September is childhood cancer awareness month: a month to honor the over 14,000 children diagnosed with cancer in the United States each year. Just like Maddy, Zane, Violeta, Thomas & Vivienne and Legend.
And, it’s important we share why we are dedicated to going 🎗️gold🎗️ in September, the month that Maddy was diagnosed with infant Leukemia two years ago. We know that it’s our job to change the narrative: childhood cancer is NOT rare. And, we MUST talk about equity and access when we talk about childhood cancer.
🎀There are approximately 70 potential life years lost on average when a child dies of cancer.
🎀Cancer is the leading cause of death by disease among children in the US.
This is according to the NIH: National Cancer Institute
Within this current reality, we remain hopeful thanks to the incredible community devoted to ensuring access and equity in the fight against childhood cancer. And, THIS is why we go gold in September. To raise awareness and funds for children and to find cures: because our children deserve better. They have a right to kinder treatments and a right to access the best care, no matter where they live or how they identify.
For the Madelyn James community and families like ours, the reality is even more daunting because:
✨Out of the 14,000 children diagnosed with cancer in the United States each year 4,000 live in poverty.
✨One in five children children diagnosed with cancer in the United States lives in poverty.
✨Social determinants of health (SDOH)—the conditions in the places where people live, learn, work, and play—are associated with profound inequities in cancer incidence, care delivery, and outcomes—including stark disparities in survival.
So we ask ourselves, "why do we need better, more effective treatments and more funding for childhood cancer?" I can share from my family’s personal perspective of when Maddy was going through treatment:
🎀Maddy didn't qualify for trials until she was a year old. Even if it might have been a life-saving or life-giving treatment.
🎀I had to personally crush her at-home chemo pills and give them to her when she was 10-12 months old through a syringe with apple juice: because they didn't make them in liquid form for children.Smaller hospitals we went to didn't have the small equipment needed for an infant.
🎀After her disease proved to be "too aggressive" for the protocol - I had to partner with doctors to come up with a roadmap "just for Maddy." What we like to call “precision medicine.”
🎀Maddy was taking some medicines that have been used for over 50 years! And the dosage was HIGHER than for adults because infant and childhood cancer can be more aggressive.
🎀When we finally found the right hospital, Maddy qualified for immunotherapy (CART and other therapies that are less toxic) and other cutting edge treatment options. It gave us the best months of Maddy's life. Maddy was so special. She was a fierce, funny and determined girl.
We miss her every single second. And that's why we so strongly believe that we MUST go gold in September and remain committed to our mission: to increase access and equity in pediatric cancer.
We hope that you feel full of hope: that TOGETHER we can increase funding for childhood cancer and make magical memories for families.
Help us Go Gold this September! You can:
✨Purchase items from Studio Olive (our amazing partner who is donating 20% of all funds this month to Madelyn James Foundation and the Warrior Mama Project), the owner is also a cancer parent.
🎀Join our Bow Society and help pay the rent for a family each month.
🎗️Make a one-time donation to support our mission.
💜Save the Date for our Philly Bow Bash: Saturday, November 9th
Thank you,
Jackie & Dan & Hannah
And, the Madelyn James Board
PS: All research about childhood cancer was found through the NIH: National Cancer Institute and the BONA LAB Pediatric Oncology Health Equity Research