By Martha Ross
Karen Henrich’s photo shoot with Nick Sandoval and his family takes place in a garden with a sweeping lawn and a view of San Francisco Bay. The Alamo photographer clicks away with her Nikon F5 as 17-year-old Nick poses with his mom and dad, two younger brothers, and grandmother.
Nick mostly sits in a wheelchair on this late afternoon in early December. He has bone cancer, which first showed up in his right femur in 2002. Five years later, despite surgery, chemotherapy, and radiation, the disease has spread throughout his body, including to his spine, brain, and lungs. Henrich has come to take Nick’s photos at the George Mark Children’s House, a children’s hospice in San Leandro, where Nick (pictured with his mom, Rose Sandoval) and his family have been staying for the past week.
Nick and his parents know he doesn’t have long to live, but the mood at the photo shoot is anything but somber. The sky is clear, and the setting sun burns bright and gold. Nick’s mom puts on red lipstick and chatters about all the fun things the family has done together recently. “We’ve lived so much in the past few weeks!”
Nick and his two brothers, Dominic and Johnny, and his dad, John, wear new suit coats. Johnny, 12, shows off their new pet Chihuahua. Even Nick, who begins the shoot looking tired, smiles and reveals a sly sense of humor. When his grandmother tells Nick he looks sexy, he cracks, “I always look sexy.”
Henrich picks up on their playfulness. She’s the mother of two sons, 10 and 13, so it’s easy for her to joke with Nick about letting his mom hug him. In between arranging family groupings, she sneaks in candid shots of Nick mugging with his brothers and his parents in an embrace.
Later, Rose Sandoval says she’s grateful for this photo session, which comes free through Moment by Moment, a nonprofit Henrich founded in 2006. The organization dispatches volunteer photographers to hospitals, hospices, and private homes to snap photos of terminally ill children and their families. Rose says Nick’s repeated hospitalizations made life so hectic that it was difficult to contemplate scheduling time for professional photos.
Nick adds: “We’ll finally have family portraits like every other family.”
Pretty, slender, and wearing spike-heel boots, Henrich looks as if she’d find her creative outlet in fashion photography, not in documenting the final months, days, and moments in the lives of dying children.
She knows that some people find the mission of Moment by Moment to be unbearably sad. Some ask why parents would ever want to hold on to images of their children in the last stages of a devastating illness.
Henrich learned the answer to that question through a tragic personal experience. In 1996, when she was a new mother, a close friend, Jeannie Lovell, formerly of Walnut Creek, asked her to be present when she gave birth to her second son. The eight-pound, five-ounce boy named Quinton appeared healthy on arrival. But by the next day, he was not thriving, and doctors quickly diagnosed him with a heart defect, which would kill him two days later. Henrich was with Lovell when her baby died.
The Lovells took snapshots right after Quinton was born, but they were small and unprofessional. To this day, the ache Lovell feels for her son’s loss is accompanied by the regret that she doesn’t have a more artistic, professional photo of him. “It would help to have the gorgeous portrait of him to say, ‘Yes, you were a part of my life. You were this incredible spirit who came down into my life for three days.’ ”
Lovell says that Henrich was a steady, comforting presence following her loss. So, after Henrich left a career in biotech sales to open her own photography studio and started looking for a way to do volunteer work, Lovell suggested she provide a service that she herself would have cherished.
The name Moment by Moment refers both to how photos capture moments in time and to the living-in-the-moment philosophy often embraced by those facing imminent death. “It really does make you think differently about how you’ll live and spend your time,” says Rose Sandoval. “As hard as it has been to go through this with Nick, there have been some really beautiful moments that came through.”
Henrich’s first client was a three-year-old girl who was dying of Tay-Sachs disease. She later learned that the girl’s older sister took the photos to school to share with classmates and teachers. Since then, Henrich has taken photos of children of all ages, from infants to teenagers, and in all stages of decline. If she has any fear about interacting with dying children and grief-stricken parents, she manages it by focusing on the important job she needs to do for them.
“We all know that the first thing we would take in a fire or emergency would be our photo albums,” Henrich says. “Pictures are iconic. Yes, the children [I photograph] are headed down a path we cannot imagine going down with our children, but the pictures will preserve the image of how spirited they are.”
Moment by Moment has photographed more than 600 children and their families, and built a roster of 73 volunteer photographers throughout Northern California and a growing number in Southern California. For Henrich, whose husband, Scott, is an engineer, going out on photo shoots and running Moment by Moment have become a full-time job, though she takes no salary. Some of her time is spent researching and applying for grants and organizing fundraising events, such as a wine-tasting party at her house that was held in September and a sit-down dinner and live auction to be held May 9.
The money raised covers the cost of printing a box full of four-by-six photos and burning them onto a CD, which can cost up to $100 per family. Henrich is especially eager to provide this service to poor families who cannot afford professional portraits. Once families receive the photos, they are free to use them in whatever way they want: including e-mailing them to family members or enlarging them to display at memorial services.
As with the Sandoval photo shoot, the photographers work as quickly as possible, knowing that time is precious for their subjects and families. They do their best to photograph the children in the most flattering way possible: from angles that hide machines or in natural light if the children can go outdoors. Photographers also do separate photos of family members, particularly brothers and sisters, who may struggle with having their parents’ attention so focused on a sick sibling.
The Sandoval family stayed at George Mark for another few days, then brought Nick to their San Joaquin Valley home for the holidays. Around New Year’s, Nick told his mother he was having trouble breathing. On Sunday, January 6, Nick returned to George Mark. He died four days later, at 9:45 a.m. on Thursday, January 10.
During his five years with cancer, suffering through bouts of nausea, almost constant pain during the later stages, and the knowledge that he might not make it to college, Nick carried a 4.0 grade point average, played alto saxophone in his high school band, and stayed laid-back and positive. Rose Sandoval says Henrich’s photos capture Nick’s spirit and the bond he shared with his family. “For me, these are very personal.” So far, she’s had one image of Nick transferred to a pillow with which she sleeps at night. Another photo might go on a large blanket that the family can curl up under while they watch videos.
For Henrich, spending time with Nick and his family was a “gift.” As she drives home from each photo shoot, her mind is not buzzing with the scores of things she needs to get done that day. Rather, her mind is calm, and her heart feels big. “I go home and hug my children,” she says. “It is nice to step back and appreciate the most important things, our family connections, our children, or anyone that we value in our lives.”
For information about Moment by Moment, visit www.momentbymoment.org.
Published: Diablo, April 2008
Author bio: Martha Ross is the associate editor of Diablo magazine—and a mom.