In the face of a devastating diagnosis, the Johnson family turned their grief into hope by founding a foundation dedicated to fighting cancer. When their 20-month-old son, Alex, was diagnosed with neuroblastoma, parents David and Sarah Johnson found themselves grappling with an unimaginable reality. Instead of succumbing to despair, they decided to take action. In 2014, they launched the Alex Johnson Cancer Foundation, which has since funded over $300,000 in clinical trials aimed at discovering less painful treatment alternatives for children battling this cruel disease.
The Journey Begins
The Johnson family’s journey into the world of pediatric cancer began when Sarah noticed her son limping. Initially dismissed by their pediatrician, their concerns grew when Alex reverted to crawling. After consulting with an orthopedic specialist, they were shocked to receive the devastating news: “I don’t believe your son has a bone infection. I think he has neuroblastoma.”
In that moment, Sarah’s world shattered as the implications of “cancerous tumors” sunk in. The next day, the diagnosis was confirmed—Alex was in stage IV neuroblastoma, meaning the cancer had spread to his lymph nodes and other organs. Tragically, this stage is common, as 80% of children have advanced disease at the time of diagnosis. Heartbroken, Sarah whispered, “He’s not going to die, is he?”
The Fight for Survival
The prognosis was bleak; doctors estimated a 50/50 chance of survival. The Johnsons held onto hope as they supported their son through a grueling regimen of chemotherapy, surgeries, stem cell transplants, radiation, and antibody therapy. While they were thankful for the skilled medical professionals, the treatment options were limited and extremely harsh. Alex endured therapies that left him frail and in excruciating pain.
David expressed his anguish in a heartfelt message, stating, “I feel a surge of anger and helplessness each time I see my son suffering. His eyes roll back from morphine meant to dull the pain, and he hasn’t been able to eat for days.” These moments left the Johnsons desperate for alternative treatments.
Founding the Alex Johnson Cancer Foundation
Recognizing the urgent need for more effective therapies for children, they founded the Alex Johnson Cancer Foundation. Their mission: to raise awareness about the inadequacies of pediatric cancer treatment and fund research for innovative solutions. According to childcancer.org, one in 330 children will be diagnosed with cancer before the age of 19, making it the leading cause of death for children. Alarmingly, only 1 cent of every public dollar goes to childhood cancer research, equating to less than 4% of the total cancer research budget.
“It’s unjust that only three new cancer medications specifically for children have been approved in the last two decades, and we’re here to change that,” Sarah remarked during our conversation about their foundation’s efforts.
Innovative Clinical Trials
Since its inception, the Alex Johnson Cancer Foundation has sponsored five clinical trials focused on developing treatments tailored for pediatric patients. The first trial focused on immunotherapy, which harnesses the body’s immune system to target cancer cells while sparing healthy tissue. Dr. Emily Roberts, a grant recipient at Bright Futures University, notes, “Immunotherapy is a more natural approach and could be less toxic than conventional chemotherapy, especially for children whose immune systems are more robust than adults.”
One notable trial, the Emmi Grace Applesauce Trial, aimed to find a more suitable treatment for infants with brain cancer. This trial allowed researchers to evaluate a medication using apple sauce, providing hope to the youngest patients who struggle to swallow traditional pills. Additionally, the foundation funded a groundbreaking immunotherapy trial that incorporated a stem cell transplant component, making the procedure safer and less painful for children.
The foundation also initiated a trial for DIPG (diffuse intrinsic pontine glioma), a pediatric cancer known for its grim prognosis. This innovative trial employs a drug called Panobinostat to optimize treatment delivery, offering renewed hope for children facing this aggressive cancer.
A Mission of Hope
After 14 months of intense treatment, young Alex achieved remission, but the Johnsons remain deeply committed to their cause. Their journey transformed from personal tragedy into a mission of hope and inspiration. The foundation has since provided support to 40 children who had run out of options.
“It’s true that Alex is the reason we started, but our mission extends far beyond him,” Sarah said. “This is my life’s work, my passion. No matter where our story leads, this is only the beginning.”
Conclusion
In summary, the Johnson family’s heart-wrenching experience led them to create a foundation that is making significant strides in pediatric cancer research. Through their efforts, they are not only providing hope to families but also advocating for change in how childhood cancer is treated. Their determination exemplifies resilience and serves as a beacon of inspiration for others facing similar battles.
For more insights into family planning, you can check out the at-home insemination kit mentioned in our other blog post, or explore helpful resources on pregnancy from the National Institute of Child Health and Human Development.