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Patient, 24, receives stem cells from sister, focuses on life experience to overcome obstacles

IU Health Simon Cancer Center

Patient, 24, receives stem cells from sister, focuses on life experience to overcome obstacles

He’s worked with clients in behavioral health programs and homeless shelters. Now Luis Nieves is applying some of those coping skills to his own diagnosis of leukemia.

By TJ Banes, IU Health Senior Writer,

There’s a sign that hung inside the hospital room of Luis Nieves at IU Health Simon Cancer Center. It reads: “I’m feeling my best when company is here.”

As company entered his room, Nieves moved from his hospital bed to his wheelchair. He adjusted his posture and put on a big smile. He was a host in his room. He welcomed others.

And yet, this is a 24-year-old man diagnosed with leukemia in August of 2022. He has spent the majority of his life since in the hospital, undergoing chemotherapy, surgery to amputate both of his legs, and a life-saving stem cell transplant.

Still he smiles. He talks openly about his life before and after his diagnosis and especially about his future. A 2021 graduate of Purdue University, Nieves pursued a career in behavior science and plans to go back to college to study clinical psychology. He hopes to apply his personal and professional experiences working with children in low income areas of the state.

“I want to be a resource for others,” said Nieves. He’s also looking forward to marrying the love of his life, Erika Ross, someone he has known since preschool. He proposed to her in November - three months after his diagnosis. The stage was set in Carmel’s Coxhall Gardens with luminaries cut out in letters to spell, “Will you Marry Me?” That was only part of the surprise. Nieves walked toward his love with the assistance of a cane.

Luis Nieves at engagement

His diagnosis was discovered after he had problems healing from the removal of his wisdom teeth. He then started losing dexterity, driving was difficult and he began slurring his words.

“I went to the hospital and thought I might be anemic and I’d be on my way home, but the first thing I heard was ‘abnormal cells,’” said Nieves. He was at another hospital and the next word he heard was, “Leukemia.”

“When I finally processed it, I realized I am very sick,” said Nieves. In the weeks that followed, he started induction treatments, developed an infection, was on a feeding tube, and at one point thought he was going to die.

Then swelling began in his knees - first his left then his right. Antibiotics couldn’t knock the infection. Flushing couldn’t knock the infection.

“Doctors did all they could to remove tissue damage - five surgeries in all. They gave me just enough time from the previous surgery before starting the next,” said Nieves. He was transferred to IU Health in February where treatments continued to fight the infection, believed to have been caused by chemotherapy. He went three times a week to IU Health’s Methodist Hospital Wound Care Center.

In the care of IU Health’s Dr. Jennifer Schwartz, who specializes in hematology, Nieves said he appreciated the team approach in making a decision that would forever change his life.

“We were on a big group zoom call and it came down to whether I wanted a better quality of life or quantity of life. I could live longer or better. The infection was stopping me from going forward with a stem cell transplant. I was between a rock and hard place. If I chose to amputate my legs, I could get a stem cell transplant and hope to conquer leukemia. By this point it was good riddance to my legs. I am way more mobile now that I was with my legs. They weren’t strong and they weren’t functioning,” said Nieves.

On March 31 he underwent an hours long surgery.

“I had already decided I wanted to live to get married, to see my niece grow up and I didn’t want anymore pain,” he said.

Luis Nieves with nurse

On June 8, he received a stem cell transplant from the woman he calls his, “champion of a sister,” Edu Nieves. He wrote: “It has been a long and difficult road and the journey is not over yet, but this is a huge victory to even be able to get to this point.”

Edu Nieves was the first person tested as a donor and was a perfect match. “She’s always taken care of us so it was fitting that she’d donate to save my life,” said Nieves.

Raised in Delphi, Ind. Nieves is the middle of five children. His parents were born in Mexico and immigrated to the United States before he was born. In high school, Nieves wrestled in the 145-pound weight class, was a linebacker on the football team and participated in several philanthropic projects including drug prevention, a blood drive, and Students Against Drunk Driving.

When he graduated, he had his sights set on a career in physics but switched to psychology.

Luis Nieves in wheelchair

On a recent afternoon, he took part in a guided meditation session with yoga therapist, Katarina Svabcikova. Yoga therapy is part of the CompleteLife Program of the Cancer Resource Center at IU Health Simon Cancer Center. Other therapies - including art, massage, and music - are offered as a way of attending to the mind, body, and spirit of patients.

“ I do attribute a lot of my ability to manage stress to my background. I learn how to identify stressors and try to eliminate and manage them and come up with coping skills. My family, and my fiancé are very supportive and I’m also very introspective,” said Nieves.

Part of his career has taken him into outreach positions where he has worked with people in community centers and homeless shelters. He’s also worked as a case manager at a behavioral health clinic.

Since his diagnosis he is not working. His Purdue University fraternity brothers have set up a GoFundMe account.

“I’ve always said I’m a person with a lot of experience in life,” said Nieves. “I’ve been through different walks of life - both living in the US, in a rural town, Hispanic household and seeing the poverty my parents grew up in. And now through chemo and amputation, I’ve been able to connect with a lot of people with similar experiences. I can sympathize with people with different disabilities and hope to use that experience to help others.”



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