At this point the idea of having our daughter at home in order to avoid a hospital stay is just laughable. Life lesson #1: Hospitals are unavoidable. In fact, hospitals and doctors can actually be a good thing. The disorder that our little one has affects 1 in 10,000,000 (that's 10 million right?) and somehow these people know how to treat it and get her better. Medical science is remarkable. I often wonder why in the hell would these doctors and nurses want to work in this field - pediatric oncology is pretty damn depressing but to literally be able to save a child is beyond life giving.
I'm beginning to think differently about all these drugs that she has to take. Everyone has told me as time goes on things will make more sense and it will get easier (--> see previous post about my feelings on time). Our choices are as follows: 1. give her these meds and hope the side effects are minimal OR 2. Don't give her the drugs and the OMS (1 in 10 million disorder) goes untreated. So the latter is not an option. We have to go on faith that these recommendations are correct and in her best interest. We do not want our child experimented on like a lab animal!!! Then I realize that experimentation with other kids is how we have gotten here today. I've gone from hating these drugs, being skeptical of them, and envisioning them killing my angel's insides to accepting them for what they are. A temporary cure to what ails her. We will wait and hope that in the future we will be less reliant on them but for now they are her lifeline.
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