Every single day, my heart breaks

Yikes… This month is going to be the month with the least amount of posts in it… Oh, well. I have been a bit preoccupied…

It is the months of September and October that I am most glad I don’t get out much.  I don’t see the vasts amounts of pink that are overtaking the world.  Let it be said that I support all cancer research, but first and foremost, I am a childhood cancer advocate. Why? Because when I was not quite 16 months old, I was diagnosed with neuroblastoma, stage 4. Even though I don’t remember anything I went through, my body is scarred for life. Every time I get undressed it’s there. Every day when I shower, I see it. During my childhood, I tried to ignore it, hoping against hope that if I didn’t acknowledge it, then maybe it would fade away or drop off. But, of course, it didn’t. It remains. And so do I.

I don’t know about you, but when I was a child, I didn’t think very much about the future. When people asked me what I wanted to be when I grew up, my answer was always automatic: a writer.  I wanted to be a writer. I still want to be a writer.

I am a writer.

Beyond that, I want to be a published novelist.  But it is kinda hard to get published when I never finish anything I begin.  I want to be adventurous. But it’s kinda hard to be adventous when my body scares me. My whole life, at least since I became “aware” that I was a person, that I could do stuff, surprising stuff. Like read a book and transport myself inside the story, in another world.  Because I did not belong here in this one.  That I had the power to make someone smile because I smiled at them first. That I could speak out against this monster that steals innocent children’s lives and disrupts childhood every single day.

And of course, I think breast cancer is important. Of course, I think colon cancer, skin cancer, and prostrate cancer, lung cancer, and thyroid cancer, and all of the other adult cancers are important. I do not like to see anyone suffer, least of all the children. And the children need awareness, they need funding, they need research, they need cures. Like now. I fight for them. I will be their voice because, once upon a time, I was one of them. Childhood cancers are the least funded by the National Cancer Institute. I want to know why, in the years since I had it, only TWO pediatric cancer drugs have been approved by the FDA. I want to know why nothing has changed. And I want to know why everyone not directly touched be pediatric cancer looks the other way. Children are dying. They are DYING. Do you understand? What if it was your child or a child you knew?

Don’t buy into the media hype that pediatric cancer is rare. That.  Is.  Just. Not. True. I want to scream when I see that “r” word.  It is an ugly lie.  Every day, I find more kids, more angels. And every single morning, I wake up dreading checking Facebook or CaringBridge because I do not want to see bad news. Every single day, my heart breaks… And it will keep on doing so until these kids stop dying.

So do not talk to me about pink or breast cancer.  If you really want to talk about it, please know that you are going to get an earful (or eyeful) about childhood cancer. As things stand, you just do not talk about breast cancer to a childhood cancer survivor. Especially this one.

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