Danielle and Jeanne
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Around Christmas Danielle noticed her daughter was lethargic and experiencing atypical bruising, so she and her mother, Jeanne, took her in to the doctor. After some testing, they were sent to the Emergency Room and Danielle’s daughter was diagnosed with Leukemia at 8 months old. Danielle was approached about participating in a study that collects “long-term” data. As part of the study, Danielle and her daughter present to the Children’s hospital “twice a year instead of once a year, because they still need some kind of data” for the study. Being that Danielle’s daughter was so young when she was diagnosed and treated, most people who have lived through a similar experience are in their “early 20s” and so they don’t know much about people who “got to the end of their lifetime.” In the past, Danielle and her daughter may have been told “sorry, can’t help you” but with the advent of chemo and other treatment, childhood cancer there’s much to learn.
While Danielle’s mother is her guardian, she gets to be the one to “choose that she can participate.” The plan is to follow Danielle’s daughter until she’s at least 16, at which point “it’s up to her. She gets to decide whether she wants to continue.” They plan to collect data and keep an eye on “if she has a growth hormone problem” as well as “check the pulmonary function” because there could be “a struggle with that” as she gets older. For now, Danielle’s daughter is “growing at a good rate” and is “small but mighty” and “going in the right direction.”
Danielle and Jeanne will let the child decide whether she wants to continue participating once she turns 16.
Danielle and Jeanne will let the child decide whether she wants to continue participating once she turns 16.
And will they keep following her throughout her life, do you know? Like how long they’re planning to—
Danielle: I believe so.
Jeanne: Well, they said until 16, and then it’s up to her. She gets to decide whether she wants to continue. But for now while she’s still the guardian we get to choose that she can participate. But they talked about age 16, so I imagine that it is that at least long-term to there.
Danielle: Yeah, like if she wants to after that, it’s her choice. Like I’m not going to say, “No. You have to do this,” when she gets older.
Jeanne: Right, but they’re going to call her, because they’re going to wait for when she’s supposed to go through puberty, we have to see if puberty happens for her or if she has a growth hormone problem.