When I imagined being a mom - I imagined picnics on sunny days, glittery tiaras glistening in the light of birthday candles, and sticky hands holding mine while walking to the nearby park. I anticipated patching up skinned knees with colorful bandaids, kissing boo-boo's, and running a cool hand across an occasionally fevered brow. There was no way I could have imagined that one day I would walk into a medical center to sign my 9-year old daughter into a clinical dosing trial for a drug never before used on children. And that I would feel more gratitude and relief than fear and trepidation.
This piece has been entered in the Patients Have Power Writing Contest run by Clara Health designed to raise awareness about clinical trials. I am passionate about this cause and hope it will help raise much needed awareness about the power of breakthrough research.
That scenario was especially unlikely given my own history as a DES Daughter - a history that includes a drug given to pregnant women that caused catastrophic health problems in the fetuses exposed in utero. As one of those babies born to that legacy I have suffered first hand from drugs not properly, fully, and transparently tested. I also now know what it means when patients have power. When clinical trials are patient-centered and the research transparent. And when informed consent is educated consent.
Science has changed since I was born - and I am deeply glad it has. My oldest daughter had a condition that until very recently had no viable cure. As her disease progressed - I found myself having discussions with doctors about teen and young adult years that could include ineffective noxious drugs and organ transplants. I had trepidation about putting my 9-year old in a clinical trial, but total confidence in her research team. Being a clinical dosing trial, she was among the first group of children to ever be researched with this class of drugs.
The first day of my oldest daughter's clinical trial was also my youngest daughter's birthday - friends met us at the hospital to cheer on the swallowing of the first dose of trial meds and then joined us at home later that same day to eat birthday cake. That day - we entered the world of clinical trials, biopsies, and birthday cakes. Participation in the clinical dosing trial has ensured that my daughter will live to see and celebrate many years of birthdays.
And while I will always be mindful about the use of any medications with my children - I have experienced first hand the incredible power and promise of emerging research.
My daughter is cured.
And that is why I am delighted to share our story and to work to support the efforts of www.clarahealth.com to ensure that patients know that they have power. We can and will change the world.
I am mermaid and rebel - a mama to two - I believe in art, music and magic and the rest I cover up with glitter and tattoos.