Lakelynn, pictured above, has been battling a rare sarcoma for half her life. She is currently enrolled in a clinical trial funded through the ALSF Center of Excellence program.
Above, Emily and Edie Gilger, together with their doctor, Yael Mosse, MD from the Children’s Hospital of Philadelphia share their remarkable survival story with guests at the 2019 Lemon Ball.
Eighteen months after completing treatment for osteosarcoma, Taylor, pictured above, relapsed.
By: Trish Adkins
Children with cancer face difficult paths through diagnosis, surgeries, treatments, recovery and survivorship. An estimated 15,590 children and adolescents (ages 0-19) are diagnosed with one of the several different types of cancer every year in the United States.
Five-year survival rates for childhood cancer continue to increase overall, but for some types of cancer, survival rates remain terrifyingly low. Currently, 84% of children diagnosed with cancer in the U.S. are alive at least five years after diagnosis. These survivors may suffer long-term health side effects as a result of the cancer treatments they received. Children who were treated for cancer are twice as likely to suffer chronic health conditions later in life versus children without a history of cancer.
But those statistics don’t tell the story of each of the individual children who fight cancer. These children all have hopes and dreams well beyond the oncology clinic. They have siblings and families and big plans for their future. Meet three of these real-life childhood cancer heroes:
1. Lakelynn
Six-year-old Lakelynn has been battling cancer for half her life. She loves horses, Barbies, singing, shopping at Target and hosting lemonade stands in her home state of North Carolina with one mission in mind: getting rid of childhood cancer.
Lakelynn knows firsthand how challenging being a kid with cancer can be. She is currently enrolled in an Alex’s Lemonade Stand Foundation (ALSF) clinical trial for a rare, inoperable sarcoma. Each month, Lakelynn travels from her home in North Carolina to Boston, MA for treatment.
Lakelynn is still searching for her cure, but the clinical trial has made it possible for her to go from being a little girl in pain to a little girl who loves going to school and celebrating Christmas with a big, beautiful smile.
2. Edie
When Edie was just 5 months old, she started having a severe upset stomach and trouble sleeping. Edie’s parents had a gut feeling this was not just a typical bug or stage of infancy.
Edie was diagnosed with stage IV neuroblastoma. Despite an aggressive treatment plan, Edie’s cancer continued to grow. Testing showed that Edie carried the oncogene called anaplastic lymphoma kinase (ALK). ALSF-funded researcher Dr. Yael Mosse had a clinical trial for children with the ALK gene. Edie’s mom Emily was also tested for the ALK gene. Emily carried the gene and later found out she, like Edie, had neuroblastoma. Both mother and daughter joined the trial.
Today, they are both cancer-free.
3. Taylor
When Taylor was 11 years old, she was diagnosed with osteosarcoma, a type of bone cancer. After nine months of treatment, Taylor was declared cancer-free. However, eighteen months later, she relapsed.
Her family was desperate for a cure. Taylor enrolled in a clinical trial at Texas Children’s Hospital. The trial was possible due to an infrastructure grant funded by ALSF. The trial worked. Today, Taylor is cancer-free and a practicing pediatric nurse.
Want more inspiration? Subscribe to the ALSF YouTube channel for inspiring videos, behind the scenes looks at special events and more.
