When Michele’s daughter Tara was first diagnosed with Ewing’s sarcoma just after her 4th birthday, she had a less than 20% chance of surviving the next five years. Thanks to the clinical trials and new treatment options developed through research funding, Tara recently celebrated her 14th birthday.
For ten years, we have navigated a system that heartbreakingly doesn’t place a priority on kids with cancer. We routinely meet highly capable and passionate researchers who face uphill battles to secure funding for their promising pediatric cancer research. We need to be doing more, not less.
Three-year-olds are known for their high energy, so when Tara was so lethargic one morning that she couldn’t get out of bed, Michele was alarmed. Stroking her daughter’s back, Michele felt a lump on her left scapula. They visited Tara’s pediatrician’s office and an orthopedic specialist to try to find an answer, but it wasn’t until they went to the emergency room during a family vacation when her daughter spiked a fever that they understood it was likely cancer. Two weeks later, they had a formal diagnosis.
It’s been ten years of navigating cancer treatments, and Tara continues to defy the odds. She recently started 9th grade and figure skates nearly every day, even during treatment. She’s been involved in three clinical trials and has undergone chemotherapy, radiation, and a bone marrow transplant. As a follow-up to her first clinical trial, she received immunotherapy for 4 years – underscoring the importance of continuous, stable funding to truly assess promising research.
As with many cancer journeys, the expectation is to continue trying new treatments to always have another option on the horizon. Because there hasn’t been a new drug approved for Ewing’s sarcoma in more than 50 years, Tara is currently taking a drug approved for a different pediatric cancer. Michele expressed concern about research funding cuts because there are already too few dollars dedicated to pediatric cancer: “It’s hard for these scientists to get funding from pharmaceutical companies for any pediatric cancer research. Unfortunately, there isn’t enough volume for pharmaceutical companies to fund it. That’s why NIH needs to fill the gap.”