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    Posted January 22, 2014 by
    Zladydi
    Location
    Bakersfield, California
    Assignment
    Assignment
    This iReport is part of an assignment:
    Living with a rare disease?

    Alveolar Rhabdomyosarcoma

     
    In June of 2013 my eleven year old son came to me with a pea sized bump on his foot thinking it was a spider bite. I treated it as such, and forgot about it until June 12th when we went to an amusement park. He was in so much pain in his left foot, he could hardly walk. The bump, by then had grown into a size of a cherry tomato. I took him to the Doctor, they took xrays, but couldn't see anything, so they referred me to a Podiatrist. Long story short, on August 28, 2013, my son went in for surgery to "drain" what the doctor had thought was a hematoma (by this time it was the size of a goose egg). The doctor came out of the surgery and informed us that he had never seen anything like this before. There was nothing in there, but it was all dead and "eaten" up. On September 3, 2013, our world was turned upside down. My son has a rare and aggressive cancer called Alveolar Rhabdomyosarcoma. He is currently undergoing aggressive chemotherapy treatments and also did six weeks of radiation on the tumor on his left foot, and on the left leg groin area, because the tumor was feeding into his body via the left sentinel lymph nodes. Right now, at the age of 12, my son is battling his giant. His favorite story in the Bible is of David and Goliath. He has a facebook page called Facing Ben's Giant where people can travel this journey with him. What I have learned through this experience thus far is that Pediatric Cancer Awareness is just not out there. I had NO idea prior to September 3rd all of the various types of Pediatric Cancers and the lack of funding for Pediatric Cancer Research. Right now, we are depending on older chemo drugs to kill this deadly disease. It is rare, it is a disease, it is a genetic mutation, and it's deadly. Bringing more awareness to this would be so awesome. AND unfortunately, there are more stories that I could introduce you to, now that I'm part of this world of Pediatric Cancer. Thank you. Oh yes, one more thing. Because there is not a lot of information on Pediatric Cancer, we have to travel to Los Angeles for all of his treatments. He does so much better when we can be at home. It's so hard on ALL of us having to go out of town for all of his treatments. Bringing awareness to rare diseases, such as this, will hopefully bring about a BIG change in what we need for our kids.

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