Lori

The study Lori’s daughter participated in was “a confirmation kind of study” of a special treatment track for people with Down’s syndrome and leukemia. When the doctor told Lori he was doing the study to continue research he had done on effective treatments for children with Down’s syndrome and leukemia, Lori knew she “could have said no… But to sign up to give my information to him to continue to work and confirm that, by all means I'm going to help him do that… he found protocol that's probably saved my daughter. So, he can certainly take all the data he wants from me.” Lori appreciated receiving a roadmap of the study treatment so she and her daughter could move step by step through the treatment phases: “For somebody like me who needs to be in control of something, or else I was losing it, this was fabulous because I could go, "Okay, where's the blood work? Okay, she got..." and I could pretend to be a doctor.”

Lori wishes that studies could help parents understand what to focus on: “Where there's a possibility to take it from science land into parent land would be really, really helpful--and it was still--it was very sciency, there was probably two-thirds of the pages I didn't know what it was, but it was like, "That doesn't matter, this doesn't matter, you look here, focus on this part," and that's the way that should be."