Marielena will never forget the day she found out she had leukemia. It was May 23, 2019, and she was 15 years old and about to finish her sophomore year of high school. The years that followed have been full of adversity: long stays in the pediatric intensive care unit, cancer treatments, a coma, learning to walk again, missing out on high school and now dealing with the unexpected side effects of treatment. But through it all, Marielena found strength in knowing she had a great future ahead of her.
Battling leukemia was tough enough on its own. But Marielena has also faced multiple setbacks during her journey, including learning how to walk again after a weeks-long stay in the PICU at the beginning of 2020. She had severe pneumonia and needed to be put in an induced coma in order to survive. When she woke up 12 days later, she could hardly move or talk.
“One of the hardest things I’ve had to face physically and emotionally was going through the intensive rehab — learning how to swallow again, get my voice back, and move my arms, fingers and legs,” describes Marielena.
Marielena finished cancer treatment in September 2021, and her leukemia is in remission. However, she’s now dealing with avascular necrosis, a disease that results from the temporary or permanent loss of blood supply to the bone — a rare side effect of her leukemia treatment. In July 2022, she had to have both hips replaced, and she’ll need to have her knees and shoulders replaced in the near future.
Marielena is grateful for her entire Children’s Minnesota care team. Among those who stand out is Patty Santos, the limited English proficiency patient family advocate for the cancer and blood disorders program. In the role, Santos is part of the care team, advocating on behalf of Spanish-speaking patients and their families as well as helping them understand the diagnosis and navigate the various aspects of their care.
“Patient family advocates play an important role in reducing health disparities and improving outcomes for patients, particularly for underserved families,” says Santos. “We’re walking with them as they go through their care journey.”
Marielena also found support in the Adolescent and Youth Adult Cancer program at Children’s Minnesota, which is specifically designed to meet the needs of cancer patients between the ages of 15 to 29. “The AYA program was a really big help because it allowed me to see teens get through diagnosis and treatment,” remembers Marielena. “It was also good to talk to other teens about our journeys.” She also appreciated the wraparound services offered at Children’s Minnesota, including music therapy, massage therapy, parking passes and food vouchers for family members.
Now 19, Marielena is in her sophomore year at the University of St. Thomas‘ Dougherty Family College. Once she receives the college’s two-year associate’s degree, her goal is to pursue a bachelor’s degree and one day become an advocate for other patients.
The cancer and blood disorders program is the focus of this year’s Children’s Minnesota Star Gala, the premier black-tie fundraiser for Children’s Minnesota. For 30 years, the philanthropic community in the Twin Cities has come together to raise millions of dollars for the nonprofit, which relies on generous donors to make possible the life-changing programs at Children’s Minnesota.