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Type of Sarcoma: Epithelioid Sarcoma
While it’s too simplistic to summarize a person in only a few words, an apt introduction to Bo (Robert) Arvin would be: Hilarious. Fun. Chocolate donuts and ice cream.
Who wouldn’t love that?
The more we learn about Bo, the more we would have liked to know him. Bo died of epithelioid sarcoma cancer a little over a year ago in October 2018. He was 27.
Bo always loved chocolate donuts and ice cream, and when he was ill his diet consisted of a dozen donuts a day and all sorts of ice cream concoctions. In fact, Bo’s family now celebrates his birthday by handing out twenty-five dozen chocolate donuts around their hometown of Carlyle, Illinois in his honor. This year they even had t-shirts printed. They read: BoNut Day.
Bo’s mom, Joann Sugg, describes him as hilarious, witty, and creative. He liked to push the en-velope with his humor, tap dancing on the edge of social acceptability or just acting plain weird. They say laughter is a gift, and Bo was incredibly generous with his gifts. He was one of those memorable people who can talk to anyone about anything (especially video games and movies!). Joann sums it up well: “Bo was a good kid, and a fun kid.”
When Bo was six months old his parents noticed a growth similar to a birthmark or mole, which started changing when Bo reached seven years old. The growth was identified as a skin cancer that didn’t require treatment. But at age fifteen Bo was diagnosed with non-Hodgkins lymphoma. Initial treatments worked well, but a relapse within the year led to an onslaught of chemotherapy, stem cell transplant, 35 radiation treatments—and left him with a 95% chance of get-ting leukemia. His family knew the odds and were prepared to tackle leukemia in the future.
In 2018 Bo and his family celebrated a big milestone: ten years cancer-free. By that time, he had moved away from home and was living in Colorado Springs with friends, working at a job he loved as a warehouse manager for the Air Force Academy. But secretly, Bo had found a lump, which eventually forced him to the emergency room. After an unsuccessful surgery, his medical team diagnosed Bo with sarcoma cancer. His family was well-versed in lymphoma and the anticipated leukemia, but they were surprised that sarcoma wasn’t in their cancer vocabulary. Doctors told his family there were no treatments and no cure, and estimated that Bo would survive somewhere between six and nine months.
Bo and his family were fortunate to receive an outpouring of support during those extremely difficult months. The morning Joann called the town’s school principal to share the news of Bo’s prognosis, the entire study body arrived by noon to say their goodbyes. When Bo couldn’t serve as best man at his friend’s wedding because he was too ill, the couple married at his bedside. Joann says that Bo’s close band of guy friends from high school flocked to Bo’s side and helped carry the family through.
In those last months as the tumors grew uncontrollably, Joann (who happens to be a hospice nurse) focused on managing Bo’s pain, while his sisters performed a variety of daily care duties for their brother. Joann explains, “They were there to answer his every call whether it be getting chocolate donuts, specific ice cream preparations, assisting with meds… bathing, catheter and colostomy care, changing his bandages (which became a multi-person task). You cannot grasp the amount of care they provided him without seeing and knowing the destruction and grotesqueness of the tumor which ravaged his body. And they did it with love and compassion. I am so incredibly proud of them.”
Throughout his journey, Bo remained strong and tried to protect others from pain. He personally told each of his loved ones about his diagnosis, but could not bear to tell his beloved youngest sister, Grace. He also cared deeply for his friends. He asked his mom to record and handwrite a letter to each friend, to be delivered after he passed. And every day Bo would ask Joann what her blessing was that day and what would it be tomorrow. He would tell her, “You gotta find that blessing, Mom.”
Rein in Sarcoma honors Bo and his family, and will welcome Joann Sugg and her daughter, Grace, at the 2020 Winter Gathering. Grace will share the story of her incredible efforts to raise money to build sarcoma awareness and continue research towards a cure in honor of her brother. Please join us in remembering Bo and recognizing Grace on January 26.