In case you missed the controversy, here’s a brief summary of what has transpired recently (see previous blog post for more): The childhood cancer community is outraged at the officials who run the “iconic American Building” known as the Empire State Building in New York City. After being denied yet again the request to light their building gold for childhood cancer awareness month (September), advocates took to social media to inquire why this was…again. Advocates, including friends, concerned citizens, family members, survivors…and especially parents began posting on the Empire State Building’s Facebook page, asking them to reconsider…many posting pictures of children who have fought, are fighting, and those who have died as a result of childhood cancer or the very toxic barbaric treatments that have changed very little since the 1960s/70s. Those who run the page quickly took to deleting these posts from their page. When advocates saw this, they became more outraged, and more and more flocked to the social media page, beseeching that they reconsider their seemingly cold-hearted decision for which they offered no explanation—and many calling them out for censoring their page. One official offered a status update, claiming they only accept those requests made by the proper form (we did), that they receive too many requests a year that they cannot honor, and that requests by social media campaigns and petitions are “automatically not considered.” Many advocates began posting the truth that the request year after year has been made through the proper channels, yet has been denied with no reason….aaaaaand the Empire State Building staff then quickly took to hiding these comments from the public, which was detected by advocates and visitors to the page by comment number discrepancies and a divine flaw in the Facebook app (see more below). The Empire State Building lights for various “causes”: sports teams, the Chinese New Year, India Day, Canada Day, the World Cup, the Teenage Mutant Ninja Turtles…. It lights for Breast Cancer Awareness every year (a worthy cause…the number 3 disease killers of women… Thus the NUMBER ONE disease killers of children should be honored…)
Mr. Anthony Malkin, owner of the Empire State Building, continued to censor comments by the childhood cancer community. He overlooked the fact that Americans, let alone childhood cancer awareness advocates, care about their children and they loathe censorship, discrimination, and the interference of their right to Freedom of Speech. It’s interesting that the owners of this “iconic American building” do not share these fundamental American values. I firmly believe that if more people knew the truth about childhood cancer, that they would take a stand and demand change. We care about our kids…but censoring the truth interferes with our ability to care FOR them. Why we care about being ignored yet again is easily discernible when reviewing the facts about childhood cancer (further below—I encourage you to please read to the end. Inaction makes you just as guilty as those who attempt to keep childhood cancer a “dirty little secret.” Action and sharing of this information is the only way you will save children. Turning your head and choosing not to share this information will further lead to their demise.)
Before the facts about childhood cancer, we first need to deal with the injustice and disrespect by the officials of the Empire State Building. I made Mr. Malkin aware that I had printscreened the thread, and that if he continued to censor our comments, I would make sure that I dispersed this evidence. He either thought I was bluffing, or thought I was telling the truth—which is why he promptly blocked me from his page.
Here is the story that ran on FoxNY: http://www.myfoxny.com/story/26227203/empire-state-building-lights
Here is what one could see on the computer of the status post, where Mr. Malkin, or some other staff member, attempted to appease the community by insinuating the childhood cancer community had not made the request via the proper avenue (we did…and he even hid that counter argument…) and his weak attempt to provide a reason (not a reasonable reason) for not lighting gold for the number ONE disease killers of children… On the computer, one could only tell posts were being hidden by the mismatch of the numbers of reported posts, and the actual number of visible posts. The smartphone Facebook app had a glitch—which allowed us to see comments were “greyed out”—being hidden from the public (further down):
Smartphone app glitch which showed the unjust censorship by the Empire State Building Staff with the “greyed out” hidden comments:
And here we are….photos that show that ESB has blocked childhood cancer advocates from their page:
(This notification above is what I would get when someone would “like” my Review on the ESB page, or comment on another review on which I have commented…but since they blocked me from their page, I could not see it by clicking on the notification. I could however see it by typing “Empire State Building into the Search bar, leading to the page, which shows that I have the power to view their page and share their posts, but my power to comment or like another person’s comment has been disabled).
Photo showing the ability to view and share, but no posting or liking:
And here are reviews that have been hidden from their page by the ESB ( ESB–If you put half your censoring effort into fighting childhood cancer with us, we would really be making a lot of progress right now…Wouldn’t that energy have been better spent making positive change and saving lives? I think so…) :
There were a lot more…but I wasn’t going to waste my time scrolling down the page to printscreen every Review they have “hidden.” There’s enough here for you to see the truth.
Photos of posts, conveying that photos of children and posts by advocates had been deleted:
For more go here: https://www.facebook.com/theTruth365film/photos/a.457070807653967.119738.445766622117719/897803460247364/?type=1&theater
Childhood cancer advocates continuing to call on the Empire State Building to STEP UP for childhood cancer awareness:
Hey, Empire State Building! You are even attaining INTERNATIONAL AWARENESS! I am not sure “infamous” is the type of publicity you wanted for your building… It’s not too late to show compassion…
ESB has decided to make their Instagram private. I think the Empire State Building staff severely underestimated the childhood cancer community’s will power and the will of the American people to fight back against censorship…
So why are we this upset? Well, to be honest—we are fed up. It’s one thing to refuse to light the building gold for dying children…it’s another to disrespect an entire group of people beseeching you to have compassion and reconsider having a heart (you know, one that cares for PEOPLE). You owe the childhood cancer community an apology for your actions, ESB:
Why will we no longer stand for keeping childhood cancer a dirty little secret? Well, here are the facts. Once you read them, you will understand why we can no longer stand for “hiding” of the truth, twisting the truth, or viewing reality through rose-colored glasses. The facts? Although you may hear the National Cancer Institute, the “American” Cancer Society (more appropriately named the “Adult” Cancer Society—but that’s another talk for another day), and our own Congress members claim, “We have made great strides in childhood cancer. The survival rate is now 80%!”…what they don’t tell you is that the survival rate is based on a 5-year interval, that a child who is diagnosed at 5 years old but dies at 11 years old is included in this “rosy-appearing” statistic, and that we mutilate, poison, and radiate children to kill their cancers…which cause long term health problems…because doctors do not have any better treatments available. Why do they not have better treatments available? They do not have better treatments available because of a severe lack of research funding for kids. The National Cancer Institute designates less than 4% of their funds for ALL childhood cancers…96% goes towards adult cancers… The “American” Cancer Society gives very little—many resources say less than 1% (although, they aren’t very forthcoming with their figures…anyhoo…they are another discussion. Why don’t you ask them what great strides they have made in childhood cancer treatments in the past several decades?…) The Leukemia & Lymphoma Society are said to give less than 2% to childhood cancer research (Every bit of research is important—kids need research too).
To learn more about this severe lack of funding, watch this video by TheTruth365 (and follow them on Facebook): https://www.youtube.com/watch?v=oljTL1iuMmY (It’s long, but complete)
This one is 8 min, and hits some important points if you are in a hurry: https://www.youtube.com/watch?v=qLnNyZclkDQ
Where you can follow the Truth 365–> www.facebook.com/TheTruth365Film Or go to www.thetruth365.org (and while there, sign the petition asking our country to make childhood cancer research a national priority)
Incidence of Childhood Cancer
- The incidence of childhood cancer has increased an average of a 0.6% per year from 1975 to 2010, from 12.5 to 16.8 cases per 100,000 population. This represents about a 35% increase in the number of children diagnosed over that period.
- In 2014 is it expected that overall, 1 in 285 children will be diagnosed with cancer before age 20.
- About 43 children per day or 15,780 children total are expected to be diagnosed with cancer in 2014. This includes 10,450 aged 0 to 14, and 5,330 aged 15 to 19
- The average age at diagnosis is 6 years old, while adults’ average age is 66
- Childhood cancer in not one disease, there are 16 major types of pediatric cancers and over 100 subtypes.
- The causes of most childhood cancers are unknown. At present, childhood cancer cannot be prevented.
- Childhood cancer occurs regularly, randomly and spares no ethnic group, socioeconomic class, or geographic region. In the United States, the incidence of cancer among adolescents and young adults is increasing at a greater rate than any other age group, except those over 65 years.
Five-Year Survival
- The average 5-year survival rate for all childhood cancers combined is 83%.
- Cancer survival rates vary not only for the different types of cancer, but also upon factos specific to each child.
- Survival rates for childhood cancers can range from as little as 0% for cancers such as DIPG, a type of brain cancer, to or as much as 90% for ALL (Acute Lymphoblastic Leukemia) leukemia, one specific form of leukemia.
- In 2010 there were 379,112 childhood cancer survivors in the United States.
- Approximately 1 in 530 young adults between the ages of 20 years and 39 years is a survivor of childhood cancers.
Long-Term Mortality
- While five years is a common criteria for cancer survival after diagnosis, when reviewing criteria for children, with their whole life ahead, we should also consider long-term survival.
- There are 71 life years lost on average when a child dies of cancer compared to 17 life years lost for adults. (1)
- Cancer is the leading cause of death by disease among children, killing more children than all other diseases combined.
- Cancer is responsible for more deaths per year in children than all other diseases combined. (4)
- PAC2 estimates that around 34% of children diagnosed with childhood cancer survivors will die within 30 years of diagnosis.
Source: http://curechildhoodcancer.ning.com/page/facts-1 From People Against Childhood Cancer
A study released in June 2013 by St. Jude Children’s research hospital reveals even more grim prognoses for children who survive cancer and the barbaric treatments used in their “survival.” These results were from a study which followed survivors after completing treatment for their cancers:
Overall, 98 percent of the 1,713 survivors in the study had at least one chronic health condition, hundreds of which were diagnosed through clinical screenings conducted as part of this long-term, comprehensive health study. Health issues included new cancers, heart abnormalities, abnormal lung function and neurocognitive dysfunction. St. Jude researchers found that by age 45, 80 percent of survivors of childhood cancers have a life-threatening, serious or disabling chronic condition. “These findings are a wake-up call to health care providers and remind survivors to be proactive about their health,” said Melissa Hudson, M.D., director of the St. Jude Division of Cancer Survivorship and co-first author of the research from the St. Jude Lifetime Cohort Study (St. Jude LIFE). Kirsten Ness, Ph.D., an associate member of the St. Jude Epidemiology and Cancer Control department, is the other co-first author. In this study, abnormal lung function was diagnosed in 65 percent of survivors at known risk for lung problems due to their childhood cancer treatment. Endocrine problems involving the hypothalamus and pituitary gland were diagnosed in 61 percent of at-risk survivors. Heart abnormalities were diagnosed in 56 percent of at-risk survivors and neurocognitive impairment, including memory problems, were diagnosed in 48 percent of at-risk survivors…The U.S. is home to an estimated 395,000 childhood cancer survivors. With long-term survival of pediatric cancer patients now surpassing 80 percent, the survivor community will continue to grow.
Source: http://www.stjude.org/hudson-survivors
St. Baldrick’s does a great job in showing the severe loss of life caused by “ignoring” childhood cancer and “hiding” the truth:
Source: http://www.stbaldricks.org/about-childhood-cancer?utm_source=facebook&utm_medium=socialmedia&utm_content=AboutCCinfographic&utm_campaign=aboutchildhoodcancer
The truth about childhood cancer has been hidden too long and has been ignored long enough. We need to #STEPUP and change the outcomes for future children who will come to battle. If we don’t act now, it could be your child, your grandchild, your grandchild’s child, etc (if it isn’t already) who is affected. Those of us who fight for awareness do not fight for ourselves or our kids—the long term side effects…the damage…or the deaths have been completed for us. We fight for your loved ones…who are yet to be diagnosed. We have a choice—to expose injustice and work for change—or to sit back & “relax” (for the time being), say “someone else will take care of it”, tell ourselves the lie that we cannot change it (We can! BUT we need your help—Yes YOU reading this!) or attest “It doesn’t affect me or my family…” (Well, it didn’t us either…until it did…and we can attest that previously health athletes and families with no history of cancer and who ate healthy foods, etc etc experience childhood cancer)
Now that you know, you cannot claim you didn’t. In the words of the late 10 year old Gabriella Miller, “Talk is bullsh*t. We need action!” Liking this blog shared on social media by your friend isn’t going to do much in the way of helping. Sharing it on your social media, and with various news sources will effect change by increasing awareness. I firmly believe that Americans care about their children (well, most anyway… obviously some don’t…). Will you help us care for our children? (I say “our children” in solidarity with our world citizens. I currently do not have children—but I care about “our children.”)
NEW DEVELOPMENT: Fox5NY…the station which first broadcast the story, exposing the ESB for censoring posts by childhood cancer awareness advocates just days earlier are now promoting the Empire State Building. Interesting… Further, they have disabled the ability to tag others in comments to bring attention to this matter (Notice the “greyed out” comment. I was told by my friend she tried liking that “greyed out” comment, and it would not allow her. It looks like the hidden comments did on ESB’s site.)
https://www.facebook.com/FOX5NY/photos/a.107956651319.116657.39442131319/10152695231591320/?type=1&theater
So–Your To Do List (Yes, you reading this! Please don’t be like “them” and hide the truth!):
1) Share this blog with all your friends with the hashtag #EmpireGoGold You can actually search for this hashtag. It’s quite amazing how many people are stepping up and standing against censorship, and providing awareness to our children who need it most.
2) Contact various media sources and celebrities and share this blog (and any other posts you find relating to this topic. The purpose of this blog was to bring together in one place as much evidence as possible):
Fox News: https://www.facebook.com/FoxNews
CNN: http://www.cnn.com/feedback/show/?s=storyidea https://www.facebook.com/cnn
Good Morning America: http://abcnews.go.com/Site/page?id=3271346&cat=Good%20Morning%20America https://www.facebook.com/GoodMorningAmerica
CBS This Morning: https://www.facebook.com/CBSThisMorning http://audienceservices.cbs.com/feedback/feedback.htm
The Ellen Degeneres Show: http://www.ellentv.com/be-on-the-show/10/ https://www.facebook.com/ellentv
Jon Stewart: https://www.facebook.com/pages/The-Daily-Show-with-Jon-Stewart/144785345555353
The Today Show: TodayStories@nbcuni.com
Rachel Maddow: https://www.facebook.com/therachelmaddowshow #maddow
Ask Celebrities, who we know care about cancer kids, to share this story and stand up for kids:
Brad Paisley: https://www.facebook.com/bradpaisley
Jeff Gordon: https://www.facebook.com/JGChildrensFoundation
Taylor Swift: https://www.facebook.com/TaylorSwift
Samuel L. Jackson: https://www.facebook.com/samuelljackson
Robin Williams: https://www.facebook.com/RobinWilliams
Justin Beiber: https://www.facebook.com/JustinBieber
Michelle Williams: https://www.facebook.com/michellewilliams
Natalie Grant: https://www.facebook.com/nataliegrantmusic
*Disclaimer—there are most probably grammatical errors, misspellings, wrong use of words, awkward sentences in the above post, etc. Considering I had two toxic chemotherapies pumped into the fluid which surrounds my brain many times over a period of 2+ years and had 1800cGy of radiation to my entire brain…which resulted in the late term effect of radiation-induced cavernous hemangiomas (leaky blood vessel tumors)…one of which that kept bleeding in the part of my brain responsible for language and intelligence (among many other important functions (the left frontal lobe)), requiring brain surgery less than 2 years ago…I would say I am doing pretty well. Cut me a break. 😉 I’m lucky to have the high level of functioning I have considering what my brain has endured as a result of childhood cancer.<3
Thanks for helping us fight cancer for kids and their families.
*I also apologize for the weird spacing/formatting on this blog. Despite my efforts, it looks normal in draft…and then becomes hokey upon posting. I am guessing this is because I have gone over the allotted space for a blog. 😉
Speaking Up for Childhood Cancer 