July 2020

One Mother’s Heartbreak, Another Mother’s Hope: Local mom on a mission to find cures for childhood cancers

Author: Linda S. Hopkins | Photographer: M.KAT Photography

Sometimes our deepest pain serves as a launching pad for a higher purpose. Such is the case for Jessica Mugrage, whose devasting loss of her 16-year-old son Michael has set her on the warpath against childhood cancers. Her mission: to fulfill her son’s dying wish by searching for a cure and saving another child’s dreams.
According to Mugrage, she was just “a regular mom” before cancer came roaring into her life. “I knew nothing. I wasn’t ever thinking about cancer. Now, I know at least 12 kids in our area who have cancer, and there are probably more. Twenty percent of them will die within five years. Another 30 percent will not make it to age 30.”

The National Pediatric Cancer Foundation states the following facts: one in every 285 children will be diagnosed with cancer. Forty-three families per day will hear the devastating words, “Your child has cancer.” Cancer is the number one cause of death by disease among children; about 1,190 children under the age of 15 are expected to die from cancer in 2020. It’s time to take action.

Michael’s story
Michael Mugrage was born in Kauai, Hawaii and lived there 12 years before relocating to Bluffton. He was known for his great sense of humor (even during treatment) and for always flashing a Shaka—a hand gesture residents of Hawaii use to convey the Aloha spirit. It is a sign of friendship, compassion, and respect.

At age 15, Michael was a typical high school teenager. He liked playing Xbox, loved football, was looking forward to getting his driver’s license, and was taking classes to pursue a future career in law enforcement. But he was losing weight and complained of severe leg pain, abdominal pain, and headaches. Finding no definitive cause, his doctor dismissed the symptoms as growing pains.

Days later, Michael was in urgent care with a collapsed lung. Two hospital transfers via ambulance in a matter of hours and several tests later would bring devastating news: Michael had a large mass that doctors were confident was cancer, and he would need surgery for a biopsy. The result came back as high-risk (stage 4) alveolar rhabdomyosarcoma (ARMS), an aggressive soft tissue cancer with the majority of cases affecting children under the age of 18.

“Michael was at tough age—an age when children have dreams and when they are very aware of what’s going down,” Mugrage said. “They told us not to Google it.”

After diagnosis, Michael endured months of high-intensity chemotherapy treatments, surgery to remove the mass, and the lifetime maximum amount of radiation to his lung and abdomen. For a while, the treatment seemed to work, and Michael was counting down his remaining treatments with hopes of remission and returning to school.

“We thought Michael was going to be like a miracle, because he was so stubborn. He felt like if anybody was going to beat it, it would be him,” Mugrage said. “But the chemo was just to stabilize him and give him a chance to be alive in the event of a medical breakthrough. Part of me feared he wasn’t going to make it, but he was trying to reassure me that he would.”

Unfortunately, eight months into treatment the cancer returned with a vengeance, and Michael was given days to live. There are no current options when the standard protocol fails. Michael accepted his fate and asked to enroll in a trial to help other children, even after being told it would not help him.

“They were clear with Michael that the existing treatments would not help him,” Mugrage said. “But the doctor said, ‘If you want to go guns a-blazing, you might be able to help some other kid down the line.’ And that’s what Michael chose to do.”

An appointment was made in Atlanta, but his health deteriorated quickly, rendering Michael unable to travel for the trial. His dying wish was to leave a legacy of raising funds for pediatric cancer research, naming CURE Childhood Cancer, so that other children after him might have more effective treatments and hope for life. Michael passed away on August 28, 2018 at age 16.

The mission
Mugrage is not looking for sympathy by retelling her son’s story. As painful as it is for her to rehash his suffering, she has a much larger message to convey. “If no one talks about it, nothing’s going to change,” she said. “Nobody believes it can ever happen to them. It doesn’t matter how much money you have or what kind of car you drive … my big push is awareness. I think it needs to be an ongoing discussion in our community.”

Beyond her willingness to open the conversation, Mugrage is taking action per Michael’s directive. “Before Michael died, the teen social worker at the hospital had given him a will to fill out stating his final wishes,” Mugrage explained. “He said, ‘This is what I want you to do: you need to raise money for cancer research for kids.’”

He specifically wanted the money raised for CURE Childhood Cancer, an organization dedicated to conquering childhood cancer by funding targeted research, while supporting patients and their families. “The reason he chose CURE is because they come into the room the week your child is diagnosed. They are a non-profit, top-rated charity on Charity Navigator,” Mugrage said. “They invest over $4 million a year in pediatric cancer research.”

Through CURE, Mugrage has created a named fund, which offers a way for friends, family members, neighbors, colleagues, and others to commemorate Michael’s life and build a meaningful legacy. The primary purpose of the Michael’s Fund 4 a CURE is to fund pediatric cancer research through precision medicine, which brings personalized medicine and a second chance to children for whom the standard protocol is ineffective—children like Michael.

“Precision medicine entails genetic sampling and personalized medicine to target what went wrong and not just give them something they know isn’t going to work,” Mugrage explained. This approach will allow doctors and researchers to predict more accurately which treatment and prevention strategies for a particular disease will work in which groups of people. It is in contrast to a one-size-fits-all approach, in which disease treatment and prevention strategies are developed for the average person, with less consideration for the differences between individuals.

Making sense of the sadness
Mugrage does not believe Michael is here with her, although his memory remains top of mind. She is comforted by her faith, knowing that he is in heaven where he sees and knows no pain or suffering. So how does she make sense of her own suffering and that of Michael’s younger brother Matthew?

“Our scientific education and our spiritual beliefs don’t always match,” Mugrage said. “I take the facts of pediatric cancer, which usually has no known cause. It’s either environmental or it’s genetic. Most of the time, it’s a chromosome switch, and then the cells keep multiplying, which was most likely true in Michael’s case. So, can I make something out of his death? Yes!

“I’ve always been of the Christian faith. Being in grief therapy, you are reminded that God knows your first day and your last day and every day in between. What do I take from that? Not only did Michael suffer, but why did he have to suffer? Maybe we’ll raise enough money and help several kids survive. That’s the goal.
“Michael didn’t choose his path, but in the end, he chose to help others. It was very, very important to him. He basically said, ‘This is your purpose now.’

“I don’t want people to feel sorry for me. Let’s make a difference!”

For more information or to donate to Michael’s Fund 4 a CURE, please visit curechildhoodcancer.org/about-cure/named-funds/michaels-fund/. To find out how you can help locally or to speak to Mugrage personally, please email her at michaelsfund4acure@gmail.com. Follow on Facebook at michaelsfund4acure.

Paint a New Picture: Join the Fight to Save Lives
Prior to the outbreak of the Covid-19 pandemic, a Hawaiian-themed evening fundraiser, “Luau for Life,” was in the works to raise funds locally for CURE. While those plans are temporarily on hold, committee members are needed to help get it off the ground in the future. “This is going to be a casual and fun event for adults,” Mugrage said. “This is not about the grief part. This is the action part—something you can get involved in every year and be excited about.”

Meanwhile, the march continues towards awareness and other means of fundraising. By mid-July, Mugrage will have gold mailbox and wreath bows available for sale (gold is the color symbolizing childhood cancer), to display during September, which is Cancer Awareness Month. A link to purchase the bows ($25 each) will be posted on Mugrage’s Facebook page.

“We can talk about adult cancers, but people get incredibly uncomfortable talking about kids with cancer. Meanwhile, those kids don’t have a good outcome because they don’t get the funding for treatment,” Mugrage said. “Only 4 percent of federal government cancer research funding goes to study pediatric cancer, with 96 percent going to adult cancers.”

Please join in the effort to paint a new picture by donating and/or volunteering. “I can’t run a whole charity by myself. CURE is established, and we have a named fund honoring Michael,” Mugrage said. “This is 100 percent volunteer. I’m not benefiting financially from this. It’s just a life’s mission now.”

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