This holiday season, we recognize the promise that our research holds for childhood cancer heroes and their families. And at cc-TDI, the parent partnership is pivotal to our research mission. We invite you to join us this month as we share inspirational stories of our heroes like Abby whose journey is generously shared by her parents, David and Andrea, in her honor.
When we first noticed the small swelling on Abby’s hand, we never could have imagined where that little bump would lead. What started as a seemingly benign issue became the beginning of a life-altering journey that changed our family forever. Abby was diagnosed with Stage 4 Alveolar Rhabdomyosarcoma (ARMS) just a week before her 16th birthday, a devastating blow that we could never have anticipated.
The doctors were blunt with us: the cancer had spread. The swelling we’d noticed on her hand turned out to be the primary site, but scans revealed that it had already spread to Abby’s lungs and bone marrow, with no visible signs anywhere else. As we sat with her doctors in the sterile, white-lit hospital room, we were told something that would haunt us for the rest of our lives: no one in New Zealand had survived a Stage 4 diagnosis of ARMS.
At that moment, we faced a decision that no parent should ever have to make. The doctors presented us with two options: we could follow the standard treatment protocol, which hadn’t changed in decades, or we could participate in a research study that involved 9 aggressive rounds of chemotherapy and radiation. We were warned that this experimental treatment could be worse than the cancer itself. But with so little hope, we felt like we had no choice. We chose the study program.
Before her diagnosis, Abby was always a bit reserved, someone who kept her cards close to her chest. Many people questioned how she would handle the grueling, often debilitating treatment schedule that came with ARMS. But Abby’s approach was simple, though profoundly wise: “Don’t talk to me about tomorrow, Mum. Tell me what I have to do today!” Every single day became her mantra. Abby took each day as it came, never giving in to fear or the uncertainty of the future.
Abby was more than just a fighter. She was a passionate student who loved school. Despite her treatment, she worked tirelessly to keep up with her studies. An avid reader, Abby had a natural talent for music, playing the piano since she was five and picking up the flute at seven. She had a deep love for animals, crafting, puzzles, and playing strategic board games, where her competitive streak helped her push through some of the toughest moments in her treatment. Her spirit never wavered, and it became clear that the strength she showed was not just physical, but emotional and mental too.
For 15 months, Abby’s determination paid off. She showed no evidence of disease. But we all knew this battle was far from over. Then one Saturday morning, Abby began experiencing severe headaches. By the end of the day, we were sitting in a doctor’s office at Starship Children’s Hospital in Auckland, being told that Abby had large tumors in her brain, and she had only days to live. We were devastated. Our sweet, strong daughter, who had fought so hard, was running out of time.
With heavy hearts, we made the decision to begin palliative chemotherapy and radiation. This new treatment gave us nine more precious months with Abby. She fought through the pain and the exhaustion, never giving up, always determined to make the most of each day she had left. In the end, Abby passed away peacefully in Starship Hospital at the age of 18. It was the hardest thing we’ve ever had to endure.
After Abby’s passing, we found ourselves asking how we could honor her memory and make a difference for other children battling cancer, especially those with rare cancers like ARMS. We knew that Abby would have wanted us to help bring hope to families going through what we had just experienced.
After much research, we decided to donate to the Children’s Cancer Therapy Development Institute (cc-TDI). This organization resonated with us for many reasons. Their focus on improving and extending the lives of children with rare cancers like ARMS, advancing cutting-edge research, and developing less invasive treatments was exactly what we wanted to support. More importantly, cc-TDI is deeply committed to collaboration with families who are affected by childhood cancers. They understand the challenges families face and work tirelessly to make a meaningful difference.
We were particularly moved by their comprehensive approach to childhood cancer. From advancing treatments to understanding the causes of cancer, to fostering hope where there was none before, cc-TDI was doing work that aligned with everything we believed in. Their commitment to not only finding cures but also providing ongoing support to families touched our hearts deeply.
As we continue to navigate life without Abby, her spirit remains with us every day. She taught us the power of resilience, the importance of fighting for what matters, and the value of living in the moment. Abby’s favorite saying was, “Don’t let the world change your smile, let your smile change the world.” Even in the darkest of times, Abby’s smile lit up every room she entered. And while we miss her more than words can express, we are proud to carry forward her legacy by supporting causes like cc-TDI that are working to change the future for children like her.
If Abby’s story can help bring about even a small change, if our donation can help bring hope to another child or family, then we know it’s a step in the right direction. And we’ll always carry Abby’s light with us, as we continue her fight in our own way.
Please consider making a gift in Abby’s honor by supporting cc-TDI’s end of year campaign. Gifts made through December 31st will be triple matched up to $40,000.
