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.

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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!

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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.

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

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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.

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September is Gold

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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.

Hypnos

So I decided to spend an exorbitant amount of money to have a night away to sleep in a quiet room where I will have no distractions.

Just kidding. I’m having a sleep study done tonight. But I am spending an exorbitant amount of money.

My primary care physician has this idea that because of my fibro, I also have sleep apnea. I tried to explain to him that in order to have sleep apnea, I would have to actually have time to sleep. Robot Boy was with me at the appointment, and the doctor admitted he understood I probably didn’t get to sleep much or for long periods of time. Still, he insisted my daytime fatigue is caused by sleep apnea. Not, you know, the fact that I sleep two hours and am up for three to care for RB, then sleep for another hour, and so forth. That has nothing to do with it.

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Marty Feldman (Igor), in Mel Brooks’ Young Frankenstein

At any rate, if I want to get this Igor Eye corrected with surgery (that is the medical term for the condition, BTW), I must be cleared by my PCP. And he won’t until he is certain I do or don’t have sleep apnea.

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“Damn your eyes!” Gene Wilder to Marty Feldman, Young Frankenstein.

At least the digs are nice here at the hospital. I was expecting an uncomfortable hospital room, utilitarian and quotidian-like the rooms I’ve been living in for the last year. I’ve seen RB have three sleep studies, and none of them looked comfortable or tempting.

He was covered in electrodes and wires and had belts strapped across his chest. How one is supposed to sleep in that condition, I don’t know.

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Harumph
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A real bed all to myself.

I will have to be attached to these things as well, but the room resembles more of a comfortable hotel room than a hospital room.

I have a notorious love of hotels. Don’t ask why, because I don’t know. I have just always felt comforted and excited by staying in a hotel. Maybe it’s a reminder of the excitement involved with vacationing. Maybe I’m just a freako. Who knows?

This room seems nice and soothing. I hope I can sleep with all those wires and whatnot attached. I am so looking forward to a night of uninterrupted sleep. I’m also looking forward to getting the results of the test that will hopefully show I do not have sleep apnea.

We don’t need RB and me on a CPAP machine. I wouldn’t even have time to wear the damn thing!

Hypnos, may all go well tonight.

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Comfy

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.

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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).

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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. . .

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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.

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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.

Chemotherapy and Stubborn Little Boys (And Moms and Dads)

I never thought I’d say the words, “Thankfully my son started chemo today.” Because no one should be happy that her child is receiving chemotherapy. Because in that case obviously something is very wrong. Something has gone awry, and bad. But I say that I am thankful because for the last month and a half we’ve been waiting to know if chemotherapy was even an option.

See there was a time when the doctors thought Doodles wouldn’t even make it this far. He was “neurologically devastated” and they weren’t sure if he was “salvageable”-because he’s a car or sunken shipwreck. We were told he “wasn’t going to get better” and that they were just planning to sustain him and “keep him stable.” We were even told they might have to “just let nature take its course”, to which we replied, “That is not an option.”

Because we knew what they didn’t know, and although they were reluctant to believe us, we refused to let Doodles go down without a fight. We saw what the doctors didn’t see. We saw that he was “salvageable”, and that he was conscious, responsive, and aware. We knew he was there.

Me and Doodles, in grayscale

I’m sure we were regarded as over-optimistic parents refusing to accept reality. I’m sure there are sadly many parents who might have taken the doctors’ words as testament and went along with whatever their plans were. But we’re stubborn and very hard-headed. And so is Doodles.

We had a long discussion, he and I.  I told him it was very important that he start showing the doctors that he was a strong man and that he was getting better. I told him it was the most important thing in the world. Whether he understood me or not, I don’t know, but he did what I asked. When the neurologist came to asses him she spent less than five minutes before she decided he was, in fact, not “neurologically devastated”, and that he was very much aware and alert.

Doodles finally got his tracheostomy and his g-tube (something that was delayed because the oncologists who originally looked over his case decided there wasn’t much they could do), and although he is still on the ventilator, he is breathing over the machine at almost twenty breaths a minute. They are now weaning him off the ventilator, something we were told just weeks ago wouldn’t happen.

The hem/onc team wasn’t sure if they could or would start chemotherapy simply for the mere fact that they assumed Doodles wouldn’t recover and that it wasn’t feasible. To them it seemed more feasible to let him expire, I suppose. But it wasn’t feasible to us, and certainly not to Doodles.

So today I say that I am thankful that my son started his chemotherapy because it sure beats the hell out of the alternative.

I want to add that not all of Doodles’s doctors were so fatalistic about his condition, and I’m very grateful to those who voiced their opinions and were his advocates in opposition of those doctors who were ready to close the book on him. I also want to acknowledge the many great nurses, physical therapists, respiratory techs, and other staff here who have taken to Doodles so much so that they check in on him and ask about his progress even when he’s not their patient for the day.