

According to Luke, Shannon’s symptoms are expected to return over the next few months, and he and Elizabeth are now facing the decision of whether to put their daughter through another round of radiation treatment and clinical trials to try and prolong her life by a few more months.

Their conversations with Shannon about her illness are usually short and inquisitive, with most questions directed toward how she’s feeling.

Two weeks ago, however, Luke said he laid most of the cards on the table in a discussion about what is happening to Shannon and what cancer means for her.

“I think the only thing we haven’t touched base on [is] the finality of this diagnosis,” Luke said. “And I probably will never have that conversation with her until it becomes evident that that is the end.”

According to Luke, Shannon’s doctors have begun asking questions about the eventuality of what is to come.

“They want to know that we have a plan to communicate when she can no longer talk. They want to know what we’re going to do for palliative care when we can’t take care of her anymore,” Luke said, wiping his eyes. “Until the symptoms show me that I need to walk down that road, I’m not going to walk down that road because that kind of means that I’m giving up.”

“I still believe that there can be another outcome. It doesn’t have to be the doctors’ outcome, so I hold onto that until I feel like I need to bring her to a different place,” he added.

For now, Luke said he and Elizabeth are focused on making the most of the time they have.

“I want her to experience as much as she can…I may never take her to her first day of college, walk her down the aisle, meet her children, find out what she’s really capable of,” Luke said. “Hopefully that’s not where we’re headed and God will provide a way.”

While Shannon plans her next birthday party nearly a year away, her parents are reaching out to their community to raise awareness about Shannon’s condition and collect as much information as they can in hopes of seeing her blow out those 12 candles.

“We want to encourage the community to stay involved. We’re still fighting this fight and they’re all welcome to be part of that,” Luke said.

To donate to Shannon’s benefit fund or to offer any information about DIPG, visit www.pleasehelpshannon.com.

Reporter Mary Cloud Taylor can be reached at 758-4459 or mtaylor@dailyinterlake.com.