Sharonda

At 16 months old, Sharonda’s son started acting “really different” and developed a persistent fever. He has Down syndrome and was recovering from recent open-heart surgery, so Sharonda wasn’t sure if his symptoms were related to the surgery or something else. Nine days later, after several trips to the hospital and “one test after another,” he was diagnosed with acute myeloid leukemia. Within a week of being diagnosed, Sharonda’s son was offered the opportunity to participate in clinical trials. Sharonda felt the providers “tried their best to explain everything to us, and to predict what could possibly be the outcome” with the trials. She appreciated how “informative” they were but was mostly focused on wanting them “to save my kid.” When considering whether to participate, it felt “scary” because “they’re so unknown” especially when it comes to outcomes. Sharonda’s initial reaction to the trial was “you’re going to try what on my kid?” She knew she had to “start somewhere” so agreed to have her son participate, and thought “if he made it through, great. If he didn’t, they learned, and they learned something that can help the next child.”

She felt the health care team was “really good at explaining” the study specifics and knew “if I didn’t understand something I could always ask.” Their care team explained “if you don’t do the trial then we’ll do A, B, C and D. If you do the trial, we can do, you know, we’ll do A, B, C, and D . . . And if you feel like you just want to stop it, then we stop.” With that in mind, they agreed, and Sharonda’s son was “included in a couple” of trials. Regarding outcomes of the trial, they didn’t follow up or hear about results because they “walked away from cancer and just didn’t look back.” Sharonda was motivated to sign her son up for a trial because she knew “it’s not just my son’s life. And he’s not the only one out there fighting.” The “best part” for them was “knowing that you’re helping other people.” For Sharonda and her family, the “best” thing they could do was “help other families know what could possibly happen, what’s coming next, you know, this is what happened to us.” Sharonda recommends families in a similar position “make sure they’re knowledgeable” and find other parents like you “that wouldn’t mind going and talking…”