Friday, June 27, 2008

Making sense of the senseless

Good morning! Well, I am still far from being out of a severe pout concerning Alexa. Truth be told, I am still in a state of quandary. I take all of our losses particularly hard but this one, honestly, just pisses me off. I know, I know foul language in my rated 'G' diary. I just can't help it. This one is difficult to digest. I understand that children die from neuroblastoma. I have seen that more frequently than I care to go into detail. But, the point is that I understand that, sometimes, the disease wins. I also am aware that sometimes complications arise with treatment. Sometimes, side effects get the best of kids. After all, it is as toxic a therapy as you can have for any disease and more than most other cancers. The point is that I get that. I understand that sometimes the side effects from treatment win. I get that, too.

What I don't get and I can't digest is a child like Alexa. While she was not clear of disease, she was completely and utterly vibrant. Looking at her you would have had no idea of her journey, her history, or her disease. She had been through it all - high dose chemo, radiation, a nuclear reactor full of MIBG, and a slew of phase 1 trial experience. Most recently she had spent a year on ABT-751 (the next drug for me to talk about in my article.) The point being that she was on a fairly mild therapy and one with little toxicity. She had full rosy cheeks and a head full of lovely locks. In a sense she was about as healthy as you could be with refractory disease. Her immune system was in tact. She was full of life and feist.

So, what I don't get is: how is this child taken in such a short period of time and in such a way. Like I said - I understand disease related loss. I get loss from the toxicities of therapy. What I don't get is something like this. After she has been through so much, how do we lose her to an unknown bug and pneumonia. It seems like such a slap in the face. She deserved so much more.

I understand finding a cure. I understand reducing the intensity of therapy.

What do I do for Alexa?

I have purpose just not answers.

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