Limited Freedom

Robot Boy & The Intrusive Interloper

fountain

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…

View original post 318 more words

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.

photo 1
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. RB isn't very pleased with his new glasses. But I think they're cute as can be!
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!

2013-09-02 11.42.272013-09-02 11.44.362013-09-02 11.44.11

2013-09-02 11.45.59
2013-09-02 11.47.032013-09-02 11.47.12

photo 3

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.
Travis decided to go all the way, with a razor.
Post shave photo with RB
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.

photo 2

photo 1

 

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

photo

 

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.

photo 2

September is Gold

SeptGoldPic

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.
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.
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.
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.

We’ve Not Reached a Stalemate

“All the world’s a stage, and I’ve been given the part of Job.” – Me to one of my friends yesterday after sharing the results of a recent opthamologist’s appointment.

It all started in September or October 2009, near the end of my pregnancy. I started noticing an odd problem I’d not previously experienced, double vision. Not only was there double vision, my eyes were visibly turning inward, and I had no control over my eyes’ movement.

Image
1/31/13 at the opthamologist’s office, after my eyes were dilated. I couldn’t see anything I was doing. Surprised I actually got the pic.

I told my OB/GYN, and we hoped it was a temporary problem that would correct itself, like so many other strange conditions that occur during pregnancy. For the rest of my pregnancy, I tolerated the double vision. After RB was born, I experienced severe carpal tunnel syndrome and swelling in my hands and wrists, so severe that I could hardly bend my fingers. I used most of my Rx pain meds for the pain in my hands more than the pain from childbirth. The eye condition continued, and I lived with it, assuming it would go away eventually like the hand swelling and other transient effects of bearing a child.

By summer of 2010, the ailment hadn’t improved. Driving at night was becoming impossible, and I kept one eye closed or covered most of the time. With the urging of many friends and family members, I made an appointment with an opthamologist. I wanted to see the surgeon who’d performed my Lasik surgery in 2005, but he didn’t have any appointments available. I went to one of his associates. She examined my eyes and explained the condition is more commonly a pediatric malady, for which I’d have to see a pediatric opthamologist.

It was my first visit to CHNOLA, long before RB’s intrusive alien interloper took up residence in his brain. The doctor I saw explained my ailment as intermittent esotropia (AAPOS http://www.aapos.org/terms/conditions/48).

Image
Photo c/o The Eye Specialists Center (http://eyespecialistscenter.com/detection-treatments/strabismus-amblyopia/esotropia.html)

What the diagnosis basically means is that my eyes turn inward because of a weakness in the muscles that control my eyes. For good measure, a CT scan was conducted and showed only a small polyp in my sinus cavity. Hoping treating the polyp would help resolve the esotropia, the sinus problem was treated. And, in a week or so, the esotropia disappeared. Yay! Thank goodness that was all over. . .

Image
Marty Feldman, Igor, in Mel Brooks’s classic Young Frankenstein. I’ve been likened to Igor, lovingly, over the past few years.

 Unfortunately, it wasn’t all over. Only a day after my follow-up appointment with the opthamologist at CHNOLA, the esotropia returned. Well, it isn’t that bad, I thought. I can live with it. I have more important things to worry about. Besides, there were two solutions to the esotropia problem: 1) Prism glasses which cost $500+ and are not covered by my insurance or 2) Surgery.

I ignored the problem. I drove with one eye closed. I watched TV with one eye closed. I did just about everything with one eye closed. I stopped making eye contact with people. But to me, my daily routine wasn’t effected that much.

Fastforward to late 2011, RB starts getting sick all the time. Here’s a brief rundown for those of you who are just joining us. (You can read more about Robot Boy  here.)We’re at his pediatrician’s office once a week. He’s admitted for pneumonia in December. By January 2012, he stops walking and starts suffering dizzy spells that cause him to fall down. We’re still at the pediatrician weekly. March 3 2012, he isn’t breathing. We come to the ER at CHNOLA.

Esotropia becomes a non-issue. We embark on an epic journey that if written could only have been penned by Homer, or perhaps more appropriately, Dante. We spend nearly a year in-patient through RB’s treatments, tests, scans, infections, and changes in feeding, fluids, and medications. (We’re still in-patient, by the way, but we do have a pending date of discharge.)

November 29 2012, I finally take the advice my aunt gave me two years prior and visit a rheumatologist. Since childhood, I’ve experienced odd symptoms and been diagnosed with everything from IBS to juvenile arthritis to osteoporosis. My body is hurting. I can barely function, and I know the time is drawing near that I will be home with my disabled son. I know I will have to be at my best to be the best caretaker for him. I make a list of diagnoses, tests and their results, and my symptoms. The doctor goes over my papers and says, “Fibromyalgia.”

I’d suspected the diagnosis, as I’m familiar with the symptoms, and I fit every damn last one. He prescribes me meds, gives me encouraging words about RB, and sends me on my way. I take the initiative to be serious about my health. I start eating better and exercising again. I start doing yoga again, every day. I take my meds, and I give up caffeine and alcohol. (Update: I had a follow up appointment with the rheumatologist last week, and he is very pleased with my progress. I feel great, and I’ve lost over 10 lbs since my first appointment with him. You can read more about my first visit here.)

By now, my esotropia is becoming a royal pain in the ass. I take to wearing a patch.

Image
This cool rockstar/pirate look is going to be difficult to give up.

I finally decide to make an appointment with the opthamologist, something I should have done months ago since he works here at CHNOLA, where I’ve been living for nearly a year. The diagnosis is the same, and I’m again given the options of the prism glasses or surgery. I opt for surgery. First of all, my insurance will pay for surgery but not the glasses. Secondly, I need a permanent solution that won’t put me back in glasses after I’ve already had surgery to be free of them.

I’m currently waiting for a call to schedule the procedure. It’s outpatient, but moderately invasive. I will be under general anaesthesia, and the doctor advised it will be a few days before I feel fully recovered from the anaesthesia. The pain is supposedly  minimal. Two months from the surgery date, I will have a follow-up to find out just how well my esotropia has improved, or -more hopefully – has diminished entirely.

So raise a glass for me, Old Job, as I’m sure ‘Ol Mephisto is moving his bishop. We’ve not reached a stalemate, yet, and we’re not intending on it.

I Didn’t Even Prepare an Acceptance Speech

Winning. Not something that’s been a big part of my life. Much like the unfortunate likes of Charlie Brown or the Amazing Luckless Peter Parker, I’ve been one acquainted with catastrophe. Literally, and I’m not misusing literally.

I’ll never be the person who wins the Powerball twice in ten years (bastards) or finds a briefcase full of a million dollars (okay, seriously, that’s mob money). You won’t see me winning any competition. I’ve often joked that if there were a contest which required its winner to be named Donnell Jeansonne and have my social security number, some identity thief would win it.

But when you are a luckless schlub, you learn to really appreciate the things in life that some people might find trivial. To be completely cliché I’ll maintain I’ll never be wealthy, but my life is enriched by the people in it. Some of those people are close friends and family. Some are new friends. Some are acquaintances. Still, some are folks I’ve never met in real life, and may never meet.

One of those wonderful people is a lovely lady and author of the blog Pinwheels and Poppies. We met as WordPress bloggers when I first read her blog The Coming Adventures of a Soon-to-be Baldie in which she writes of an upcoming trip to Chicago to participate in a St. Baldrick’s event. The blog was posted on March 19, 2012-just thirteen days after I learned my own son, then twenty-eight months old, had a malignant brain tumor.

We’ve corresponded via the Internet since then, and today she shared something with me. Although I’ve been behind in blogging (I promise all of my free time is spent working on my novel.), she’s awarded my humble blog with the Liebster Award.

Coincidentally, I studied German for three years in high school and two in college. I can’t say I’m fluent anymore as parts of my brain have gone on permanent vacation. But I do know that among the word’s meanings, one of them is beloved. And with this knowledge, I want to thank my friend at Pinwheels and Poppies for awarding my blog, and as always for dedicating herself to helping raise money for pediatric cancer research.

My son Robot Boy and his dad

Now there are rules that go along with this award. Just like Spidey says, “With great power comes great responsibility.” These rules don’t appear to be carved in stone or anything, but basically they are intended for bloggers to pay it forward by acknowledging the blogger who awarded them and to pass it along to other, also lesser known, blogs. According to seemingly official Liebster Award criteria posted by P&P, an awarded blogger should recognize three to five other bloggers with less than 300 subscribers.

Past bloggers have also passed down rules that an awarded blogger should state eleven things about herself/himself, and should answer eleven questions set by the person giving the award. And that we should write eleven questions for our own awarded bloggers.

Since the lovely lady who has seen fit to give me this award has followed the eleven question rule, I will follow suit.

11 Questions for Me:

1. What is your earliest memory?
A tight squeeze and a bright light. Just kidding. My earliest memory is from last week. Who am I again?

2. What are your personal religious/spiritual beliefs?
Spiritual yes. Religious hardly.

3. Favorite comfort food?
I really can’t answer this question. I’m from NOLA. Everything is comfort food.

4. Are you crafty? If so, what’s your crafting niche?
Is sticking yourself repeatedly with sewing needles and burning yourself with hot glue guns a craft? Because if so, that.

5. Who do you think is hotter- Johnny Depp or Robert Downey Jr?
Johnny

6. What’s your astrological sign? Do you believe in astrology?
I was born on the Virgo/Libra cusp. I’m a little of both and a little of neither. I lean more toward the Libra in me. For entertainment purposes only.

7. How many countries have you been to? Which ones?
Four not including the USA. Mexico, St. Maarten, the Bahamas, Grand Caymen. Also the US Virgin Islands which I didn’t count because it’s the US.

8. Have you read 50 Shades of Grey? Opinion?
Nope.

9. Which decade do you feel like you belong in? Why?
The Seventies. I could see all the cool bands, man.

10. Do you garden? If yes, what kind of gardening do you do?
Does watching my husband mow the lawn count as gardening? Then yes.

11. What blows your mind more- outer space or life as we know it?
Outer space, man! Seriously. The universe is fucking awesome.

Now that that’s finished, here are eleven things to know about moi:

1. When you’re on fire you don’t remember to stop, drop, and roll. I know this from experience.

2. I say fuck a lot. But not as much as motherfucker.

3. I think if I had a British accent I’d be much funnier.

4. I once tap danced in front of the Cabildo and made $11-true story. Also, I can’t tap dance.

5. I’m pretty sure I’d make a successful psychic. I can’t see the future, but I’m pretty good at bullshitting people.

6. I like the Regular Show.

7. Me and my bestie once played Spider-Man for Playstation 2 for twelve straight hours until we finished because we didn’t have a memory card.

8. I’m fairly jolly for a person whose life’s in the shitter.

9. I am a book hoarder. I buy books I never read, some I do read, some I read multiple times. I am addicted to buying books.

10. Anyone who’s ever heard my name knows how much I love Queen and Freddie Mercury.

11. My fantasy destination in Phuket, Thailand.

Phuket

And here are the next award winners of the prestigious, glamorous, delicious Liebster Award. Drumroll please……..

………………………………………………………………………………………………………

………………………………………………………………………………………………………

………………………………………………..

1. Crazy Dumbsaint of the Mind
2. Transitioning Mom
3. hollyanne gets poetic
4. kimberliah
5. Mullings of Mind Tramp

Now to notify the winners…

Thank you again to Pinwheels and Poppies for considering my blog for this award!