Today I'm angry. Angry that my child has this disease. Angry that the treatments to save her life may end up killing her anyway, or at least cause her pain and poor health as life progresses.
Yep. They talk about these great survival rates. They run a numbers game. But they don't talk about the fact that these kids have damaged hearts, deteriorating bones, cognitive disabilities. They don't talk about the fact that the drugs damage the heart, the brain, the bones. They don't tell you what you are in for.
I'm angry because there isn't enough done to prevent these effects.
I'm angry because I want to know why we are still using these drugs.
Why the hell don't we have a cure for this damned disease?
Why do I have to watch my child go through awful pain in the name of getting better, knowing all the while that "getting better" will also mean longterm damage.
Yeah, today I am angry.
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