When you reflect on 2020, what memories come to mind? The COVID-19 pandemic?
Quarantining? Toilet paper shortages? The Johns family will always remember 2020 as the year they received the devastating news that Marley, their six-year-old daughter, had a baseball-sized tumor in the middle of her brain.
Following Marley’s heartbreaking diagnosis that August, the Johns family soon became acquainted with the Dragonfly Foundation, a Cincinnati-based nonprofit organization that provides essential assistance to patients and their families affected by pediatric cancer.
Marley’s Journey
Teresa Johns, Marley’s mother, had noticed some subtle changes in her young daughter. Due to the pandemic, however, it took several attempts for her to see a doctor and talk about her concerns.
“Doctors only wanted to see patients who needed urgent care, and what we were describing to them about Marley didn’t justify a visit,” Johns says. “But my ‘mom alarm’ kept going off, so I kept calling other doctors. Finally, a neurologist at Cincinnati Children’s Hospital listened to us.”
Once the tumor was discovered, Marley had an emergency craniotomy. Unfortunately, the tumor grew back quicker than anticipated and she received another craniotomy five weeks later and multiple surgeries thereafter. “Marley has undergone more types of therapies than I ever knew existed. Due to her specific tumor type, we will never get to hear the word ‘remission’,” Johns adds.
The Johns family struggled to adjust to the pandemic-induced restrictions that limited hospital visitors and imposed other strict protocols. “Our family very quickly moved from seeing each other all day every day to my husband, Billy, and I rotating with each other every 24 hours,” Johns recalls. “Someone had to be home with our son, Will.
“Due to COVID, hospital staff and support resources were very limited, so it made this not only a stressful and scary time, but it was also very lonely,” she adds.
In the midst of that challenging time, the Johns family was introduced to the Dragonfly Foundation.
“Dragonfly found us. I say they found us because they sought us out when everything else was closing down,” Johns says. “We received their Big Blue Care Bag of hospital necessities and that began a priceless relationship with this wonderful organization.”
“We like to bring normalcy to our Dragonfly families; take away their burdens, if possible,” says Zak Geier, Director of Patient & Family Relations at the Dragonfly Foundation. “We especially like to focus on the family as a whole. It’s not easy for the parents and siblings of the patient. They always have to put on a brave face. So, when there is an event, we include the entire family.”
During Marley’s stay in the Pediatric Intensive Care Unit (PICU) at Cincinnati Children’s Hospital, Dragonfly arranged a virtual meet-and-greet with various FC Cincinnati players. They extended an invitation to Marley’s brother, Will Johns, to participate. The event proved to be a welcome distraction.
“It was the first time Marley and Will had gotten to see each other in weeks,” Johns continues. “It was also the first time that something positive happened for Will since his little sister’s diagnosis.”
If you ask either Marley or Will about that particular time, both of them will say, “That’s when we met Nick Hagglund!” Marley doesn’t think about missing the beginning of first grade. Will doesn’t remember that his mom had to miss his soccer game and game-winning goal because it was her turn to be at the hospital. “Dragonfly gave us these moments of joy amidst the chaos and stress,” Johns says.
Earlier this year, Cincinnati Music Hall hosted Dragonfly’s 12th annual Grand Gala. The Johns family was honored as the organization’s featured family. “The Johns family story really resonates with Dragonfly. We were able to help the entire family through their journey, not just the patient,” says Christine Neitzke, Dragonfly Foundation Executive Director. “Their story also describes our mission of supporting pediatric cancer families and patients. We thought it was best to share their story and select them as our featured family this year.”
The Grand Gala raised more than $389,000 for Dragonfly’s programs and services, exceeding all previous fund-raising efforts. “We are so grateful to our supporters,” Neitzke notes.
The Dragonfly Foundation offers multiple programs to support patients, such as the “Big Blue Care Bag,” the “I Am Still Me” program that helps manage chemotherapy side effects and hair loss, and the “Adopt A Family” initiative for holiday assistance. The Foundation’s patrons provide support for all of its programs.
“Dragonfly is the one thing that pediatric cancer brought into our lives that isn’t stressful,” says Billy Johns, Marley’s father.
The Johns Family is among the 7,000 individuals who have received assistance from the Dragonfly Foundation to relieve the emotional, relational and practical difficulties caused by cancer.
“Our families proudly identify as Dragonflies, and once a Dragonfly, you are a Dragonfly for life,” Neitzke says.
As for Marley, the outgoing nine-year-old is enjoying childhood and her tumor scans have been stable since January 2021.
Can you help The Dragonfly Foundation with its mission to support children fighting cancer? Visit Dragonfly.org to donate or find more information.