In honor of Childhood Cancer Awareness Month, Prabal Chakrabarti writes about his daughter Sajni.
Our daughter Sajni Chakrabarti was only 7 and a half years old when she was diagnosed with a very aggressive form of brain cancer – diffuse intrinsic pontine glioma (DIPG) – and given only nine months to live.
Sajni loved life and learning. She spoke French fluently, played the violin and read avidly. And after she became sick, even as she struggled and was sad, she kept her bright-eyed glow and laughter all the way through. She still aimed to change the world, even writing a letter to the White House on climate change. …
The line wraps around the stage in the Joseph B. Martin Conference Center and extends down the aisle. Stepping up to the microphone, a man in a yarmulke says a name, then places a long-stemmed rose in a nearby vase. Behind him, a little blonde girl whispers her sister’s name and walks to the vase. Behind her, a large family clad in matching t-shirts emblazoned with a baby’s smiling face follows suit. When everyone has had a turn and returned to their seats, a medical resident begins reading dozens more names as clinicians and staff from Boston Children’s Hospital cycle past the vases, each adding another rose. …
Every year, Children’s Hospital Boston holds a service to honor the children who died. “A Time to Remember,” they call it.
Every year, my husband is there.
Mark is a respiratory therapist at Children’s. He works in the ICU’s, the place where the sickest children are. He knows many of the children who died, and their families.
It’s a hard service to go to, he says. The names of children who died are spoken, and the families or a staff member walk up and lay a rose in a basket. There are a lot of names. It’s one thing to hear the names, Mark says. But when the families go up, he gets a rush of memory—of each child, of how we fought to save them, of the family’s anguish, of the moment they died. It’s really painful. Mark doesn’t like crying in public, but he usually does.
We don’t like to face the fact that children die. We don’t like to think of any of our patients dying; we want to think of ourselves as people who save. Maybe this is why some doctors and nurses don’t want to go: not only is it terribly sad, but it makes them feel as if they have failed.
This misses the point.
We can’t save everybody. We are not God. Some illnesses and injuries and birth defects are beyond our power and knowledge to fix. But that doesn’t mean we are powerless; sometimes caring for someone is acknowledging we can’t fix it, and then being at their side as they die. …