From Survivor to Advocate

childhood cancer survivors alive today

I wanted to write a lot more than than I have on this blog this year, but truthfully, I didn’t know what to say.  All the cancer children I found in 2011 when I first started advocating in earnest are all GONE.  I have no words for that now.  I’m still struggling to wrap my brain around the fact that pediatric cancer is considered rare by the National Institute of Health, when 36 plus babies are diagnosed every single day and 12 more of these precious children die every single day.  I can’t comprehend any of it.  It makes me so mad, and it also depresses the hell out of me.  Several times a day, I ask myself, or God, why, and each time, there is no answer.  Only silence.

I haven’t written because, really, I didn’t know what to say.  Maybe I still don’t, but I know I have to try.

Three days ago, I found a group on Facebook that is called Childhood Cancer Survivors United (that is the link to it) through TheTruth365.  They finally – FINALLY – posted something that a survivor shared with them, and the fact that quality of life is greatly diminished for 3 out of 5 survivors (me included).  And maybe “diminished” is the wrong word, but our lives are definitely not all it could be, especially with long-term or permanent side effects/disabilities.  A lot of people commented on the post, including a young woman named Ashleigh.  She is an acute lymphoblastic leukemia survivor who was diagnosed in 1998.  She mentioned the group that she is administrator of, and I just had to check it out.  To my delight, it was just what I thought it was – a community of childhood cancer survivors (or their parents) asking questions and offering support to each other.

Never in my life have I had such a thing before!  Ashleigh also helped me realize why my health issues have been and continue to be so frustrating.  It’s because doctors don’t know what to do with childhood cancer survivors even in this day and age.  We present with varying long-term/permanent side effects as a result of our cancer treatments that they have no idea how to treat, because of our complicated medical histories.

If you were to ask me why I am a pediatric cancer advocate, I would point to my own childhood as something that I wish no child had to go through.  But children who are diagnosed with neuroblastoma today  are still getting the same treatments I did, although they have added antibodies (note to self: more research needed here – I still don’t understand how this works) to try to prevent relapse.  And like I said above, I am also an advocate because I am absolutely horrified by the statistics.  I believe with every fiber of my being that no child should have to battle the cancer monster, and until there are better, safer treatment options, or even better, cures, I will fight for them and with them.


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