I hope you all know just because I haven’t been posting doesn’t mean I haven’t been writing.

At what age do you think we realize our mortality? That is the question I posed while lying in the MRI machine, trying my hardest not to freak the fuck out over how claustrophobic I felt. God damn it, Maya. Why can’t you think about something more pleasant to pass the time? You just had the most incredible summer; a pinch-me moment summer. The pinch me moment came while I was on a whale-watching boat in the San Juan Islands of the Pacific Northwest. I had Poppy on my lap, and she was giggling over the ocean swells we were bouncing over. The salty ocean water splashed our faces, and there he was. Just across from us, I locked eyes with him. Those eyes were just as they had always been, only now, they were extra sparkly for me. He laughed out loud, took out his iPhone, and snapped a picture of Poppy and me. I felt my stomach drop as I pinched the inside of my arm, and I felt the slightest tinge of pain. I hadn’t had one of those moments since before Ronan died. Why can’t you think about that moment while you are lying here instead? Why the fuck do you have to have such a morbid brain? Duh. You know why. Insert dead child here. I closed my eyes to try to block out the impending doom blasting in my ears from the MRI machine. You would think with all the incredible technology in the world, somebody would have figured out a way to make this “experience” a little more pleasurable. 

Six days prior, I was on an airplane with Woody and Poppy en route to Omaha, Nebraska, to take Liam to college. Liam, Quinn, and their best friend Landon were driving Liam’s car out, and we had planned it so we would all arrive in Nebraska around the same time. Mr. Sparkly Eyes stayed behind because he had a couple of appointments and also the animals to look after. Despite my best efforts to get him to come, he remained steadfast in his decision. “Please.” I played with his foot under the dinner table, hoping I could coax him with the delicious homemade meal that I had placed in front of him. “My darling. The love of my life. Trust me on this one. This is an emotional time for all of you, taking Liam to college. I have things to take care of here, so I will stay behind while you spend this time together. It’s three days. You have to trust that I know what I’m talking about. I’ll say my goodbye to Liam here and let you all have your time in Omaha as a family.” 

“You are also our family, and everyone wants you to come, not just me. I understand your reasons for not coming, but I will miss you so much.” I pleaded, but I knew he wasn’t changing his mind.“It’s only a few days, my darling, but I will miss you, too.” He kissed the top of my forehead, and we finished up the rest of our dinner. We had been through a war to get to this point, and someday I will share that story, but not here.

I boarded the Southwest flight to Omaha a few days later and took a slew of emotions with me. Our first college kid drop-off. How the fuck are we all going to survive this separation? And why doesn’t anyone talk about how hard this transition is? What do you mean I must be so excited about sending my firstborn twin off into this big wide world and trusting that the Zodiac Killer won’t abduct him? Why can’t he remain with us for the rest of his life? Or better yet, let’s pack up and move to Omaha for half the year and spend the other half in Santa Cruz with Quinn. I’m not exaggerating when I say both of these “plans” had crossed my mind. Woody was not handling the boys leaving for college well. I was not handling the boys leaving for college well. But I think out of all of us, Poppy was the most heartbroken. Once the boys had decided on colleges, we discussed it more frequently, and she started having mini breakdowns. I wanted to be proactive in trying to help her navigate things, so I found a therapist for her to see once a week. Her therapist was a good fit and someone Poppy took to. I wanted to make sure she knew her sadness was valid and that she felt comfortable expressing whatever she may be feeling. Some nights I would find her in her bed, under the covers, with tears streaming down her face. I would crawl under the covers to hold her, and often, we would cry together. She would eventually find her way back to me, and the words would start. 

“Why do my brothers have to leave me behind?” 

“I’m never going to get to see them anymore.” 

“I’m going to be an only child now.”

“I’m going to be lonely because they are my best friends.”

“Who is going to play board games with me?” 

“Why can’t they just stay here and go to ASU?” 

I would answer her questions one by one. Eventually, I would make her laugh, and we would find our way out of the darkness and back into the light. I am quietly trying to teach her the importance of embracing the darkness in this messy, complicated world. That everything cannot be fixed with a fake smile or stuffing down feelings. Not acknowledging our truth can be detrimental to our mental health and significantly impact our lives in a harmful way. I cannot tolerate the fakeness that people carry around in this world, sprinkling it around like it is the answer to everything. Eventually, you will rot from the inside out, and I am such a huge believer that embracing the darkness has the power to invoke so much healing in ourselves and lead us to places we never knew we were capable of going. 

“Mama. How long is this flight? Did you pack my headphones? What about snacks?” I looked over at Poppy and felt my heart flutter. Fuck. I don’t know what I would do without her. For as much as she needed me, I very much needed her. She was the yin to my yang. My mini in so many ways yet so fiercely her own little being. She was magic and fire, and I still thank Ronan every fucking day for her. I KNOW he had a hand in giving us this little girl of ours. The sister he always wanted. His “Minnie Mouse,” as he wanted to name her. I pulled her backpack out from underneath her seat and got out everything she needed to occupy her for the next couple of hours. I pulled out my computer and spent the majority of the flight going over edits on my book while I listened to my writing music on my headphones. Side note: I ALWAYS only listen to Taylor Swift when writing. An hour and a half went by, and Poppy tapped my shoulder to ask if I would do an activity book with her. We had about thirty minutes before we landed, so I put away my things, and we started doing a crossword puzzle. Twenty minutes passed, and the flight attendant got on the loudspeaker to announce that we were making our descent and that the plane would be landing soon. That is the last thing I remember about our flight. I woke up on the tarmac of Omaha, Nebraska, in a parked ambulance with no memory of how I got there.

“Do you know where you are?” My eyes slowly refocused as I looked at some sixteen-year-old paramedic asking me this question. A question that I couldn’t answer. I had no idea where I was. I could see a solemn-faced Woody trying to comfort Poppy. She was trying to be so brave but was quietly crying. I could see my daughter crying, but I could not figure out how to articulate any words or motions to comfort her. My brain cannot process anything that happened or what was going on at the current time. I was asked a few more questions by the paramedic, which I do not remember, and I have no idea if I was able to answer.

Mr. Sparkly Eyes called. “My darling. I’m on my way home, and then I’m getting on a flight. Woody called me from the plane and told me what had happened. I’m landing close to midnight. I’m trying to get there as fast as I can. I have the best doctor I know in Omaha at the ER waiting for you. She’ll look after you and update me on everything, but I’ll be there as soon as possible.”

I thanked him, told him I loved him, and hung up. I hardly remember arriving at the ER, but when we got there, we were met by multiple nurses and a doctor. Blood was drawn, vitals were taken, more questions were asked, and a CT scan was ordered. A couple of hours went by, and a doctor walked into the room. 

“Your lab work came back normal, and your CT is normal. Have you been under a lot of stress recently? You had a Grand Mal seizure, which can be induced by stress or lack of sleep.” 

I think about this question, but my brain feels foggy, and my head feels so heavy. I answer back. “Not more than normal, but maybe taking your firstborn to college is stressful? I’m not stressed, but maybe I am. I just feel sad.” 

She smiled at me and said, “Well, we can release you, or we can keep you, but if you stay, you’d have to stay in the Emergency Room because our hospital is full.”

“That’s not necessary. I want to be discharged.” I looked over at Poppy and Woody; both looked pale and terrified. 

“Alright. We will unhook your IV, and you can be on your way.” 

Twenty minutes later, I was out the door, walking to the car. I asked Woody what happened, and he explained details I had no memory of. I asked him if the boys knew, and he said he didn’t want to tell them until we saw them in person, which I was so thankful for. The car ride to meet the boys was quiet. I felt like absolute garbage. We arrived at Airbnb, and just as we parked and got out, the boys pulled up to us, horn blaring as the three of them were excitedly laughing away. They hopped out of the car only to be met by our stone-cold faces. 

“What’s wrong?” Quinn asked. 

Woody replied, “We just got out of the ER. Mom had a seizure on the airplane right before we landed.” 

All three boys looked shocked and perplexed.

“What the fuck?” Quinn said.

“Exactly. What the fuck is exactly how I am feeling.”

They all came up and hugged me and asked if I was alright. Besides the inside of my lip looking like raw cartilage and feeling extremely tired, I was ok.

“Yes, I’ll be fine. I’m just tired. Let’s get you settled and grab a bite to eat. I’m sure you all are starving.”

I managed to make it through dinner, although looking back, I don’t know how I didn’t pass out in the salad I was trying to consume. We returned to where Woody, Poppy, and the boys were staying and waited for Mr. Sparkly Eyes to land.

I sent him a slew of texts. 

“Is this brain cancer?” 

“Am I going to die?” 

“I don’t want to die.” 

“I’m so happy, and I haven’t been this happy since before Ro got sick.” 

“I love our life together. I love our love and what it has created for us.”

“And now I’m going to have some terminal illness and die, and I cannot leave my kids without a mom.” 

I didn’t care how irrational I sounded because I knew what would come next. It would be his arms, wrapped around me, talking me down from the ledge in the most rational way. In a way that only he can do. He knew just what to do with me and knew just how to handle all of my worst fears. 

Woody drove us to the airport close to eleven p.m. To say I am thankful for him is the understatement of my life. No matter what has happened and how different things are now, to me, he will always walk on water. He is the best of the best, my best friend and the two of us are in a better place than we have been in such a long time. Honesty will do that to you, as well as being on the same page about the kind of family dynamic we want to exist in. Not caring about what other people think/judge or gossip about also helps. We are family and that will never change. On the way to pick up Mr. Sparkly Eyes, we spoke quietly about what had happened on the flight. Woody was calm and rational, which is the way I knew him to always be-even in the worst of moments. But I knew he was worried as fuck. Mr. Sparkly Eyes arrived, and we picked him up at the terminal’s curb. He looked concerned but gave me a quick hug and said, “Well, this is one fucking way to get me to Omaha.”

I laughed out loud for the first time that day.

“You scared the shit out of me. Let’s get you to the hotel; I know today has been horrific.”

I let him sit in the front with Woody while I listened to them talk about what had happened and the plans for the rest of the weekend. 

The following morning, I woke up feeling like I had been in a horrific car accident. My entire body ached with pain I hadn’t ever felt before. I was exhausted, and my head still felt foggy, but there was no fucking way I was going to let that get in the way of moving Liam into his apartment. We spent the next two days getting him settled, and leaving him was as hard as I thought it would be. Poppy hugged him and sobbed goodbye. That in itself broke Woody and me. I was unprepared for how gut-wrenching this new life transition would be. I know this is a “win” in the parenting handbook of life, but it doesn’t make it any easier. 

Monday morning, I found myself in the patient room of a Neurologist who is good friends with Mr. Sparkly Eyes. The three of us sat there for an hour while he asked questions and examined me. He was pleased my CT was normal but wanted an MRI and an EEG. Wednesday afternoon, I found myself in an MRI machine pondering my morbid question. When in life do we realize our mortality? It was at this moment that I was down a rabbit hole of my own.

I watched a reel of my life in my head. All that I had done and had yet to do. Ronan’s life. Ronan’s death. The always present grief that I had finally learned to accept and understand. My book is almost finished but has not yet been published for reasons I can’t discuss now. Fuck. My kids’ lives are going to be filled with so much pain because I’m going to fucking die. The thought of Liam and Quinn enduring another loss nearly sent me over the edge. Thinking about leaving Poppy on this earth… no fucking way. I know we are not in control of any of this. I know this because of Ronan, and I start to think about the end of his little life again. Did he know he was dying? Did he know he was going to be ripped from my arms? Did he know I would spend the rest of my time on earth waking up every morning, and my first thought is always, “How am I going to get through this day without him?” Eleven years later, my grief is even more present in my life, but I have learned the secret to nurturing it; it keeps me close to him. I start to spiral and panic, and just as I think I’m going to scream for the technician to let me out, a little voice fills my head. 

“Stop it. Remember all the times Ronan would be in this machine, without anesthesia, holding completely still? Remember how brave he was? And he was only a baby. You are a full-blown fucking adult, so stop it. You don’t get to be scared, and even if you are, you don’t get to act like it.”

I closed my eyes and made it through the rest of my scan because of Ronan. I redressed and walked to the waiting room where Mr. Sparkly Eyes was. I asked him how long it would take to have my MRI read, and he told me probably a day or two. We went out to the car and drove to pick Poppy up from school. A couple of hours later, the images from my scan were uploaded to the portal. I could view the pictures, but because I’m not a doctor (duh), I had no idea what I was looking at. 

I handed my phone to Mr. Sparkly Eyes so he could take a look. He looked at the images for a few minutes, said he couldn’t see anything abnormal, but made a phone call anyway. Ten minutes later, my results were read, and thank fucking Ro, my MRI was normal. MSE grabbed my hand and said, “Look at me. You’re going to be fine. You don’t have cancer. There is no brain bleed. Whatever this is, we will handle it together. This very well could have been a fluke, as the Neurologist said. That you are in the five percent of people who have an isolated seizure once in their life, and it never happens again.” 

Usually, I would have the utmost confidence in his words, but my anxiety was at an all-time high, and I am generally not an anxious person. All these new feelings I was being flooded with were very unfamiliar to what I feel in my day-to-day life. I had one more test to do, an EEG, before I could confidently say anything was seriously wrong, and I had to wait two weeks for that test to be done. After you have a seizure, it is a strict law in Arizona that you cannot drive for three months. Driving is one of my favorite things in life and a part of independence that is very important to me. 

“But, AMY. I cannot drive for THREE MONTHS! Do you know what that means? All of my freedom is gone! No more road trips! No more coffee whenever I want it! No more driving in the car, blasting my music, however loud I want!” 

I hear my new friend I met through an old friend, laughing on the other end of the phone. “Maya. You need to calm the fuck down and just pretend you are living the life of Taylor Swift, who is black car driven everywhere. This is great; this is a dream come true. I would love it if I had someone to drive my ass around at all times. ” Once she put things this way, my whole perspective changed.

I had one person to drive me around for the next three months, and I wasn’t sure how it was going to go, but the first couple of weeks went like this:

Starbucks orders while I leaned over his lap, and Poppy chimed in from the back. He would laugh and say, “What did I get myself into?” Making him laugh feels like I’m wrapped up in my favorite sweater on the perfect autumn day. 

He takes Poppy to and from school. Some days with me and some days without. On the days I am not with them, I get a full report about what the two of them talked about and how “bloody funny, kind, and smart” my little girl is. 

He drops me off at my swim team and goes to work out until I finish. 

He drops me off for lunch with my girlfriends and sometimes joins us.

He takes me to my appointments—Poppy to her voice lessons, therapy, art class, drama, and other after-school activities. 

He takes me to the grocery store where we shop together, and he marvels at my bizarre opinions about specific olives and pickles. We converse about which milk is best, but he always defers to my choice. He stays at home with me while I work and is my harshest critic and my biggest cheerleader. 

But my favorite moments in the car are the sporadic dance parties. If he senses I am feeling anxious, worried, or annoyed with him over something stupid; his go-to is to blast Harry Styles. He moves his shoulders in a way that looks like he is dancing and begs me to dance with him. In these moments, I cannot resist his charm or his wicked smile. I have no power over myself, and I always laugh and dance with him. But then there are the quieter moments. Or the moments that he grabs my hand and says in that thick South African accent, “I am so madly in love with you. Because of you, I finally know what real love is. You have shown me what it is like to be loved truly.” These moments and all the quiet moments in between turn into deep conversations about life. This whole not being able to drive thing has turned into the most unexpected quality time. Not once has he made me feel like I am a burden, or that he is too busy, or I’m too demanding, or I take up too much space. He makes me feel imperfectly perfect, which is only one of the thousands of things he loves about me. 

Can I end this here? This feels like an excellent place to stop for now, but I promise there is so much more of this story to come. 

P.S. My EEG came back to normal. So, I am going to trust what the doctor has said and go with this as a fluke and a one-time thing. I do not have brain cancer. Or a brain bleed. Or Epilepsy. And I am not dying. But I also know that at any moment, life can change in an instant. So you can be sure that I am going to continue to live my life in a way where dance parties in a car full of laughter and love are a very regular thing.

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

Get your Spicy on!

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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 8

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Dear Empire State Building –

 

 

 

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

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

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

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

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

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

BeBoldGoGold.

Thank you!

Love,
Kate

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Are you ready to be a Spicy Monkey??

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

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

 

 

https://www.spirithoods.com/spicymonkeys

Dear Empire State Building, Part 7

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

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

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

 
Sincerely,

 
Sabrina Houara
Childhood Cancer Awareness Advocate and Future Pediatric Oncologist

Dear Empire State Building, Part 6

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

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

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

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

Dear Empire State Building, Part 4

Dear Empire State Building,

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

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

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

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

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

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

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

Sarah Dodson

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Be Bold Go GOLD!

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It’s time to… #BeBoldGoGold!

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

HOW IT WORKS:

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

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

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

The Challenge kicks off August 29th… stay gold!

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

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