Earlier today, when I got on Facebook, I read a status written by a dad whose son Sammy has been declared to be No Evidence of Disease since last November. The status was about the Empire State Building and their seemingly heartless reaction to the numerous requests they have received to light the building gold for one night next month. September is, as you all know, Childhood Cancer Awareness Month.
This is what Sammy’s dad, Danny, said:
After talking with a friend who is a board member of a pediatric cancer NPO, I’ve decided to delete my review of The Empire State Building. I also will not be leaving a review on Yelp. If we are honest with ourselves we will acknowledge that doing so is a misuse of those features. We should not get angry when those reviews are removed and we receive a warning from Facebook. We also should not be taking over posts of lightings for other events and causes. I saw where many of us were commenting on the lighting for members of our military that earned The Purple Heart. My opinion is that was inappropriate.
I’m not saying to be quiet or stop our cause. I feel it is much better to continue to tweet. Instagram, Facebook and write blog posts. I believe we can gain media attention by laying out the facts. We have proof of them blocking pediatric cancer parents and of two denials of lighting requests. One from The Ronan Thompson Foundation and one from Tony Stoddardwho runs the “A Day of Yellow and Gold to Fight Childhood Cancer” page. We should continue to push those facts out to the public. We should also continue to send out photos of our children. Please be sure to get permission to use photos of children.
The ESB is running a photo contest with the hash tag #ESBHeartOfNYC. We should join in by using that hash tag with our #EmpireGoGold hash tag. If possible print out photos of children with cancer and take a picture in front of The ESB.
If we want to create positive change we need to be positive ourselves.
“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”
― Maya Angelou
I completely agree with this. I did not leave a Yelp review, because I have never been to the Empire State Building (to be honest, I’m not interested at all after recent events), but I did leave a one star review on their Facebook page and told them it was just unbelievable that they were deleting posts and blocking people just because. Your guess is as good as mine for their reasons. They have not been very forthcoming in their own defense, which does leave us wondering… But they are continuing to block people on Instagram, Facebook, and elsewhere who tag them with “#EmpireGoGold.” Silence seems to be their policy. That said, I am not deleting my review. It stands.
But I do agree we all need to take a deep breath and focus on the positive. We advocates (parents, nurses, doctors, siblings, extended family, and survivors, to name a few) need to stop going it alone, and come together to fight this monster. There are hundreds of small foundations throughout the USA, and that is good, but we need to come together to accomplish the end goal here. With social media, it is now easier than ever to reach the masses. We don’t just need awareness anymore. As sweet little Gabriella Miller said, “We need action!” We need our kids to be acknowledged as the strong fighters that they are. We need to get rid of the taboo that is on childhood cancer. Because we aren’t getting anywhere close to where we want to be. I’ve said it before, and I’ll keep saying it until I’m heard. I will scream myself hoarse if I have to. People in general do not know what the gold ribbon stands for. I remember telling a few friends how very not rare childhood cancer is, and they were completely shocked. I was shocked myself when I found out a few years ago.
As an advocate dad told me just a little while ago, “there is no such thing as bad publicity.” Now, I do not know if the people who work at the Empire State Building can say that, but when it comes to childhood cancer, it is so true. Childhood cancer has been getting the short end of the stick since day one. It is not just one disease, but many different kinds. When a child dies of cancer, the average years of life lost is 71. Seventy one years of potential, just gone.
It is simple to me. Children suffering from cancer are also suffering from a grave injustice. We are failing them big time. It isn’t acceptable anymore, not that it ever was. It shouldn’t be this hard. I dearly love the friends I have made in the pediatric cancer community, and I know that once we join hands, and face this monster together, we will be unstoppable.