Shy girl with stage 4 cancer now a 'passionate' teen advocate for research
Everyone in the hospital clinic is drawn to Megan Bugg - the nurses, the patient families and the camera crew.
Four years ago, Megan would have shunned the attention, but on this afternoon, she embraces it from the little girls who can count on her as a friend through illness and the caregivers who have watched her grow up with cancer.
The 17-year-old has invited them to the clinic at Northwestern Medicine Central DuPage Hospital in Winfield for a photo shoot that may not be glamorous but captures another kind of beauty.
"In spite of everything she has gone through medically, she has done it with such grace," nurse practitioner Kathy Trimble said.
Megan is the smiling, self-assured model for Ivory Ella, a clothing brand that is donating a portion of the proceeds from sales of her new collection to pediatric cancer research conducted by a team of doctors at Ann & Robert H. Lurie Children's Hospital in Chicago.
She looks nothing like the shy, timid girl who avoided eye contact and didn't want to talk about her cancer diagnosis at 13.
"I definitely think people always kind of looked at me as the girl who has cancer, but I think with this collection, I've become more than that," said Megan, whose Ivory Ella line launched Saturday. "I've become an advocate, and I've become someone who people look to and someone who people think is strong, which is something I never thought I would be for anyone."
'She should not be here'
Megan has had every reason to turn inward and shut out the world.
In 2014, she was trying on clothes she got for Christmas when her family noticed a lump on her forearm. Doctors told the eighth-grader she had an advanced case of stage 4 alveolar rhabdomyosarcoma, an aggressive cancer found in about 300 new U.S. patients each year.
"They were honest with us that the odds were not in her favor," said her dad, Kent Bugg. "And if you look online, and unfortunately I did that way too often, and you check the odds, she should not be here right now."
Megan had tumors throughout her body - "too many to count," her dad said. Even more staggering are the numbers behind her initial treatment and two relapses: more than 110 radiation sessions, 90 weeks of chemotherapy and three surgeries.
That regimen has left her with what seems like a nearly endless litany of side effects, her dad said. She's had heart damage, hormone damage and nerve damage in her legs.
"She has trouble catching her breath still. She struggles with memory loss," Kent Bugg said. "The long-term effects, there are just so many of them because of the nearly barbaric treatments that we have for our kids. Our kids are getting chemotherapy drugs that are sometimes 20, 25 years old because we have not made advancements in the area like we should."
Megan, though, has taken it upon herself to change that.
Finding her voice
Megan initially didn't want anyone to know about her diagnosis.
"She even struggled to look you in the eye when she talked to you, and she never wanted to be the center of attention and avoided social situations," her dad said. "And having childhood cancer has forced her to grow up very quickly and become not only an advocate for herself, but now she is an advocate for all kids fighting this disease."
Megan lives in a small town, Coal City, where her dad is school superintendent. It's an hourlong trip with her parents to the Winfield hospital for treatment.
When Ellie Walters was diagnosed at 8 months old, her mom, Tara, Googled "rhabdomyosarcoma," came across a blog written by Megan's dad about the soft tissue cancer and exchanged emails. The families met in person at the Central DuPage clinic, where both girls happened to be getting chemo.
And Megan proved to be a selfless teen who has a special bond with young patients with the same disease.
"Ellie talks all the time about Meg," Walters said. "Meg's her best friend."
Megan showed up to Ellie's birthday party with a Disney gift card. And for her mom? Megan prepared her for what to expect from the treatment when the girl, now 3 and cancer-free for nearly a year, was too young to articulate the side effects.
"I appreciated Megan to be able to put a voice to what Ellie might be feeling physically with all the different drugs," the Wheaton mom said. "She wasn't even talking, much less - 'Ellie are you nauseous?' She doesn't even know what that means."
Another turning point in Megan becoming an advocate came when she developed a friendship through social media with Mia Miyamoto, a Kansas teen who had rhabdomyosarcoma.
"When Megan found out she had relapsed and that she was terminal, Megan was determined to go see her, so we drove to Topeka, Kansas, so Megan could meet Mia," Kent Bugg said.
Mia died two days later, Jan. 25, 2017.
"She made it clear when they met that she was going to fight and that she was going to fight for Mia and all these other kids," Kent Bugg said. "And I think when Mia passed away, that's probably the most upset I've ever seen Megan. That was tough, and since then, she's had a couple of other friends who passed away. And every time it happens and every time one of her friends relapses, I think her determination gets more and more focused."
Megan's advocacy
The results of Megan's determination? She's raised more than $100,000 through Lurie Children's Circle of Friends program to support ongoing childhood cancer research by Dr. David Walterhouse and his team.
"She is not afraid to call businesses and corporations and ask them to partner with her and let them know what she's doing," Kent Bugg said.
Megan, who will be a featured speaker at CureFest next month in Washington, D.C., also hasn't been afraid to meet with lawmakers to try to boost federal funding for cancer research. Printed on a long-sleeve shirt she helped design for Ivory Ella is "more than four," referring to the roughly 4 percent of federal cancer funding set aside for the study of childhood cancer, a well-cited statistic by groups such as the St. Baldrick's Foundation.
Megan helped design five other products for Ivory Ella, an online store donating 10 percent of gross sales to her Circle of Friends page for Walterhouse's research lab.
He has helped developed clinical trials for pediatric patients with Megan's cancer through the Children's Oncology Group. In his research lab in recent years, he's studying mechanisms that lead to drug resistance in rhabdomyosarcoma cells.
"She's so driven by it and so passionate about it, and certainly she's going through all of this herself," Walterhouse said. "And at the same time, she has this passion to really figure out the science behind everything and how are we going to make progress?"
'She's a miracle'
At Central DuPage, Trimble, the nurse practitioner, has been a second mom caring for Megan since her diagnosis. The roles were reversed when Trimble had breast cancer, and Megan visited with her during a chemo treatment.
"I have had other patients that I've had special bonds with. I've gone to weddings of patients that have gotten married," Trimble said. " ... But no, I have to say my bond with Megan is probably one of the most unique. And I pray every day for her, and I really think she's a miracle. She already is a miracle in so many ways."
Doctors continue to monitor a stable mass in Megan's chest near her aorta.
"It's not getting bigger. We're kind of watching it, and being hopeful," Trimble said. "I just feel though that if anyone is going to beat this stage 4 recurrent rhabdomyosarcoma it would be Megan."