Are You There, Empire State Building? It’s me, Maya.


IMG_8478-0Dear Empire State Building,

About a year ago, a formal application was sent in on behalf of The Ronan Thompson Foundation requesting that one night be lit up Gold to bring awareness to all types of childhood cancer. You see, my son Ronan, died just shy of his 4th birthday from Neuroblastoma, which is one of the deadliest forms of childhood cancer out there. The awareness color for Neuroblastoma is Purple and also just happened to be Ronan’s favorite color. When I filled out the application, it didn’t even cross my mind to ask the Empire State Building to be lit up Purple in honor of my son or any other child out there who had died from this particular form of cancer. I instantly wrote down Gold because it represented ALL 46 children who are diagnosed each day and ALL 7 of them who will die from this disease every single day, as well as the survivors. The color Gold represents all these kids, together creating an umbrella the world of Childhood Cancer so very much needs. You can imagine how heartbroken I was to get our application back to see that it had been denied. To whomever the person was that had to check that box off and make that decision, left me filled with so many questions.

How was this decision made and why? Did the people making this decision really know and understand the world of childhood cancer? Had they ever stepped foot on a children’s oncology floor? Did they know childhood cancer is the number one disease killer in America of our kids? That it kills more children than Asthma, Cystic Fibrosis, Diabetes and Pediatric AIDS combined? How over the past 20 years, only two new pediatric cancer drugs have been approved and how these kids receive hand me down adult chemos instead? How less than 4% of the National Cancer Institute Budget goes toward Pediatric Cancer Research? How these babies, toddlers, teenagers and young adults are repeatedly ignored in this world and many of them are too little to have a voice of their own? Maybe these childhood cancer statistics were well-known, but seemed so overwhelming and sad that nobody at the Empire State Building wanted to step up to take on this issue. I have heard from others before that childhood cancer is just “too sad,” and watched as they went back to living their lives of looking the other way. You know what else is “too sad?” That because of this kind of thinking, most of these kids will continue to be diagnosed and die just like my son due to the lack of awareness. Awareness that you could have helped raise with the sixteen million colored LED light system you had installed just to help out important causes such as this. Instead in the past you have chosen to light it up for “causes” such as a Westminster Dog Show, football games, the release of a Mariah Carey Album, and the Teenage Mutant Ninja Turtles 25th Anniversary. All of these past applications were approved, but why not the many that have been sent in from all the different childhood cancer organizations? Why would you not light up for a cause that would help bring awareness and save children’s lives? Are you really going to tell me that a blockbuster movie or the release of a new album is more important than these kids who deserve to grow up and have a future? Are you really going to tell me a dog show is more important than my son? I would really like a face to face meeting with the person who could look this broken-hearted mother in the eye and tell me that. By NOT lighting up the Empire State Building in Gold, that is pretty much what you just did. You basically just told me my son did not matter. I am here to tell you he DID and he DOES.

Maybe if you were to really hear a story, a true story you would change your mind. Meet Ronan. Ronan the absolute love of my life (as well as my other 3 kids that I am lucky enough to still have). Ronan was born healthy and grew into a little boy who would stop people dead in their tracks because of his drop dead gorgeous looks and huge blue eyes. Beyond his looks, he was a soulful little boy who lived his life being fearless, wild and free. I nicknamed him my “spicy little monkey” due to his feisty personality. For the first three 3 years of Ronan’s life, he was perfectly healthy. We lived a beautiful life where childhood cancer didn’t even cross our minds because the lack of awareness left us ignorant and blissfully blind. During the time Ronan was here any healthy, we had no idea that September was Childhood Cancer Awareness month or that Gold was the awareness color. We were not aware until we had to be aware and that is one of the biggest problems that childhood cancer is facing today; that nobody is aware of the epidemic that it really is, until it happens to them or someone close to them.

Ronan’s diagnoses came out of nowhere. One minute he was running around acting like a normal three-year old boy and the next minute we found ourselves at our local hospital where we were told Ronan had Stage IV Neuroblastoma. As you can imagine our world was turned upside down and we were thrown into a world that I would not wish on my worst enemy. The sad and scary, dark world of childhood cancer that people like you, are just not talking about. A treatment plan was put into place for Ronan as we consulted with the best hospitals and doctors in the world for the specific type of cancer he had. In the beginning, I was filled with so much hope as I was just sure my son was going to survive. There was no way my son was not going to beat this and there was no way his story was not going to be a statistical success. Ronan dying was just not an option. At first his cancer responded very well to the adult poison that was supposedly saving his life. We made it through the first five rounds of chemo and the scans showed major improvement. It was only after the scan right before he was set to go into stem cell transplant that we would come to find out he had too much cancer left in his body to continue on with the treatment plan our doctors had mapped out for us. That course of treatment was no longer working, so a new plan had to be put into place to save my baby’s life. We ended up back in your city at Sloan Kettering where Ronan had been just a few months earlier while we had the base tumor removed out of his abdomen. Ronan and I fell in love with New York together during our time out there. It made us braver, stronger and filled us with so much hope that he was going to beat the odds. I was convinced between our doctors, your city and the unbreakable bond between a mother and a child, Ronan would surely come out of this as a survivor. We started Ronan on a different more aggressive chemotherapy which left us inpatient at Sloan Kettering for 28 days. Soon after that we were told Ronan’s cancer was no longer responding to chemo and I had to walk out of Sloan Kettering, clutching onto my child knowing that his life was going to end.  Please stop right here for just a minute. Close your eyes and repeat that last sentence while placing yourself in my shoes.  I do not want to explain to you how horrific of a moment that was for me, so the best I can do is ask that you just imagine it and then try to go on about your day.

I often felt as though Ronan was being experimented on like a lab rat and I didn’t understand why more strides hadn’t been made in the world of childhood cancer. I quickly learned it was because childhood cancer seemed to be a dirty little secret that nobody wanted to talk about. If nobody is telling the story of childhood cancer, research is not being done because the funding is just not there. Without the proper funds, cures will not be found and these kids will just continue have the same outcomes that they are now, which are grim at best. I proudly stood by Ronan’s side for 8 months and often times I felt so broken, tired and weak to continue on. I would often look to him for strength. His little light would inspire me to get back up and continue to fight. Even after all the awful chemo, surgeries, radiation, vomiting, “pokies”, broviac dressing changes that would leave him screaming, “I NOT A BRAVE BOY!!!,” he always held his head with such pride and dignity, never wanting to show me how scared he really was. It was as if he knew that not only did I need his strength then, but I would need it for the years to come when I would have to live this life without him. After eight months of watching Ronan fight with everything he had, I started to see the way that cancer had eaten away at his little body, leaving him a shell of what he once was. Ronan died just three days before his fourth birthday. Right before he left, I made him a promise. I promised him that I would continue to fight for him harder than ever until the world of childhood cancer changed in a very big way. That means more awareness, more research, more funding and more cures. I never want another child or parent to go though what we have had to go through. Ronan deserved better. All the other kids out there who are dealing with this, deserve better. Things have to change and until they do, I plan on fighting the only way I know how. The way that Ronan taught me– by being as spicy and fearless as possible.

This brings me back to why this whole post got started in the first place — that little lighting request that got denied. September is right around the corner and through social media, I started to hear the soft little roars from other parents in the childhood cancer community who had requested the same thing, only to be denied. One from an individual, and quite of few from other childhood cancer non-profits. These soft little roars soon started to become louder and louder and it seemed as if the entire world (at least in my mind) finally cared about this very important issue. A social media campaign was launched with the hashtag #empiregogold. Thousands of people started voicing their opinions on this matter to any and all social media pages of the Empire State Building. They became outraged when they noticed that their posts about anything childhood cancer awareness related, started to disappear as well as pictures of their children. Children who were currently in treatment and even the one’s who had sadly died from this horrific beast. It was a slap in the face to the many of us that are trying to change this. It was as if once again, our children didn’t matter and this “dirty little secret” was expected to be buried and die. The community of the childhood cancer world was not going to stand for it. After a week of the Empire State Building doing nothing to address the cries of thousands of people, an official statement was finally released:

The Empire State Building makes the following statement on behalf of its employees.

Recently, an individual requested a tower lighting for childhood cancer awareness. It is clearly stated on our Lighting Partner Application on our website that the Empire State Building does not accept lighting requests from individuals. A social media campaign has been launched to lobby for this individual’s request with a false pretense: that the Empire State Building does not care about children with cancer. Nothing could be further from the truth.

In support of organizations which help people suffering from this terrible disease around the globe, the Empire State Building has provided lighting for “World Cancer Day” in partnership with the American Cancer Society, whose mission is to eliminate all types of cancer; for breast cancer awareness, with the Breast Cancer Research Foundation; for blood cancer research, with DKMS Delete Blood Cancer; and for pediatric cancer treatment and research, with St. Jude’s Hospital.

Sadly, there are over 200 different forms of cancer—in addition to all of the other diseases and tragedies for which we receive Lighting Partnership Applications. Each of us has a personal cause which is important, and many of our employees have had direct personal experience of loss from cancer as well as other personal health tragedies.

The Empire State Building is making this statement because this social media campaign has become abusive. Empire State Building employees have been personally attacked on the phone and harassed by e-mail and the internet by people who do not know them with profanity, threats, bullying and, perhaps the worst, wishes that they “get cancer.”

The Empire State Building is privately owned. All Lighting Partnership requests go through an application review process. There is no lighting in 2014 for organizations which address childhood cancer. Organizations which behave responsibly may newly apply for a Lighting Partnership in 2015 and future years.

I read this on Sunday when I was trying to take a break from all of this madness. I only wanted to enjoy watching my 11-year-old twins play basketball. My twins who play their hearts out for their dead little brother who will never get the chance to do so. You want a prime example of how kids turn out to be so great? It’s in the eyes of my twin boys who know too much pain and sadness due to the death of their baby brother. They go forth in everything they do carrying the brother that they loved more than anything on earth with them because he is no longer here. So, on the days that I have to wipe the tears out of my 11-year-old eyes as he is standing on the court getting ready to play in the big game as he looks up at me and says, “I wish Ronan were here to see me play…” I somehow have to muster up the strength not to vomit all over the court but instead kiss his forehead, wipe his face and say to him, “I promise you he is watching everything you do and he is so proud.”

The Sunday that I read the official response from the Empire State Building, I felt my knees go weak and the color drain from my face just in time to see my 11 year old’s team WIN the fucking championship game. The one that their baby brother should have been watching from team bench. This is not the reality of just my family, but it is also the reality of so many others. Childhood cancer is not going to go away and until it starts to get the awareness it so desperately needs, it is not going to change or improve. Your official response is a shining example of the major problem facing kids fighting cancer. People think that when they give money to a huge corporate cancer charity, they are helping the very kids they see on those coin jars and posters. Unfortunately, the truth is much different. Please see the following article penned by Jonathan Agin in the Huffington Post last year. The American Cancer Society that you partnered with, pretty much does NOTHING for our children except use their shiny bald heads as a ploy to receive donations. I guarantee you when you mentioned that you had partnered with the American Cancer Society, all the parents in the world of childhood cancer felt like they had just been slapped across the face, including myself.

http://www.huffingtonpost.com/jonathan-agin/friends-dont-let-friends-_2_b_2759403.html

I am going to wrap this up here because if I do not, this will turn into novel that I do not want to write. Just know that I have watched my son and his fight, inspire millions of the most amazing human beings on the planet. I have seen kids, teenagers, tweens, young adults, grown adults, grandparents from not only the United States, but all over the world come together to move these mountains. All because of Ronan his little friends that you have chosen to ignore, in 2014 at least. Maybe in 2015, you will change your minds and light up the Empire State Building gold like so many of us have requested. If not, I am not worried as it seems so many others are stepping up to the plate due to the harsh stance you have taken. ( I FREAKING LOVE YOU TIMES SQUARE!!!) I think you may have underestimated the advocates of childhood cancer community just a tad bit. We are not the bully’s you made us out to be. We are simply just people trying to change a very dark world and give it the little bit of golden light to help it grow and change. We are simply trying to give these kids, OUR kids a future and a chance so they can grow up to do the amazing things that I know my son would have done. It really is as simple as thinking, “What if this were my child?” If it were your child, you would want the best awareness, funding, and treatments possible so you would not have to kiss their urn every night instead of tucking them into bed.

Speaking of bed, I have to go to mine as it is now early in the morning. Goodnight, Empire State Building.  You would look so good in the color Gold.

Goodnight, Ronan. I miss you. I love you. I hope you are safe.

xxoo

P.S. Please excuse any typos as I have not had much sleep due to obsessing about this little world I am trying to fix.  Even though my son may be dead, that doesn’t mean I’m not going to fight just as hard for him as I would for my other kids who I actually get to tuck in and kiss goodnight. I also just miss my son so very much.

P.P.S  We are having our 3rd Annual Gold Party September 27th at the W Hotel in Scottsdale, Arizona. Do you want to come and just make a big fat donation instead? All the money we raise does not go to anyone on our board as none of us take paychecks and we don’t have any employees. Instead, it goes towards helping fund the clinical trials these kids so desperately need. It’s a really fun party and I won’t even throw you in the pool at the end.  Well, unless you want me to… you should have seen last year.

IMG_0127

 

I've been saving this picture for a rainy day and it poured in Arizona, today. This is the reality of the world you chose to ignore.

I’ve been saving this picture for a rainy day and it poured in Arizona, today. This is the reality of the world you chose to ignore.

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38 Comments

  1. Mel

     /  August 20, 2014

    BRAVO!!!!!!!

    Reply
  2. Now THAT is making a statement. Beautiful written, mama. I wish it didn’t have to be this hard. I love you so much xo

    Reply
  3. Amy R

     /  August 20, 2014

    Speechless, Maya. It’s beautiful. It’s perfect. And yes, I ugly cried in my van while reading it. Ronan is SO PROUD of his mama.

    Reply
  4. Perfectly said as always. That last picture breaks my heart :(

    Reply
  5. Ll

     /  August 20, 2014

    This post really made me cry & angry. FU Empire State Building how can you not do this one amazing thing just forget all about the stupid rules & think of the kids who are fighting and have fought for their lives.

    I bet you would do jump at this if it was Justin Bieber or some other celebrity.

    I’m disgusted & if I ever visit NY I refuse to visit your building because of this.

    Laura

    Reply
  6. bless you Maya for writing this.

    Reply
  7. Cassandra Greco

     /  August 20, 2014

    Maya,

    I can not believe they had the balls to send you that! How could they just throw that aside!? It’s mind boggling! Makes me sick. That picture just breaks my heart, he is the most beautiful boy in both of those pictures. I think we should pick a day to go to New York and stand out front of Empire State Building! I know Trish Anderson Bumpus will be there sometime in September with her Mafia. I would be there in a heartbeat for both of you! Love you Maya and I will stand being you guys with my chin up hi! Love you Ro!

    Reply
  8. Love you Maya. I lost my son in an entirely different sudden and tragic way. The pain is every second unbearable. I have said the same as you, one may know the pain of losing “their” child but they can never know the pain of losing mine.. Keep fighting, you ARE being heard!

    Reply
  9. Oh and sometimes life is strange,.WE know that. Maybe they turned everyone down so you get the even MORE awareness from the other wonderful places stepping up…Ro maybe..

    Reply
  10. Rachael

     /  August 20, 2014

    Ignorance is only bliss for those who are ignorant. Just saying.

    On that note I wanted to let you know we had a softball player in our community die at 16 from a kidney cancer, she was the youngest person ever to get it. This form of cancer usually chooses to attack people when they are in their 50′s.

    Her name is Taylor Filorimo and the softball community in Middle TN started the “Play for Tay” tournament to help her family with medical bills. Unfortunately, Taylor lost her fight to the disease shortly after the tournament happened. 9/5/2012. She was at the tournament and was and still is an inspiration to the girls who knew and got to meet her. Her motto is “I will not let the fear of CANCER strike me out”

    The tournament has continued and now the money is used to help bring awareness to childhood cancer and other families that are dealing with this awful disease with travel expenses.

    We support childhood cancer awareness in TN and from reading your blog I have no doubt that the Empire State Building will be Gold next September. They don’t know who they are dealing with:)

    Reply
  11. Lynnett J

     /  August 20, 2014

    Wonderful post Maya – you tell them!!!! How they can deny applications, the applications they require & then act like they are being bullied through no fault of their own is amazing. Always supporting Ronan & your family. God Bless,

    Reply
  12. Darci Sennett

     /  August 20, 2014

    Don’t give up Maya!!!! We will get that building lit up no matter what!

    Reply
  13. Thank You Maya!

    Reply
  14. If this isn’t the most moving fucking thing you’ve ever read, then you have no soul.

    Wake up, whoever makes this decision at the Empire State Building.
    Wake up, whoever decides where cancer research funds go.
    WAKE UP AND STAND UP FOR OUR KIDS.

    Reply
  15. Christine Gallagher

     /  August 20, 2014

    How in the world do they change for Mariah, who doesn’t need any more attention, but can’t change to raise awareness for something as significant as this. God bless you and if there is a petition I will gladly sign and will certainly share. So sorry for your loss. xoxoxoxo

    Reply
  16. I cry almost every time I read your posts. You’re an amazing woman and Ronan is lucky to have you as his mother.

    Reply
  17. Kristina Edel

     /  August 20, 2014

    Thank you. Thank you for writing this. You speak for me and so many other cancer parents out there. Just around the time that. Taylor Swift was singing “Ronan” on that cancer telethon, my 11-year-old daughter Julianna was experiencing unexplained hip pain. It was on September 27th that year that she was diagnosed with Ewing’s Sarcoma. It was widely metastasized from her pelvis to her fibia, lungs, liver, and every vertebrae in her spine. She passed away almost a year later on September 20, 2013.

    I too was blissfully ignorant about childhood cancer until Julianna was diagnosed.I too felt like the ESB’s statement mentioning their connection to the American Cancer Society was a slap in the face.

    Reply
  18. Vanessa Fernandez

     /  August 20, 2014

    I shatter into a million little pieces. Keep fighting though I know you need no encouragement because YOU are the epitome of spicy monkey spirit….

    Love from Miami

    Vanessa

    Reply
  19. Caitlin

     /  August 20, 2014

    I was annoyed before I knew about the album, dog show and movie. Now I’m just pissed off and angry. They make it sound like we’re the bad guys!

    Reply
  20. Lori Baldizzone

     /  August 20, 2014

    U F…..G ROCK MAYA…..That is the BEST letter ever!!! I don’t know u but I love u

    Reply
  21. Melissa

     /  August 20, 2014

    I just reread this. Maya. You should not have had to watch Ronan endure this battle, you should not be wiping your boys’ eyes as they long for their baby brother to see them play in a championship game, you should not have to TELL Poppy about her big brother, Ronan, you should not have your heart shattered into an infinite number of pieces for the rest of your life, and I just can not believe that you or any other person on this Earth has to beg the ESB to go gold. It just doesn’t seem like it should be that complicated, that difficult. It is easy. How can they or anyone else say no? How on Earth can they say no? I am so sorry–for Ronan, for you, for all of the people that loved him and all of the people that would have loved him during his very long lifetime.

    Reply
  22. Erin Langhorst

     /  August 20, 2014

    THANK YOU for writing this.
    THANK YOU for being a voice of reason, compassion, experience in the midst of the nightmare of Childhood Cancer.

    I am SO SORRY Ronan, you, your children, your family, friends had to go through cancer stealing his life.
    I am SO SORRY for the ignorance of so many people and the misleading CRUEL , dismissive letter written by the Empire State Building.

    I freakin’ LOVE Times Square too for going gold as well as the many other monumental buildings that are following suit and lighting for our children as THEY DESERVE to be recognized. They DESERVE the awareness. They are KIDS. It’s not like they can advocate for themselves!!

    By writing this you not only gave others a very personal emotional real peek into the world of childhood cancer, but you called on people to care. You have spread awareness and have truly honored your son.

    Awareness= Funding=Research=Cure!!

    I stand with you in honor of my nephew Frankie age 12, who is fighting 2 different kinds of childhood cancer for the second time in NYC. I stand with you for the 46/7 and as a mother whos heart bleeds for the way I know yours aches.

    God bless you and may Ronan continue to shine his light upon your heart. xo

    Reply
  23. Dean Ventimeglia

     /  August 20, 2014

    Thank you Maya, for all that you continue to do and those that you continue to advocate and fight to help.

    Reply
  24. #EmpireGoGold #FuCancer #RoLove #AlwaysRoLove #Awareness #KidsGetCancerToo #FightOn #MayasMafia

    Reply
  25. judith

     /  August 20, 2014

    Thank you for fighting the fight that is needed…. from a mom of a childhood cancer survivor.

    Reply
  26. KATHY WALTON

     /  August 20, 2014

    SHAME ON THEM.

    Reply
  27. Kerry

     /  August 20, 2014

    Wow Maya, just..Wow
    The photos of Ronan all the proof anyone should ever need :-(
    You are doing such tremendous work Maya-keep fighting the fight xxxxx

    Reply
  28. Michael

     /  August 20, 2014

    I feel your pain, however, I would suggest that there is another way to wrap the Empire State Building in Gold that might bring even more attention to Childhood Cancer. Name a date and ask supporters to show-up at the Empire State Building wearing GOLD shirts or have them there for people to buy. Join arm in arm and surround the building. Just be sure to notify the media to cover the event.
    I wish you all the best!

    Reply
  29. Madeline

     /  August 20, 2014

    The fact that there are so many cancers and diseases that are killing people should be even more of a reason to help bring awareness to them. There is not enough funding because of the lack of awareness! If the Empire Stare Building wants to light up for a cause, do it for something that’s worth it! The life of a child is worth much more than a ninja turtle movie ticket!

    Reply
  30. Paulina

     /  August 20, 2014

    A very good lesson of class and love. It’s Ok Maya, if they don’t do it. The shame it’s on them. You have already moved mountains. And you with all your supporters will change the word. That ugly cancer world. Love you, girl!

    Reply
  31. Mama Maya, I am so glad you are leading us in this fight. You are so brave and have so much passion for Ro and for all of us. I thank you so much for that. You are amazing. You are strong. Ro must be so proud of his mommy. Thank you for inspiring me not to back down and not to be afraid of rejection from the people who turn their back on us and our precious children. Thank you so much.

    Reply
  32. Kelly Robinson

     /  August 21, 2014

    Thank you for putting into words what all parents feel as they continue to fight and raise awareness for the children they lost to this nonsense disease. Only a parent of a child of this diagnosis could truly fathom the pain and torment that goes on forever in our hearts and minds. Thank You for having the guts to push this where it is today! If not a simple agreeable Gold lighting to join the rest of NYC for the spirit and support of our cause, then the negative attention received by the Empire State Building will surly bring about awareness 10 fold! Many of our children were treated and spent vountless painful hours there in NYC fighting for their lives. Many visited this historic landmark on their clinic/hospital breaks to enjoy some much needed normal family time. The least they could do is to honor these precious children we are so desperately missing, who’s family chose to support their landmark city attraction! I truly hope they make the right decision to honor our families, who have made this one simple request, for the most underfunded, desperately needed, best ever.. Awareness Cause!
    Kelly Robinson
    Franklin MN
    Mom to Carl Robinson 12-28-99 to 11-26-2004

    Reply
  33. Monica

     /  August 21, 2014

    Maya,
    I have been following (and advocating for!) your campaign to get the EPS to go gold, as I did last year. After reading the official EPS response, it not only intensified my feelings of dismay and disappointment, it made me downright f—ing furious. I cannot even get in to how furious I am over their allegations spinning this heartfelt effort in to something abusive towards themselves and their employees, because I seriously will throw my hands up and scream. And doing so will only benefit their twisted statement and provide them with the response they are quite obviously seeking. Words cannot describe how WRONG the entire thing is.
    I don’t know how you managed to put together such a beautiful, passionate and eloquently written letter, but I am speechless. Thank you for writing and posting this. It’s perfect. You are an amazing woman!!!

    Reply
  34. Kelsey Hart (will make #empiregogold)

     /  August 21, 2014

    I’m fucking crying cancer tears looking at the last picture of Ronan. #EMPIREGOGOLD

    Reply
  35. I did not know…

    Thank You…

    Reply
  36. Reblogged this on From The Pews and commented:
    I did not know…

    Thank you, Maya…

    Reply

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