HARTFORD, Conn. (AP) — Two words, five syllables, thrust Sumbul Naqvi into a dark depression.
“Ewing’s sarcoma,” a rare type of cancer that gnaws at bones and soft tissue, typically in the pelvis and legs.
The diagnosis rocked Naqvi’s entire household. But fate can be cruel, and the one who received the news couldn’t grasp its gravity: Sumera, Naqvi’s 2-year-old daughter.
“I was so depressed, I wanted to kill myself,” Naqvi said recently. “Because if you see your child in pain saying ‘Momma can you save me?’ and you can’t do anything, you’re at the lowest feeling that is humanly possible.”
Before the diagnosis, Naqvi didn’t “know anything about cancer.” She resigned it to a disease for old people, a crisis dealt with in the twilight of life.
“I learned that it’s not one disease, it’s a school of diseases, a world of diseases,” she said. “You realize the magnitude of the problem and that there isn’t an awareness around it.”
Naqvi wanted to change that, to show the world that childhood cancer is real and that it’s beatable.
During Sumera’s treatment at the Smilow Cancer Hospital at Yale-New Haven Hospital, Naqvi was given that opportunity through a group she now calls her “guardian angels.”
Sumera was one of 22 childhood cancer patients featured in “There is . Life Within the Journey,” a traveling portrait exhibit curated by Circle of Care, a Wilton-based nonprofit that supports families dealing with the disease.
The organization, founded by Liz Salguero, whose son Carlos survived leukemia as a boy, approached patients at Smilow to gauge their interest in the project. Their solicitations yielded a diverse group: boys and girls, infants and teenagers.
Some chose to be photographed with their families, others sat alone. The photographs tell stories that are empowering and heartbreaking.
Eli’s picture hangs next to a letter he wrote to his grandmother, who was also undergoing cancer treatment at the time. Carlee, one of the oldest patients featured, died not long after her picture was taken. She was 19, married in the final days of her life to her longtime boyfriend.
“The media around childhood cancer is focused very much on research and cures, but there’s a whole other side of the story that’s important to tell,” Salguero said. “Kids undergoing chemotherapy are playing high school soccer. They don’t see themselves as patients; they don’t feel sorry for themselves. They see themselves as kids.”
The exhibit, in addition to its permanent housing at Smilow, spent the past year roaming Fairfield County, with a few detours that included New Haven and Hartford.
“I knew they were taking her picture at a time when she was vulnerable,” Naqvi said of Sumera during the exhibit’s stop at the Wilton Library Association, “but I told myself that if I do this, I could look back and see how things have changed.”
She said having Sumera sit for the portrait injected her family with hope, something they had lacked previously.
“It feels like you’re fooling yourself, because cancer . it means death, at least that’s what I would believe,” she said. “I had to stop believing that. I’m going to live, my daughter is going to live. I had to tell that to every iota of my being.”
And it worked, as evidenced by a smiling Sumera, now 5 and done with her treatment, who happily directed people to her portrait during the Wilton event.
Each portrait, taken by photographer Jeanna Shepard, pairs the subject with a single word, a mantra for how they have coped with cancer. Sumera’s is “grace,” and the photograph shows her in a dancer’s pose.
Organizers from Circle of Care say their objective was “changing the narrative” of childhood cancer, moving the conversation about the disease beyond its treatment, which dominates the public’s attention.
And in that purpose they have a powerful ally in state Sen. Ted Kennedy Jr., D-Branford, who lobbied to bring the exhibit to Hartford’s Legislative Office Building in March.
“I’m surprised with how these kids were so revealing. There’s a pride in their success, their outlook, that’s been a major shift,” Kennedy said. “Years ago, people didn’t talk about cancer. If they themselves or a family member had a diagnosis, it was almost as if they were afraid of it or ashamed of it.”
The photos ignited memories of Kennedy’s own childhood. In 1973, at age 12, the senator was diagnosed with osteosarcoma. It was the early days of treatment, when chemotherapy was a hopeful prospect rather than a standard procedure.
He had “brilliant doctors” at the Dana-Farber Cancer Institute in Boston, he said. But too often, the focus was solely on the tumor in his right leg.
“It was almost like I was invisible,” he said. “We know today how important it is for the social and emotional rehabilitation of cancer patients and to know that this is a traumatic experience, a scary experience.”
Ultimately, Kennedy’s leg was amputated. He said no one coached him through it, discussed the procedure, until after the limb was removed.
“It’s unbelievable to think that, as a young child experiencing an amputation and serious health care crisis, no one really thought my emotional status was related to the success to treating this disease,” he said.
“And now, thank God, that’s changed. We have teams of people that really focus on the social and emotional aspects of rehabilitation, in addition to the physical rehabilitation.”
Teams like Circle of Care, which Salguero estimates has helped roughly 2,500 families in its 12-year existence.
In addition to the photo exhibit, the nonprofit offers a variety of programs, including financial assistance, “diagnosis day” gift bags of toys and personal care items, and peer mentoring.
“We try to develop programs that meet changing needs of families,” Salguero said. “Cancer is an isolating experience. We wanted to create a network to drive down that feeling.”
The exhibit has given Salguero and her staff the opportunity to meet the families they help in person. A lot of the work they do, she said, is over the phone.
When “There is … Life Within The Journey” came to Hartford, she met a boy named Oliver and his mom, who drove the 40 miles to the Capitol after leaving one of Oliver’s treatments at Smilow.
“I was amazed. When my son was in treatment, I just wanted to go home,” Salguero said. “But it was important for her (Oliver’s mother) to come see us to say ‘thank you,’ because she said she was strengthened by what we had done.”
That’s how Barbara Alter felt after seeing her daughter, Catherine, featured among the portraits in Wilton: strengthened.
“Even though it’s not an easy journey, there are these moments that you get that are good,” Alter said. “I honestly think it’s sometimes harder on the parents to watch your kids go through it. But, somehow, we got through it, and I think it was from opportunities like this.”
Catherine, 16, spent nearly three years in treatment for acute lymphoblastic leukemia. The Darien native, who dreams of being a veterinarian, struggled with the reality of her situation, trying her hardest to “think about positive things.”
“Some days, I wanted the doctors to leave,” she said. “I was in a mood where I didn’t want anyone to come in. I’d draw the curtains tight.”
But with help from her friends and family, she’d calm down. Catherine had “a team” on her side, she said.
It’s understandable, then, why she was so pleased that Circle of Care chose the phrase “teamwork” to appear with the portrait of her and her mother in the traveling exhibit.
“Groups like this, that work with families while they go through this, you realize that even during horrible times, they’re such blessings,” Barbara Alter said.
“You see people rallying around you, holding you up.”
Information from: Hartford Courant, http://www.courant.com
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