In 2013, when Ava Edwards was just 8 years-old, she started showing some alerting symptoms, including bruising on her hips and loss of color. After visiting the doctor about the bruises, she was diagnosed with Chronic Myelogenous Leukemia (CML), a type of blood cancer, which normally occurs in adults. The following year, Ava was also diagnosed with Acute Lymphoblastic Leukemia (ALL), which is more often seen in children.
“Initially, I did not tell any of my friends that I was sick, but as my illness got more visually apparent, I told a few of my close friends from school. Since we were so young, a lot of them didn’t really understand what I was going through” says Ava.
Not only was this experience difficult for Ava, it also affected her twin sister, Abbie. “At the time, I understood that Ava was sick, but I don’t think I understood the severity of the situation,” says Abbie. “It was hard because Ava missed a year of school while undergoing treatment. I had to kind of explain to everyone why she wasn’t in school.”
Despite the sudden change and disruption to their lives, Ava and Abbie’s parents were committed to keeping their life somewhat normal. Susan and Devin Edwards chose a divide and conquer strategy, as Susan stayed with Ava at the hospital and Devin stayed home with Abbie, visiting the hospital frequently.
Upon the ALL diagnosis, Ava’s only treatment option was a bone marrow transplant (BMT), which required heavy duty chemotherapy and full-body radiation. Despite having an identical twin, whose bone marrow was too similar to Ava’s and, therefore, deemed inadequate, Ava looked to the bone marrow registry to find her life-saver.
“It was kind of scary to be told you need a bone marrow transplant, but I was really excited when I found out I had multiple potential matches and they had narrowed it down to just one perfect match” Ava says.
In September 2014, Ava received a bone marrow transplant from a complete stranger in California. Now, at 15 years of age, Ava is considered cancer-free and cured! While she has not been able to physically meet her donor in person, they regularly Skype and email to stay in touch.
After Ava’s transplant and once she was well enough to leave the hospital, Ava had to remain within a 5-mile radius of Johns Hopkins Hospital for at least 2 months. Since their home was at least 30 minutes away, the family began renting a house on Wolfe Street in Baltimore. Many evenings and weekends, Devin, Abbie and the family dog, Tucker, would stay in the rental house with Susan and Ava.
Having her family and dog together helped to bring some normalcy back to Ava’s life, which really lifted her spirits. She also cherished the many thoughtful gifts and acts of kindness from family, friends, and strangers she received while in the hospital. While she was recuperating, she decided that she wanted a way to give back to other children going through similar health battles, while also lifting their spirits, and, with that, Ava’s Flavas was created.
“I came up with the idea for Ava’s Flavas because I was lonely in the hospital and I didn’t have anyone I could talk to that was the same age as me.” says Ava.
“We started Ava’s Flavas as a nonprofit organization to not only brighten the patient’s day, but also support their families and caregivers, too” says Susan, Ava’s mother. “When Ava was in treatment, we felt completely isolated. We didn’t know anyone with a sick child, so we didn’t have anyone to talk to about our experience and what we were going through. Everyone was reaching out to offer assistance, which was great, but we didn’t have a support network. With Ava’s Flavas, we are able to be that support network for others.”
“It makes me really happy to be able to help other people that are going through what Ava went through. It feels good being able to give back and see the smiles on their faces” says Abbie.
“This whole journey has completely changed our outlook on life. Every little thing that used to upset us seems so trivial now. We realized family is everything and we realized we wanted to have more kids. So after Ava’s transplant and with more children, it was kind of like a new chapter of our lives began” says Susan.
As 15 year-olds in high school, Ava and Abbie both agree this experience has profoundly influenced what they want to do in the future. Ava aspires to be a pediatric oncology nurse practitioner and Abbie plans to become either a surgeon or oncologist.
Thank you Ava, Abbie, Susan, and Devin Edwards for sharing your story!
If you are interested in registering for the bone marrow, visit www.theregoesmyhero.org/get-swabbed/ to receive a swab kit in the mail. If you would like to host your own bone marrow registry drive, please contact There Goes My Hero at 443-339-4375 or email us at firstname.lastname@example.org.