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…
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.
As those of you who’ve been with me longest know, my interests lean toward the macabre. I’ve been interested in horror films, books, and culture for as long as I can remember. My mother even tells stories of my napping in my toy box as a kid and pretending it was my coffin (because I was a vampire, of course). It probably goes without saying that many of my friends share my interests. Like most nerds belonging to any genre, we would have lengthy discussions about certain things in movies and what not, and one of those things we’d discuss in-depth was the matter of zombie-ism. These were days long before the zombie culture was accepted in the mainstream-or maybe it’s just that more of us have crawled from our crypts to claim our rightful place among everyone else. During these discussions, I’d always declare that in the case of a zombie invasion (this was before the term “zombie apocalypse” was even widely used or even coined, possibly), I would want to be a zombie. I’d rather be one than be eaten by one, you see. Because zombies scare THE EVER LIVING SHIT OUT OF ME! I won’t lie. If I watch a zombie movie, I WILL without doubt have nightmares. I’ve had many detailed nightmares about zombies, and I will probably have nightmares tonight just writing about zombies right now. I love to watch zombie/horror movies and read scary stories (and write them!), but in real life, I am a big old ‘fraidy cat once the sun goes down. I was, until very recently, terrified of the dark. When I used to work dayshift, and I had to leave early in the morning while everything was quiet and everyone was still asleep, I would get into my car with a quickness as I would terrify myself with the thought of a Dawn of the Dead scenario. The problem with zombies is that they’re like cockroaches. If you see one, you know there are more.
For some reason which I can’t pinpoint, over the last several years zombie culture has become quite popular. Not only with horror fans, but with people who wouldn’t normally be into “that kind of thing.” I don’t know why this happened, but as you can all imagine after having read my first paragraph that my brain constantly being bombarded with zombie related information caused me some unease. It did in the beginning, then like most things, I became immune to the constant bombardment, and the nightmares stopped-mostly. I would like to note that in my nightmares, I have always been the victor. There hasn’t been one yet in which I was the victim of a zombie bite, although in one my husband was bitten, and it ended with us shutting out the zombie hoards and my looking at him with the knowledge that I would have to kill him. I mean. It’s the only way. Also, I was once a zombie crime scene investigator who had to eat the remains of the victims of crimes in order to discover their means of death and catch their killers. Or maybe I was just hungry. I dunno. Analyze that, okay.
When I was diagnosed with fibromyalgia in late 2012, and after battling pediatric brain cancer alongside my son for nearly ten months, I was almost totally unable to do more than move around a little and then lie back down again. I was fatigued beyond explanation, and I was in pain. Lots of it. I decided it was time to get serious about my health. I knew I wouldn’t be able to care for my son otherwise. My body was in a very bad state then, physically, mentally, emotionally. My rheumatologist prescribed me medicine to help control the fibro. I started doing yoga again. I started eating well again. Eventually, and slowly with time, I was able to do more than yoga (and am doing much better with my yoga poses now). I’ve lost a significant amount of weight.
Somewhere in last few months information came across my Facebook feed about a 5K zombie run. I’d never done a 5k, and I knew I wouldn’t be able to really run a 5K (not yet, anyway). Even though I am getting into much better shape, I have to be realistic about my limitations. I decided, though, there was no better opportunity for me to be a zombie and set a goal for myself. After all, folks with fibromyalgia feel like their stricken with rigor mortis most of the time, anyway. I know I do. I am fortunate in that although I do suffer from fibromyalgia, I don’t suffer from some other-and far more detrimental-ailments that people with fibromyalgia can have. Lupus and rheumatoid arthritis are just two of those. I do have osteoarthritis, early onset of osteoporosis, and mild scoliosis. But, they’re not going to be crippling in the way rheumatoid arthritis or other forms of rheumatic diseases are. Fibromyalgia, for what it’s worth, doesn’t get worse over time. This keeps me positive that I can give myself a better quality of life by taking care of myself-eating right, exercising, sleeping. I stopped drinking (sad face), but it really is for the best, and as the bottle of Amaretto in my pantry whispers my name, I remind it that not only have I stopped drinking but I’ve also given up eating or drinking anything with a lot of carbs after a certain time in the day. (Bad Amaretto! Bad! Bad!) I digress.
I wanted to register for the zombie run because it seemed like fun and I got to set a goal for myself and I got to be a zombie. Win. Win. Win. During the months leading up to the Zombie Run, I trained hard. I knew if I didn’t work hard that I wouldn’t even be able to endure the heat and running after the, well, runners. (Honestly, I let a lot of them go because really, they were in great shape. I told one guy, “I’m not out-running you. Go ahead.” He had like 2% body fat and looked like he ran everywhere just for fun. Free pass from this zombie.) And although I sprained my ankle during that time, I noticed that it became easier for me to lift my son and that I was in less pain after moving him and his equipment around. My fatigue has all but diminished, and I really only sleep in the day when I don’t get enough sleep the night before. (The CPAP machine helps a lot, although it’s left a bald spot on my baldness. In other words, the strap that goes across the top of my head has rubbed some of the hair completely away. I sleep with a handkerchief between it and my scalp now, but it might be too late for that one spot.)
Zombie Run day came, and I was up with the vampires at 3am since we had to arrive at City Park at 5am. I live a good ninety minutes away. I drank a protein shake with some yogurt and did some yoga and went on my way. My friend, with whom I’d have the zombie discussions years ago, and her stepson joined me for the race. We didn’t really know what all to expect, but we knew some stuff. Like we got professional zombie make-overs from some of the best make-up artists in the area.
The artist who did my make-up works at the 13th Gate, a haunted house attraction located in Baton Rouge.
There were also members from the House of Shock involved in our zombie training and blood spattering. When I was up to be spattered, they said no one wanted to roll around in the blood on the big blue tarp that was catching the burgundy puddles. So, of course, I said I would. Then my friend’s stepson did it, too. Because we’re cool like that. It was fun, but I had fake blood squishing in places that were bordering on unsanitary. Still totally worth it.
While we knew we wouldn’t be running the entire 5K behind the runners, we didn’t know where we’d be or that we’d be set in a cordoned off area and not allowed to leave our assigned zombie stations. We got onto a bus and were sent to a part of the park that is just an open field, and it made for some really good chases. I did a lot more running and with not as much effort as I thought I would. I survived the heat and the physical activity, although after a few hours we’d transformed from Dawn of the Dead super-bath salts-zombies to straggling, moaning, slow-moving zombies. All in all, I was very proud of myself for being able to actually chase and keep up with some people. I felt bad going for the kids, so I just hung back and some people were visibly exhausted so I told them to hide behind a tree because I might be an undead brain eating abomination, but I’m still sympathetic.
It’s suffice to say we had a great time. We were too tired and hungry to stay around for the after race activities, so we went out to eat where we freaked out no more than everyone. (One lady thought we’d been in a bad accident. I guess she feels the Golden Corral’s breakfast buffet is just that good, and it’s on the way to the hospital anyways?) It was my first time doing anything that physical, at least since I was a kid when I ran around for the hell of it all the time just because, and I was famished beyond words. I was glad the breakfast buffet had two types of bacon (yes TWO types). I was a good girl, though, and my second plate consisted mainly of fruit, even though I was eyeing that chocolate fountain pretty hard.
I definitely plan to attend next year if there is another Zombie Run. As a zombie, of course. I’m also pretty interested in another 5K that is taking place just two days before my birthday, and it looks pretty intense. The Nola Zombi run is set-up with a military style obstacle course. I haven’t registered, yet. Yet. According to their website, I still have 84 days 1 hour 58 minutes and 51 seconds.
Now, while the likelihood that any baby would develop cancer by the trace amounts of chemicals in these products is low, no parent wants to, or should, expose his/her child to carcinogens. Many of us avoid smoking areas with our kids (I don’t even allow smokers to touch my baby unless their hands are washed post cigarette, and I don’t like my child to be exposed to the carcinogens left in their clothing…
In early 2012, we reached out to St. Jude Children’s Hospital for our son RB (if this is your first visit, read about him here). The doctors at CHNOLA were hesitant to treat RB as they weren’t sure if he was “salvageable” (the word used by the doctor who advised us of this). We were told by a friend we should request a transfer to St. Jude. We did, but the staff at CHNOLA dragged their feet on calling with the referral until we went to administration about the issue. I personally spoke to the nurse coordinator of brain tumor patients at St. Jude’s.
After some days, and apparent discussions involving who knows what between St. Jude’s doctors and CHNOLA’s doctors, St. Jude determined RB could not be treated there as he did not meet their “criteria” (their word). Because he was on a ventilator, St. Jude would not take him. He is home now, on a home ventilator, and recovering well- after CHNOLA decided they could, in fact, take a stab at treating our child.
The day before we learned of RB’s cancer, my husband held a benefit for St. Jude Children’s Hospital at the business he once owned before it was dissolved due to lack of funds to keep it running. We’d donated to St. Jude for a long time before RB’s illness (We didn’t know of St. Baldrick’s Foundation then). We did so because St. Jude’s does help many children and families, and we do not deny that, but since we were refused their services and remained at CHNOLA, we have incurred-as one can imagine-many expenses that prevent us from being able to donate extra money each month. We called St. Jude and explained to them our monthly scheduled donations would have to stop and we explained why (because we were of course interrogated on our decision to stop donating). This, however, has not stopped St. Jude Children’s Hospital from mailing us solicitations asking for donations. Today I received yet another letter from their institution requesting donations, along with the letter detailing how terrible it is for kids and families that suffer through this terrible disease (OH REALLY? Didn’t notice!). Instead of tossing it into the burn pile as I’d usually have done, I decided to send them a letter.
I want to make it clear that I do not want anyone to stop donating to St. Jude Children’s Hospital because of our experience.
They do a lot for children and families. They just decided not to help ours. There are foundations, such as the American Cancer Society, that I have decided are not worth donating to as they spend more on solicitation than funding research, and they spend next to nothing on pediatric cancer research. Because of our own situation, we have decided to dedicate our time and donations to St. Baldrick’s Foundation, an organization that spends the most of any cancer research foundation toward actual research. Their donations are used strictly to fund pediatric cancer research, something that is far underfunded. Only the U.S. Government spends more toward pediatric cancer research, and St. Baldrick’s uses over 80% of each dollar donated to funding research, unlike the ACS.
At any rate, I would like to share with you all the letter I wrote to St. Jude Children’s Hospital in regards to their constant solicitation.
“Dear St. Jude Children’s Hospital,
Our family wants nothing more than to help kids with cancer and their families. Our own son is in recovery from brain cancer for which he was treated at Children’s Hospital New Orleans. We would like to continue to donate to institutions such as St. Jude’s to help assist children with this devastating illness, however, when we reached out to your hospital for assistance, your hospital denied our son treatment because he didn’t meet the “criteria.” Because St. Jude Children’s Hospital refused us assistance, we have-as you may imagine-many unpaid medical bills. Therefore, we are not able to donate extra money. We would appreciate it if your institution would cease sending us mail asking for donations. Use the money instead for funds related to treating the sick children at your hospital and for assisting their families. My best regards and prayers to the children and families of St. Jude Children’s Hospital who are suffering through the same tremendously devastating and life-changing event as our family has been enduring for these last fourteen months. We appreciate your cooperation in not sending us more mail asking for donations.