Physicians only knew of one other patient with Stage IV synovial cell sarcoma who had survived.
Synovial Cell Sarcoma – Tori’s Story
On a fall night, Dawn checked on her sleeping daughter. Eight year-old Tori, was sprawled out on the bed. "It looked like she was going to roll out of her bed, so I picked her up, sort of by her hips. And I felt a huge lump in her upper thigh," says Dawn.In the morning, Dawn took Tori to urgent care and was immediately referred to the hospital.
A Rare and Deadly Diagnosis
Tori was diagnosed with stage IV synovial cell sarcoma, an extremely advanced and rare soft tissue cancer. The tumor in her upper thigh was five by eight inches and wrapped around the quadricep muscles. Tori also had one tumor in each of her lungs.
The bad news didn’t end there. People with Tori’s type of cancer frequently don’t respond to chemotherapy and rarely beat the disease. In fact, physicians only knew one other patient with Stage IV synovial cell sarcoma who had survived.
The medical team recommended six rounds of the strongest available form of chemotherapy, then surgeries to remove the leg and lung tumors. Because the leg tumor appeared to be attached to the bone, it was likely her femur would need to be removed and replaced with donor bone. After the surgery, Tori would spend three months in a body cast. Tori was admitted to the hospital so the treatment plan could begin.
As Tori underwent chemotherapy, the family got their first bit of good news. While chemotherapy often makes patients nauseous or tired, Tori’s body responded well. Sometimes, instead of nausea, she got cravings. One day, she asked her Mom to bring her Chicken Nuggets. In one sitting, she ate 21 of them.
Then the family got even better news — the chemo was attacking her leg tumor with gusto. "Before chemo, the tumor was hard as a rock," says Dawn. "After chemo, it actually moved when the doctor examined it." An MRI showed a small patch of blackness where the tumor had been attached to the bone. Because the tumor was pliable and detached from the bone, surgeons were able to isolate and remove it.
Upon removal, the tumor was examined and doctors noted that the first three rounds of chemotherapy had killed half of the tumor tissue. Portions of the quadricep muscle that were attached to the outside of the tumor were also removed during this surgery, but her femur bone was saved. Another surgery removed the tumors in her lungs.
Moving Forward with Grateful Actions
It has been years since Tori’s diagnosis and the path has been rocky. Follow-up chemotherapy and radiation have challenged her body’s limits. Thus far, Tori has undergone 13 surgeries, seven of which removed tumors and scar tissue in her lungs. She has also endured seven weeks of radiation to the upper thigh area and six rounds of chemotherapy.
But the hard work has paid off. As a teenager, Tori now walks — and runs — just fine, and she’s moving on with her life. "She’s been clear for years!" says Dawn. "Now, what she’s really into is basketball. She lifts her leg a little when she runs, but she’s tenacious and aggressive — she plays hard."
The family regularly returns to the University of Minnesota Children’s Hospital, Fairview for new scans. Because Tori’s body can no longer tolerate chemotherapy, they pray for new research that may give her options if she suffers another recurrence. To help support new research, the family believes in helping through volunteering at Children’s Cancer Research Fund events, including the annual Dawn of a Dream gala.
Tori doesn’t often look back at the experience. "I just want to be a normal kid," she says. However, she’s incredibly thankful for the research and treatments that have allowed her to beat the disease so far. "If people didn’t give to Children’s Cancer Research Fund over the years, I probably wouldn’t be here today," she says. "This organization has given doctors more opportunities for research, and with more opportunities, we’ll find a cure."
"Tori has a resilient spirit," adds Dawn. "One person has survived Stage IV, and that gives me hope that Tori can be number two."
