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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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

BeforeAfterDuring

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

Dear Empire State Building, Part 3

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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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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

I kind of think I might do this one day.

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“Desert Runners” is supporting The Ronan Thompson Foundation during the month of June! The film follows ordinary people pushing themselves to extraordinary limits by competing in 4 ultra-marathons in the most treacherous deserts in the world.

Much like how RTF will never quit on funding for new treatments and defeating childhood cancer, these runners will never quit on their goals.

The film is available for download at http://buy.desertrunnersmovie.com/ Any amount of money you choose to spend over $9.99 will be donated to the Ronan Thompson Foundation for us to pursue our goals and fund cutting-edge childhood cancer research. Enter the code: RONAN at checkout and receive a 10% discount on the film!

If you spend over $11 you will unlock the SUPERFAN PACKAGE and get access to over 30 minutes of bonus content including interviews with the director, cinematographer, executive producer and the desert runner himself Ricky Paugh.

We are so very excited to be a part of this amazing adventure.  Clink on the link below to watch and support RTF! Thank you, Desert Runners for choosing RTF as the charity to support!!

http://buy.desertrunnersmovie.com

I have something new to share…

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This has been in the works now for some time now, but we’ve just been being a little quiet about it.  As a board, we decided RTF needed a new logo.  It was hard for me to part with the baby seal, as it had sentimental value.  Nobody really understood why we had a seal as our logo.  It was because “Ronan” means “Little Seal” in Gaelic, but most people don’t know that therefore the seal was confusing.  We were getting a lot of, “Are you trying to save the seals or what?” No dudes, we’re trying to save kids with cancer… how do you not get that from looking at a seal? (kidding. I know it is confusing if you don’t know the back story)

We met with some very talented and kind people at Fervor Creative for hours upon hours.  I even had them revamp your seal logo before my board members told me they were just not feeling it anymore.  So I took Tanya and Fernanda to have yet another meeting with them.  We sat and talked about you and the things that came to mind when we thought of you.  I had a picture in my mind of something really simple.  A boy wearing a Fedora. With his head held high, like you alway had yours. We also talked about stars and the significance of those to us.  I knew having Fernanda with me was vital to getting this done finally the right way.  She has a way of expressing her thoughts about what you represent in such a beautiful way and sometimes I am too sad to do so.

We got some samples back and as soon as I saw them, I started to cry.  What they came up with is beyond perfect and I am beyond in love with it.  I sent it to your daddy and he had the same reaction.  He said it reminded him of the book, “The Little Prince” which he loved to read to you.  I knew from both of our reactions, that this was perfection.

So, here you go Ro and supporters of The Ronan Thompson Foundation.  Makeover complete.  Thank you to Fervor Creative for taking a bunch of rambling words full of such love and pain, and turning it into something as beautiful as this.  You have hearts of gold for taking this on and not charging us a dime.  We are forever thankful for what you have created for us and promise to continue to do good things in this world with the gift you have given us.

 

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May, May go away. Do not come again another day.

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Ronan.  May is officially here and I’m trying my best not to go into freak out mode.  You know what is coming up and it never gets easier.  May 9th will be 3 years without you and May 12th will be your 7th birthday.  Not to mention Mother’s Day, the day we had your funeral, the day you were cremated, which also happens to be on your birthday.  It’s all these fucked up dates that I wish didn’t exist, but they do and there is no escaping them.  I will come up with some sort of plan to get through the days like I always do and luckily I know we will be with some of my most favorite people, so hopefully that will help ease the pain just a bit, but every part of me remembers the pain of these dates.

I don’t even know what has happened since the last time I have written.  My days are filled with all things Poppy and that is about it.  I have really taken a step back from everything in life because for the past year, I just really needed to get lost in her and that is exactly what I have been doing.  She deserved that, Ronan and frankly, so did I.  I needed to just take this time and soak up all of her innocence, sweetness, and truly get to know my baby girl.  Poppy doesn’t have a lovie or a blanket that she is attached to when she sleeps like you did because you know what she uses instead? Me. I have not put her in her crib once to sleep, not even for a nap.  I rock her, lay her down in bed with me and listen to her as she hums and plays with the necklace that sweet Mrs. Martin gave to me when Poppy was born. It’s just the letter, “P” and she falls asleep every day and every night by holding on to me and my necklace.  That is how attached we have become and I wouldn’t have it any other way.  I cannot imagine doing this life without you AND without her.  I don’t know what I would have done had we had not had another baby.  She brings about me a calmness that has been missing for so long.

It did happen the other day though.  The thing I knew was going to happen sooner or later; I am just surprised it happened while she is so young.  It was about a week after her first birthday and I was laying her down to change her on your bed.  We have that huge picture of you hanging over your bed and as I was putting a new diaper on her she looked over at your picture, pointed and goes “Ro Ro.”

I almost fell over.  I truly thought I was hearing things so I said, “What did you say?” She looked at me, pointed to the picture and goes, “Ro Ro. Brotha. Brotha Ro Ro Ro.” She motioned for me to pick her up and take her over to your picture so I did and she planted a big fat kiss on your little lips.  The tears started pouring down my cheeks and I had such a mixed reaction of total euphoria and wanting to run kicking and screaming out of our house.  It took me a few minutes to decide what it is that I was going to do.  Was I going to run away or just take a deep breath and embrace this moment of pure fucking amazingness that can only be explained as Poppy knows things that are not from this world?  She can’t even say Liam or Quinn’s name yet and the fact that she not only said your name, but knows who you are from a picture makes my heart go a million miles a minute.  As soon as Quinn and Liam got home, I grabbed Poppy and took them into your room.  I said, “Watch this.  Poppy, who is that on the picture?” as I pointed to you.  She goes, “Ro Ro.” Quinn started giggling uncontrollably and Liam didn’t quite know what to do.  “She just said, Ro Ro! Mom! Did you hear that?!” Quinn was jumping around with such excitement.

It’s been non-stop since that started a few weeks ago.  All day long all I hear, besides her barking like a dog is “Ro Ro Ro Ro. Brotha Ro Ro.” She is usually walking around carrying a picture of you, kisses it, and goes back to playing with something else.  She also studies the picture frame you are in like crazy, trying her best to open it.  It’s like she’s saying, “I know if I get this open, I can get him out and he can come and play with me.” I truly think that is what she thinks.  Oh, how I wish this were true.  I’m torn between loving all of this so much to sometimes it makes me sick.  As I said to your Sparkly the other day, “I’m going to break Poppy’s heart one day when I have to explain to her where Ronan is and what happened to him.  I don’t want to break her heart. How am I going to look my daughter in the eyes and have that conversation with her?” The thought of it makes me want to vomit all over the floor.  Why the fuck can’t her first heartbreak be over some asshole guy she will date when she is 16? Not over her beautiful brother that would have loved her so much, taken such good care of her and beat up the fuckwad who broke her heart? I like that story much better than the one I’m going to have to tell her.

I think I have to go now, Ro. Much more to say as always but my eyes are burning and bed is calling my name.  I’m forever sorry it is this way.  I miss you.  I love you.  I hope you are safe.

xoxo

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