Pas de Deux

Mona Sewell wants to climb up on that pony. It’s a miniature pony, more accessible than a regular-sized horse for the seven-year-old, who is small for her age—a trait inherited from her parents, petite physical powerhouses Sally Rousse and James Sewell, the forces behind Minneapolis-based James Sewell Ballet. Mona turns away from the pony and clings to her father, climbing up his side like a monkey and wrapping herself around his neck and chest.

Her two-year-old brother, Oliver, reaches for the shaggy, brown-and-white horse and squeals as his father sets him on its back. Oliver’s chubby legs, which aren’t long enough to curve around the pony’s belly, stick out straight at the sides. The pony shifts its weight and starts to amble toward a patch of clover. “James!” cries Rousse. “Hold Oliver!”

That sparks Mona’s protective older-sister instincts, and she consents to being placed behind Oliver so she can hold on tight to her chortling brother. “Well, I’m finally on the horse,” she says. The cartoon-covered Band-Aid on her forearm—a souvenir from blood tests she had at Children’s Hospital–Minneapolis that morning—starts to peel back from her skin. Frowning, she reaches around Oliver and pats the Band-Aid back down.

“You’re very brave,” her father says to her.

“Mona, see the baby pony down in the pasture?” asks a friend. But Mona probably can’t.

In May 2003, when Mona was four years old, she was diagnosed with cancer. Doctors found three low-grade tumors on her optic nerves that are inoperable because of their location and their spidery, amorphous shapes. Surgery and radiation could harm other brain tissue, so rounds of chemotherapy are used to keep the tumors in check and damage to a minimum. “We’re looking at some vision loss now,” says Rousse. “But in brain surgery, they’d be touching on things that ought not to be touched. We could be talking about bigger losses: processing, cognitive stuff, speech, thinking. Just imagining it drives me crazy.”

The tumors dim Mona’s vision and render it indistinct. Reading is challenging and schoolwork frustrating and difficult. “Imagine squinting your eyes and your eyelashes making everything blurry, and then seeing only a severe darkness and blurriness after a few feet,” says Rousse. “That’s how doctors have described it to me.” But Mona has vision enough to enjoy this visit to an orchard and pony farm, to wave a strip of newly acquired Barbie stickers at her mother in delight, and to take ballet classes this summer. “I like dance, but not in summer,” she says. “My mom is making me.”

Mona’s diagnosis devastated her parents, who had been married ten years and were newly pregnant with Oliver at the time. Rousse temporarily stopped dancing—a move that for some dancers could be career-ending—because she was pregnant, but it also allowed her time to stay by Mona’s side during doctor appointments and weekly chemotherapy treatments at the hospital. Sewell shared chemo duty, as well, and both of them relentlessly researched the disease and its alternative treatments, launched a website to keep friends and family apprised of Mona’s condition, and worked hard to make life seem as normal as possible for her.

Still, no matter how many toys and cozy blankets are stocked in the hospital room and no matter how kind the nurses are, chemo just doesn’t feel good. Rousse has worked out routines so that Mona can feel as if she has some power. On one hospital visit, she says to Mona, “You tell the nurse when it’s OK to do the needle stick.” Rousse looks like a miniature fairy princess, and the nurse thinks she can be swayed.

That is a mistake.