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…
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.
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.
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.
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 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 (bloodcell 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.
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.
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.
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.
Today is the anniversaries of both Hurricane Katrina and Hurricane Isaac, two storms that wreaked complete havoc in my state. Isaac less than Katrina, but still enough that lives and properties were lost and many things have still not been regained or re-established. Lots of people are posting remembrances today, but it’s a little more difficult for me to broach the subject. I was there, for work. With my husband, as he also worked for the same agency I did, and with my thin blue line family. Here is the short version I posted to my Facebook friends:
“8 years ago today I was on the front lines of one of the nation’s biggest disasters. Everything went to shit then got better. Trust that it’s something I won’t forget. The end.”
There is no way to describe the situation other than to say everything was terrible. If you’ve never experienced a natural disaster of that magnitude (which many folks around our planet have), then it’s hard to explain the feeling of loss that accompanies witnessing your entire life taken in as many minutes as years you’ve lived. Your town is gone. Your home is gone. Maybe your job is gone. And for the least fortunate people, your family members and friends are gone.
I feel fortunate. Not because today I will be experiencing the most severe PTSD ever, but because of what has been gained post-K. I’ve got a new home, new stuff, some of the old stuff that was salvageable( albeit a small amount), but most importantly I’ve gained a sense of what is most meaningful-the people I still have in my life. I was fortunate that I didn’t lose any family, even my cat and dog survived. The snake was lost, but I’m sure she slithered away in the water and is enjoying life in the woods somewhere living the life a corn snake deserves. I had a roof over my head, even though for some time that roof was that of the Cajun Queen, a paddle boat meant for short tours up and down the Mississippi River (Nothing like taking a shower with a hose on the deck of a boat in mid-October to wake you up!), and later a decommissioned ferry-boat where my husband and I shared bunk beds in an 8X8 cabin.
My thoughts and prayers and moments of silence go most to the less fortunate who did lose family members-some lost many in a moment, the people who couldn’t bear the burden that comes following such a travesty and took their own lives, those who weren’t able to recover and pined away for what was, and those who lived horrors worse than I and that I cannot even fathom. This empathy is not reserved for victims of Katrina or Isaac or any one particular thing. So many terrible events occur around the planet, and I agree with John Donne who wrote the words “No man is an island.”
I’ve long tried to accept the proverbial phrase “less is more”, and nothing has taught me to do that like Hurricane Katrina. What is stuff but meaningless collections of mass that can be lost in a matter of seconds? Katrina taught me what is most important to survival-physically, psychologically, and spiritually. My old home is gone, but I have a new home now. Man, am I thankful for that! I have food on my plate everyday. I have lots of great friends and family who are always there to help me, especially during the difficult times we more recently experienced after RB was diagnosed at 2 years old with brain cancer. Here is another short summary I shared on Facebook of what I was doing last year during Hurricane Isaac:
“A year ago today I was in Children’s Hospital, where we’d been for 8 months by then, during Isaac, in the dark going between trying to get weather updates on my phone and comforting RB who was still going through chemotherapy treatments at the time. Now we’re home, again things got better eventually. The end.”
Things have gotten better. RB is making progress everyday, and his scans have been stable for nearly a year. His next MRI is in September. There are no signs yet of the expected regression caused by the radiation and chemotherapy. He will soon get a homebound teacher and therapists who will come to our home and take over what I’ve been working on since February. He’s getting a stander and braces to help straighten his legs. We’re traveling down a very long path here, but there is an exit, and at this time, it is bathed in light.
So while today will be a day of reflection and bad memories, I would rather look forward than back. I would like to focus not on what was lost, but what has been gained, on what we’ve overcome and on our strength.
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.