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September is the month designated for Childhood Cancer Awareness, but for the patients and their parents, it isn’t confined to a month. It is a lifetime.
This is a very informative infographic from St. Baldrick’s Foundation concerning childhood cancer stats, money allocated by the government (very little) to the cause, and where your donations may go when you donate to a cancer foundation.
I also urge you to click the graphic to visit St. Baldrick’s website. Thank you.
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 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.
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.
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.
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.
I used to tell my husband, who has been bald since we met, that if I could get away with shaving my head I would. I was so envious of his ability to take a 2 minute shower and be ready to go any place within minutes. No combing, no prepping, no worrying about bad hair days.
When the opportunity came to fulfill two desires, helping St. Baldrick’s Foundation raise money for ped cancer research AND being bald, well of course I was excited. I was so anxious for that day, mostly because I wanted to participate in something important, but also because I wanted to feel my hairless head. I bought a tee shirt that reads, “BALD AND BADASS.” Shaving my head was on my proverbial bucket list.
Hair is overrated. Very much by our society. If someone doesn’t have hair, especially a female, we automatically assume something is wrong with said person-either physically as in illness or something psychological: “She’s just a freak!” Sesame Street has an annoying-as-all-shit song in which the puppet sings for two minutes about how great it is to have hair. I can’t express how incredibly frustrating it was to endure it while my bald son, who was in the midst of chemotherapy, watched. What is so important about hair?
There are the obvious answers: It protects your scalp from the sun. It keeps your head warm. It’s there to flagellate your face on windy days-if your hair is long, that is. The societal custom of idolizing people with “good hair” is not so logical. People with incredible locks are considered more worthy, as is the case with everyone deemed more attractive. But, does having hair make one more attractive?
Obviously that answer is no. Many chrome domed male celebrities are considered handsome- Dwayne Johnson, Vin Diesel, Bruce Willis, Patrick Stewart (yes he is handsome), Michael Chiklis (Come on. The Thing, Fantastic Four), Andre Agassi (who I thought was more handsome without hair than with), Jason Statham (who isn’t completely bald but pretty much), Chris Daughtry (the only reason I ever watched American Idol, ever), Shemar Moore (hoooooot).
So, we’ve established that men without hair are sexy. All right, not all bald men are sexy:
But what about women? Why is it so unusual for a woman to be bald? Are women less attractive without hair? Well, maybe if you’re head is shaped like a warped cantaloupe (but we can’t all have perfect domes, now can we?)
After the first shave, I decided to keep shaving. I don’t wear wigs. I don’t wear hats, except when it was colder. I don’t hide my baldness. There are reasons for this. One of them is because I can strike a conversation with someone that leads to me telling them about St. Baldrick’s Foundation and the necessity of funding and donations for ped cancer-that is the point, really, isn’t it? Another reason is that I feel there is no shame in being hairless. People who lose their hair should not feel the need to cover their heads out of self-consciousness. If they choose to cover their heads because of personal preferences, then so be it. But no one should feel less worthy because they have no hair. I have to admit I also don’t wear wigs or cover my hair because I’ve always been against adhering to gender roles, and I like to force people to experience their discomfort at something totally innocuous, and then maybe they’ll realize it’s unwarranted. I don’t have to have a hair style. Shaving it is a style. I choose to go bald because I like it, and you know what else? My husband likes it, too (He’s really always had a thing for G.I. Jane). Other reasons I choose to remain bald are that I want to stand in solidarity with my son, who now has more hair than me. Although, it is obvious his hair isn’t growing in a usual way. I also choose to stand in solidarity with every other woman who has lost her hair due to chemotherapy and radiation, or for other reasons (Lupus, Scarring Alopecia, Alopecia Areata, Trauma . . . Read about some of the causes of hair loss at the Locks of Love website.) Lastly, I am going hairless for the summer because this is New Orleans and it is VERY HOT. Not having hair will be a plus (I will be sure to wear sunscreen). My plan is to start growing it in the fall, and by March next year, I’ll participate in another St. Baldrick’s Event. Lastly lastly, I have absolutely NO TIME for hair. I wake up, work all day taking care of RB and housekeeping, running errands, and on the phone with eighty different coordinators acting as my son’s nurse administrator, then I pass out with my GOD FORSAKEN CPAP MACHINE , but that’s for another blog.
Now, are women less attractive without hair? Let’s see: Sigourney Weaver, Charlize Theron, Robin Roberts, Kellie Pickler (who also shaved her head in solidarity with someone close to her with cancer), Natalie Portman, and Demi Moore.
I admit I’m no Demi Moore or Natalie Portman, but I am bald. And I’m a girl. And it’s okay.
“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.
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