In 2014, after their 20-month-old son, Leo, was diagnosed with neuroblastoma, parents Sarah and John Thompson were thrust into an unimaginable reality. Faced with the uncertainty of their son’s future and the harsh realities of childhood cancer treatments, they did not simply lament the challenges; instead, they took action. They founded the Leo’s Legacy Foundation, which has since raised $300,000 to support clinical trials aimed at developing less painful and more effective treatments for children battling cancer.
The Thompson family’s ordeal began when Sarah noticed Leo limping. Initially dismissed by their pediatrician, their concerns grew, leading them to an orthopedic specialist who suspected a leg infection. However, after several hours of waiting in the hospital, they received the devastating news: “I believe your son has neuroblastoma,” the doctor revealed. The term “cancerous tumors” echoed in Sarah’s mind as she left the room in disbelief, her world forever altered.
The following day confirmed their worst fears—Leo was diagnosed with stage IV neuroblastoma, meaning the cancer had already spread to his lymph nodes and beyond. This is tragically common, as 80% of childhood cancers are diagnosed at advanced stages. After a sleepless night of research, Sarah whispered, “He won’t die, will he?”
The prognosis was grim; their child had a 50% chance of surviving, and a long, arduous fight lay ahead. Nevertheless, the Thompsons clung to hope and committed to supporting Leo through chemotherapy, surgeries, stem cell transplants, radiation, and antibody therapy. While they were thankful for the skilled medical professionals, the treatment options remained limited. Leo endured grueling therapies, emerging weak, pale, and in excruciating pain.
John expressed his frustrations in a heartfelt piece, detailing the agony of watching Leo suffer from constant nausea and debilitating side effects of the treatment. The aggressive chemotherapy drugs were primarily designed for adults, resulting in permanent hearing loss and dental decay for Leo. He would never reach his full height or have children of his own. While these concerns paled in comparison to his survival, the Thompsons felt helpless witnessing their son’s torment.
“I dread bringing him in for treatment every time,” John admitted, knowing the heart-wrenching look Leo would give him as they approached the hospital. The couple observed their son’s relentless suffering and became determined to find better alternatives. This led to the creation of Leo’s Legacy Foundation, with the mission to advocate for innovative pediatric cancer treatments that reduce suffering and improve outcomes.
Statistics reveal that 1 in 330 children will be diagnosed with cancer before age 19, making it the leading cause of death among children—more than cystic fibrosis, congenital birth defects, asthma, diabetes, and AIDS combined. Shockingly, only 1 cent of every dollar allocated for cancer research goes to childhood cancer, representing less than 4% of the entire cancer research budget. “It’s simply unfair that over the last 20 years, only three cancer medications have been approved specifically for children. We are determined to change that,” Sarah emphasized during our conversation about their foundation’s efforts.
Since its inception, Leo’s Legacy has funded multiple clinical trials aimed at finding treatments specifically tailored for children, allowing them to endure less pain and enjoy a better quality of life. One of the initial trials explored immunotherapy, which harnesses the body’s immune system to target and eliminate cancer cells while preserving healthy tissue. This approach is seen as more natural and less toxic than traditional high-dose chemotherapy.
In another groundbreaking initiative, the foundation supported the Applesauce Trial, designed for a young patient, Emma, who was diagnosed with brain cancer and had limited treatment options. This innovative trial allowed for the testing of a new drug in a way that was suitable for infants, providing hope to the youngest patients.
Moreover, Leo’s Legacy also funded a unique stem cell transplant study that enhances safety and reduces pain by utilizing specially prepared cells from a parent. They addressed the dire need for effective treatments for DIPG, a pediatric cancer with no long-term survivors, by supporting trials using a promising new drug that optimizes treatment delivery.
Dr. Emily Roberts, an oncologist involved in these trials, expressed gratitude for the support from Leo’s Legacy, acknowledging that funding is critical to advancing innovative research and finding better treatment options for children.
After a grueling 14-month battle, Leo emerged cancer-free. However, the horrors of pediatric cancer left an indelible mark on Sarah and John, who are now devoted to ensuring that other children have access to better treatments. Their journey transformed from personal tragedy to a powerful movement for change. “Leo is just the beginning of this story,” Sarah declared. “This mission has become my life’s work. I will continue to fight, no matter where Leo’s journey takes us.”
In summary, the Thompson family’s commitment to combating childhood cancer through Leo’s Legacy Foundation exemplifies the power of resilience and hope. By advocating for innovative treatments and raising awareness about the challenges faced by young cancer patients, they are making a meaningful impact in the fight against pediatric cancer.