Ava Strong: One Mom’s Journey to Advocate for Better Childhood Cancer Treatments
From the time she wakes up to the time she goes to sleep, Ava is talking, singing, and dancing. She is a joyful, active child who loves to paint, color, and make crafts. Her world changed when at only four years old she started having frequent bouts of morning vomiting, which doctors thought could be from acid reflux or abdominal migraines. She later developed a localized headache in the back of her head. The headache prevented Ava from wanting to participate in her favorite activities; instead, she would spend most of her time laying down. One night her mother Kassi noticed Ava’s balance was off and decided to take her to the emergency room.
A CT scan revealed a halo orange-sized tumor in the back of Ava’s cerebellum. Three days later she had surgery to remove the medulloblastoma tumor.
Medulloblastoma has four subtypes and Ava’s tumor was group 3, the most aggressive form. Her family was grateful the tumor did not spread, and all the tumor was removed. However, she still required an aggressive approach to treatment. This led Ava to Children’s National Hospital to begin 6 weeks of chemotherapy and radiation, then 6 months of high-dose chemotherapy at Children’s Hospital of Richmond. She stopped treatment in June 2022 and her recent 3-month post-treatment MRI showed no evidence of disease.
Since Ava was diagnosed with brain cancer, her mom Kassi has used the power of social media to provide updates to their community and spread awareness. It started as a way to limit the overwhelming feelings that come with reliving the situation, but later became a space to advocate for other kids like Ava.
“Ava Strong started when she was first diagnosed. When you first enter this world, it is very overwhelming, and everyone wants to know what’s going on. I created the Instagram and Facebook accounts to have one source for anyone who wanted to know information. As people stumbled upon the Instagram and I grew stronger and angrier with the information, it became more of a platform for me to voice important issues,” says Kassi.
One way Kassi used the Ava Strong platform was by reaching out to celebrities to amplify the need for more childhood brain cancer research. Only one person responded—Emmy award-winning broadcast journalist, Anderson Cooper. His response was simple. He asked “what can I do?”
Kassi asked if Anderson would be willing to share their page to help spread awareness. He wanted to do more and asked to interview both Kassi and Ava about her pediatric brain tumor journey, the lack of funding that goes towards childhood cancer research, and the harsh reality of childhood cancer because of the outdated treatment options.
In his interview with Kassi and Ava, Anderson shared that he was ignorant on this topic and thought “kids must get the most cutting-edge treatment, and there must be huge research to be done in how to save the most innocent among us.” But he learned the complete opposite is true. Pharmaceutical companies aren’t incentivized to research and develop new drugs for the many rare types of pediatric cancers and government funding mainly benefits adult patients.
“If research is going to be done for these kids, it’s going to be through foundations like the Pediatric Brain Tumor Foundation,” shares Kassi. “It takes people getting involved with these types of organizations to get the funding we need.”