Alison and Matt
See full story
Alison and Matt’s energetic and sociable daughter started acting lethargic, was cold and pale, and experiencing persistent fevers. They took her to see her primary care physician, and after some blood work, a trip to the hospital, and a bone marrow biopsy, she was diagnosed with acute lymphocytic leukemia. Following their daughter’s diagnosis, Alison and Matt were approached about participating in clinical trials and agreed “to everything but one of them.” They kept “track of her progress” over time as part of the trials, however after a while offered another trial because “they wanted her to take less medicine.” Their providers explained that they were “trying to figure out if we give less medicine, we’ll have less side effects,” especially because some promising new research supported the idea that kids “don’t need all the chemo” they’re often given.
They did not take this decision lightly, and “spent a lot of time” talking things through in addition to “really cross-examining” their provider on “the science and what we knew and what the numbers meant and everything.” Alison and Matt decided they didn’t “want any more of that study” because they would rather “stick with the 90 percent” than the unknown. Ultimately, for them “it wasn’t worth it” and they didn’t want to “be the person that says you’ll do it and then when you don’t get the category you like, you back out” because that would mean “the study doesn’t give accurate results.”
Alison and Matt did not consent to a trial which would result in a lower chemotherapy dose for their child.
Alison and Matt did not consent to a trial which would result in a lower chemotherapy dose for their child.
Do you remember if you were offered the opportunity to take part in any clinical trials or experimental treatments?
Matt: We were, I think we agreed to everything but one of them maybe.
Alison: We agreed, and we were on the trial, but when it then came time where you had to make a decision about whether you—there was like a certain—so, they were always keeping track of her progress or whatever as part of a trial. I think all the treatment is sort of part of a trial, but then there was a part where it was going to really be a trial ...
Matt: Well, it was because they wanted her to take less medicine, and they were like, “Oh, we’re trying to figure out if we give less medicine. We’ll have less side effects, because it looks like according to this one study, you don’t need all the chemo we’re giving them. You know, we’re giving this, ‘cause we know it works,” which makes sense. They’re like, “So do you want to be part of that study?” And we were like, “We don’t want anymore of that study. We’re going to stick with the 90 percent,” with--you know, but other, you know, and that was hard to come up with, ‘cause we understood ...
Alison: We spent a lot of time ....
Matt: ... the benefits of people being part of studies. That’s how we got to 90 percent in the first place, right? So, but I was like, “I don't know if I can deal with giving her less medicine and then something happens.” I would, I don't know what I would do. So, we said no to that.