Everyone brings with them their own reasons when choosing a cause to champion. When they visited St. Jude Children’s Research Hospital in January, Sarah Emerson and Andrew Hohenstein brought along grief and triumph, compassion and memories. They are two of 13 St. Jude Heroes® running in the upcoming Boston Marathon, the largest group of St. Jude Heroes to ever run in the race.
St. Jude Heroes fundraise for St. Jude while training for their race as part of a nationwide alliance against childhood cancer. They help ensure that families never receive a bill from St. Jude for treatment, travel, housing or food — because all a family should worry about is helping their child live.
Andrew doesn’t particularly like to run. “But sometimes,” he said, “you have to step outside your comfort zone.”
It’s clear on this crisp January afternoon in the Danny and Rose Marie Thomas Memorial Garden on the St. Jude campus that Andrew is out of his comfort zone. He chokes up repeatedly, stopping the conversation, as he tells the story of his 6-year-old son’s best friend who passed away last year after a short battle with a very aggressive brain tumor.
Devin was not a St. Jude patient, but Andrew recognizes the importance of St. Jude freely sharing its discoveries in the fight against childhood cancer and says that the information he and a small army of friends gleaned from St. Jude was invaluable.
“One of the best information resources we had was St. Jude,” he said. “Everything else was just us Googling our brains out, a team of us trying to figure things out and then give it to Devin’s parents.”
Though running may not be his favorite pastime, the vision of St. Jude founder Danny Thomas was too strong a pull for Andrew to not participate in Boston, and his tour of the hospital that January day reinforced Andrew’s commitment.
Even beyond the finances, it doesn’t feel like a hospital as much in there. I spent a lot of time in hospitals and hospitals aren’t fun — they look like hospitals, they smell like hospitals — but St. Jude is colorful and kids, I would hope, probably still get to be a little bit of a kid in that building instead of just a place they go to get needles stuck in them.
For Andrew, 36, the marathon has become a metaphor for the struggles kids with cancer must go through, and he explains the challenge to his son as a way to keep Devin’s memory alive. It’s a difficult thing to explain to a 6-year-old, but he wants him to know that the fight doesn’t end just because his friend lost his battle. “We have to keep fighting for him because there are other kids like him who are still fighting,” Andrew said.
Come race time, Andrew will be lining up with Devin’s mother and a crowd of supporters. He knows it will be an emotionally raw, yet spiritual day. “I signed up to get on this team and it was going to be a surprise to Devin and his mom,” he said. “Devin died the day before I found out I was on the team, so I never got to tell him.”
Andrew knows he won’t win the race. But he knows that, through perseverance and fundraising, St. Jude will continue to lead the way the world understands, treats and defeats childhood cancer and other life-threatening diseases.
Thirteen St. Jude Heroes are running in the Boston Marathon in 2018, the largest group ever to run in that race.
When Sarah laces up her shoes and slips on her St. Jude Heroes bib for the Boston Marathon, it will be a sort of celebration. “I was getting ready to start training for the next St. Jude Memphis Marathon® when I was diagnosed with cancer on March 8, 2017.”
The diagnosis was a devastating blow, of course, yet it served to refocus her perspective. Her anxiety was eased knowing that breast cancer is so well researched and that so much is known about how to treat it.
The kind I had, there’s a cure and a treatment that is known and works, so I was like, ‘18 months of my life is going to suck, but we’re going to get through it and move on. But here, some of these kids have rare diseases and we don’t know what’s going to work, what’s not going to work. It’s great that St. Jude allows doctors to come here and research and find cures and not spend their time writing grants. Their sole focus is to find that cure and not finding money to find that cure.
It’s been an uphill battle, but Sarah, 34, says the Boston Marathon is her dream to run. And though the thought of fundraising can be daunting, Sarah said, “I don’t want to put off doing things that I really want to do for the right time or the perfect time, so I’m just going to go for it.”
“Going for it” meant running only a mile at a time last summer when that was all she could do. After her last round of chemotherapy in August and surgery in September, she did strength work when her lungs would burn from the medicine. By mid-October, she started building back up. “It’s a slow road, but it’s a forward progress. I just had to have hope that there are better days ahead of me and that just kept me moving.”
While touring St. Jude in January 2018, she found inspiration at every turn, stopping to talk with a young patient and comparing their respective medicine ports. “We have to stick together,” she told him.
And then there was Chandler, a teenage patient who finished the half marathon at last year’s St. Jude Memphis Marathon Weekend, and said he got through it because he’s been through much tougher days.
“I started crying because I remember lying on my couch last summer begging for the day I could run again, begging for that hurt of running and the pain and the tiredness of running,” she said. “So when I run, it’s what I’ve been dreaming about — to put one foot in front of the other and do what I love to do again.”
As she counts off the miles in Boston, she’ll do so to instill hope in the families going through what her family went through last year, and that they may have the same outcome. “My mission is to raise money for the research so we can find cures so that those families can have that same news delivered to them."