Dear Empire State Building, Part 9

 

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Dear Empire State Building,

I started reading Maya’s Rockstar Ronan blog about 2 years ago when my son was a year old. I instantly felt connected to her. Probably because as a relatively new mother at the time, I could relate to the fierce love she felt for her children, including the little boy that she lost in such a horrific way. Perhaps I felt an even stronger connection with her because I share the same birthday as her beautiful boy Ronan. I don’t really know the reason, but I do know that every time I read her blog I found myself crying – and, I am not a crier. My husband would watch me in shock and ask me to stop reading the blog since it made me so upset. And I would respond that I can’t. Because, at the end of the day, even if you close your eyes, pediatric cancer does not go away. And one day it may impact you directly and change your life forever. And the idea that you can wake up one day and take your child to the doctor and find out that they have some form of cancer – rare or not — is the most terrifying thing in the world.

For me, the hardest thing about being a parent is the fear that one day something bad will happen to the little person that I love more than anything else in this world. I like to think that I can protect my son from all the bad things in this world, but the truth of the matter is that no matter how hard I try, there are some things I cannot protect him from. Like cancer. Knowing the truth of that paralyzes me with fear sometimes and makes me feel helpless. I’ve come to realize, however, that doing nothing will not change that reality. Perhaps if we all did something about it, we could change the grim statistics so that a diagnosis of pediatric cancer wouldn’t be so terrifying anymore. We can all make a difference. We can help to raise awareness. We can donate our money and time to the right organizations. We can lend support to those who need it.

And, Empire State Building, you can do what you do best. Light up Gold for one night in September. There is no reason not to. New York City is home to one of the best cancer hospitals in the world. That hospital, Memorial Sloane Kettering has saved the lives of countless children battling pediatric cancer. It has also sent many children (like Ronan) home to die or has seen them die within its walls. Honor those children. Honor their fight. Bring awareness to pediatric cancer. Awareness eventually leads to more funding and more funding will lead to a cure. Our children deserve a cure. Help give them one.

Go Gold!

-Joanna Kordalis

Dear Empire State Building, Part 8

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Dear Empire State Building –

 

 

 

My name is Kate. I am 9 and lucky enough to not have cancer. I know what I want to be when I grow up, but I hope that job isn’t available anymore when I’m a grownup. I want to cure cancer and help little kids get back to normal life! You might wonder why a kid without cancer would care so much about it, so I will tell you…

When I was six, I learned about Ronan and Maya Thompson and my whole life changed. Unfortunately, I could only know Ro through his mama’s stories about him because he died. My mom is my best friend – just like Ro & Maya were best friends. My mama read me Maya’s list of “How to Live Like a Rockstar” and we have been doing that ever since. I didn’t want mamas to have to feel like Maya feels every day because cancer took her sweet spicy monkey away.

My friends and I do everything we can for kids with cancer. We dance to raise money, we decorate pillowcases and posters to brighten hospital rooms, we host lemonade stands, we wear bracelets, we write their names in the sand on beaches, we release balloons on their birthdays and so much more. We do all we can, but we need the help of powerful adults to put big smiles on kids’ faces. Kids are supposed to be in parks playing with their mamas and daddies, not tucked away in hospital rooms. PLEASE HELP US.

The other day, I gave away really good lemonade and lollipops at our park to raise awareness about Childhood Cancer Month in September. I sat down with two volunteers from Camp Sunshine who wanted to hear all about why I was giving away lemonade. I told them 46 kids are diagnosed with cancer every day and that they are treated with medicine for adults. I told them every fact I could remember. They promised to tell more people. Then there were people who never even stopped to get my lemonade or one of the lollipops. It mad me really sad – not because I was a kid GIVING AWAY lemonade, but because that was one more person who didn’t know how big of a problem childhood cancer is and how much these kids need help.

If I could, I would go to companies who make medicine and ask them to help, but I’m a little girl. So, I have to do what I can and be sure to get great grades so I can go to medical school and fix it myself. My mama tells me to ask adults for help when I can’t do something by myself. So, for now I am asking you to help me tell more adults who can help. I live in Boston, but I love New York – everything about it. During my first trip to New York, you were lit up pink for breast cancer. And I just saw you lit up green for the Ninja Turtles – my friends love them! You have such a beautiful building and I hope you will light it up GOLD. That will put smiles on the faces of kids, mamas and daddies everywhere!

I know you are very busy. So, if you take one thing from my letter, please take Maya’s advice on living like a Rockstar. She said, “Trust your instincts. Listen to your heart as it is more powerful than your mind.” I hope your heart will show you the power of fighting for kids with cancer.

BeBoldGoGold.

Thank you!

Love,
Kate

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Are you ready to be a Spicy Monkey??

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Our lovely friends at SpirtHoods are re-relasing the ever so popular Spicy Monkey just in time for September! There will only be a limited number available and the first time around, they sold out fast!

Stay tuned for a release date! We love this company so much!!!

 

 

https://www.spirithoods.com/spicymonkeys

Dear Empire State Building, Part 7

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Dear Empire State Building,
My name is Sabrina Houara and I just finished my first classes at Arizona State University, where I’m majoring in health sciences pre-professional, hoping to finish in 3 years instead of four. That’s me: over-achiever, future doctor, overall nerd, and voice for kids with cancer.
I know with every part of me that I was meant to be a pediatric oncologist, but I may have never found this path if it hand’t been for Maya and Ronan and their inspiring love for each other. Like so many others I first heard Ronan’s story when Taylor Swift first sang her song Ronan, based on Maya’s blog. I looked up the story and spent the next few weeks reading and bawling.

 
It seemed unimaginable to me that this beautiful little boy could have been ripped from the world so soon, and that so many kids are taken by this awful disease known as childhood cancer. I’m still baffled by the statistics. I knew after just a few posts in that I had to do whatever I possible could to help change this, but I still wasn’t sure how. Then a few days later I approached my parents with an idea: I wanted to be a pediatric oncologist, and they were completely on board. I quickly began forming this idea of what kind of doctor I would be, but I already knew. I would be the kind of doctor I would want for myself, for my own children whenever I have them. I want to be the type of doctor to fight for each and every patient with everything I have, because this is life or death for them. When I tell people that I’ve decided to go into this field I’m usually met with some form of the phrase, “Oh that will be so sad, I could never do that.” But if I can save the life of just one child, it will be worth it to me. These kids will be dying whether or not I’m right there on the front lines, so I will do everything I can as a doctor to help change this for them.

 
The thing is, it won’t matter how good of a doctor I am (and I plan on being a flipping good one) if we can’t get more funding for childhood cancer. The more funding we can get, the more experimental trials we can fund, and that brings us one step closer to finally finding a cure for this horrible disease that is taking the lives of so many children. The key to getting more funding is to raise awareness, to get people to realize that childhood cancer is a real problem, and that it takes the lives of 7 children every day in the US alone. Those who survive are left with side effects from treatment that will affect them for the rest of their lives. We need for more people to see this, to want to help.
This is where you would come in. Lighting the Empire State Building gold for one day in September would bring heaps of awareness. Many families were seriously hurt when you denied their requests, it felt like you were saying their child didn’t matter. I don’t know any of this firsthand, but it’s easy to tell from the social media campaign that came soon after two non-profits filled out your application and were denied.
You can still make this right. Please find it in your heart to change your mind, for these kids. For Ronan and far too many others. Help us make it so that no parent, grandparent, aunt, uncle, sibling, or cousin has to watch their loved one slowly die as a result of childhood cancer. Help us make it so that no child knows the pain of having their little body invaded by cancer and the horrific treatments that go with it. Help us raise awareness for childhood cancer so we can find a cure and no child will ever die from this killer again. Again I say, you can still make this right.

 
Sincerely,

 
Sabrina Houara
Childhood Cancer Awareness Advocate and Future Pediatric Oncologist

Dear Empire State Building, Part 6

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Dear Empire State Building,
My name is Jennifer Garcia and I am a 24 year college student from California. I have been to New York once and I remember feeling like it was the most magical of places, the place where anything could happen. I always aspired to go back one day and I hope when I get the chance that I can know that for one day in September the top of the Empire State Building sparkled gold for our kids. I say ‘our’ kids because it shows how much of a tight knit group of people we are, us activists for childhood cancer awareness.

You think that we are pushy, mean and threatening? We are passionate, angry, devastated and some broken beyond repair by the loss that we face everyday. The loss of a child whether it was our own child, a friends child, a little brother or sister or a beautiful boy with the most sparkling blue eyes that you only know through photographs and the words of a mom who will never stop fighting for him. I was aware that kids get cancer, I saw the St. Jude commercials and I would frown for a moment and then the program I was watching would come back on and I was sucked back into the happy state of ignorance. All that changed when I watched Taylor Swift sing at the Stand Up To Cancer telethon. Before she even finished the song I was sobbing uncontrollably. When i was finally able to compose myself I raced to my laptop and typed “Ronan” into Google. My world changed that day I could no longer just shake my head and think how sad when I saw the St. Jude commercials or the collection jars at the supermarket. I started doing research and was horrified when i found out how underfunded pediatric cancer research is. All the times I donated to American Cancer Society only 1 cent for every dollar went to pediatrics. Our kids are getting swept under the rug like a dirty secret. It seems like the world is whispering, “Shhh, If we don’t talk about it maybe no one will notice.”

Well, we have noticed, it is all around us, the world is full of scary things and we want to protect our children any way we can. Unfortunately, we can’t protect them from this we can kiss away their tears and try to make them smile but this isn’t just a scraped knee or them teased at school. This is the biggest bully they can face and no matter how much we whisper to them “It’ll be okay” we know this is one thing we can’t promise to save them from. There is nothing worse then knowing you can’t protect them. When I read that Maya was trying to get you guys to go gold for ONE day in September, sadly my first thought wasn’t this should be easy. My first thought was this is going to take some work to get noticed. What kind of world are we living in where we have to shout and send out petitions and trend worldwide on twitter to raise awareness for childhood cancer. You light up different colors for the dog shows and the Ninja Turtles movie premier. Are dogs and ninja turtles more important than our kids? In a way that is what it sounds like your saying.

I read the message that you don’t take requests from individuals just organizations. The Ronan Thompson Foundation is an organization and they along with thousands of others are begging, yes begging, you to change your mind and do what is right. Restore our faith in humanity and turn gold for one day. We are not a picky bunch, you choose the day in September. Just please light up gold. I am not one to beg or plead but I want to have kids one day and I don’t want to bring them into this world knowing that Cancer is a possibility for them. I want them to have endless possibilities for happiness and success. I want them to live spicy sparkly lives and I want to know that the possibility is there for all kids. We can’t save them all but we can try. We can try extra hard for those kids that didn’t get to reach their full potential. The one’s that we only saw fleeting glimpses of the outstanding things they were going to do. Help us make their lights continue to glow gold.
Be Bold Go Gold,
Jennifer

Dear Empire State Building, Part 5

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Dear Empire State Building,

First of all, I was born and raised in NYC and am devastated that such a huge landmark in my city is refusing to help with a cause that is so important.

I am a pediatric nurse that takes care of children with cancer. I have watched multiple patients of mine suffer and die right in front of my very eyes from this horrific disease. I am the person that has to administer the chemotherapy, the poison that is these children’s only hope. I am the one that has to change their port needles weekly (imagine a 3 year old, needing 2 needles in their chest to be switched out every week). I am the one that has to give them a shot every day when their counts are low and they are at high risk for infection. I am the one that has to force these children to take multiple medicines that they hate, every day, multiple times a day. Imagine a 3 year old, begging me to put his medication that needs to be taken by mouth in his IV. Or pleading with me to give him the “orange”medicine instead, the only one he actually likes. I am the one that has to give a screaming toddler eye drops every 2 hours, while they receive a certain type of chemo.

I see first hand, daily what these children go through. I see so many children with cancer that is so rare, that they are using a protocol from hundreds of hears ago, or sometimes there isn’t even a protocol and they just have to make it up as they go along.

Even some of the nurses that I work with aren’t aware that september is childhood cancer awareness month. Or that gold is the color for pediatric cancer. These children so desperately need this awareness. I can’t possibly understand how you could argue that these innocent children don’t deserve for the empire state building to light up gold for them. Please, I beg of you, to reconsider. I can only hope that you are not refusing to do this out of spite and that someone that works for the administration has a heart and will do the right thing. It isn’t too late!

Ariel Brettholz,

RN at New York Presbyterian Hospital in New York City

A little shout out to my amazing home town.

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While I was home this summer, a group of amazing people put on the second annual 5k for The Ronan Thompson Foundation.  It has become one of my favorite events and I am always so proud to be back in my hometown, running for Ronan.  I just wanted to take a minute to say a special thank you to Laura, Jen and my mom for putting this together and making it such a success. Also, a huge thank you to ALL of our volunteers, vendors, sponsors, those who came out for the event and all of the amazing auction items.

I cannot wait for next year and I am so thankful for all of the hometown love. You all are seriously the best!!

xx

THANK YOU SPONSORS!!

RD Olson MFG

PALS for Hair

Dream Dentistry

ILWU Local 21

Child & Adolescent Clinic

CoPrintCo

Estetica Day Spa

LRock Industries

JH Kelly

Brusco Tug & Barge ( I love you, Simi)

Nipp & Tuck

Prospector Liquidation

Lance Brigman, MD

*Dale*

EBA

Dutch Brothers Coffee

 

Dear Empire State Building, Part 4

Dear Empire State Building,

Unfortunately, my family was introduced to the ugly world of childhood cancer this year. Our lives were turned completely upside down on March 7th, 2014 when our four year old daughter Olivia was diagnosed with Leukemia. Then the following day, when cancer already knocked us to the ground, it kicked us again when we found out the type of Leukemia Olivia had, we were told it was AML. A rare cancer in children that would keep her in the hospital for her entire treatment. Why did she have to be kept in the hospital you would ask? Because the type and amount of chemotherapy she would need to have to fight this horrible disease is extremely dangerous and she needed to be monitored while she received her chemotherapy and as her whole immune system would completely bottom out and come back again.

After finding out Olivia’s diagnosis we had to wait for further tests to see if she would need a bone marrow transplant or not. Fortunately, after her first round of chemotherapy (5 weeks in-patient) she went into remission and this among other good test results she received meant she did not need a bone marrow transplant. We got to go home for 9 days, then packed up and had to move right back into the hospital for her second round of chemotherapy. This time we were in-patient for 4 weeks. Then we got to go home for 5 days just to pack up and move right back into the hospital for her third round of chemotherapy. We were in-patient for 4 weeks again, got to go home for 7 days and then back in for her fourth, final and scariest round which was 6 weeks in-patient. We had always been told once she went into remission that it wouldn’t be the disease that would kill her, it would be the infections that she could potentially get from the chemotherapy wiping out her immune system. Once she would receive her chemo about a week later, her body would have no way of fighting off even the tiniest infection that you or I could with no problem. We watched an infection almost take our baby girl from us in her fourth round. She slowly got worse and worse every day from a cellulitis infection which landed her in the ICU for over a week. She received white blood cell transfusions to help her body fight off the infection which were extremely hard on her body making her get really high fevers that Tylenol (the only form of medication a Leukemia patient can take for a fever) couldn’t knock out. These weren’t tiny fevers either, these were fevers in the 105 range, her highest being 105.9 at one time. After 5 days of these transfusions she then got pneumonia in one of her lungs that almost forced them to sedate and put her on a breathing machine for. We were devastated when her oncologist who usually is the most upbeat and positive person came in to see her and had a very sad look on his face. I completely lost it, begging him to tell me my little girl would be okay. I was crushed when he said, “I’m sorry I can’t do that, we are not good at predicting the future.” His face and tone of voice said it all, he said he was scared and we knew that just by looking at him. But our strong and amazing Olivia fooled us all when she started to get better literally the very next day. We got out of the hospital 3 weeks ago and now we are still waiting for her little body to recover and are waiting on her last bone marrow aspiration results to make sure she is in fact still in remission.

We have had to watch our daughter be put under anesthesia 7 times so far. We have had to watch nurses come into her room wearing hazmat gear while they hooked up the chemo, why hazmat gear? Because they can’t be exposed to the pure poison we allowed them to send through our child’s tubes and into her veins. Once a week (some weeks more than once) she has had to go through “dressing changes” where they have to painfully take the bandage off of her Broviac (the tubes literally hanging out of her chest) to put a new one on. Countless platelet and red blood transfusions. A cellulitis infection on her private area which forced us to make Olivia pull down her pants to show every doctor and nurse who came in her room to check on her. As you can imagine this was extremely hard on her as she has been told and told before diagnosis that we don’t show our private parts to anyone. This same infection required surgery where they had to insert a drainage tube that had to stay in for 2 weeks. I have had to hold her down while she kicked and screamed through dressing changes, x-rays and an NG tube being inserted through her nose, down her throat and into her stomach because she couldn’t keep the disgusting contrast down for one of her many CT scans she had to have. NO child should EVER have to see, feel or know what my four year old has. NO parent should ever have to watch their child be put through any of this. It’s pure hell, nothing anyone can imagine unless you’ve been through it yourself. And trust me, you aren’t exempt, this can happen to anyone.

I was just like anyone else that has never seen a child suffer through cancer – I think Maya puts it perfectly – “blissfully ignorant”. I assumed that all funds received for cancer went to all types of cancers including childhood cancer. I actually assumed that children got more than adults! I remember the first time another oncology mom I met in the beginning of this horrible journey of mine told me that childhood cancer is disgustingly underfunded. I didn’t believe her! I thought, “There is no way we would treat our children this way! Whatever happened to “children are our future”??? That is when I decided to Google childhood cancer and how much money goes to research. I was crazy angry and saddened to learn that because less children get cancer than adults, researching childhood cancer isn’t profitable to the pharmaceutical companies. So basically my child just like the 46 children who will be diagnosed with cancer today aren’t important enough to do more research for.

Olivia will have to get blood work done for the rest of her life to make sure she doesn’t relapse. There is a 35-40% chance she will. 35-40%! I know that doesn’t sound like a big chance but it’s not good enough! For everything she went through to go into remission she should have a 0% chance. That 35% will haunt me for the rest of my life. That 35% is putting me on anti-anxiety medication so that I can at the very least barely get by every time I have to wait for the results from her blood tests.

My family will never be the same. I, now as an oncology mommy will never be the same. Every fever, every bruise, and every illness will send me over the edge. I also have a two year old son whose world was rocked as well. He had to live without mommy and daddy for five and a half months while we spent every agonizing day in the hospital with Olivia.

Have you not experienced this? Have you not had a family member experience this? Have you not had a friend experience this? Be thankful…but then realize that you’ve been made very aware and now you can make a difference! The children with cancer and their families shouldn’t be the only ones who know about this. The entire world needs to know about childhood cancer and then they need to be aware that the American Cancer Society doesn’t do anything for our children. We are on our own, which is why you have so many parents of children with cancer in an uproar. We are their only hope. I will forever fight for awareness. Everyone needs to know what GOLD stands for!

Sarah Dodson

BeforeAfterDuring

If you would like to write a letter to the Empire State Building…

Please email me at mayawoody@gmail.com

I am asking that you keep these letters passionate, but respectful. I have been getting so many requests from people that want to be heard, and what better place to do so than here. I will try to post as many as possible. Please include a picture of why it is that you are so passionate about this issue.

The letters I have been getting are so beautiful and amazing. I figure if anything, I will make a really nice coffee table book out of these because you all inspire me so much. Keep going, keep fighting, and never give up.

These kids deserve a future. Ronan may not get one, but that does not I’m not going to sit here and try to help others. I will use my pain for good and hopefully help to save some lives in the process.

I love you,

Maya

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Dear Empire State Building, Part 3

Ronan, before he was diagnosed.

Ronan, before he was diagnosed.

 

 

Dear Empire State Building,
My name is Payton. I am fifteen, almost sixteen. I have never been in the hospital. I do not have cancer. None of the people close to me have cancer. Still, I am a pediatric cancer advocate. I read the blog of Maya Thompson after I heard Taylor Swift’s song Ronan. This soon led to multiple children on Facebook, who I look for on my newsfeed everyday. One of these children is Lilly Bumpus. She’s a beautiful toddler, in remission. She suffers from side effects of the 75% adult strength chemo she was given. Seizures and tics, with no explanation. She has night terrors, about people coming in and waking her up in the middle of the night to check her vital signs.

I’m writing this from a hospital bed, as my appendix was just removed. So I can understand how the nighttime checks could scare someone so young. What just happened to me is nothing. Nothing, compared to what so many children go through. They live with IV needles and ports and constant pain. I don’t know if you’ve ever had to leave a needle in your vein for a long time, but it sucks. These children go through surgery and chemo, radiation and clinical trials. While we, as people who understand how horrible this disease is, fight for awareness, these kids, teenagers, and babies fight for their lives. In the US, 7 of them lose everyday. 46 are signed up to fight. Families are forced into this battle, for their kids. I cannot even imagine life without my little sister. Some of those siblings, whose brothers and sisters you refuse to represent, know what that life is like.

Maya Thompson’s older sons learned that at 8 years old. When his 1 year old sister got a black eye in a baby tumble, one of these boys asked his mom if baby Poppy was going to die. An 11 year old. Because he watched as cancer took his 3 year old brother. No child should ever have to fight cancer, no parent should ever have to lose a child to cancer, no sibling should ever have to watch this disease take their brother or sister. You don’t need to know someone closely. You just have to look around and realize how wrong these kids’ situation is. You just have to want to help them. To tell everyone, “pediatric cancer is wrongly underfunded, and we need awareness, so we can save these kids.”

Some people are pulled into this fight for their loved ones,and to make sure it never happens to someone else’s, but I fight for all of them. For Ronan and Lilly, Paxton and Mateo, Ellie and Alyna. I want you to light up gold, so in the future, Babies like Alyna, toddlers like Ro, and teens like Talia won’t die. So Lilly and Kaitlin and so many others can stay in remission. And Mateo and Ellie and every other kid facing cancer can win. Childhood cance is wrong. You don’t have to experience that to know it’s true.

 

Please light up gold,
Payton

  • Instagram is my BFF

    Meeeoowww. Hiding from the world. #ronan #fucancer #youcantfindme #bookporn #booksfordaaayyyssss #myhappyplace Where was the Gold for all the kids in September who are fighting cancer? Gee, thanks @todayshow. #ronan #beboldgogold #kidsgetcancertoo I took Pearl to the library today. I don't think she's going to be allowed back. #ronan #fucancer #fuckinpearl #blacksheep #rebel #kickedout #bannedforlife #boozebeforebooks
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