Update September 14, 2019
In my original bio post I wrote about my son, his cancer diagnosis, and his recovery. I will not delete or edit my original “about me”, but I will update it here. To save myself from having to repeat this story over again and again, I copied my story from my St. Baldrick’s Foundation participant page. I have been active with St. Baldrick’s Foundation since 2013. I’ve shaved my head 5 times and my team, Team Robot Boy, have raised several thousand dollars thus far. We hope to continue raising money for St. Baldrick’s Foundation so that they can continue to fund grants toward pediatric cancer research. If you’ve landed here, and want to help us by donating, please visit this link https://www.stbaldricks.org/participants/bigbaldbad
Below is our current situation:
AJ relapsed in 2019 and the rhabdomyosarcoma in his trachea returned. There are no treatments that will rid him of the cancer at this point. Any chemotherapies we might have considered would extend his life, or more likely do nothing for him, but his quality of life would be very poor. He can no longer receive radiation treatments to his trachea as it would cause irreparable and life-threatening damage to his trachea and esophagus. Any treatments we might have tried would cause him unneeded misery. We have chosen to give him comfort and peace at this time. He has entered palliative care. Our hope is that he is able to remain at home with his family and receive all the love and care he needs to be in the most comfort and least amount of pain until he succumbs to this disease. We will continue to support St. Baldrick’s in his honor, and when the time comes, in his memory. This is why I, AJ’s mother, shave for St. Baldrick’s and try my best to raise as many donations as I can for St. Baldrick’s. Their funding for childhood cancer research is critical for our kids, so that better treatments can be discovered and more cures can be developed.
December 1, 2011
I write. I work. I love my son and sometimes sleep. Not in that order.
I live in Southeast Louisiana, home of red beans and Jurassic Park sized mosquitos. I’ve been genetically predisposed to love the Saints, seafood, and Tennessee Williams. Okay, maybe the last one is an exaggeration.
My life is rather mundane most of the time, except for the occasional bizarre experience or encounter with the world. I think we all can attest to that. I work and write and write and work. I have a *two-year old son who, I am sure, will see me institutionalized before he reaches adulthood.
Music inspires me, and I have eclectic tastes which include but are not limited to everything from hard rock to classical and opera. I will state openly now that I love Queen, and I don’t care who knows it. Fanatical? Perhaps. Reverent? Definitely.
So that’s me, in a few neat paragraphs. If only I could summarize everything in life so easily.
*Update March 2012
Since this post my son has been diagnosed with a PNET (Primitive Neuroectodermal Tumor), a malignant and aggressive tumor, in his brain. He is currently hospitalized, recovering from his initial surgery and awaiting chemotherapy. Because of the tumor’s location, on his brain stem and spinal cord, it wasn’t able to be removed completely-lowering his chances of survival (his chance of survival is about 40%). We’re remaining hopeful that he will continue to recover and tolerate the chemotherapy well and that he will be in that 40%.
** Update August 11, 2015
After 11 months in-patient at Children’s Hospital New Orleans, and many chemo treatments, radiation treatments, stem cell collecting, and more antibiotics than I can name, my son is cancer free (since February 2013). He is home and making enormous strides in his recovery every day.
***Update July 2016
After almost three years cancer free, my son AJ was diagnosed with a secondary cancer in his trachea. Rhabdomyosarcoma. He was successfully treated but not without much suffering. Cancer is a bitch.