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Young Man Shares Hopeful Message Before Ewing Sarcoma Returns

Article date: August 6, 2014

Daniel Mar - Stories of Hope

"I'm going to take this horrible experience and turn it into a positive for other people. It's hard for people in the hospital, and I'm going to make it better. I want to make a difference, and leave the world better than I found it."

 

By Stacy Simon

Daniel Mar, 20, was optimistic about his future when tests confirmed he had no more evidence of Ewing sarcoma, a type of bone cancer. He planned to go back to college, go back to work, and to someday become a volunteer advocate for cancer patients.

“I’m going to take this horrible experience and turn it into a positive for other people,” said Mar. “It’s hard for people in the hospital, and I’m going to make it better. I want to make a difference, and leave the world better than I found it.”

But just a few months after he made those comments, a routine exam found that Mar’s cancer had returned. Mar spent the end of his life in hospice care, a type of care that helps people in the last phase of an incurable disease live as fully and comfortably as possible. Before he died, Mar asked that his story be told so that he could share his positive message about life with as many people as possible.

In most cases, patients with Ewing tumors that are found before they have spread are able to survive long-term. However, tragically, cancer can be unpredictable.

‘A huge pause’

Mar had just turned 19 when he was first diagnosed with Ewing sarcoma. He’d been having pain in his legs for a while, but had chalked it up to a soccer injury he’d gotten at age 15 or 16. Treatments from doctors and physical therapists didn’t help, and the pain just kept getting worse. Finally, his mother, a nurse, took him to the doctor and insisted he have an x-ray. That led to more doctor appointments, scans, and a biopsy. A few days later, Mar learned he had Ewing sarcoma in his right hip bone.

Ewing sarcoma usually affects teens, though younger children and adults can get it too. About 225 children and teens are diagnosed with Ewing tumors in North America each year. The most common places for Ewing tumors are the pelvis (hip bones), the chest wall (such as the ribs or shoulder blades), and the legs, mainly in the middle of the long bones. The most common symptom is pain. Sometimes the tumor may show up as a lump or swelling on an arm, leg, or the trunk. Ewing tumors can also cause general symptoms like fever or not feeling well.

Mar said finding out he had cancer was a shock. He worried about the effect of the news on those closest to him – his mother, father, and girlfriend. His mother’s nursing background came in handy – when medical information was complicated, she helped Mar understand his diagnosis and treatment, and communicate with his doctors. But that also meant she knew and understood everything that was going on at all times, which made her worry more.

Shortly after his diagnosis, Mar began chemotherapy treatments, which caused side effects including pain, nausea, loss of appetite, weight loss, fatigue, and drowsiness. He also underwent radiation therapy and surgery to remove the tumor and some bone. To protect his immune system and make the time for treatments, Mar had to quit work and school. “It’s been a huge pause in my life,” he said then. “Everyone else is moving forward in life, but I’m just stuck, and that’s hard.”

‘Hang onto the things that bring you joy.’

Despite the difficulties, Mar said he found meaning and purpose in his cancer experience, and even happiness. “You have to be flexible,” said Mar. “Hang onto the things that bring you joy: your dog, your family, your best friend. Spend time and hang out. This is not going to be easy, but what makes it a little easier is smiling through it. You can choose to say, ‘Why me? Why now? I hate everything,’ and shut down. Or you can say, ‘This is the reality; this is what’s happening. It doesn’t feel good, but it’s going to get better.’”

Before his cancer returned, Mar said he planned to live each day like it’s the last day he’d be cancer-free again. “I managed to smile through this terrible thing and come and out on the other side feeling positive,” said Mar. “I managed to have fun through this experience.”

His advice to other young cancer patients and survivors: “Keep those you care about and who care about you close, and you’ll get through it.”