Alison and Matt

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.”