Halfway through our clinical trial, I wanted to give up. I never thought I would feel that way. I was expecting to start the trial and see the positive effects of the drug. Then, we would hopefully wait for rapid approval by the FDA. That’s not what happened. Instead, as time progressed, I started thinking my daughter was on the placebo. If she wasn’t on the placebo but was on the drug, then the drug didn’t work, or it didn’t work for her. I wasn’t sure which of those three options was a more harrowing consideration.
The realization of being halfway through the trial and not seeing progress was exhausting. At each subsequent appointment, we were just going through the motions. It was a hard place to be. I wanted to quit. I wanted to stop taking her. She didn’t like going. Instead of hope for her, we felt angst.
The excitement had worn off. Now it had turned into more doctors examining her, more phlebotomists poking her, and more people talking about her, all for naught. At least that’s what it felt like. A.J., Maggie and I felt defeated. The hope we had for the clinical trial seemed like a distant memory.
We went back to our Airbnb. Since we had decided to stay near the beach, we went and walked around in the sand. Maggie was happy. The pressures of the clinic slowly vanished. Maggie was still a little girl with Rett Syndrome, but also a little girl who loved the beach. She is still a little girl with a zest for life. There is so much in life that she wants to do… now. We were only halfway through, and we knew it would be clinic visits that were just us being “data”. It was a hard pill to swallow.
Even so, I knew we couldn’t quit. AJ and I had to discuss the benefits of not quitting. I’m sure every parent wants to quit during the trial process… it’s hard. I’m sure every parent who doesn’t see positive effects wants to quit. I don’t blame them, because I felt the same way.
But we kept saying to ourselves, “Where would we be if everyone quit? Where would we be if parents didn’t put their kids in trials? How far behind would we be? How much further away from a cure would we be?” So, we decided that we would push through and make our trial experience as positive as we could.
We turned clinic visits into family vacations. We spent time at the beach, learned how to surf, found an incredible gluten free hamburger place, and discovered I loved ceviche. We knew that one day, it would all be worth it for everyone with Rett Syndrome. And until that day, we would find ways to make it worthwhile for us.
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