Dear Empire State Building, Part 8

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Dear Empire State Building –

 

 

 

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

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

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

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

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

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

BeBoldGoGold.

Thank you!

Love,
Kate

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Are you ready to be a Spicy Monkey??

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

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

 

 

https://www.spirithoods.com/spicymonkeys

Dear Empire State Building, Part 7

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

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

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

 
Sincerely,

 
Sabrina Houara
Childhood Cancer Awareness Advocate and Future Pediatric Oncologist

Dear Empire State Building, Part 3

Ronan, before he was diagnosed.

Ronan, before he was diagnosed.

 

 

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

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

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

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

 

Please light up gold,
Payton

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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Huffington Post and The Empire State Building

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Through Ronan’s story, I have come to know the most beautiful people who are so passionate about this fight. I am so proud to call this little gem, Rainesford Alexandra someone who inspires me everyday to be a better person, leader, and fighter. If this is what our youth of today looks like, our world is going to change in a very bright and beautiful way. Thank you sweet girl for all of your help, friendship and passion. Please share this story and know that together we will change this. I am determined and hopeful that we will see The Empire State Building, Go Gold. xxoo

http://www.huffingtonpost.com/rainesford-alexandra/will-the-empire-state-bui_b_5664993.html

I promise you all…

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I have been in the middle of writing on my blog for weeks now, but I have had so much to say that my post has gotten insanely long.  I was going to try to finish it tonight, but between being so wiped out because all of my babes are sick this week, book writing, and very little sleep… I don’t know if it is going to happen.  I also now have to write a blog post about something that I am VERY upset about which is going to cut into my updating you all even more.  In the past, I have requested to have the Empire State Building lit up Gold for one night during the month of September to shine awareness on childhood cancer.  My requests have always been denied for some really lame ass reasons.  They light it up for pretty much every cause out there, but apparently childhood cancer is not good enough to be one of them. Last night it was lit up green for the new Teenage Mutant Ninja Turtles (Go turtles!) Seriously, WTF? You can light it up for a movie, but not real life heroes like kids who are fighting cancer??

I am LIVID and I am in the middle of writing a “DEAR EMPIRE STATE BUILDING” blog post, but I am not sure if I will have the stamina to finish it tonight.  I am not the only one upset about this.  The whole childhood cancer community is in an uproar and is blasting this all over social media, but whomever is running the social media for the Empire State Building keeps deleting all posts related to why they should go gold for one night during the month of September. I am going to leave you with this post tonight, written by somebody else until I can finish my own.  We need to get moving on this. We need them to do the right thing and change their minds. I know the hard way how little attention childhood cancer gets.  My son died because of it.  Lack of awareness equals lack of funds and lack of funds is why childhood cancer is the number one disease killer in America.

Please help us out in whatever way you can.  Make phone calls to the media about this, leave comments on the Empire State Building’s Facebook Page, Tweet this, anything you can think of to let them know that we are not going to just go away. Our kids fighting cancer do not have a voice. It is up to us as adults to advocate for them. Please use the hashtag #empiregogold. I truly believe if we all come together, they will do the right thing.

WHY THE FUCK IS THIS SO COMPLICATED? ALL I WANT IN THE LIFE BESIDES MY SON BACK IS FOR NO OTHER CHILD TO EVER HAVE TO GO THROUGH WHAT RONAN WENT THROUGH AND NO OTHER PARENT TO HAVE TO KNOW WHAT LIFE ON THIS EARTH IS LIFE BECAUSE THEIR CHILD IS DEAD.

Childhood Cancer needs all the awareness it can get, otherwise things are never going to change and that is just an unacceptable world to live in. I won’t stand for that and anybody that knows anything about this world, shouldn’t either.

Thank you all always for all that you do. This is a war that cannot be won alone. New York is my favorite city in the world and I am truly hoping this can be turned around in a positive way.

I promise to post soon.  If Poppy will get off my boob so I can actually finish typing. For now, read this.  Get mad, get angry, don’t stand back and do nothing. Please. I am begging you.

 

 

xoxo

 www.speakingupforchildhoodcancer.wordpress.com

 

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

That time I went Inferno hiking and almost didn’t make it down the mountain, because sometimes I’m an idiot who does stupid things.

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Ronan. I did something a couple Saturdays ago that ended up being not all that smart. I was in a mood. It was a Saturday and the weekends around our house are still really hard on me. So much family time that I know you know I am thankful for, but weekends always seem to hurt so much more. We spent the morning at your brothers’ basketball games, a place where I am normally my happiest. On this particular day, not having you there to watch and cheer for your brothers was just too much missing you for me to handle. I did my usual put on my happy face while I did my loudest screaming my head off for your brothers as I watched them dominate on the court. After another victory (insert proud bragging rights here) we all went home and your brothers ended up getting invited to go swimming with some friends. I volunteered to take them as Poppy was getting ready to take her nap. I threw on my hiking gear as your daddy looked at me and said, “You’re going hiking? It’s the hottest part of the day and about 110 degrees outside. You shouldn’t go.” Your daddy knows me well enough though to know that his words were falling on deaf ears. I was on a mission and destroying Camelback Mountain during the hottest part of the day was what I was set on doing. There was no telling me otherwise. I packed my backpack full of a ton of cold waters, made sure my phone was totally charged as bounced out the door to drop your brothers so I could take my anger out on something… anything to get me through the day.

Hiking Camelback on a normal temperature day is not an easy feat.  Throw in the scorching heat, not to mention my anger/sadness/grief and the inferno that day went to a whole different level of hell.  I climbed as fast as I could, feeling the pain as my hands burned every time I would go to grab a boulder to pull myself up on.  I could only let my hands touch them for a few seconds before I would end up pulling them away so they didn’t get burned too badly.  Not many people were on the mountain that day, but yes, there were a few who were just as crazy as me.  I found myself wondering if they too had dead kids or parents or lovers or friends. Was it possible that somebody up here hurt just as much as me? What in the world had they endured in this lifetime to make them climb up a mountain during such an intensely hot day?? I let all these thoughts fill my mind as I continued to climb.  I had to stop quite a few times which I normally don’t do.  After about 45 minutes, I knew I had enough and I made myself turn around even though I was still about 5 minutes from the top.  I’ve never not made it to the top, so this was a first and I was not happy about it.  But I also know my limits and just how to come really close to the edge of things in life without not totally falling the side of the cliff.  I had just turned around when I noticed a guy in black shorts coming up as I had to move out-of-the-way so he could pass me.  You always give the right away to the people coming up, at least on my mountain where I follow and respect all the rules that my veteran hikers have put into place.  I didn’t think much of this person passing me, but I gave him a quick hello, made eye contact, and really wanted to say, “What is causing you so much pain to hike on a day like today?” I made my way down the mountain, slowly.  I started to get really disoriented and dizzy from the heat.  I have hiked that mountain no less than 300 times, so I was not worried about getting lost, but I was worried about passing out.  I got to the part where you have to hold onto some rails to climb back down.  I know I was delirious at this point because my head starting saying things that maybe used to fill my mind a lot, but do not very much anymore.  I heard myself talking about death, dying, and was I dead?? Maybe I was really dead and this was really hell.  Did I want to die?  I was so out of it at that point that I couldn’t really answer my own question.  I let my mind drift and wander to those morbid places for a couple different reasons.  One being that I really wasn’t in control of the thoughts that were taking over my brain and two because sometimes I just have to go there… to the darkest of the dark places.  I live in that place, but I don’t visit it very often anymore so when it’s time to take a little vacation to all things dark, I just allow myself to go and don’t really question it much.  I cannot live in the constant sunshine every day of my life as it gets so exhausting to do so.

I ended up calling your daddy at some point and I don’t remember what I said, but I think I told him I wasn’t sure if I was going to make it to the bottom.  He offered to come and get me and of course I said no.  Don’t forget I have that whole ‘I’m not a princess and I don’t need saving’ thing still going on.  I made it to the car where I blasted the A/C and sat for a bit as I recovered before I attempted to drive just a few minutes home. I came crawling through the door as your daddy handed me a big Gatorade and watched me sink down to the ground where I passed out for a few minutes on our cool tile floor.  I opened my eyes just in time to see him hovering above me and heard him say, “Have you had enough self-torture for the day?” For the day, yes.  For life, never. I rolled my eyes and went to our bedroom where I showered and passed out for a good hour or so only to wake up to a raging headache that was brought on by my stupidity.  Do you think I learned my lesson and will never do that again? You know me better than that, Ronan.  You know I’ll be back up that mountain in no time to do it all over again.  I’ve been hiking it still, but going really late in the afternoon where the temps are in the low 100’s. Those temperatures are easy to hike in for me compared to the 110 in the middle of the day.

A couple of days after my Saturday inferno, I heard on the news that a hiker was missing on Camelback Mountain.  I didn’t think much of it until they mentioned he had gone missing on Saturday, around the same time that I was on the trail.  I googled the story and found it almost immediately.  He was 23, from Washington State and his dad was pleading for his son’s life.  I tried my best to remember if I had seen him on Saturday and my mind went back to the guy in the black shorts.  Could that have been him?  In my mind, I thought he looked much older than the person I was looking at on my computer screen before me, but still I couldn’t shake the thought of somebody missing on that mountain.  My mountain of all places where I have hiked over 300 times and it’s one of the few places that I can count on in life to accept my grief, nurture my grief, love my grief and never judge my grief.  My place of solitude and peace and now you’re telling me there is somebody missing up there? I couldn’t stop thinking about it and didn’t know how he hadn’t been found.  It’s a big mountain, but not that big and the helicopters/search and rescue had already been looking for days.  On Tuesday, I was restless and left the house after your daddy got home to go hike Camelback to see if I could maybe help look for this kid.  It had been 3 days and I knew if he was up there and found, that it was not going to be good.  Still, I asked whoever is in fucking control of this life, for a miracle.  Just as I pulled in, I saw that the mountain was closed and a sign was posted saying a rescue was in progress.  My stomach sank as I drove off to hike my little back up mountain as I watched the helicopters hover about.  Please let him be alive.  Please, please, please.  I came home and checked the internet for the news.  A few hours later the updated story was posted.  A hiker was found dead about 200 feet from the top of the mountain, but they would not confirm that it was indeed the hiker that went missing on Saturday.  The next day it was confirmed that it was the missing hiker from Washington State. My thoughts immediately went to his family as I could actually imagine what it was that they were feeling due to knowing what it is like to know your child is dead. The shock.  The numbness.  The pain that hurts so badly that it is almost indescribable to put into words. I know what all of that is like and I’m just sorry that those parents now do, too.  It’s been over a week and I can’t stop thinking of this kid and what happened.  I will never be able to hike that mountain again without thinking of him and his family. It’s just beyond sad.

I talked to some of the regular hikers after it happened.  Eric’s body was found about 500 feet below the summit.  They showed me where he was found as I wiped the tears away from my face.  The cause of death has not been released, but I imagine it had to do with the heat and the fact that he was not familiar with the mountain which caused him to end of getting lost and disoriented.  The whole thing just makes me incredibly sad and not that I need it but it is a reminder of how precious and short life really can be.  And yes, it is also a reminder that I know I need to be careful up there because I do not really want to die.  Sometimes I just want a break from all of this pain though.  I maybe need to find a better way to help with that instead of hiking up a mountain during the hottest part of the day.

Your brothers turned 11 yesterday, Ronan.  I cannot believe I have 11 year olds and more so I cannot believe I am lucky enough to have the amazing 11 year olds that I do.  I could not be more proud of the little men they are becoming and I know without a doubt they are a big reason of why I have been able to survive the loss of you.  They have saved me and someday, I will tell them this when they are a little older to understand exactly what that means.  You were missed yesterday so very much.

I’m going to run now.  It’s 4 in the morning here and I’m back to keeping the hours of a vampire.  Up most of the night and functioning on just a few hours of sleep.  It’s the only time I’m able to work on this book writing as Poppy takes up any other time that I have left.  Dr. Sholler is actually going to be at our house in about an hour.  She is here for the next few days and I’m taking her up Camelback for an early morning hike, before it gets too hot.  No way I would ever take that precious cargo to the inferno.  She has too many kiddos to save.

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

Bye, little man.

xoxo

  • Instagram is my BFF

    Yeah, sometimes the kindness of strangers leaves me sobbing at the post office for 20 minutes before I can drive away... #ronan #fucancer #thankfulforthekindnessofstrangers #rolove #thankyouforbeingbetterbecauseofhim #imissmyspicymonkey This makes me sooooo happy. Can't wait to get home!!! @lynnstephens @quinn.thompson24 #ronan #fucancer #nosunshineallowed #becauseitswinter #imisswashington #movemeback @mommaozzzzz Somebody in this house must really love this dog to have covered him up with a blanket. Something tells me this was @quinn.thompson24. Sweet boy. Sweet Teddy. G'nite, world. #ronan #fucancer #nicestboysever #luckymama #missyouro #pearldidnotdothis
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