January 13, 2022 by Muriel Sommers
Turning Grief into Power: Parents of Cancer Victims Honor Their Children’s Legacies
“We’re members of a club no one wants to be a member of,” said Raymond Rodriguez-Torres. He is the co-founder of Live Like Bella, a foundation he created to honor his daughter, Bella, who died in 2013 at age 10 of alveolar rhabdomyosarcoma, a rare type of pediatric cancer. He recalled feeling so helpless at the time. “I was Bella’s father, provider and protector, yet I was unable to help her.”
Mr. Rodriguez-Torres was a panelist for “Turning Grief Into Power,” the sixth in a series of virtual “Inspire You” programs hosted by Miami Cancer Institute. He was joined by Marta Blanco, founder of Sofia’s Hope, and Marilu Chavez, founder of Miggy’s Gift. Both women have also sought to honor the legacy of their children, whose lives – like Bella’s – were cut short by cancer.
In his opening remarks, Michael Zinner, M.D., CEO and executive medical officer at Miami Cancer Institute, noted that cancer is the leading cause of death among children. An estimated 15,590 U.S. children and adolescents (ages 0 to 19) will be diagnosed with cancer this year, according to the National Cancer Institute, and 1,780 will die of the disease.
But in spite of the unimaginable tragedies the three panelists have faced, Dr. Zinner said each has a remarkable story to tell about how they were able to turn their grief into power. “Their stories of hope and healing are so inspiring for our patients, caregivers and community members,” Dr. Zinner said. “And the work they’re doing is making a postive impact on families going through similar journeys.”
Mr. Rodriguez-Torres said no parent should have to lose their child. “I held Bella for her very first breath…and her very last,” he said. But Bella’s legacy lives on through the work of the foundation, which has funded $13 million in pediatric cancer clinical trials and provided financial and emotional support to thousands of families across the country and around the world.
“To ‘Live Like Bella’ means to serve and help others,” Mr. Rodriguez-Torres said. “Thanks to the foundation, Bella is more alive now than she ever was in her entire existence and she inspires us to continue to honor her legacy by serving and helping children with cancer.”
Fighting cancer with hope
Marta Blanco recalled how her daughter, Sofia, was just four years old when she was diagnosed with an extremely aggressive form of Non-Hodgkin’s Lymphoma. “Thanks to the doctors at both Baptist Children’s Hospital and Miami Children’s Hospital, Sofia survived and went through a year of chemotherapy,” Mrs. Blanco said.
Eight months into her treatment, however, Sofia suffered heart failure which was initially thought to be viral but eventually discovered to have been caused by one of the chemotherapy drugs in her treatment protocol, the anthracycline Adriamyacin. While Sofia was able to overcome that initial bout and live a full life for several years, the damage was done and nearly a month after her 13th birthday, her heart simply gave out.
Mrs. Blanco said Sofia’s death was indescribably awful and something she lives with every day. “It doesn’t get smaller, but you learn to live with it a little more every day,” she said. To help deal with her loss and give meaning to Sofia’s death, she founded Sofia’s Hope (“Fighting Cancer With Hope”) with the goal of making a difference in pediatric cancer – specifically in the field of pediatric cardio-oncology.
According to Mrs. Blanco, Sofia’s Hope focuses its efforts on the twin goals of funding research that promises to have a long-term impact and developing patient and family programs that can help support those going through the journey right now.
A superhero for young cancer patients
When her son, Stephen, died of Stage 4 Melanoma at the age of 29, Marilu Chavez was devastated. “For parents who’ve lost a child, the grieving never ends,” she says. “We’re not strong. Nobody sees you on your knees in the shower, crying for your child. We just try to survive, day by day.”
Mrs. Chavez channeled her grief into action after learning about a side of her son’s life she never knew existed. Stephen, a video game design and development whiz, was well-known among members of a gamer community he had created.
“After Stephen died, we were getting sympathy messages from all these people we didn’t know,” she recalled. “They were saying how Stephen was always doing things for others, including sending money for food and diapers to a single mother in need, but he would do it quietly without seeking credit.”
Following inquiries from his online friends on how they could honor the memory of “Miggy” (Stephen’s gamer-world tag name), Mrs. Chavez created Miggy’s Gift, a foundation committed to increasing awareness and education of melanoma skin cancer.
Before his passing, Stephen had unknowingly planted the seed for what would later become his legacy, according to Mrs. Chavez. “During his stay at the hospital, it didn’t take long for him to notice how poorly designed the hospital gowns were, especially for patients receiving infusion treatment,” she said. “In true Stephen fashion, along with his passion to help kids, he started designing a superhero-inspired gown for pediatric cancer patients, and that was the start of Miggy’s Gift.”
Helping children is at the forefront of Miggy’s Gift’s mission, whether it’s organizing education and awareness programs, advocating for skin cancer protocols and screenings in schools, or funding video game design scholarships at Miami Dade College. Mrs. Chavez also created a stuffed dachshund with a superhero cape and wrote a book to go along with it. “I was delivering the gift packages to pediatric cancer patients in the hospital until the coronavirus put a temporary stop to the program.”
To stay informed about upcoming Miami Cancer Institute programs and events which, like the “Inspire You” series, are open to the community, please follow the Institute’s Facebook page.
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