In the comforting haven of The Samaritan Center at Voorhees, a group of longtime online gaming friends met in person for the first time when it mattered most.
Joseph Manghan IV got the news that would change the course of his young life just seven hours before he was to walk for graduation with his classmates from the Pennsauken High School Class of 2014.
While his fellow graduates started college, landed their first full-time jobs, or reported for military service, Joe’s new reality became surviving the devastating diagnosis of Ewing’s Sarcoma – a rare cancer affecting 225 U.S. children and teens each year. * Joe’s aggressive form of Ewing’s beginning in his kidney was even rarer, with 100 diagnoses globally each year.
Soon after his diagnosis, Joe’s family endured another blow – the death of his father, Joseph Manghan III. His mother, Susann Simpson, rallied the ranks of Joe’s remaining family – her son Zachary; her fiancé Christopher Matusieski and his children; and Joe’s grandparents, aunts, cousins, nieces and nephews – to support him in the grueling struggle ahead, with extra morale-building from Joe’s beloved pet, Maggie von Mooster the Pug.
Over the next four years, Joe fought three recurrences of the disease. He lost a kidney and became a paraplegic as he endured unrelenting pain, 28 rounds of chemo, two rounds of radiation, and countless procedures and hospitalizations.
Through it all, says mother Susann, Joe kept a positive attitude and “never backed down from a proposed treatment that would allow him to live.”
His lifeline to the outside world remained a close group of video gaming friends that Joe had first met online in 8th grade – a group Susann dubbed his “bonus band of brothers.”
Though they had never met in person, says Susann, Joe’s gaming community became his only social outlet that wasn’t medical personnel or family. “These friends met where he was – online. They offered him the possibility for normal days above the abnormal reality he was living.”
Initially, the eight friends used voice chat to help them communicate game strategy. “But even when we weren’t playing,” shared Nick Werden, an eight-year group member from Connecticut, “we were talking and sharing. Several years ago, we became concerned when Joe disappeared from the chat for several days. When he came back, he shared with us what was going on medically.”
The group was inspired by Joe’s fight. They were determined to be there for him when he needed to talk, but also to honor his desire to keep their interactions as stress-free as possible — a non-medical haven and outlet.
When Joe left his Pennsauken home on April 24, 2018 for an MRI, he and his family had no way of knowing that he would never again return there. Following a stint in two rehab centers and hospitalization at three area hospitals in August, doctors shared that they were out of options with the exception of one experimental treatment not yet approved by the FDA.
Joe faced a difficult decision: keep fighting with a drug that promised a high level of dignity-damaging side effects, and low prospect of cure — or consider his doctor’s proposal of Samaritan’s hospice care.
“The decision was his,” says Susann. Explaining the tough choice between ‘giving up,’ and ‘giving up futile treatments,’ Susann said, “I told him how proud I was of him. It takes a lot of guts to stare death in the face, to say ‘I know you’re coming and I’m ready.’ I told him that he was going to dictate, he was going to be in control.”
Joe chose to spend the remaining months of his life in the home-like setting of The Samaritan Center at Voorhees rather than a nursing home – a decision he and his family never regretted. There, he could have his family with him round-the-clock, and could focus on achieving relief from his pain. There, he could spend his time making memories and creating a legacy for his family to cherish after he was gone.
Once he settled into The Samaritan Center on August 23, Joe mentioned two goals that would mean the world to him: to experience time outside – a luxury he hadn’t been able to enjoy since April 24th – and to somehow get to meet his online friends in person.
Samaritan’s staff set the wheels in motion – literally – to make his first wish a reality. Unbeknownst to Joe, his friends were in touch with Susann to arrange visits from four states and two countries. Friend Nick said, “I told Joe that as soon as he was settled somewhere, I would find a way to visit. Joe has been such a huge part of my life for so many years. If I didn’t get to see him in time, I wouldn’t forgive myself.”
The stars aligned on a sunny Saturday, September 1. Samaritan staff carefully transferred Joe to a gurney and wheeled him to the outdoor courtyard. As Joe gratefully relished the flowers, trees, and feel of the sun and fresh air, another surprise awaited him. Susann brought a young “stranger,” who had been waiting for his cue, to Joe’s side.
“I’d had a haircut and grown a beard,” says Nick, “so at first he didn’t recognize me.” But then, Susann suggested that Joe “close your eyes; just listen to the voice.” It took him a moment, says Nick, “but watching that realization come over his face is something that I’ll never forget!”
Meanwhile, other members of the group were organizing a logistically complicated pilgrimage to meet and support their friend. Liam and David traveled from Eastern Canada, and Josh from Oklahoma, to rendezvous with Doug in Akron, Ohio. Together, on September 22, they began a 9.5-hour drive to Voorhees, stopping along the way to pick up Wyatt in Harrisburg.
After ordering takeout cheesesteaks – “after all, you don’t visit this area without tasting cheesesteaks!” – Susann left the friends alone for “guy time.” Susann was stunned the following morning to see her phone “exploding” with messages after an online post by friend David had gone viral overnight becoming a trending topic on Reddit. The interest and outpouring generated by the post prompted a young reporter, himself an online gamer, to visit and interview Joe for a story shared worldwide.
This turn of events became an unexpected gift for Joe who had been struggling with issues of legacy and impact. Susann explained, “When you’re 23 and facing the end of your life, the question of legacy, of whether you’ve had time to make an impact, takes on added importance.”
Joe’s sharing his gaming story inspired others to reach out to friends previously only known online; it encouraged strangers to reach out to him with encouragement and support. And by sharing his choice to make the most of his time left with inpatient hospice care, says Susann, he helped shine a light on the many families who are coping with similar decisions related to serious illness.
“This is how you have impact,” she told him. “Despite hardships, there are so many beautiful things that happen along the way. There are so many angels on earth, good people around us to make the unbearable bearable and help us through the hardest moments.”
Susann counts the Samaritan staff among these angels. They continued to care for Joe on his terms, supporting him in the things that mattered most to him and his family, until his October 7, 2018 passing.
In his obituary, Susann wrote of her beloved son, a Gentle Giant “whose compassion, generosity, tender heart, and genuine appreciation of kindness drew people from all walks of life to him.” She took comfort in his “perfect death – surrounded by those he loved and loved him…He did not suffer. He’s at peace. He is no longer held back by a failing body. He is free.”
*Cancer.net, 1/18