Limited Freedom

Robot Boy & The Intrusive Interloper

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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.

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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.

Letter to St. Jude Children’s Hospital

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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.

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I’m bald and badass for St. Baldrick’s

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.

 

Thank You,

 

Donnell C Jeansonne”

Ready to go. Unlikely to make a difference. But ready to go anyways.
Ready to go. Unlikely to make a difference. But ready to go anyways.

 

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.