Neuroblastoma – ROCKSTAR RONAN

I love you on a Sunday. And all of the other days that follow.

Ronan,

They say time heals all wounds, but we know that’s not true. It’s been ten years of not having you here, and my wounds are still just as deep, and the heaviness I carry with me never goes away. I have learned to live on this earth without you, but as time goes on, life without you feels harder. You are forever with me in everything I do and everywhere I go. Take today, for example.

Poppy has been taking piano lessons for a couple of years. Her piano teacher recently retired, so she connected us with somebody new. It is a Sunday, and I am rushing your sister out the door to lessons with a new teacher. I have an idea of where we are going as I put the directions on my phone, but the location doesn’t register with me until we pull into the parking lot. Until this point, I am lost in a conversation with Poppy. She is talking non-stop in the back of the car about her theories on religion. She wants me to explain Scientology to her. I tell her I don’t know enough about it, and I need to research it a bit more before telling her the premise. She heard it’s about aliens, and she wants to know who came up with that. Mind you, she is eight, but she is eight going on 18, and I am constantly in awe of how her little mind works. As we pull into the parking lot, I feel my stomach sink. I know this place, and I used to know it well. It is the parking lot of your preschool; I feel my stomach drop. I spent a year there with you in a mom and tots class. We never got the chance to return the following school year because you got sick.

I hold Poppy’s hand as we search for the classroom where she is taking her lessons. Out of all the classrooms here, she is right across from the room where I was with you. The memories come flooding back, and I see a sixty-second movie reel of our time here together. I see your plaid shorts, your polo shirts, your mischievous smile, and the way you looked at me like I was your everything. I see you sitting in circle time. I see us reading books and playing with trucks and legos on the carpet. I see the little playground where I help you dump the sand from your tiny little shoes. I feel the tears wanting to fall from my face, but I cannot break down now. I have to meet this new teacher, so I somehow find it in me to hold on to my composure. I talk with Poppy’s teacher for a few minutes and leave Poppy with her while I make my way back to the car.

The tears are now falling, and I know there is no stopping them, so I let them continue down my face. As I am walking to my car, my mom calls. For a long time after you died, I would have ignored her phone call for one of two reasons. 1) I was ashamed of my pain. My grief. My tears. Of not being strong because, as I was told by many, strong people heal, and strong people move on. I was not doing either, and I spent many years thinking I was so fucked in the head for constantly aching for you. 2) I wanted to protect my mom from my pain, and I thought the easiest way to do so was by putting up walls and shutting her out. After a lot of therapy from Dr. Jo and a lot of self-reflection, I realized everything I had been told about grief was not only wrong but damaging to my healing.

I picked up the phone when I saw who was calling, and as soon as I said hello, my mom said, “What’s wrong, sweetheart?” She can tell from my “hello” that I am not ok. It takes me a few minutes before I can answer her because I am crying so hard. I feel horrible, knowing I am making her worry, but she sits and tries to calm me down. I am finally able to tell her where I am and what I am feeling. She talks me through things with a soothing tone and acknowledges my pain. I know she hurts so much, too, and that will forever gut me. We speak on the phone for a few more minutes, and I tell her I love her as we say goodbye. I know I have to head back to Poppy’s lesson soon, so I pull down the mirror in my car to check my appearance. I look wrecked. My face is puffy, my eyes are red, and I wonder how to explain my face to her piano teacher. It is more than evident that I have been crying. I put my face mask on and head to her classroom, telling myself I don’t need to say anything. I don’t owe anyone an explanation for my pain. Plus, awkward. I’m not ready to share Ronan’s story with a woman I just met. I thank Poppy’s teacher for the lesson and grab her tiny hand as we make our way back to the car.

“What’s wrong, mama?” asks P. Nothing gets past her, especially when it comes to me and my emotions. I consider lying to her and hiding what is going on, but then I remember, that’s not how I do life with her. I don’t keep secrets; I let her see me in my rawest, human form. I tell her what’s going on. I start to cry again. She steps up into the car, turns towards me, and wraps her arms around me.

“I love you, mommy. I remembered that Ronan went here; I knew that would make you sad. It’s ok to be sad; I’m sad, too.” I kiss her little face and tell her how much I love her. We drive home, and she proceeds to tell me about a new project she is working on at school. She knows I need a distraction from the thoughts in my head.

At home, Poppy is busy playing with her legos, and I am busy changing the boys’ bedroom sheets. My sadness is still apparent as he walks into the room. He takes one look at me and says, “Uh-oh, my darling. What’s going on?” I look at him and then down at my feet. “Nothing. I’m just having a hard day; I’m ok.” He grabs my hand. “You’re not ok. And that’s ok. Talk me through what happened because that is what we do with one another, remember? That is why we are who we are with each other.” I start to cry again, but I know my tears and pain are safe with him. He spends the next few minutes validating my words and tends to me with a cup of tea and tears of his own.

My pain is acknowledged.

My pain is valid.

My pain is safe.

My pain is nurtured.

My heart is his.

Thankful for the opportunity to continue talking about Ronan, Taylor, childhood cancer, and the horrifically hard world of bereaved parents.

https://kjzz.org/content/1737378/you-were-my-best-4-years-scottsdale-mom-reflects-taylor-swifts-rerelease-ronan?fbclid=IwAR0enkIGpunEZ1qheo1ngCebWs7VHK59S0wR3YE7pVWlQJaviWYlMFquNSk

Loving Ro was Red

Ronan,

You are unequivocally everywhere, yet you are nowhere. My eyes still wander for you while making my morning coffee as a hummingbird appears outside my window. I still spend my days chasing glimpses of you in the grocery store as a little boy who looks to be about four years old crosses my path. I search for you in the impish eyes of Quinn, the stoicism of Liam, and the mischievous giggles from Poppy. I desperately beg for you to make an appearance in my dreams, but you never do. Instead, I find myself having the most vivid dreams about things like freeing the Orcas at SeaWorld, your old Oncologists, and situations in my life that feel very unresolved or out of control. My dreams are never about you, and I still don’t understand why when you are constantly on my mind. Last night I went to bed thinking about a phone call I received earlier in the day and the email that followed. Because the email was on my mind as I drifted off to sleep, I spent most of the night dreaming about our friend, Taylor Swift. I woke up the following day in disbelief at the reality of what had occurred the day before.

“A number I don’t recognize called my phone and left me a voicemail. From somebody named Tree. I don’t have any idea who that is.” I looked up at Mr. Sparkly Eyes, and yes, his eyes still sparkle. “My darling, call the number back.” This came from the man who answers every phone call from every unknown number that rings him up. “Ok. Maybe. I’ll call back in a bit; I’m going to look through my emails first to see if I was supposed to talk to someone that I have forgotten about.” He kissed the top of my head as I got up to get to the appointment I was running late for. I did a quick search in my emails, but nothing came up from anyone named Tree. Maybe it was a newly bereaved mom I was supposed to speak to? I’ve been doing a bit of that here and there for Dr. Jo, and a couple of them I hadn’t heard back from. I decided to call back the number from my car, and a woman’s voice answered the phone.

“Hi Tree, it’s Maya Thompson returning your call.”

“Maya! I’m so happy to hear from you; I wasn’t sure if this was still your number.”

My internal dialogue was running wild. Shit! This person knows me, yet I can’t place her. I decided to give it another few seconds to see if I could figure it out.

“It’s still my number; how are things?”

“Great! Taylor has an email she wants to send you, but before she sends it, I need to make sure your email address is still the same.”

Taylor. OMG. It’s Tree. As in Taylor’s everything, Tree. That Tree! I tried to keep my composure as if Taylor contacting me was a daily occurrence. We spoke for a few more minutes as she confirmed my email address, and we said goodbye.

I pulled my car over and called my everything, my New York City, Little Rachel. She picked up, which I was so thankful for because it was the middle of the day, and I knew she was more than likely having sessions with her patients.

“Taylor’s sending me an email,” I blurted out as soon as she picked up. “What?” She squealed with excitement. “What is happening over there?” I told her the back story, and we went over the endless possibilities of what the email could potentially say. I continued refreshing my emails, but nothing new had come through. We chatted giddily for a few more minutes, and I promised to call her as soon as I heard anything. I somehow made it to my destination safely, and as I pulled in, I checked my email.

Taylor’s email was there, but I won’t be sharing her entire email publicly. She is and will always be one of the things I hold dearest to my heart, and her beautiful words will remain private. I skimmed the email. Tears sprang to my eyes. I went back and reread her words, slowly this time as I tried to comprehend what I was reading.

Let’s back up for a bit. In 2019 it became public knowledge that Taylor was being screwed over in the worst way possible by Scott Borchetta of Big Machine Records and the disgusting Scooter Braun, who must be from the pits of hell. I watched from afar as her life’s work, her blood, sweat, and tears, were stolen from her by vile men because, at the end of the day, when you have an unscrupulous soul, greed is the ultimate decision-maker. You can read Taylor’s public letter below as the cliff notes to the unraveling of the painful betrayal.

“For years, I asked, pleaded for a chance to own my work. Instead, I was given an opportunity to sign back up to Big Machine Records and ‘earn’ one album back at a time, one for every new one I turned in. I walked away because I knew once I signed that contract, Scott Borchetta would sell the label, thereby selling me and my future. I had to make the excruciating choice to leave behind my past. Music I wrote on my bedroom floor and videos I dreamed up and paid for from the money I earned playing in bars, then clubs, then arenas, then stadiums.
Some fun facts about today’s news: I learned about Scooter Braun’s purchase of my masters as it was announced to the world. All I could think about was the incessant, manipulative bullying I’ve received at his hands for years.
Like when Kim Kardashian orchestrated an illegally recorded snippet of a phone call to be leaked and then Scooter got his two clients together to bully me online about it. Or when his client, Kanye West, organized a revenge porn music video which strips my body naked. Now Scooter has stripped me of my life’s work, that I wasn’t given an opportunity to buy. Essentially, my musical legacy is about to lie in the hands of someone who tried to dismantle it.
This is my worst-case scenario. This is what happens when you sign a deal at fifteen to someone for whom the term’ loyalty is clearly just a contractual concept. And when that man says, ‘Music has value’, he means its value is beholden to men who had no part in creating it.
When I left my masters in Scott’s hands, I made peace with the fact that eventually, he would sell them. Never in my worst nightmares did I imagine the buyer would be Scooter. Any time Scott Borchetta has heard the words’ Scooter Braun’ escape my lips, it was when I was either crying or trying not to. He knew what he was doing; they both did. Controlling a woman who didn’t want to be associated with them. In perpetuity. That means forever.
Thankfully, I am now signed to a label that believes I should own anything I create. Thankfully, I left my past in Scott’s hands and not my future. And hopefully, young artists or kids with musical dreams will read this and learn about how to better protect themselves in a negotiation. You deserve to own the art you make.
I will always be proud of my past work. But for a healthier option, Lover will be out August 23.”

Sad and grossed out,
💔
Taylor

I remember reading Taylor’s words and how nauseous I felt after. I had so many sleepless nights during the next few months. I worried about Taylor’s heart. I wondered what would happen to you. You are my life’s work. You are my blood, sweat, and tears, and now somebody other than Taylor “owned” you. I vented on my social media accounts about the unfairness of it all, not knowing if anyone was listening to what I was saying. There started to be chatter on the internet of Taylor re-recording all her old albums so she could own her OWN music again, which was such a bloody smart move. Taylor soon confirmed she was going to do so. I felt so proud of her upon hearing this news, and I let the happiness of that carry me through my grief of letting our song belong to people who didn’t deserve it. ‘Ronan’ was always going to be a charity single, never attached to an album of hers. In my mind, there was no way she was going to re-record it, and I understood why. Knowing that Taylor had taken the most horrific situation and had found a way to get her art back made my wounds hurt less. I was just thankful she had done the most incredible thing for us in the first place. That was more than enough. It was always going to be more than enough, and I had let go of wishing it could be any other way.

Now back to a part of her email that I received.

“I’ve recently completed the re-recording of my 4th album, Red. It’s really exceeded my expectations in so many ways, and one of those ways is that I thought it would be appropriate to add ‘Ronan’ to this album. Red was an album of heartbreak and healing, of rage and rawness, of tragedy and trauma, and of the loss of an imagined future alongside someone. I wrote Ronan while I was making Red and discovered your story as you so honestly and devastatingly told it. My genuine hope is that you’ll agree with me that this song should be included on this album. As my co-writer and the rightful owner of this story in its entirety, your opinion and approval of this idea really matters to me, and I’ll honor your wishes here.”

It took me an hour to absorb the words in front of me. I shared the news with your brothers, Poppy, your daddy, Mr. Sparkly eyes, and a couple of my dearest friends. I cried while sharing the news. I called Tree back and spoke to her for a few minutes about what had just occurred. I told her of course, Taylor had my permission to put ‘Ronan’ on Red. I tried my best to articulate how much this meant to me through my tears, but there are not enough words in the English language that will ever be able to appropriately convey my feelings about this. Taylor has anchored you to this world so you will never be lost, and now she has ensured you will forever be safe in a new, permanent home. She is once again giving a voice to the often voiceless, bereaved parents of the world as well as childhood cancer which deserves so much more funding than it gets.

“Red (Taylor’s version)” will be out November 19th and on that album, there will be you. It is the most perfect album for you to be on as it represents so much heartbreak, love, and pain.

I have so much more I want to talk about and so much more I want to write about, but I’m under a book writing deadline that I need to get back to.

I miss you. I love you. I hope you are safe.

My dearest Taylor,

I love you.

My words of thank you will never be enough. Thank you for keeping Ronan safe. Thank you for never forgetting him. Thank you for breaking rules and breaking free. Thank you for that heart of yours that is made of pure gold. You are a constant source of inspiration to me in so many areas of my life, and there is nobody in the world I would rather have Ronan with than you. I’m going to write to you separately about this but for now, thank you.

Get your Spicy on!

They’re back! I am thrilled to announce that the spicy monkey SpiritHoods are now back in stock just in time for fall. They make such great gifts and kept Ronan’s bald little head so warm in the hospital. He loved wearing his so much.

100% of the profits go to The Ronan Thompson Foundation which is just beyond amazing. A huge thank you to our friends at SpiritHoods for releasing these again just in time for September to help us bring awareness to this cause.

Thank you all for your continued love and support!!

https://www.spirithoods.com/spicymonkeys

Dear Empire State Building, Part 7

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

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

Dear Empire State Building, Part 3

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

Be Bold Go GOLD!

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!

Dear Empire State Building, Part 3

Dear Empire State Building Employees,

There is something you need to understand about childhood cancer and those affected. And there is something you need to understand about social media. We don’t fight alone. Nobody does. A stranger’s battle becomes each of ours. We are in it together. We all talk to each other, and we know it was more than one individual who requested you to light up gold. We know. At least two nonprofit organizations have filled out the form on your website, in hopes of seeing your building light up gold for one night next month. One night is all we ask. We know you have gold light bulbs. Sure, individuals have requested for you to do the same, and perhaps you feel justified in denying them, and perhaps you are, in fact, justified. But when two nonprofit charities have diligently filled out the form, and sent it in, and they are still refused, what then? Are we supposed to just give up? That isn’t how we operate at all. We fight daily for our kids, for our families, for the other kids we know who are fighting for their lives, and yes, for ourselves. Because some of us, me included, are survivors of childhood cancer.

And we all are friends on social media platforms. We all talk to each other. We know who has filled the form on your website. We know parents who posted pictures of their sick children on your Facebook wall, and those posts were promptly deleted by the person who who administrates the page. We just wanted you to see what you were saying no to. We just wanted you to see who you were saying no to. We wanted you to see the babies you are refusing to help. But you just block everyone. Why? We are just going to keep asking. I think all of you know that.

In your statement, you say you provide lighting for World Cancer Day in partnership with American Cancer Society. That is pretty amazing. But did you know that American Cancer Society only gives a penny or less out of every dollar they receive to pediatric cancer? There is a reason why we want you to go gold next month. Pediatric cancer is grossly underfunded. It gets less than 4% of federal funding and there are more types of childhood cancer than you can count on your fingers. On both hands. Everyone in the childhood cancer social media community and in their orbits knows about childhood cancer. Most people step up to help. Other people have their own causes, their own problems. But for us, this is it. This is worth fighting for. Would you not say your own children were worth fighting for? Would you not do anything for them? Their lives depend on you. Sick children’s lives depend on us, on awareness, on action.

That brings me to what you said about people getting frustrated and wishing cancer on you. First off, I doubt that was what really happened. Nobody in this community would ever wish cancer on somebody else, even someone they don’t get along with very well. Cancer is a horrible nightmare. If you had gone through it, either yourself or with a loved one, you would know that. If someone within our community is “abusive,” as you say, then it is out of sheer frustration and has nothing to do with you personally. We are all human. We are all running a million miles a minute and getting nowhere fast. You said no to Thumbs Up for Lane Goodwin Childhood Cancer Foundation and you said no to The Ronan Thompson Foundation. We have been asking for at least two years. If we get a little frustrated, who are you to blame us, really? Kids are dying every single day all over the world, and these are battles we can’t fight for them. But the fight for awareness and funding? That is what we can do. We will keep coming. We will keep asking. And that is a promise.

Sincerely,

Danielle
Stage IV neuroblastoma survivor
Diagnosed at 15 and a half months

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