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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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.

Strength

Image courtesy of Victor Habbick / FreeDigitalPhotos.net
Image courtesy of Victor Habbick / FreeDigitalPhotos.net

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.

Image courtesy of Danilo Rizzuti / FreeDigitalPhotos.net
Image courtesy of Danilo Rizzuti / FreeDigitalPhotos.net

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.

Trailer we lived in post-K from 2005-2007.
Trailer we lived in post-K from 2005-2007. We moved on up from the boat accommodations.
Me at the trailer in which we worked for many, many months post-K
Me at the trailer in which we worked for many, many months post-K

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 forget what's going on here, but it's something.
I forget what’s going on here, but it’s something.

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.

RB in the physical therapy gym at CHNOLA. He will he receive a stander similar to this one.
RB in the physical therapy gym at CHNOLA. He will he receive a stander similar to this one.

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.

Hurricane Katrina Memorial  St Bernard, La. Photo by Edward via NOLA.com (http://photos.nola.com/photogallery/2010/08/st_bernard_parish_katrina_memo.html)
Hurricane Katrina Memorial
Yscloskey St Bernard, La.
Photo by Edward via NOLA.com (http://photos.nola.com/photogallery/2010/08/st_bernard_parish_katrina_memo.html)

The Ronan Thompson Foundation

The Ronan Thompson Foundation.

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.

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.