Chelsi Weber: The Systems in Place Are Blocking Children from Getting Effective Treatment
Chelsi Weber, Family Nurse Practitioner at Prevea Health, shared a post on LinkedIn:
“Before Owen got cancer, I had followed a few children’s cancer stories and would think about how sad it was. How terrible that these children got cancer. Cancer felt like this big, invincible beast. Doctors were trying everything and it couldn’t be beat.
And then I lived it. I dedicated my life to researching- reading articles on pubmed, looking up trials, emailing doctors, clinics in the United States and abroad. And it doesn’t feel like a big, invincible beast anymore. If feels like the systems in place are blocking children from getting effective treatment.
That’s the part I struggle with the most.
There are drugs that can target the mutations Owen had. There are tests that can look for those mutations. There are likely ways to hypothesize which children will respond to MAP chemo and be in the 60% of survivors. There are tests to look for circulating tumor cells. There is so much data that can be gathered, and yet it’s not.
Owen didn’t get ANYTHING until his cancer was a big, invincible beast. Until we found out that he wasn’t part of the 60%.
It’s this hampster wheel of MAP, ifos, etop, gemcitabine, cabo.. things that have been tried and don’t work.
I didn’t know I had to advocate for more until we were already behind in the race. I hope some day children with all tumors will get these things, and not have to wait until their chances of survival are close to 0.”
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