What does that even mean? A “rare” cancer likely means a death sentence. A “rare” gem has great value. How can the same word mean two very different things?
According to Merriam-Webster, rare;
1) is seldom occurring or found: uncommon
2) marked by unusual quality, merit, or appeal: distinctive
In the cancer community, we use “rare” to describe a type of cancer that is not common, that people have never heard of, or whose treatment options are limited or non-existent. Those who have been affected by a “rare” cancer feel anything but distinctive. They feel alone, forgotten, scared, and neglected. I could give you a bunch of statistics on “rare” cancers and their dismal treatment options, but I do better with feelings and emotions. The best way to do that is to share my story.
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 20 months old. After a month of sickness and chronic, mysterious pain doctors found a large, rapidly growing tumor inside of his bladder, called rhabdomyosarcoma (rhabdo). There are only 400-500 new diagnoses of rhabdo each year, compared to 235,760 new cases of lung cancer each year. Rare? It would feel so.
Over the course of 2.5 years, he endured 3 relapses consisting of aggressive treatment including 9 different chemotherapies and 7 cumulative weeks of radiation. Some weeks it was 4 drugs in one day, and others it was 5 consecutive days of chemo. He underwent 4 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.
After 3 relapses, Finn was out of options and we ran out of time. The cancer was growing so rapidly and had spread throughout his entire abdomen. Our last ditch effort was the use of two chemotherapy drugs, based on genomic testing, but the cancer spread and he continued to deteriorate. He took his last breath on this earth December 2, 2018.
That was the worst day of my life.
What I learned and witnessed in those 2.5 years set my soul on fire. 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 so desperately 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?
Hello? Is anyone listening to us….?
And then, I take a deep breath and roll up my sleeves.
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. What I encounter and experience is that “rare” cancer’s are anything but rare. There are patients diagnosed, relapsing, and dying. Every. Single. Day. Hundreds of them. Thousands of them. Finn. Francesca. Ezra. Devin. Rebecca. Trip. The names go on and on…
Collectively, we cry out… This is not ok. I repeat, this is NOT OK.
The bottom line…
It doesn’t matter how rare it is.
It doesn’t matter how many are diagnosed.
It doesn’t matter how many die.
If one person dies, if one child dies, if your loved one dies…
It’s ONE TOO MANY.
It may be Childhood Cancer Awareness Month, but it’s the first of infinite days that we can collectively and LOUDLY advocate for change to make all cancers survivable.
RARE ISN'T RARE, but successful treatments are. Please join the fight and help us advocate for change through our Rare Isn’t Rare Campaign.