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READ MOREPublished on February 16, 2023 in Glioblastoma, Advocacy, Advocate
Nearly one year after losing his mom to glioblastoma (GBM), Shawn joined his brother and father in D.C. for Head to the Hill 2019. Their experience would prove to be powerful and energizing for their grieving family.
“Attending Head to the Hill our first year was all about sharing my mom’s story after she passed away,” Shawn explained. “We had to do something about the loss we felt, and we had to tell people about her. We also wanted to be a part of building a better future for other GBM patients.”
Shawn’s mom, Wendy, started experiencing a persistent headache in March 2018 that lasted weeks. An ER trip resulted in medication for a sinus infection. When her headache still had not improved, they returned to the hospital, but the ER staff sent her back home. Shawn’s father, Ken, took Wendy to a different hospital when she could not stop vomiting. An MRI uncovered a mass in her brain.
“After her craniotomy, the surgeon pulled us into this tiny room,” Shawn said. “I will remember this night forever because this soft-spoken, gentle neurosurgeon said it’s glioblastoma. In our family history, we have zero cancer across the spectrum of cancers, and we had no idea what to think or do. It rocked our world.”
Wendy went home to recover and started chemo about three weeks later. After six days of chemo and one day of radiation, she took a considerable decline and began uncontrollably seizing. Wendy’s family rushed her to the hospital, where they intubated her — less than one month after finding the brain tumor.
“It was evident there was nothing more we could do,” Shawn said. “The cancer had progressed too much. She was in hospice care for the final week, and we stayed in the room with her until she passed. It was unimaginable. I was 25 at the time, and my mom was 47. It was a gut punch for all three of us. We just tried to pick up the pieces of our life after that.”
Shawn discovered the National Brain Tumor Society near the end of 2018. At the time, he was angry beyond belief and wanted to do something to make a difference.
“We’re very protective of our family, so if you come after one of us, you’re coming after all of us,” Shawn explained. “At this point, the enemy was GBM, and we were going to do everything in our power to do something about it.”
When Shawn stumbled across Head to the Hill online, he realized the 2019 event would be the week of the one-year anniversary of his mom’s craniotomy. Shawn, his brother Troy, and his dad jumped at the opportunity to turn their grief into action.
“We were working through clouds of grief,” Shawn shared. “I was scouring the web for resources, and then — almost like the shining beacon on the hill — I found NBTS. They offered this event where all you have to do is bring yourself and your story.”
Shawn made the five-hour drive to D.C. with his brother and father to attend Head to the Hill in May 2019.
“We were three sheepish guys who had no idea what to expect,” Shawn said. “We walked into the big ballroom and sat at our table with a couple of advocates from New York. We shared our story with them, and I remember the woman saying, ‘I get it.’ A weight just lifted off of my shoulders. It hit me that we’re in a room full of people across the country and all spectrums of life, but we all share this one thing in common. What NBTS does goes beyond advocacy work — they’re bringing the community together.”
In addition to learning about the issues facing the brain tumor community and urging their policymakers to take action, Shawn connected with other brain tumor advocates.
“I felt like I was home for the first time since my mom passed,” Shawn explained. “To share that connection with people who went from strangers to instantly connected was incredible. We’re a part of their lives now, and there is nothing else that you can compare it to. You’re not a stranger for very long in this community.”
Shawn admits that the day of training at Head to the Hill was difficult at first yet empowering.
“Throughout the entire training, they made one thing clear — your story matters,” Shawn said. “You are the one driving the conversation. The representative or staff member is there to meet with you. It is your right as an American citizen to go into their office, share your heart and your story, and motivate them to do something about it.”
Despite his nerves, Shawn kept reminding himself that he is the expert on his mother’s story.
“Confidently stand in your power and deliver your story,” Shawn said. “Your story is making a difference and motivating people to make a change. Two people with a GBM connection can have vastly different experiences, which is the reality of brain tumors. I’m the expert on my mom’s story. It’s OK to feel anxious and experience a range of emotions from nervous to excited to sad. It’s a vulnerable position to put yourself in, but together we are pushing forward to a future where people like my mom don’t have to face this diagnosis.”
NBTS’s training on sharing one’s story and the opportunities to practice sharing stories throughout the day helped ease Shawn’s worries and equip him for the day ahead.
“We practiced one-on-one with each other at the table,” Shawn said. “Throughout the day, we’re building these relationships, sharing stories, and encouraging each other. By the end of the day, you felt ready.”
The in-person training also covers the critical issues for discussion in these meetings. Participants receive their meeting schedule, copies of the issue briefs — documents highlighting NBTS’s policy asks — to leave behind at each meeting, and their Head to the Hill t-shirt and materials.
Day two of Head to the Hill began with a bus taking participants to the cluster of federal buildings near the Capitol.
“I just remember walking up, and the Capitol is on my left, the Supreme Court is on my right, with the White House somewhere close,” Shawn said. “Two-thirds of our federal government system is within arm’s length of me, and I’m walking up this hill to share my mom’s story. We took a photo on the steps of the Capitol in green shirts, and I just couldn’t believe I was there.”
As part of the New York delegation that day, Shawn met with his state’s two senators and his representative in their office buildings near the Capitol to discuss the urgent, unmet needs of the brain tumor community.
“In one of our meetings, three out of the five advocates lost a mother to a brain tumor,” Shawn shared. “It was really empowering to share that moment with the U.S. Representative and connect on that level to show there are constituents in his district who are very motivated on this topic.”
After four years of participating in Head to the Hill meetings, policymakers and their staff now remember Shawn.
“A chief of staff in Congress knows my name and my story,” Shawn said. “It’s the most motivating and heart-lifting thing that you can do. It certainly helped me in my grief journey.”
Not only does Head to the Hill connect advocates with other members of the brain tumor community, but it gives participants the opportunity to make a real impact.
“In our first Head to the Hill, one of the bills we were advocating for was about palliative care and hospice education,” Shawn said. “My mom spent her final days in hospice. I shared my mom’s story and directly connected it to the need for this bill in the Capitol Hill meetings, which later passed in the House. It speaks to the power of advocacy and the platform NBTS gives us as a community.”
Knowing that he is doing everything possible to defeat glioblastoma comforts Shawn.
“I hope my mom would be proud of our work,” Shawn said. “Everything I do in this life is for her because she was robbed of a future at 47.”
Participating in events like Head to the Hill brings the community together to realize breakthroughs ahead.
“Without that experience, I can confidently say that my life would not be the same,” Shawn said. “We come back to do Head to the Hill year after year because of the connections we’ve made. I’m forever grateful and look forward to it every year.”
TAGGED WITH: glioblastoma, advocacy, brain tumor community, Head to the Hill, #GBMDay