Pas de Deux

“Everyone has a road map of their future in their mind,” says Sewell. “It doesn’t include things like this, like finding out your child has cancer. That’s a shock. But once you make the emotional shift, once you make it through that shock and you redraw your road map, you find a way through it. Artists process what is going on around them. In that way, one person can help many more. Art helps us move on, helps us understand what happens to us.” Even when it’s as incomprehensible as a child with cancer.

“Doing chemo at home is not what we wanted to do,” says Rousse. “We do not want to be the doctors who give her drugs. We want to be the supportive parents who do not hurt her. I especially wanted to do that, because with taking care of David, I had to be the nurse and give the shots. I didn’t want to do that with Mona. But last May, we were so sick of the hospital, we just decided we would do it at home. This is our disease as a family. It just happens to be in Mona’s head.

“Every day I worry, ‘Am I doing everything I can for Mona?’ I take chunks of time off from dancing to stay with the kids. There have been periods when all I’ve done is research, contacting our doctor friends here, my friends in Harvard Medical School, my brother who’s a doctor, people in Europe, pushed the doctors, telling them, ‘If you hear of something working in Germany, we’ll go!’ But I’m just not like Susan Sarandon in Lorenzo’s Oil, and I feel terrible about that. I’m trying to keep her educated, help her to keep up with her classmates, take her to the tutor, go over reading and word lists with her every week if she lets me. I help foster a different kind of reading for her, describing things in a metaphorical way. I sometimes feel that she should look at everything and describe it so she makes memories. I want to say, ‘Hold onto that memory, Mona, so if you can’t see anymore and I say ‘yellow,’ you’ll know exactly what I mean.”

The little girl rearranging plastic alphabet letters with her toddler brother on the polished wood floor of the family’s kitchen doesn’t look particularly frail. Her hair has grown back from her early chemo and is shoulder-length now. It takes a close look to see that her beautiful, chocolate-colored eyes sometimes look a bit unfocused. In early February, Mona took an eye test, which showed that her vision had improved—good news considering the doctors had hoped her eyesight would remain stable at best—and an upcoming MRI in March will hopefully reveal that the tumors haven’t enlarged.

“It’s surprising she can see, really,” says her mother. Mona’s mother and father want her to trust her body, to test its limits, to feel strong and confident. Her parents do not physically guide her around obstacles and through the world. But someday, they might teach her to dance.

Pamela Hill Nettleton is at work on a new play, The Gospel According to Gladys.