Eleven-year-old Gracie Sage loves fiercely, lives fully, and gives generously. Named the Charlotte market’s 2024 Children’s Miracle Network Champion, Gracie’s devotion to Atrium Health Levine Children’s Hospital runs deep. When she was two weeks old, Gracie spent time in the neonatal intensive care unit to treat sleep apnea, and the level of care she received stuck with her parents. In 2022, when a bump on Gracie’s abdomen led to a staggering diagnosis — a soft tissue sarcoma known as CIC-DUX4 sarcoma (CDS) — her parents immediately turned to Levine Children’s for her care.
Gracie’s cancer specialist Dr. Javier Oesterheld explained that CDS is a subcategory of small round cell sarcoma based on the translocation of genes. “This genetic component, paired with the fact that it was on Gracie’s skin, makes it incredibly uncommon,” explained Dr. Oesterheld, vice chair of clinical affairs and division chief of cancer and blood disorders at Levine Children’s.
Gracie’s care team acted quickly, surgically removing the margins of her tumor and placing a port for chemotherapy. She then underwent 12 chemotherapy infusions and 21 IV infusions. Though the road ahead was daunting, Gracie’s care team became the family’s biggest ally.
“The nurses, doctors and Child Life Specialists at Levine Children’s played an integral part in helping our family get through the most difficult thing we’ve ever had to face,” shared Jenny.
In addition to connecting Gracie’s parents with resources, the Child Life team supported siblings Jackson and Izzy, and even educated Gracie’s classmates about her treatment and ways they could support her. Gracie has also benefited from Levine Children’s pediatric cancer survivorship program, which works to mitigate any long-term effects of treatment.
Gracie became so tightly knit with her care team that she cried when she rang “the bell” that signified the end of her active cancer treatment. The room was filled with those who grew to adore Gracie, celebrating with her as the sound of the bell echoed down the halls.
Gracie leads with her heart
Gracie’s parents describe her as loving and empathetic, but there aren’t enough words to explain the magnitude of her big-hearted nature. Inspired by her cancer journey, Gracie and her school have organized stuffed animal drives and “Skip It” Saturdays, asking friends and neighbors to skip a weekend outing and direct their money to Levine Children’s, raising more than $35,000 to support the hospital’s pediatric cancer research program. At the start of the New Year, Gracie embarked upon her greatest journey yet — serving as Levine Children’s Hospital’s 2024 Children’s Miracle Network Champion.
“I’m a champion because I’m determined, and when things get hard, I don’t back down,” shared Gracie in anticipation of her new role. Gracie’s mom hopes she can use her experience as a platform to continue to help other people. “The work Levine Children’s is doing to further research in this space gives me hope; the investment from the community is incredible; and the [teams] working to further this body of research are truly difference-makers,” said Jenny.
Gracie herself might be one of those researchers one day. She says one of her biggest goals for her future is to cure cancer so other kids don’t have to go through what she experienced.