Dear Empire State Building, Part 2

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An Open Letter To Anyone Who Cares To Read It:

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

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

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

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

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

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

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

Stay Gold,

Kassie Rehorn

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The signs and The stranger

Ronan. I had a hard day. I was missing you extra much today; if that is even possible. We woke up late as we have been doing during these lazy, beachy days. I had a phone appointment to talk to my therapist, Sarah. I walked down the boardwalk and sat on a bench to have our session. I told her how it was easier in some aspects to be here, away from home, but hard as well because of all the memories I have of you here. As I sat and talked to her, there was a little boy about your age playing in the sand right in front of me. He kept taking the sand and throwing it everywhere. So something you would have done. I sat and watched him and cried and told Sarah how much it hurts me to see things like this. How much that deserved to be you playing in the sand and throwing it everywhere. We had a good talk. We talked about how I worry about you and how much guilt comes with having you gone. Guilt for doing silly, normal things. I told her I wonder if you are watching me and can’t believe that we are all trying to do things that make us happy. I wonder if it hurts your feelings. It hurts my feelings, Ronan. I don’t like doing all the things we are doing without you. I told her as much as I would love to believe in the picture perfect world of heaven, with you dancing with angels on clouds with harps playing in the background; that I don’t. I’m having a hard time with the not knowing part. We ended our conversation much like the way friends do. She worries about me and told me to call for anything. I will talk to her next week unless I need her sooner.

After I returned back from my talk with Sarah, your Daddy took your brothers over to the Rec Center to play basketball. I crawled back into bed and slept for a couple more hours. I cried and slept and cried and slept some more. I did not want to leave my bed today. I wanted to stay in bed with your blanket and think about you. Right when I was trying to talk myself into getting out of bed, Mr. Sparkly Eyes called. I swear it is always you who tells him to call when I need a good kick in the ass. As soon as I answered he asked what was wrong. I told him, nothing, but everything. He asked if I was o.k. and then said he knows I’m not, that I’m hurting like hell. I cried for the few minutes that I talked to him but he then made me laugh by asking me if I was crying because the ocean from surfing kicked my ass yesterday. I then make some remark that it was the other way around and I kicked the ocean’s ass. He then said, “That’s my girl.” It was something so little but it made me feel better. For about 2 minutes anyway but that’s better than nothing.

Your brothers came back from basketball and were begging to go down to the pool with Jake and Carter. I said I would of course take them so we spent the afternoon down there. I absolutely love being with all 4 of those boys, Ronan. I love to watch them play and laugh and Liam and Quinn are so happy with them. I was watching them run down the boardwalk tonight and I pictured you running behind them, trying to keep up like you always did. You were always so much older than your little 3 years as you could hold your own as well as your brothers. At one point, I looked over and Carter had his arm around Quinn as they were walking together. Such a big brother thing and it made me tear up because that is so something Quinn would have done to you. You would love being here with all of your cousins. They are the sweetest kids.

After our day at the pool and brrrrrr it was freezing, we had Kenny, Stacy, Mac and Kennedy over to grill again. We all sat outside and the kids swam and we enjoyed our time together before we were all frozen solid. The 4 boys continued to jump in and out of the pool and hot tub despite the cold air. It was a good night after a hard day. Everyone is asleep now and your Daddy goes back to Phoenix tomorrow. We are going to miss him. I’ve got to figure out how to keep your brothers entertained. They are pretty easy to please so it shouldn’t be too hard:) I am lucky to be able to take such good care of them.

So, after a hard day I can tell you a few things got me though it. One being this silent auction that is going on at The Biltmore this Friday. I cannot believe all the community support and love that has come of all of this. I am in awe, speechless, and so incredibly proud of the way my son has inspired you all. This all came together in such a short amount of time and the donations and people offering to help in any way they can brings me to tears. I want to be there so badly, but I’m not sure if I can. One of the biggest reasons is emotionally I just don’t think I am ready. Ronan passed away such a short time ago and I feel as if the most important thing I need to be doing right now is just trying to mourn him, respectfully, and to take care of my twins. There is also that whole guilt thing I am dealing with. This is a totally new emotion for me, as I’ve never really felt guilty for anything in my entire life…. and I’m having a really hard time learning what to do with it. I’d be lying if I said I wouldn’t feel guilty for being at this event when it feels like such a celebration for Ronan; which it should be and  I am so thankful for that. But, I, as his grieving mama, am just not ready to celebrate him in this way yet. Please know that I would love to meet all of you who are doing so much to support Ronan’s cause and there will come a time when I can mentally be in that place, but it is not now. Everything is too fresh and raw. I will be thinking of all of you though as you all have impacted my life in a huge way. I now hear all the time about how Ronan has made you review your way of life, but please know all the love and support coming from each and every one of you is changing me as well. You make me believe in the power of selfless love and what it means to be a part of something bigger than yourself. You all make me believe that Ronan and I can change the world into a much more beautiful place. So thank you from the bottom of my heart for making this event happen all of you little busy bees out there. I just know the sky is going to be filled with the brightest stars that night.

A couple of other things that helped me though my day came in the form of some emails that I would like to share. One, I got permission to share. Her email was so sweet and I loved what she had to say. Thank you, Alicia for this. I loved hearing how your day ended. Here goes…..

Maya, Sorry to disturb your family time but I HAD to let you know what I experienced today. After a hectic day, I had to rush to pick up my girls (6 & 4 in 2 weeks) from school, rush home to get them dressed & to a reception for the team my husband coaches during his off season. We made it to the Botanical Gardens with minutes to spare. I got the kids out of the car & they took off running. Taylor (6) ran towards the venue, Ashley (3) ran straight to & through a giant mud puddle. There was mud everywhere, all over her white dress, face, hair. I was PISSED. We’re already late. Now I have to go home & change her. All that was running through my mind is how our being late would look & what people were going to say/think. I ran over to Ash & as I reached to grab her, a HUMMINGBIRD flew between us. My hand was inches from her arm & there couldn’t have been a foot of space between our chests & all of a sudden there it was. I jumped back. It hovered there for a few seconds, flew around Ash 3 times & flew off. It honestly took my breath away. I instantly though of you & Ronan & how selfish I was being. You’d do anything to have Ronan dirty some clothes & make you late. When we released the balloons for Ronan, I promised I was going to be a better mom, wife & friend. Now, here I was worrying about stuff that doesn’t matter, about people who don’t matter. I honestly believe that hummingbird was your son reminding me of that promise. With tears streaming down my face, I picked up Ash squeezed her tight & kissed her all the way back to the car. We never made it to the reception, instead we grabbed some ice cream & walked along the bay front, muddy clothes & all. Thank you, to you & Ronan for opening my eyes!

Alicia Joseph
This last email came to me tonight from a stranger but it was such a gift to me. I talked earlier about how I have been wrestling with the perfect heaven world. I swear to god, this is a sign from Ronan as my therapist, Sarah and I had a long talk about this subject today and then this email came in tonight. I cried to Sarah on the phone because I told her I’m having a hard time feeling Ronan around me. All I want is to know he is here and I’m not getting any kind of a vibe. I think right now, Ronan is trying to let me know he is here, but he is doing it through other people. Sarah had a dream about him the other night and he was smiling and waved to her. I know he is here still, I think I just have to get though this deep sadness before my mind and body will be more open to letting him in. Anyway, back to the email from the stranger that I got tonight which by the way, made me cry like a baby. Here goes….
Dear Maya:
I am just another person sucked into your blog. Yes, writing from a ridiculous unrecognizable email address.  I chose to email you privately versus posting this to your blog because I hope this message gets to you and resonates.
I lost 2 friends to cancer, sisters.  1 this past September 2010, as your baby’s fight was beginning, and her younger sister 8 years prior. Every day I ask myself how their parents go on. My friend was 38 when she passed, and her younger sister just 26. The baby and middle daughter of 3 girls.
This email is not going to ramble on about my friends but give you some brief insight on why I want to deliver this message to you. Your writing, your thought process, your profanity and your honesty reminds me so much of my dear friend and I cannot help but feel connected to you because of it.  She fought cancer for 22 years having her first diagnosis as a teenager, and bravely battling recurrence after recurrence. Her younger sister suffered for 4 years, before losing her battle.
The one thing I know my friend loathed more than anything was having others bring up comparisons of their 60 year old aunt bessie’s cancer battle, or their uncle joe’s who was 50 something, and so I do not make any comparison of their cancer, to childhood cancer, whatsoever. It would seem everyone who met her or knew her story felt compelled to discuss a friend or family members cancer fight. Enough already with it. This is your life, your reality, and your pain. There will never be any fitting comparison. Live has handed you the most cruel dreadful burden.
I am not a bible beater. This is also not a religious talk…  I get your whole dismissal of God, and though I was raised Catholic I have had so many doubts about why God would allow things like this to happen in the world.
Now that i’ve told you all of the things this email isn’t – please let me tell you what it is… I am hoping to deliver but one simple message, one which was passed onto me about “heaven” – After my friend passed away, I happened into a church where strangely enough there was a priest talking about death. Something he said, sat with me and I share it with you.
He said… heaven isn’t out there… its not up in the clouds or in some imaginary paradise. Heaven he said is a place filled with love and where you are with God. He went on to say that God is in each of us. When you lose a loved one, they are with you in the truest sense every waking hour and resting hour. I will never think of Ronan as being somewhere out there, but with you. With you Maya.
Everytime I read one of your posts about the girl from the store who said shit and caught your attention, recurring songs on your ipod, your need to run up the mountain alone to find solace, or your trip and fall on your recent run, or a flannel clad girl in the end of May who runs back and stops you in the street, I keep saying to myself… he’s there Maya, he is trying to get your attention to let you know he is right there. No one on earth has more moments of serendipity as you have since Ronan passed away.
He lives inside you, in a place where he can feel every bit of love that you could never express to him through mere words, or even actions on this earth. The place you unknowingly created for him, heaven.  Everything inside you that aches from loving him that is where he is. He is not hurting, not suffering. That priest also said that you can go so deeply into meditation that you can talk to that loved one … in the place where you truly can share your feelings, fears, unspoken words, and you will feel them communicate back with you if you get better at meditating deeply, and finding them. When you take your runs and midnight swims and you’ve beaten your body to a pulp so that your mind is sort of blank, you are getting close to that place where you can find him, at least I think you are. Its a place where you can meditate and be alone with him and ask him to talk to you. Do you think I am crazy? Perhaps.
When you worry that Ronan is out there and you cannot think he is safe or is he wandering around without you.. never never never believe that.  Ronan is trying so hard to get your attention… perhaps even through emails, postings, and blogs from random people.  Every time I read something new from you, I believe it even more. I think I have to point it out to you.
Fuck this life that you cannot kiss his sweet lips and hug him and giggle with him, or cry with him. Fuck life that you never had the chance to fight on for years even when you were prepared to. Life is wretched and miserable and I hate your families pain. FU Cancer. I am not one of these people who thinks Ronan wanted to be “with God”. When you said he wanted to be in AZ with his family. I believe that wholeheartedly. I believe that is why he is still with you. He is not about to leave. He will always be your perfect gorgeous baby boy, and I know you will always mourn and grieve his loss as long as you shall live.
For years my friend had dreams of her sister who passed away before her. The day before she died she told me that she had the most vivid dream that her sister was well, and running and laughing, and asking her to catch her and come with her. She was chasing her sister in the dream, and couldn’t catch her. Her sister told her nothing was hurting anymore.
My friend told me it was the most beautiful dream and the one she couldn’t shake because it was so real. None of her prior dreams she said had felt so real. Even the dreams that for years had her walking up with tear soaked pillows. My friend passed away the very next day. I pray those sisters are together and have no pain, and no suffering.
I am sure you are sick of cliché’s and BS. If you decide this is the biggest load of crap and you want to post it and tell others to keep this shit to themselves then I get that too.  But there is a part of me that hopes and prays you will be able to find my message makes sense to you.
When you told Ronan, to come with you and leave that place, he did it. He went with you and that is where he has stayed and where he will stay. Your soul and his will be locked together for eternity. Keep doing what you are doing. Keep writing to him, keep working towards your goal with his foundation to keep him alive, to bring hope to others, to teach everyone about undying love and devotion. You and Ronan speak to masses of people and can make a difference in this world. He has impacted more people in his short life than I could dream of in my 40 years on this earth.  I wish you so much inner peace and the ability to connect again with Ronan in a much deeper spiritual way. I hope you feel him with you, truly feel his presence. I hope he keeps giving you little signs and that you can recognize them.
-A stranger
Well dear stranger… I wish I knew who you were because your words hit me harder than anything that I have been told so far. I believe everything you just said to me and it makes absolute sense. Ronan’s heaven is with me, with his family, and even with all of you. He has left me little signs everywhere, I just didn’t know how true they were until now. The hardest part of this is not being able to physically see my baby boy anymore, not to be able to touch or hold him. I will never get over that but I have to believe his spirit is still here right next to me and someday, I will meet him on the other side. When it is my time to go. Until then, I will be sad for the rest of my life but I know that I will find a new happy as well. In the kindness of strangers, the love from my family and friends, and pushing forward to keep Ronan’s story alive so we can help other children. I want Ronan to be the voice for children with cancer everywhere. He would never give up this fight so I will do whatever it takes to support him. I couldn’t do this without all of you and I do believe the more people we have on our side, the more we are going to be able to do. So thank you again, for believing in my baby, for loving your beautiful, “perfect,” lives enough to know that Ronan deserved to have that too. And since he was robbed of it, the fact that you are all willing to continue to fight so hard for him with me says so much about the kind of people you are. I am honored to have you with us so we can continue on Ronan’s journey. I love him so much. I miss him so much. And I would give anything to have him back. Somedays, I swear I am going to just die from sadness but then I force myself to think about everything I have that is so beautiful in my life. I have to make a difference for everyone around me; not just Ronan. Liam and Quinn deserve to grow up and watch how if you live a life full of fight, passion, and love…. you can survive and do anything you want. I promise to make them proud of me too, by living our life as if Ronan is still here. By laughing about him, by talking to him, by celebrating him, by loving him forever.
Alright my sweet friends. I’m a snotty mess who needs to calm herself down. I wish tonight what I wish for every night. Blessings for all of you and sweet dreams of Ronan. He is safe… I know this now thanks to the stranger:) Tonight, I will fall asleep knowing that he is not roaming the streets of Vegas. Although, he would have made a very nice newest member of “The Wolfpack.”
G’night my sweet boy, Ronan. Tonight and every night, I’ll fall asleep with you in my heart.
xoxo

And a very special thank you to my Silent Auction Fairy Godmother. Yes, you know who you are. I’m telling you right now, that Ronan is going to watch over you everyday, for the rest of your life. Your generosity and pure love for someone you’ve never even met is unheard of in this day and age. It’s people like you that make this world such an amazing place. Thank you, my dear friend that I hope to meet someday 🙂