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

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.

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.

Caustic

Robot Boy & The Intrusive Interloper

I’d like to share something. With baby  product king Johnson & Johnson in the news over the last couple of years regarding potential cancer causing chemicals in their products (Related articles: Cancer-Causing Agent Found in Johnson & Johnson Baby Powder, Johnson & Johnson Baby Shampoo Has Cancer-Causing Chemicals, Group Says, FAQ: Johnson & Johnson’s Announcement to Remove Cancer Causing Chemicals), there is a lot of warranted apprehension and concern by parents about their babies’ safety.

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…

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“Announcing the Stand Up To Cancer – St. Baldrick’s Pediatric Cancer Dream Team”

“Announcing the Stand Up To Cancer – St. Baldrick’s Pediatric Cancer Dream Team”

Reading of the Dream Team gives me a sense of relief and hope. Hope that in the future more kids will survive cancer, and that those who do won’t be disabled and scarred for life.

It’s too late for Robot Boy. Even if his cancer never returns, he will have permanent damage. And we still have two years to learn how much the radiation has polluted and corrupted his young brain.

But this research, this will help future children who will fall victim to the number one killer of kids over the age of one. There could be future kids who won’t lose their hearing from their  chemo and radiation treatments. They might not have to reach a sterile adulthood or require hormone replacement therapy. Or require dialysis. Or any number of the many, many horrific side-effects of cancer treatment.

Their survival rate will increase, but also their quality of life will increase. They won’t survive a terrible disease and it’s equally torturous treatments only to live the rest of their lives with disabilities. They can survive, but they can also live.

We won’t know how much or little damage RB will be left with. But it’s definite he will be left with some-or a lot. My heart pounds with excitement reading this announcement from St. Baldrick’s and Stand Up to Cancer.

This is why it’s important to donate. Even a little. It adds up to a lot. St. Baldrick’s does amazing things for kids with cancer, and these sick children deserve a better future. St. Baldrick’s is helping to create one for them.