Jul 21, 2017 9:00 AM

Author: Cancer Learning Center


In the short time between Ken Selden’s cancer diagnosis and the end of his treatment, he and his wife, Julieann, went through a lifetime’s worth of grief, fear, pain, hope, and joy. In return, they’ve earned a lifetime’s worth of wisdom. After what the young couple call the worst trial they’ve ever faced, Julieann and Ken now live a more purposeful life.

“We’ve found that the happy and good moments are more precious—and therefore more joyful,” says Ken.

“We’re growing in ways we never would have without cancer,” Julieann adds. “Our days revolve around finding joy and helping others.”

Ken ringing the gong at the end of chemoThese life lessons came at a difficult price. In early 2016, the busy working parents of a toddler learned the back pain Ken had been experiencing was due to mesenchymal chondrosarcoma, an extremely rare cancer that affects cartilage. According to the National Organization for Rare Disorders, fewer than 800 cases of the disease have ever been recorded. The diagnosis left the couple feeling “very much alone,” says Julieann. “There was no one to connect with.”

While living in Salt Lake City, Ken started on chemotherapy, then faced a daunting surgery to remove the tumor growing right along his spinal column. Because of the surgery’s complexity, Ken and Julieann sought a second opinion at the Mayo Clinic in Ken’s home state of Minnesota. They chose to have the surgery performed there.

Ken recalls the surgeons explaining how delicate the procedure would be. “They told me, ‘We have to angle it just right so we don’t nick your spinal column.’ I was terrified I would lose the use of my legs.”

The procedure took several surgeons and a total of 24 hours over three days. It was a success—the surgeons were able to remove all of the tumor without damaging Ken’s spine. But the intense surgery required several months of rehabilitation in which Ken learned to walk again. At the same time, he endured more chemotherapy and 25 cycles of radiation. Then the couple returned to Utah, where Ken received four more months of chemotherapy at Huntsman Cancer Institute (HCI).

“Ken has endured more pain and sickness than I ever thought possible,” Julieann says.

Today Ken has no evidence of cancer. Although both he and Julieann are aware of the chance of recurrence, they are moving forward and adjusting to their new normal. And they seem to have found their calling in life—helping others.

Throughout Ken’s treatment, the couple felt the need to talk with people who understood. They searched for and connected with other young adult sarcoma patients and caregivers. Julieann found a blogger with mesenchymal chondrosarcoma, a woman she now considers one of her best friends.

“I've made a lot of connections with people in various parts of the world,” says Julieann. “We’ve also made some forever friends at HCI. Those interactions have been invaluable. I have been lifted from many of my lowest moments by others who truly get it.”

Selden family at the recent Huntsman 5k“There were many times we found ourselves in situations that were hard for friends and neighbors to relate to,” Ken adds, “from trying to potty-train our son while spending most of our time in the hospital to fears of Julieann becoming a widow. It made a huge difference to talk to others who have been there before.”

The power of these friendships made such an impression on Julieann and Ken that they are giving back.

“We hope others know how much we care and that there is a community of supporters ready to share their love and help in whatever way they can,” says Ken.

“Sharing our story and connecting with others has been the most rewarding part of our experience,” says Julieann in her blog, Contemplating Cancer. “We want to use our experiences to help families with and without cancer across the world.”

Learn more about sarcoma.


Cancer Learning Center

Huntsman Cancer Institute
cancerinfo@hci.utah.edu

sarcoma AYA cancer patient stories

Sign Up for Weekly Health Updates

Get weekly emails of the latest news from HealthFeed.