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SALT LAKE CITY — Today is the first day of the rest of Nestor Cruz's life.
An incredibly rare, staggeringly brutal cancer is hopefully behind him. In front of him, a small pot where he has just planted a sunflower seed.
"For me, it's planting something that — I don't know how to word it," he said. "A new beginning for me and my wife."
Cruz and his wife, Sheila Cruz, are joined by other patients of sarcoma, a rare and sometimes deadly form of cancer that develops as tumors in bones and soft tissues.
Due to sarcoma's unforgiving nature, doctors have been forced to perform extensive surgery or amputation. Cruz had his last surgery a few months ago, he said, and now he only needs checkups. While his treatment is hopefully over, research, treatment and awareness is still an ongoing battle at the Huntsman Cancer Institute.
On Monday, patients, doctors and staff from Huntsman took the morning to raise awareness about the condition so uncommon it's known as an "orphan disease."
"One of the challenges — because it's so rare — it's often hard to do studies or find the resources to run the clinical trials," said Dr. Joshua Schiffman, one of the leaders in sarcoma research at Huntsman.
The sunflower is a symbol for sarcoma awareness. In honor of Sarcoma Awareness Month, the cancer institute gathered patients on one of the sprawling campus' patios to paint pots and plant sunflower seeds.
Much like the various species of sunflowers, scientists have identified well over 50 subtypes of sarcoma.
"Sarcoma is a rare and horrid disease," said Sara Shaw, a sarcoma student coordinator at Huntsman. "It primarily affects people 15 to 39, so it's a younger population of people."
One of sarcoma's younger patients is 32-year-old Chad Jaggi. While he may not describe himself as an artist, he painted a pot all the same at Monday's event. Joining him were his wife, Stephanie Jaggi, and their two children, Bella, 8, and Braden, 4.
Jaggi has been battling sarcoma for three years now.
"It started in the bone, they thought that's where it centralized so they took my leg below the knee," Jaggi said. "Pathology came back that the whole leg just had cancer everywhere. So about a month later, they took my leg above the knee."
Jaggi now walks with a prosthetic leg. During his treatment process, Jaggi has faced surgery across his body, battling the cancer wherever it crops up.
"We found out last week I have lung metastasis as well so we're dealing with all that now too," he said.
The Jaggis, still in the fight against the disease, want more people to know about it. Due to its obscurity, it has been dubbed an orphan disease. Sarcoma only makes up about 1 percent of all cancers, and without awareness, it is less likely to receive the research funding it needs.
"The sunflowers are nice," Stephanie Jaggi said. "We have them all over our house."
Stephanie Jaggi also wears a bracelet decorated with sunflowers on Monday.
"She's the artist, she says she's not though," Chad Jaggi says with a grin. Bella, from below, proclaims that she is the artist in the family.
While the cancer may not receive enough attention, the medical world has made headway in finding out which treatments are better than others. It also tells them how much they don't know yet.
"A big part of our effort is really focused on trying to understand how we can better come up with treatments that can help young people," said Dr. Kevin Jones, a soft tissue sarcoma surgeon.
Schiffman and Jones said that the disease tends to run in families, and one of the Huntsman Cancer Institute's goals is finding out who's at a higher risk for sarcoma before they are diagnosed with it.
"It's so devastating when these sarcomas happen in these young adults, in teenagers and such active patients," Schiffman said. "I just had a patient that we saw last week. She was pregnant, she had to have her whole limb amputated from here down," he said, motioning from the top of his right thigh down. "While seven months pregnant. Imagine what that's like."
At Huntsman, sarcoma research is an "around the clock operation," Schiffman said, with over 30 people on staff dedicated to working on the disease. If people want to help, he said they can donate to the cancer institute specifically for sarcoma research.
For now, Schiffman and Jones will continue to research the disease, the Jaggis will continue their battle and the Cruzes will take their sunflower home.
"After surgery, I was pretty much reborn again," Nestor Cruz said. "It's what this symbolizes. Hopefully it grows, and stays strong, as long as I do." Email: awilliams@deseretnews.com
