Amelia Khounthikoumane, 7, is creative and active with an abundance of hobbies. She loves art, reading, gymnastics, running, riding her scooter and bike, and playing games. She’s also what her family calls a “brave warrior princess” who has battled and overcome stage IV cancer.
Amelia’s cancer diagnosis and treatment
When Amelia was three years old, she was practicing somersaults with her mom when she heard her dad, Thavone, come home. She rushed to the door to greet him. But suddenly, she stopped in her tracks and fell to the floor in pain. Thinking it was appendicitis, her parents took her immediately to the emergency department at Atrium Health Levine Children’s Hospital.
“They did bloodwork and examined her, then the ER doctor came into the room with Amelia’s results,” says Thavone. “I knew right away that something was wrong. They had found a mass in her abdomen and her bloodwork indicated tumor markers.”
Amelia needed a biopsy to confirm her diagnosis. Her parents said the two-day wait for pathology results was “excruciating.”
Then they got the news: Amelia had a stage IV germ cell tumor in her abdomen that had spread to her lymph nodes and liver. Germ cell tumors typically develop in the ovaries or testicles, though they can grow in other parts of the body. Germ cells are also called reproductive cells.
“It was a complete shock,” says Amelia’s mom, Michelle. “It felt like the floor fell out from beneath us. My mom passed away from ovarian cancer, so hearing that my daughter had cancer was the worst thing. We were devastated.”
Amelia’s cancer is rare in children her age.
“Malignant germ cell tumors (MGCTs) account for only 3% of all tumors in children under 15 years of age and are more common in patients 15 to 29 years of age,” says Dr. Erin Trovillion, a pediatric hematologist/oncologist at Levine Children’s Cancer & Blood Disorders.
Amelia’s treatment plan
When it came to Amelia’s cancer care, her parents didn’t hesitate to choose Levine Children’s.
“I believe in Levine Children’s mission because I’m a teammate and have seen the work these care teams do on a day-to-day basis,” says Thavone, a talent acquisition consultant and co-leader of the Asian Heritage & Allies System Resource Group at Atrium Health. “We’re top-ranked for pediatric cancer care by U.S. News & World Report so I knew we were in good hands.”
Amelia enrolled in a clinical trial through the Children's Oncology Group (COG). This National Cancer Institute-supported clinical trials group is the world’s largest organization devoted exclusively to childhood and adolescent cancer research. For her treatment, she underwent chemotherapy for three months, followed by surgery to remove the tumors. Each round of chemo required a one-week stay in the hospital.
“Through clinical trials, we are constantly trying to improve outcomes and decrease side effects for our pediatric patients,” says Trovillion.
The family had just moved to North Carolina and didn’t have local relatives, so they were grateful for the support of their new friends, colleagues, medical team and church community while Amelia went through treatment.
“Thank you from the bottom of our hearts,” says Thavone to Amelia’s care teams. “You are her guardian angels who took us in as family. We were new to the area and new to the company and you held our hand in every direction.”
Amelia’s survivorship care and prognosis
Amelia completed treatment in March 2020 and is now in remission.
“Her prognosis is fantastic,” says Trovillion. “We will monitor her for any long-term side effects from her chemotherapy and make sure she continues to grow and develop normally.”
Amelia has routine bloodwork every six months and visits the survivorship clinic at Levine Children’s yearly.
“Patients meet with the survivorship team within one month of completing their anti-cancer therapy to begin discussions and planning around life after cancer,” says Dr. Jennifer Pope, a pediatric hematologist/oncologist at Levine Children's Cancer & Blood Disorders. “The team works with patients and caregivers to help them re-establish care with their pediatricians, dentists and other medical specialists, help with school reintegration, and validate the wide variety of emotions that are a very normal part of finishing therapy.”
“All of this guidance is patient-centered and specific to the type of cancer and treatment the patient received, the patient’s family history and the goals of the patient and caregivers,” says Pope. “Our aim is that every childhood cancer survivor be the healthiest, most content and successful person they can be given the treatment they needed to cure their cancer.”
Amelia is engaged with other supportive resources at Levine Children’s, including neuropsychology and occupational therapy. Amelia’s parents say her love of art stems from her time at Levine Children’s, where she had access to a variety of art projects.
Amelia’s future is bright
Now, Amelia is back to her active, healthy self.
“Seeing her jumping on the couch and doing somersaults – the same thing she was doing the night we found out about her cancer — it’s surreal,” says Thavone. “She’s come a long way. It’s so amazing how she turned out to be.”
His encouragement for other families with children going through cancer treatment: “There’s help, hope and genuine care at Levine Children’s. You’re not in this alone. Ask questions. If you don’t know, you have to ask. And finally, be confident and have faith.”
Amelia has big dreams for the future. She hopes to become a doctor or nurse to help other kids like her. She’s also passionate about writing, painting and drawing, so she may pursue a creative career. Truly, for the brave and imaginative Amelia, the sky is the limit.
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