Cristy
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Cristy and her family were on a trip to the West coast when her daughter started experiencing atypical bleeding and lethargy. Shortly after, at 13 years old, she was diagnosed with Leukemia. As soon as “they had the results,” they started treatment and were offered an induction therapy clinical trial opportunity with The Children’s Oncology Group. Cristy and her husband “chose to” join because they were told they “Could change” their “mind at any time” and “there really wasn’t a huge difference” between a normal course of treatment and the trial, aside from an extra month of care. Cristy also did online research and asked questions of a good family friend, who is a childhood oncologist, and having “someone to talk to” about it helped them make an informed decision.
As a parent, Cristy recognizes a flurry of questions pop up in your head when you “hear the word trial or study” and wonder “if it’s a bad thing” or “you think ‘if I’m in it . . . is my child going to get a different treatment than if I’m not?’” Cristy was able to make the best decision for her daughter by “having all that discussion with the doctor” which is “really important to understand.” Cristy didn’t feel “pressured at all” to decide, despite the need to start her daughter’s treatment right away. It turned out with the induction therapy trial “there wasn’t any difference in that first month” so they enrolled their daughter knowing they could “always pull out” which was “helpful to know.”
Cristy says it’s hard to make decisions about clinical trials when new to pediatric cancer.
Cristy says it’s hard to make decisions about clinical trials when new to pediatric cancer.
What do you feel in general about that, sort of, idea of being part of a study or a clinical trial?
I think it's interesting. Because if you don't know a lot, and you're completely new to that world, as most parents are, when you hear the word study. You think, "If I'm in it, am I going to get something different?" Or, “is my child going to get a different treatment than if I'm not in it?” Again, I think there is that feeling, like you have to make that decision right away. But, you can always pull out, which I think is helpful to know.