Renewal

I’ve waited until nearly the last minute to renew my domain name here on WordPress. It isn’t that I dislike their services or anything, it’s just that I wasn’t sure if I wanted to continue to pay for a service I’ve barely used.

It’s all me. I just haven’t been writing lately. Not blogging. I have been writing. Writing and submitting and being rejected and waiting and all the fun crap that goes along with writing. I haven’t been posting many new stories here, and even some of the older ones have disappeared, because they are going off into the wild blue yonder to be read and sent back with a note that says, “We really like your creation, but a) it’s not fit for our magazine b) we don’t have room for it in our magazine c) we don’t care d) we hate you. Kidding about those last two. The “we don’t care” usually is communicated by the lack of communication at all, meaning no response whatsoever. No one has ever said they hate me, at least not in a rejection letter.

To say I was at any time disenchanted with the writing world would be inaccurate. I knew and still know the game. Magazines, agents, and publishers are inundated with material. There’s a reason it’s called a slush pile. To say I write as often as I should be would also be inaccurate. I don’t. I procrastinate and get distracted by life in general. I come to choose sleep over writing. Trust me, there was a time when that was not the case. But I’m still trudging along, although slowly.

I’ve thought of self-publishing, been encouraged to, even. Why don’t I self-publish, you ask? Well, the answer is simple. That arena is also inundated, simply over-saturated. Not only that, but it takes money to do it right, and I simply have none.  That’s a lie. I have  some. But, it’s already been allocated to things like food, shelter, and making sure my son is supplied with the things he requires for his  medical condition.

So, I suppose that’s that, then. I renewed my domain here at WordPress because I want to keep writing, and I’m too lazy to go about changing all of the links everywhere on the interwebs to a different address. I also love spam comments, apparently. Kidding. I don’t like spam.

 

http://www.sodahead.com/fun/do-you-like-spam

Limited Freedom

Robot Boy & The Intrusive Interloper

RB had a fever yesterday and we had to return to the ER at CHNOLA. Everything seems fine, but he’s being treated with antibiotics for safety reasons since some bacteria came back in his tracheostomy. It’s a bacteria he’s been colonized with and will always be there. His oncology team advised us that next time he has a fever, we won’t have to come to the ER. He can be treated for an illness by his regular pediatrician as he is no longer a cancer patient. After his next scan (which is this month) they are going to schedule a surgery to remove his port. All of his counts are normal and he is completely recovered from the chemo and radiation.

Although he has a lot of physical disabilities still (many of which he is overcoming slowly, and with therapy;some from which he will never recover). Things are by no…

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Shaving & Sharing

I wanted to make my first ever vlog, however, I couldn’t get my video to upload to YouTube or Dropbox-or anyplace! Soooo…. I went with Plan B, take still shots of the video and create a photo blog!

Last week, I was contacted by an acquaintance who was interested in shaving his head for September to raise awareness for Pediatric Cancer, and he wanted RB and me to be involved. We decided I’d do his shave (I’m not shaving my own head again until the next St. Baldrick’s Event, so I’m letting my hair grow back right now), and he chose Sunday September 1st, since it was the first day of Childhood Cancer Awareness month.

The back window of Travis’s pickup.

Our friend, Travis, was the shavee. Travis is a firefighter who decided to help raise awareness for childhood cancer. He’s also a graduate student at Nicholl’s State University studying marine and environmental biology. All of his research is in microbiology, and he hopes to get onto a pediatric oncology research team after graduation.

Pre-shave photo with me, RB, and Travis.

On Sunday, Travis came to our home so that I could video the shave so that we could share it. Unfortunately, like I’ve already written, the tech gods were not smiling down on me. Instead of being able to share the video, I can still share still shots of the video, though!

I’m an expert shaver, by the way. I’ve been shaving Robot Dad’s head for about 13 years now. And I shaved my own a few times after I initially shaved it last March, too.

Travis decided to go all the way, with a razor.

Post shave photo with RB

Not only did Travis decide to shave his head for Childhood Cancer Awareness, he also spent Sunday chalking the back windshields of cars with messages to help spread the word about pediatric cancer.

 

He even did Robot Boy’s van before he left so that we can spread the message whenever we’re on the road, too.

 

In my video, I thanked Travis and everyone who goes out of their way to spread awareness for pediatric cancer. Those of us in the pediatric cancer community try to make childhood cancer known to more people throughout the year, but especially during September because it is Childhood Cancer Awareness Month. We are thankful to everyone who shares the message, as well.

September is Gold

September is Childhood Cancer Awareness Month, and the color is gold. Pediatric cancer is not a popular subject. It isn’t something we like to discuss or think about. What parents want to imagine their child with cancer? We didn’t want to. Unfortunately, avoiding the thought of it didn’t prevent Robot Boy from developing brain cancer. A PNET-primitive neuroectodermal tumor-to be exact. It’s a long word, but it’s one this mother won’t forget. A PNET is a rare type of brain tumor that carries with it a survival rate of approximately fifty-three percent. My son, RB, was given a forty percent chance of survival.

Brain cancers aren’t the only types of cancer that afflict our youth. According to the National Cancer Institute: “Among the 12 major types of childhood cancers, leukemias (blood cell cancers) and cancers of the brain and central nervous system account for more than half of the new cases.” (http://www.cancer.gov/cancertopics/factsheet/Sites-Types/childhood) Cancer is the leading cause of death by disease for those under the age of nineteen. Even though, pediatric cancer is the least funded and least acknowledged of all cancers. Maybe this is because we don’t want to talk about it. But we aren’t doing the children any favors by avoiding the issue.

Brain tumors are the most common form of solid tumors in children.

Childhood Cancer Awareness is important because pediatric cancer isn’t as widely publicized as other cancers. For this reason, it isn’t funded as much as other cancers, too. It is rare, compared to other types of cancer, but it is just as important. On Sunday September 1, I’m shaving again for Childhood Cancer Awareness. Not my own head this time, but someone else’s. Someone else who is interested in helping to bring recognition to this deadly disease. He asked specifically that RB and I be involved with his selfless act to help bring attention to pediatric cancer. We are more than happy to oblige.

I went bald by choice. Unfortunately, due to harsh, poisonous medications, children with cancer don’t have the choice.

The last time I shaved my head was for a St. Baldrick’s Foundation Event, and though this shave isn’t for any event, you can still visit RB’s St. Baldrick’s Foundation home page (http://stbaldricks.org/teams/robotboy) and make a donation. If you’re wondering why you should donate to St. Baldrick’s Foundation, I’ll let you know that they are the second largest entity that dedicates funds to pediatric cancer research (the U.S. Government is the first). I’ll also explain that they dedicate more funds to research than any other cancer foundation-over eighty percent of each dollar donated. They’re funding research in many areas, including those for cancer treatments that are less harmful than current treatments-those that can leave patients with a variety of disabilities.

Robot Boy before we learned he had cancer, before the surgery and treatments that later disabled him-most likely for life.

According to St. Baldrick’s website, 175,000 kids are diagnosed with cancer each year. A child is diagnosed every three minutes. There isn’t much hope for a cure for some children, but because of improved research and treatments, kids’ overall survival rate has dramatically increased over the last sixty years. (http://www.stbaldricks.org/about-childhood-cancer)

Please share. Please donate if you’re able. Any amount is helpful (and much appreciated!). Childhood Cancer is a vicious, insidious killer. Sadly, it’s one that little is known about.

The Ronan Thompson Foundation

The Ronan Thompson Foundation.

Please visit the link and learn more about the foundation and how to help. My readers should know by now our number one priority is Robot Boy and helping to find a way to end childhood cancer. It is the least funded of all cancers, and it is the #1 death from disease for kids. Please help by donating or simply by sharing and helping to inform others. I thank you.