We are part of The Trust Project.
ROCHESTER, Minn. — When my kids were little, they had a friend who was absolutely crazy about ninjas. He was well-versed in just about every ninja TV show appropriate for kids and could recite lines from the animated "Teenage Mutant Ninja Turtles" TV shows. The most impressive parts of his obsession were that he often wore ninja costumes in public and carried himself — at the age of 8 — like a ninja. He was confident, proud, kind and felt as if he could tackle anything.
That's the spirit behind a ninja event happening in Rochester, Minnesota, on Sunday, May 15. The inaugural Rein in Sarcoma Ninja Anywhere event will welcome individuals and teams to fight back against sarcoma, a rare, but very serious form of cancer. The disease usually develops in kids or young adults, but not always.
"Everyone's symptoms are different," said Judy Jones, a sarcoma survivor and Rochester resident. "Mine started with severe pain in my hip that just wouldn't go away. It got worse and worse. My doctors discovered a tumor about the size of a deck of cards wrapped around the top of my right femur. And also I had a walnut sized tumor in my left lung."
Jones' diagnosis was a stage 4 synovial sarcoma.
"A very nasty kind to get," Jones said. "They said it was so tangled up in the connective tissues of my hip that they could not operate on it. They told me to get my affairs in order."
ADVERTISEMENT
That was nine years ago. Jones' treatment involved heavy duty, in-patient chemotherapy. While she was in the hospital, an unfortunate incident proved to be a blessing.
"They were transferring me and my femur broke," Jones said.
They rushed her to surgery, where a Mayo Clinic team led by orthopedic surgeon Dr. Franklin Sim operated on her leg.
"They removed the tumor, took out about 7 1/2 inches of my femur including the ball at the top of my hip joint," Jones said. "They replaced it all with metal and stitched me back up."
Then Jones endured more chemo, removal of the left lower lobe of her lung, more chemo and 34 rounds of radiation.
"I've been very fortunate that nothing has come back," Jones said.
One thing's for certain: Jones definitely qualifies as a super ninja.
She says the Rein in Sarcoma nonprofit group was started by a family that lost a child to sarcoma after having been misdiagnosed. The ninja event is designed to raise awareness of the disease and to raise funds for research.
ADVERTISEMENT
"I'm here to let people know that if they have a lump or a bump or if they have something that's not going away as it should or pain somewhere, get it checked out," Jones said.
When I asked Jones to offer some words of encouragement for people facing sarcoma, she responded the way I imagined a real ninja would respond. She said, "Be grateful. And never give up."
Rein in Sarcoma Ninja Anywhere
The Rein in Sarcoma Ninja Anywhere event welcomes everyone to participate or to just stop by to watch. Organizers set up courses for ninjas of all ages, abilities and levels — from beginners to experts to sarcoma survivors. Two Rochester-area residents who were contestants on NBC's "American Ninja Warrior" will be there for a meet and greet. So stop by and snap a selfie with Rory Roo and Dr. Candace Grandberg.
The Rein in Sarcoma Ninja Anywhere event is 2-5 p.m. Sunday, May 15, at Little Thistle Brewery in Rochester. For information or to register, visit www.NinjaAnywhere.com/RIS.
Follow the Health Fusion podcast on Apple, Spotify and Google podcasts. For comments or other podcast episode ideas, email Viv Williams at vwilliams@newsmd.com. Or on Twitter/Instagram/FB @vivwilliamstv.
