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 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

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Be Bold Go GOLD!

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It’s time to… #BeBoldGoGold!

Get your glitter on! We’re kicking off Childhood Cancer Awareness Month with a bang & a sparkle! Throughout September, we’re turning ourselves into spicy, gold human billboards for childhood cancer awareness and want YOU to join us! Welcome to the #BeBoldGoGold Challenge!

HOW IT WORKS:

-You deck yourself out in your gold bling or glitter—jewelry, clothes, facepaint, you name it, you rock it. You head out into a public place. Talk to at least one person about childhood cancer—tell them a fact, like that 46 are diagnosed with cancer every day. The goal is to raise awareness, so talk to as many people as you can & encourage them to take the #BeBoldGoGold Challenge

-Film/photograph your adventure, and tag us in it! We’re reposting submissions to our new #BeBoldGoGold Instagram, Facebook, and Twitter. When you post your video/photo, nominate 3 people to carry out the challenge by tagging them. They have 48 hours after being tagged to get their gold on! Make sure to hashtag #BeBoldGoGold and #RTF.

-At the end of September, we’re giving a prize to whoever goes all out and makes the biggest impact (aka raises the most awareness)! We’ll also have #BeBoldGoGold shirts available to purchase (link coming soon). If you would prefer to donate instead of (or in addition to) the challenge, visit: http://www.theronanthompsonfoundation.com/ & share the link.

The Challenge kicks off August 29th… stay gold!

Announcing our 3rd Annual Gold Party! Buy your tickets before they sell out!!

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Dear Empire State Building, Part 2

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An Open Letter To Anyone Who Cares To Read It:

My name is Kassie. I am twenty-three years old. Like many around my age, I graduated from college this past year, and like even more people my age, I spend almost all of my time working an ungodly amount of hours at my first full-time, salary paid job (a job which I absolutely adore, by the way). When I do have a day off, I enjoy hanging out with family and friends, hiking, watching movies, and catching up on errands and laundry (and sleep!); in a lot of ways I guess you could say that I’m pretty much like every other kid (adult?) my age. I had a great childhood, I have two incredibly loving, strong, and supportive families, and I have a little brother who was diagnosed with a very rare and aggressive form of childhood cancer called Synovial Sarcoma when he was fifteen years old. It’s that last bit, the having a brother with childhood cancer bit, that has shaped me the most as a human being and made me who I am today-a strong and determined young woman who passionately advocates for children with cancer and works with a non-profit organization with the goal of funding life-saving research and clinical trials to ultimately find a cure for cancer and save the lives of cancers youngest and most vulnerable victims: children.

August 31, 2010: I was a sophomore at Arizona State University and had just gotten out of my last class of the day. My best friend Ann had just been diagnosed with Stage 4 colon cancer two weeks prior. I pulled out my cell phone as I walked across campus to get to my car. There was a text message from my dad that consisted of just seven words, “I need you to call me, ASAP”. An overwhelming feeling of dread filled me. I called him and he answered almost instantly. My dad’s voice was shaking. Was he crying? Was he mad? What was that sound in his voice? My dad proceeded to tell me that my grandma had just been diagnosed with breast cancer. He explained that even though it was scary they thought they had caught it early and she would get surgery and then chemo and the chances that she would beat this were good. I felt my stomach drop and told my dad how sorry I was. I automatically went to the positive, “So she has a good chance of being okay, right? She can make this. I know it.” But my dad didn’t answer my question. Instead he drew in a shaky breath and proceeded to tell me that there was more. It was my brother, Coleman. He had cancer too. Disbelief and shock hit me in the gut so hard I literally felt as if I’d had the wind knocked out of me. I do not remember the rest of the conversation I had on the phone with my dad that day. I just remember a tall kid with brown hair and sunglasses looking at me like I was crazy as I stumbled into the gravel and managed to find my balance by grabbing the nearest palm tree. To this day I find it odd that I remember exactly where I was, near the end of Palm Walk right by the SRC Fields on campus yet I can’t remember a single word my dad had said after telling me that my little brother had just been diagnosed with cancer. All I remember after that was being so dizzy that walking felt dangerous. I do not remember the drive home to my apartment, I just remember walking up the stairs to my complex, opening the door and barely managing to tell my best friend and roommate, Hannah, the news before collapsing into her arms in heaving, uncontrollable sobs. I may have been twenty years old but my best friend sat on the ground holding me in her lap as if I were a child. I will never forget that day.

Today-Sunday, August 17, 2014: In just fourteen short days, it will be exactly four years since my brother’s initial diagnosis. A lot has happened in those almost four years. I lost my best friend Ann to the terrible monster that is cancer. I learned about and was adopted into an entire community of families with children who were battling cancer. I changed my major so that I could go on to help children and their families understand their child’s diagnosis and be a shoulder to lean on and resource to help them navigate through the absolute uncertainty that is childhood cancer. I forged an even deeper bond with my little brother who never ceased to amaze me at how selfless, giving, hopeful, and inspiring he could be. I did a lot of research on my brother’s cancer as well as childhood cancer in general. I found a blog written by a mom whose son was going through treatment for cancer and through her words found someone else in this world that understood my complicated feelings and experiences in this cancer journey and helped me to find my own voice and become a huge advocate for childhood cancer. I began to raise money, attend events, and eventually work with The Ronan Thompson Foundation to make meaningful change in this world. I had a few birthdays. I sat with my brother one night as he told me he was roommates with a little boy in the hospital who was also going through chemotherapy and that he would give his life if it meant that little three-year old could survive his battle because “at least I’ve lived fifteen years and that’s a lot more than three”. I connected with the mom of Ronan Thompson, the woman behind the blog that had given me a voice when I was at a loss for words and helped me to find the courage to speak my mind on behalf of the kids who were suffering, even if that meant having people disregard me or tell me that what I had to say was too sad to be talked about. I became best friends with this woman, and only after meeting her for the first time did we realize that my little brother and her son had been roommates at Phoenix Children’s Hospital when they were receiving chemotherapy. I mourned the loss of a little boy with sparkly blue eyes that I had never met, yet had changed my life forever. I watched Taylor Swift sing her brand new song, Ronan, on the Stand Up To Cancer Telethon with Ronan’s family and friends as we all watched in awe with silent tears pouring down our faces. I attended two (soon to be three) Gold Parties in September to raise money for funding and research for new treatments for Neuroblastoma. I watched my brother’s hair come back, I watched him go back to playing sports and attending school and being a normal teenager while thanking the universe for every single second I had with my brother, healthy and happy. I watched my brother graduate from high school with tears in my eyes, overwhelmed with gratitude to witness this milestone when so many kids with cancer don’t make it. I graduated college and watched my brother go off to his first year of college. I laughed. I cried. I hiked. I ran two half marathons with no training to honor Ronan, my brother, and to raise money for Ronan’s foundation. I held my breath every time my brother went to the hospital to get scans to make sure his cancer stayed away, and I had my breath knocked out of me for the second time when after almost three years cancer free, scans came back with news that it was back again.

Like I said, a lot has happened in those almost four years. Maybe the most important thing that has happened is that I have witnessed the impact that one person can have on the world around her when she is brave and bold enough to stand up and speak out about the atrocities going on around her each and every day that everyone else is too scared, intimidated, or devastated to talk about. I have learned that when one person is brave enough to stand up in the face of adversity and shine, it subconsciously gives others the permission and power to do the same. I have come to know what it is like to have a person you’ve never met before completely change your life. I have also come to know what it is like to have someone tell you that your compassion, dedication, and courage has changed their life forever. I have watched the childhood cancer community that I was adopted into four years ago evolve and change, becoming more cohesive, recognized, and powerful and I have watched our community use that power to positively and passionately enact change that had lead us in the right direction, on a path that leads to a future where children getting cancer is only something you read about in history books. We have a long road ahead but there is power in the baby steps we have made towards our goal. There is so much work yet to be done but I can promise you we are not losing steam; we are only gaining momentum. Our biggest roadblock is in a lack of understanding and awareness that childhood cancer is not a rarity. 46 children are diagnosed with cancer every single day, and seven children will die from cancer today alone. Another obstacle we as a community face is that the general public finds childhood cancer too tragic a topic to broach meaningfully, let alone superficially.

While I will not speak for the childhood community as a whole, I can speak for myself, as the sister of a cancer fighter. All I want is to turn around the odds for kids fighting cancer. I want our society to finally decide that although talking about childhood cancer is extremely sad, devastating, and sometimes uncomfortable, we are more horrified and uncomfortable with the fact that thousands upon thousands of kids are dying from this disease and because of this we decide to shed light on this topic and force ourselves to ask the hard questions and demand answers and better funding for our kids. I never want another family to have a doctor tell them their child has cancer. I never want another parent to watch their child die in their arms. I want to fight for a world where children make it out of childhood alive. I want my little brother to be given the chance to get better and stay better, to know and experience all the many ages and stages of life, I want him to get a full and long lifetime on this earth.

The childhood cancer community I belong to is a passionate, dedicated, strong-willed, and extremely vocal one. But one thing we are not is violent, malicious, or ill wishing. I can promise you that any person who has ever loved someone with cancer is not capable of wishing the same on any other person, ever. I could not and would not wish cancer on anyone, no matter who they were or what they have done and the thought alone makes me feel sick to my stomach. The individuals I have met in this community of people brought together by cancer are some of the kindest, most compassionate, awe-inspiring, absolutely amazing human beings I have ever encountered. They are the kind of human beings that give me hope for a brighter future not just for our kids but also for the world in general. While we will not give up on what we are passionate about and have more fight and will power in us than any other group of people I’ve ever known, we do not use that fight and will power to tear others down, make threats, or tarnish others reputations. To do so is not in our nature and it is not in any way related to our ultimate mission: to find a cure to the many different cancers that afflict children and stop other families from feeling the pain that we have. Our goal, our fight, our mission has always been and always will be to find a cure to the merciless disease that continues to kills our sons, daughters, sisters, and brothers. It has always been about our kids, and to make it about anything other than that is something we will not stand for. Whether childhood cancer has affected you personally or not, I ask you, I beg of you, to advocate for our community in a way that your own child would be proud of. It is indeed possible to fight for our kids with passion, spice, and determination and also do so gracefully and in a way that is not malicious or harmful to others. I want our community to be known for the leaps and bounds we made in the research and treatment of childhood cancer and ultimately for curing childhood cancer. We are a group of people who despite unimaginable tragedy continue to come together, support one another, and lift each other up to make meaningful and lasting change in this world and overcome seemingly insurmountable odds. We are not the bullies that were addressed in the Empire State Building’s press release today, and if you have joined our community fight with the intention of being malicious and threatening, our cause is not one we need or want you representing.

Each and every day I will live with love, compassion, and strength. I will be a voice for the voiceless and I will represent our children fiercely but with integrity, respect, and grace. Thank you to everyone who has helped us in our fight for a future where childhood cancer does not exist. Thank you to the childhood cancer community that embraced me from the day of my brother’s diagnosis four years ago. Thank you to the incredible people I have met during this journey that have inspired, strengthened and loved me along the way. Empire State Building, we are not the bullies you addressed today in your statement. We are not the abusive and ill wishing “childhood cancer advocates” you talked about. While our fight to light up the Empire State Building in Gold for Childhood Cancer Awareness month is far from over, our plan of attack will never include threatening, demoralizing, or attacking any human being, whether they choose to help us shine a much needed light on the world of childhood cancer or not.

Stay Gold,

Kassie Rehorn

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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.

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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.

Working on my little Empire State Building Post… Thank you all who have been so supportive. Until I get it finished, there is this. I love you all. I miss you all. I’m sorry I’ve been so quiet on here. Just trying to keep my head above float. Wait… I think I meant head above water. I am so tired, I cannot even see straight.

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Ronan. Somehow our summer is over and I am left here scratching my head. How did summer go by so quickly? How in the world do I have 5th graders? Why isn’t Ronan starting the second grade? When is somebody going to end this sick joke and just freaking bring him back? I still think that, Ro even after all this time, that somebody is just going to knock on my door one day and hand you back to me. I want to scream sitting here at my office staring at your little picture that makes me sometimes wonder for a split second if you were really even real. That life I knew with you seems so long ago. Another lifetime ago. I am trying to cling to the life I had with you with everything that I have, but as time goes on it gets harder to remember. My old memories are being replaced by new memories as if they are in competition with one another. Nobody is going to win this fight. I want my old memories just as much as I want my new. I might just want my old memories, the good memories with you, more. The good memories are hard to come by. Sometimes remembering them is just as painful as remembering the bad, cancer baby memories. I wish I could say I have found just a little peace with all of this, but I have not. I truly do wonder how parents that have watched their child die, find peace. Do they ever truly really find it again, or just pieces of it here and there? Feeling peace about you dying is never going to be my thing and I am o.k. with that because at least I am being honest with myself and what life feels like without you which is still hell on earth everyday.

So… summer is almost officially over. We spent all of June in AZ, which we never do but with your brothers getting older they had committed to a lot of basketball and as much as I wanted to peace out AZ to get to Washington, I had to be supportive of their commitments. June sucked balls. It was really fucking hot and I was really missing my family, but I did my best to put on my fake ass smile and get through it. As soon as July 3rd came, we hopped on a plane to Nana and Papa’s house. Our time there was as close to bliss as bliss can get anymore. It is the only other place that brings me the most comfort, peace, and happiness… besides New York. I love my home. I love going back. I love and miss it so very much. I could not wait to get Poppy there and let her roam free and fall in love with it the same way you did. That is exactly what she did. We played outside from the moment she woke up until the moment she went to sleep. Usually we have a lot of down time there, but this summer I was on a mission to take advantage of everything we could do outside. Your brothers would wake up every morning and go, “What adventure are we going on today, mom?” Oh, let me see… as I would get on my phone to figure out what really amazing place I could take us to for the day. We would pack up the car in the morning and head out until Nana and Papa got home from work late in the afternoon. We did a lot of hiking. A ton of hiking where we would get lost for hours upon hours in the thick of the woods, and I appreciated the nature and beauty so much. I could literally feel my soul exhaling and the peacefulness that never exists inside of me, found me for a few hours each and everyday. I was so thankful for the time out from my life back in Arizona where I often still feel like I am suffocating to death. I’m not even being dramatic. Arizona is slowly killing me.

“Boys! Do you know how lucky you are to be spending your summers here. Look at all these beautiful trees! Look at these waterfalls! Look at all this green! All this fresh air! Isn’t it so amazing? Please tell me you appreciate this. Not everybody gets to experience things like this.”

They both looked at me like I had gone off the deep end, but are to sweet to tell me otherwise. Instead they both told me that they knew how lucky they were to be able to come back here every summer. I know they love it just as much as I do, but I think it’s the spending time with your Papa Jim that they love the most. Quinn also found a new favorite hobby which was “mowing” Nana’s field which really just consisted of him going as fast as he could on her riding lawn mower. Every night we would all find our way in my old bedroom and I would watch as all three of my babes were lulled to sleep by the fresh air that came through my bedroom window during the cool, dark nights. I sleep much better there than I do back at home in Arizona. In Washington, I sleep like a freaking baby. I think it’s the comfort of being back home with your Nana and Papa and all of the fresh air that we get that makes me fall fast asleep and stay that way for more than 3 hours at a time. It was heaven.

While we were there, Poppy had her first little accident. She has been walking for a while now but still takes the normal falls here and there. It was during the middle of the day and I was home with just Quinn and Poppy. Your daddy and Liam were at a movie and Nana and Papa were both still working. I was playing with Poppy in the living room and we were playing one of her favorite games which is her version of hide and go seek. She likes to take a blanket, cover her entire body while standing up while I go, “Where is Poppy?!” She then rips the blanket off of her head and says, “Here I am!” or more like “Ger baa mmmm” which totally means “here I am” in baby talk. We had been playing this game for about 10 minutes when all of a sudden I looked over just in time to trip over her blanket and fall on a sharp corner of Nana and Papa’s fireplace. A corner that I always knew was going to get one of you kids, sooner or later. I ran over and picked her up to make sure she was o.k. She was crying really hard. As I examined her, I saw that the corner of the fireplace had missed her eyeball by about an inch. The lower corner of her eye had turned a shade of black and blue almost instantly and it was starting to swell up. I yelled for Quinn to go and get me a first aid ice pack but he had to go outside instead. He couldn’t stand for one second seeing Poppy hurt. I grabbed the ice pack, a popsicle, and headed outside to try to calm her down while we sat on the porch. She stopped crying after a few minutes as I continued to hold her and tell her how sorry I was. Quinn came walking back over asking me if she was going to die. I wanted to die right then and there. It makes me sick that his little mind immediately goes to the worst of all places. I told him that Poppy was not going to die (the same way I told him that about you, fucking fuck fuck fuck) as we sat together and watched her little eye get worse and worse. I texted your daddy and Nana a picture of it to let them know what had happened. Your daddy joked and told me he was going to call CPS on me, your Nana flipped out. I tried to make as much light of the situation as possible (hey at least it’s not cancer) but I was silently freaking out myself. It just wouldn’t be until later that night that I would come to realize how much this little fall of hers was going to impact me.

I fell asleep that night pretty late right next to Poppy the same way I have done every night since she was born. You know, with her right by my side so I can check her breathing every hour on the hour. (insert psycho mama here) I think I dozed off only to jolt out of bed because of an old familiar feeling a couple of hours later. My eyes immediately went over to Poppy. Oh my god. Her eye now looked sooooo swollen. So black and blue. So much like yours right after you had your first surgery where they removed the mass that had metastasized right above the left orbit of your little eye. That surgery where you looked at me and without a word I could hear everything you were saying which in my mind was, “What happened? I was just running around fine a few days ago. What did you let them do to me? How could you let this happen? You are my mama, you are supposed to keep me safe.” I heard those words over and over again in my head. I curled up in a ball, grabbed a pillow to smother my sobs, and sob is exactly what I did for the next few hours. I sent an email to Dr. Jo around 5 a.m. She responded almost immediately and called my phone. I told her what had happened, the reaction I was having to it, and let her gently guide me through it. HELLO PTSD that nobody talks about after you lose a child, except Jo.  She  We made a plan which mainly just consisted of me acknowledging my grief, nurturing my grief, and getting through the day. I hung up with her once again telling myself how lucky I was to have found her and let her words sink in and prepare me for my day ahead.

We were set to leave Nana and Papa’s house to all go on a family vacation to Bend, Oregon. Nana, Papa, your daddy, brothers, Poppy,- my amazing step-sister and niece would also be with us which we were all so excited about. I spent the morning running off of the few hours of sleep and trying to get everyone packed to leave. I completed all of my tasks, running around, feeding Poppy, making everyone shower while I just lost my shit as there was no containing what I was physically experiencing. Your brothers came and checked on me as I handed Poppy off to Nana while I went and sat on the couch and continued to sob. Quinn rubbed my back. Liam kissed my cheek. I smiled at them both and told them I loved them. Soon it was time to leave for our vacation. I hopped in the backseat of my stepsisters car with Nana and Poppy while the boys and Jady girl went with Papa Jim. I was so thankful I did not have to drive. Between my now raging headache and my tears, I would not have been able to. I spent the new 5 hours in the car feeling like I was massively hungover and when we got to Bend, I headed straight upstairs to rest. I was so thankful to have your Nana there, to help with Poppy and let me cry on her shoulder. I was so thankful for the non-judgement that came from everyone about my little episode. I guess that is why I was able to just let everything out and not feel uncomfortable doing so. I never feel judged around my family and that is the best gift they have ever given me. It means everything to a grieving mother because my grief and pain is something that will be with me for the rest of my life. I am not going to be ashamed of that and I am not going to hide it. To love something so deeply that it makes you feel so much pain is a badge of honor that I will always wear as it is a constant reminder of my love for you.

Another reason the day was so hard was because it was another family trip without you. That hurts so much and I still look for you everywhere.

I have to end this now. I have been trying to finish this post for weeks. Now I have to move on to this Empire State Building stuff. I’m sorry to cut this short, but I need to just get this posted. I feel so badly that I have not written on here in so long. I miss you and this blog so much.

G’nite baby boy. I miss you. I love you. I hope you are safe.

xxoo

If you have a little time on your hands…

266169447c562500c9b40e39139ec76b         Rockstar Ronan was nominated for “Battle of the Blogs” on Arizona Foothills. Thank you to the lovely person that nominated me.  Also, thank you for being so patient with me while I work on this book. I promise you all it will be worth it!! Battle of the Blogs 2014 Rules & Regulations * Voting is unlimited * Voting runs until July 28, 2014 at 11:59 PM (MST). * The TOP 4 blogs with the most votes will be announced as the winners * Winners will be contacted by Arizona Foothills staff after July 30th. Prizes AZFoothills.com pages for one week, be featured in AZFoothills.com E-newsletters, get an editorial mention in Arizona Foothills Magazine, snag some super social media promotion, and be given a very special guest blog spot! – One full week as the static banner ad on all the pages of the website – Features in AZFoothills.com E-newsletters, which are sent to 75,000+ subscribers – An editorial mention in an issue of Arizona Foothills Magazine – Social media promotion on Arizona Foothills Twitter, Facebook, and Instagram handles – A guest blog spot on AZFoothills.com Vote if you can! Thank you so much! xx   http://www.arizonafoothillsmagazine.com/battle-of-the-blogs/voting/2.html

  • Instagram is my BFF

    Sweet dreams, little ones. #poppy #ronan #fucancer #thisroomisrad #sedona #nightynight Had to bring along this babe, too. Poppy's sissy. Can't leave home without her. @knjoy #poppy #ronan #fucancer #poppyroo #slumbersissys #sedona #nightynight I'm thinking everything that happened last night was a sign that I need to slow down a bit. I've been running on empty lately due to not sleeping/stress/anxiety/and always due to missing my Ro so much. This may not be New York, but I think it's where I need to be right now to take a little time out. Thankful for this quiet little break. #ronan #fucancer #sedona #ineedthequiet #slowdona #shhhhhh #nightynight @knjoy @jcaccia
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