It’s the kind of whiplash every parent dreads. “He just had a weird rash,” Shane McFalls said in a phone interview, speaking of his 2-year-old son Soren. Shane, 35, thought it was probably nothing. Children have rashes. Shane’s wife Allie, also 35, decided to take Soren to the pediatrician just to be sure. “They were like, ‘No, you have to go to Dartmouth now,'” Shane recalls, referring to Dartmouth-Hitchcock Medical Center.
It was a Friday; On Monday, Soren received his first dose of chemo.
Soren McFalls was diagnosed with childhood leukemia in June 2020. He hasn’t had cancer since August, but the story doesn’t end there. He will continue to receive intermittent chemotherapy treatments until November 2023.
Shane, a professional videographer, documented the story in an eight-and-a-half-minute short titled “The Bravest People I Know”. It is the chronicle of a family’s struggle during the height of the COVID-19 pandemic and how their community was still able to rally and support them despite the hardships and isolation. Shane hopes families in similar situations might benefit from seeing his film, which is on Vimeo.
The first wave of chemotherapy is the most intense, Shane learned. Soren was immediately admitted to Dartmouth-Hitchcock for two weeks. For several months after that, Shane and Allie drove their son 90 minutes from their home in Newfane to the hospital as often as five days a week.
Shane is a filmmaker by trade and passion. “I’ve been doing video production pretty much since high school,” he said, laughing at his career path. “I made ski movies for a long time, and it turned into bank commercials.”
When not working on assignments for his job, Shane takes time for home movies. His Vimeo page is an assortment of ski videos, home projects and family trips edited with visual finesse and paired with lively musical accompaniment – “high home movies” as he calls them.
When Soren was diagnosed, Shane said, “The storyteller in me saw that something really important was going on.” He started shooting a video. Shane’s days were occupied with work, trips to the hospital, or parenting Teagan, Soren’s 5-year-old sister. At night he would review and edit what he had shot during the day. And he would deal with the grief that he and his family were experiencing.
“The Bravest People I Know” captures the ups and downs of Soren and his family’s journey. There are moments that are truly heartbreaking, like a sequence in which Allie, trying powerfully to hold back tears, cuts off the few hairs left on Soren’s head after the chemo wreaks havoc. The moment is split-screen juxtaposed with an earlier era of Soren playing with bubbles, his head full of flax curls.
Teagan narrates the film. In a conversation with her father, she defines being brave as doing “something you’re a little afraid of, but you do it anyway because you know it’s important, like stepping into [a] cave and not knowing what’s going to happen. ”
In voiceover, she presents a first part of the film: “It’s a dream that my father had when Soren was in the hospital.” The screen goes black before the sunny interiors of the McFalls house are replaced by a turbulent sea of paper and fabric.
A small doll, bespectacled like Soren, cruises the tumultuous waves in a small dinghy, with a miniature version of her cat, Fleetwood, by her side. During the stormy night, a helicopter flies over the sky and pours a rain of glistening golden liquid into the murky waters. The storm clears, the waters calm down and the shooting stars pass through the now serene night sky.
Shane often thinks about this dream. Some elements are recognizable from the literal: Soren’s room was located next to the Dartmouth-Hitchcock helipad. The liquid discharged from the helicopter looks a lot like what Shane affectionately called “the life-saving poison” the medics infused into Soren’s body. But, over time, Shane developed a metaphorical reading of his dream: that the gold poured in front of Soren on this dangerous road is the compassion nurses and oncologists have shown him.
The McFalls family were not alone in their trial. Even though COVID-19 has forced physical distancing, friends and relatives have found ways to provide support. Shane’s dad held a fundraiser where people bet on how many miles he could cycle in 24 hours (final count: 152.58). Others gave food, gifts and even lawn care. Shane’s sister has set up a GoFundMe campaign. At the time of this writing, he had raised $ 93,835.
Luckily, Soren’s medical bills – which Shane described as “bizarre” – are covered by Vermont’s Dr. Dynasaur program through Green Mountain Care. But expenses are piling up anyway. Allie immediately quit her job when Soren was diagnosed, but the couple’s mortgage and other bills didn’t take a similar break. In addition, there were the costs associated with traveling to the hospital with such frequency.
Shane and Allie said they were “overwhelmed” by the support people have shown them. Even though they are still dealing with their own crisis, the couple are determined to give back.
“I had never donated to GoFundMe, especially to people I didn’t know, before this,” Shane said. “But now I can’t do not donate if I see some kind of cancer in a child or something like that. ”
A crucial point for Shane to remember is the importance of donating blood. He described Soren’s transfusions as “magical moments” – strangers giving themselves so that his son could survive. “Seeing this at a time when people are so polarized and there is so much tension in the world,” he said, “it was a very beautiful reminder of humanity”.
Shane is also a blood donor now, and he has to donate bone marrow and platelets as well. If Soren’s story can inspire anything in the community at large, he hopes it’s this: “Getting into this system is super important. ”