September is Childhood Cancer Awareness Month. On August 17, 2016, my youngest son, Finn was one of the unfortunate ones to be diagnosed with a rare form of cancer. He was just 20 months old. After a month of sickness and mysterious pain, doctors found a large, rapidly growing tumor inside of his bladder, called rhabdomyosarcoma (rhabdo).
Over 2.5 years, he endured three relapses, aggressive treatment, nine different chemotherapies and seven cumulative weeks of radiation. Some weeks, it was four drugs in one day, and others it was five consecutive days of chemo. He underwent four major abdominal surgeries. By the end, he had lost his bladder, prostate, front pubic bone, lymph nodes, part of his colon, most of his rectum, and his ability to walk – all for the chance to survive.
Finn was out of options and we ran out of time. The cancer was growing so rapidly and had spread throughout his entire abdomen. He took his last breath on this earth: on December 2, 2018.
It was the worst day of my life.
While I became part of ‘the worst club in the world’, I also gained a community of advocates who are changing the world. We ask the hard questions. We question why these cancers do not have the cures they need. Why must patients endure such harsh, barbaric treatments that leave us poisoning the whole body and cutting organs out and limbs off as we chase a cure?
Is that the best we’ve got today? Why isn’t there more funding? Why isn’t there more research? Less toxic treatments? Why does a ‘rare’ cancer diagnosis feel like a death sentence?
I spend hours on the phone every week with patients/caregivers, clinicians, researchers, agencies, organizations, all for one purpose – to get everyone working together to save lives! Collectively, we cry out… this is not ok. I repeat, THIS IS NOT OK! The bottom line is, it doesn’t matter how rare it is. If one person dies, if one child dies, if your loved one dies…
It’s ONE TOO MANY.” 💔
Written by Finn’s proud mama Brandilee Sawyer.
Author: Mile High Mamas
