By Brandon LaChance
The way we process death or how we will deal, react to our lives ending is different with every person.
Megan Bugg fought, battled, and advocated for her life and for the lives of many others with every breath she had until her final exhale at 7:45 a.m. on March 9.
“When we say Megan never complained or never asked, ‘Why me?’, I feel people think we’re exaggerating,” said Bugg’s mother Debbie Bugg. “But I’m telling you, not once in the 7 years and 3 months did she ever say that. She didn’t complain. She didn’t cry and say she was in pain. It was crazy. It was almost like she was sent here for that purpose and she understood her role.
“As her parents, we weren’t the ones who were strong. It was because Megan was so strong and didn’t complain. We just went on as normal. It wasn’t her trying to pep her up. She didn’t want that. It was business as usual. We were going to get through it and everything we had to door went through was part of the process. She always thought she would beat it; even through the end.”
Megan, who passed away a little over a month away from her 21st birthday on April 30, was diagnosed with a children’s muscular cancer called ARMS – Alveolar Rhabdomyosarcoma – when she was 13-years old in 2014.
Through her 87-month fight for life, she underwent five relapses, nine surgeries, 150 weeks of chemotherapy, and 200 radiation treatments.
“We saw a bump on her left forearm on Christmas Day in 2014. It was Christmas Day and we didn’t want to make a big deal of it, so we kind of let it go,” said Bugg’s father, Kent Bugg. “But, I could tell by the look in her eyes that she knew something was wrong. She was 13, she was scared, her body didn’t feel right, and she was scared to say anything. We took her to the pediatrician the next morning. After the pediatrician checked her, he took me into the next room and said, ‘I’m sure your daughter has some type of cancer; I don’t know what type. That was devastating and Megan was scared to death.
“We jumped in the car and went straight to (Northwestern Medicine) Central DuPage Hospital, where the pediatrician recommended us to go. After a lot of scans – MRI, CT, bone marrow tests – where she was poked, prodded, and scanned every which way for five days, they finally diagnosed her on Dec. 30 with Stage 4 Alveolar Rhabdomyosarcoma.”
From the start, Megan stayed positive and demonstrated her never quit attitude she continued to display with action until her final day.
“Your family unit has to be very strong because the old saying, ‘When one person in the family has cancer, everyone in the family has cancer’ is very true,” Kent Bugg said. “It impacted all of us. Mackenzie, my older daughter, was a sophomore at the time and was involved in basketball, softball, volleyball, madrigals, music theater, and speech. It was really tough on her.
“Debbie and I had to all of a sudden figure out how were we going to work, how were we going to make a living, how were we going to make ends meet, and how do we get Megan to her treatments and back. She would tell us all the time, ‘Everyday may not be good, but there is good in every day.”
Through Megan’s strength and not wanting her family to change their lives because of her, the Buggs, of Coal City, did exactly that.
Debbie, who recently retired after almost 35 years as a physical education and health teacher at Reed-Custer High School, stayed in the gym and the classroom. Mackenzie stayed on the volleyball court, at the softball mound, performing in plays, and then went to the University of Wisconsin to study speech pathology and is now a graduate student.
Kent is retiring on June 30 after 17 years as the Coal City school district superintendent, which followed six years at Reed-Custer as a social studies teacher and baseball and basketball coach (where he met Debbie) and five years at Gardner-South Wilmington High School. They stayed on flight with Megan’s blessing.
“I remember in the first year of her treatment. People were telling me to stay home with her because you don’t know what day is going to be her last,” said Debbie Bugg. “My husband and I met with Dr. David Walterhouse, who at that point was doing research in Chicago, and I asked him if I should quit work. He asked me, ‘Do you like work?’ When I said, ‘Yes, I like teaching’ and gave him another yes when he asked me if Megan knew I liked work, he said he found that kids do much better when their parents continue to do things that they would normally do. It’s because as soon as you stop, they think they’re dying.
“We just kept living and I think that’s one of the things that helped her. We didn’t stop. Mackenzie didn’t stop going to school and wait here for her to die. We just kept on moving like she was going to make it. I think that helped her. It helped me as a parent also. When you’re going through a 7-year battle, if I was to stay home with her and to be Megan’s mom 24/7, I may have had a much harder time with it. But going to school and being Mrs. Bugg and wearing a different hat for eight hours a day was really healthy for me mentally. It gave me another focus.”
Megan’s blessings also traveled outside of her family.
Without being able to go to school because a cold or flu could have taken her life sooner, Megan went the social media route to find friends and social groups. She connected with others who had childhood cancer and could relate to what she was going through from California to New York and most states in the middle as well as friends in England and Australia.
When some of her friends began to succumb to their cancers, she became an advocate and pushed for more funding for childhood cancer.
Megan Bugg sent letters to every state and federal legislator and had meetings with Dick Durbin, Adam Kinzinger, Sue Rezin, and David Walter. She also went to Cure Fest in Washington D.C. and spoke in front of the United States Capitol.
She worked with Dr. Charles Keller, who is a co-founder of the Children’s Cancer Therapy Development Institute where the mission is to make all childhood cancer universally survivable.
“Megan above all things loved life. She wanted to stay on this world and she had a great deal of empathy for others who were going through the same thing,” said Dr. Keller. “She spent a lot of her own time to try to help find a cure. The childhood muscle cancer she had is not curable when it spreads. “She worked with some fabulous researchers in Chicago. She eventually came to work with us. The first thing we did, because she was so interested to find new treatments, was we embedded her as a Citizen Scientist. She was a member of the lab.
“The first thing she did to help with childhood cancer research is she raised $200,000 to test a drug (Entinostat) that we had got into clinical trials with new chemotherapies so that we could design a clinical trial across North America. The second thing that we did was we created the Citizen Scientist Project, which tested drugs that would have the availability because they were being used for other things or new drugs so that we could build quickly – medicines attached to antibodies.
“When she got that rolling – we hired two scientists on the account of Megan – she asked, ‘What else do you have?’ I told her Immunotherapy has not worked for Rhabdomyosarcoma, but we have a new approach. She went and built a Rhabdomysarcoma Immuno-therapy project. We hired yet another scientist for that project.”
In her actions to help not only herself but every other child in her same position, Bugg raised $1.2 million toward Rhabdomyosarcoma research. The project Bugg and Dr. Keller were working on until her passing was the Megan Bugg Global Rhabdomyosar-coma Research Lab where Megan wanted to share her vision of everyone working together, doing the right thing, and saving lives.
Although Megan can no longer help gain the funds and share awareness – such as 12 drugs being FDA approved for adults every year and 12 drugs being approved for children since 1978 – she has inspired others to continue the fight against childhood cancer.
The Megan Bugg Research Lab had set a goal of $500,000 and has received $332,677. As an Angel Birthday gift for Bugg’s 21st Birthday on April 30, the family and scientists who befriended Megan hope to reach the goal.
“It has been awful losing Megan, but I think it would be more awful for those parents that have policemen come to their door and say, ‘Sorry, but your kid was just in an accident.’ We had time to prepare,” said Debbie Bugg, as a cardinal landed in a nearby tree as she was speaking for the story. “We had time to live every day so there weren’t any regrets.
“I really feel like I don’t have any. We were almost given that as a gift. We didn’t know when her last day was going to be, so we were always aware. We may have lived more fully in those last seven years than we had before. It was a gift, absolutely.”
Kent Bugg documented Megan’s determination on a blog, Megan Bugg’s Journey, there is a Facebook page called Team Megan Bugg, and Megan’s message can be viewed on YouTube at https://youtu.be/8tUIBIPLAao.
The Grundy Area Vocational Center and the Coal City Soccer Club are selling T-shirts. Teresa Chapman is taking orders through April 12 for her Nothing Bundt Cakes sale, which will donate $1.25 of each $5 cake to CCTDI, Blissful Bites By B raised $2,500 with a bake sale, and there will be a memorial golf outing July 23 at Nettle Creek Country Club in Morris.
Brandon LaChance is a journalist with The Paper. He can be reached at 815-876-7841, firstname.lastname@example.org, or on Twitter @LaChanceWriter.