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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A quick little check in because I miss you oh so very much.

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Ronan. Oh, how I miss this little blog so very much.  It makes me so sad not to be writing on here like I used to.  This will always be my first home, my first comfort after a hard day, and where I found my love for writing.  It’s hard to be away from this space that I used to find so much solace in. I cannot seem to keep up with life let alone a blog these days, not to mention this book I’m working on.  And holy shitballs, I totally have forgotten how much work it is to have a new baby.  Things are so freaking busy around here that I feel like my head is going to fly off and just explode.  Oh, and my grief.  I miss being with my grief a.k.a Inferno Fuckwad Bob, so very much. It’s not good for me to not have the time to nurture and sit with my grief the way Dr. Jo has taught me to do.  I promise that I will make some time for it soon.

I can try to sum up what has been going on, but I have no way of remembering everything.  Macy came into town for about a week and it was of course the most beautiful happy/sad/ time.  She was in for work so she got to spend two weekends with us which is always so good for my soul.  We laughed a lot and cried a lot as well.  On one particularly hard Sunday, I found myself curled up in her arms on your bed where I just sobbed for you as the missing you part of all of this never gets easier.  It still sends me into a whirlwind of complete and utter devastation at the drop of a hat.  My time with Macy wasn’t all tears.  We had the BEST time playing with your Poppy Roo and making up ridiculous songs to her like, “My two moms” which was all about the fact that Poppy does indeed, have two moms because if I wasn’t married to your daddy, I would totally marry her;) She is the best wife ever and one of my other little soul mates floating around on this earth.

Poppy came down with a little fever while she was here and we wound up in the waiting room at our pediatricians office where we know we really did look like Poppy’s two mom’s as we were resting each others heads on one another’s while Macy sat and rubbed my arm.  I pretty much wanted to curl up and die when I saw Dr. Campbell exam Poppy and Macy’s eyes fill with tears as she did her routine exam which included the pressing down hard on her belly to make sure there was nothing out of the ordinary there.  Macy knew why she was doing that and there was no stopping her tears from falling.  I just gave her a weak smile as I watched her wipe them away.  We talked about it afterwards and how hard it often is for me to walk back into our pediatricians office without you. Well, it’s always really hard for me to walk back in anywhere we used to go, without you.  Macy watched as I had to fill out the new patient forms updating our family info such as kids’ names, ages, etc… I looked over at Mace and said, “I’m writing Ronan down, too. He is still my child.” Macy just looked at me and said, “Of course you should,” as she gave my hand a little squeeze.

My weeks have been filled with pretty much everything Poppy and just trying to keep up with her.  I truly had forgotten what it is like to have a baby and now a very active baby.  How 10 months already flew by, I do not know.  She is the happiest little thing and it is so beautiful to see.  She is my constant reminder that no matter how hard of a time I truly think I am having, because there still are times that those voices creep into my head and tell me that everything I am doing is wrong… Poppy is proof that I am actually doing alright.  I don’t think she would be such a happy girl if I really were doing as shitty as I sometimes think I am.  I know the weeks that are hardest for me seem to be the weeks that I am not sleeping well.  It’s when my insomnia kicks in that the screaming in my head seems to always be the loudest.  This past week has been alright and I am so thankful for that because if I would have checked in with you last week, I would have told you I had my bags packed to check into an insane asylum.

Your brothers and their never ending sports have been keeping me busy as well, although I give pretty much all of the credit to your daddy who is the one who really keeps them on track with all if it with his coaching of their baseball team, helping out with baseball, and flag football. He is the most amazing basketball coach and has your brothers team ranked #2 in all of Arizona for a fourth grade team.  I know you would be so proud of that and basketball truly seems to have been such a saving grace to your brothers.  It has kept them focused, on track, and it’s almost like a form of therapy for them.  I could not be more proud of their dedication, will and determination.

I’ve been hiking, running, and doing my little Orange Theory Workouts like crazy.  Exercise is still one of the main things that quiets the screaming in my head and gives me just enough of a break to stay sane.  My time at the top of Camelback is always my favorite as it really is the time I feel quietest and closest to you.  The other day while I was sitting on a rock, thinking about you, I had a little hummingbird fly right up to my face.  I grabbed my iPhone thinking there was no way it was going to stay right there long enough for me to get a picture, but it did and I was able to snap the most amazing photo.  It was a moment that I still have not been able to find the words for.  I absolutely know that it was a little sign from you telling me that you are always with me.  On Saturday morning I hiked Camelback with Tricia and Marisa- my two oldest besties from my previous life when you were still here, alive and well.  It has been so long since I have been with the two of them and I cannot tell you how nice it felt.  We had breakfast for Marisa’s birthday and then decided to brave it up Camelback Mountain in the middle of our little Arizona rainy day.  Once we were at the top and had been sitting for a while,   that little hummingbird flew right up to me again.  It gave me goosebumps and chills all at the same time.  I think it was your way of telling me that you were so happy to see me spending time again with my old friends, as you know they are so good for me.  It’s taken me a lot time to be able to get to a place again where I can truly connect with the ones who knew you, loved you, and hurt so badly from losing you.  For a long time the pain of being around them was just too much, but now I feel like I am at a place where I am ready and able to come back.  I am just so thankful that they have both just been standing by for my return.  I have missed them so much and Saturday ended up being the most perfect day.  As soon as we were finishing up our hike, it started pouring down rain.  Marisa said she knew that you made it rain at that perfect time because had it been raining like that as we were climbing down Camelback, one of us would have surly fallen and broken our necks as that mountain is beyond slippery and dangerous when it’s wet.

I am trying to make myself do things that I know make me feel somewhat good because I know the shit storm of May is fast approaching.  Things like buying tickets to upcoming concerts like Lorde and Lana Del Rae, both whom I am so freaking excited for.  Also things like spending time with the ones who I know are best for my soul like our dear Kassie who I spent all of Saturday with watching “Girls” episodes while eating Nutella straight out of the jar. Ummm… excuse me…. but where has this thing called Nutella been all of my life?! It’s like crack in a jar and I might have a problem especially during my nights of insomnia where I always find myself with a spoonful of it in my mouth. It’s the simple things that make me the happiest and I have learned that finding people who truly feed your soul is the best medicine around.  I am very blessed to have the friends that I do, I know this. Your Sparkly was inquiring about my weekend and I told him I had spent Saturday night, cuddled up with my 23-year-old best friend.  He said something like, “How come you love to spend so much time with people who are so much younger than you?” I just laughed and told him I like to hang out with people based on who they are as human beings and age is not a factor.  I like to spend my time with the people who make me think about things, who push me to do better and be better, and who actually somewhat get me – himself included.  I often feel like people get too caught up in this whole age thing in life.  You should just be with the people that make you happiest and Kassie truly makes my heart sing.  I wish so badly you could be here to know her, Ronan.  Sometimes when I’m watching her with your Poppy sister, I close my eyes and pretend it’s you that she is bonding with, kissing on, and loving.  I know that in a way it is and sometimes that even makes me smile.

Alright little man.  I promise to write more later.  So much more I need to tell you/fill you in on but this is all I have time for as of now.

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

xoxo

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What birthday?? Let’s run a marathon instead, fucker.

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Ronan.  Today didn’t start out extra hard, but that is how it has ended up.  So much has been going on.  Too much, I suppose.  I made it through my birthday as best I could.  It it any surprise that I didn’t feel like celebrating?  I just wanted the day and night to be over as quickly and painlessly as possible.  I didn’t even let your daddy buy me a birthday gift and he is still talking about it, today.  He’s begged me over and over to please let him buy me some pretty earrings.  He knows if he goes out does it himself, I’ll just return them.  Pretty earrings won’t bring you back and that is still all I want.  NEWSFLASH PEOPLE, I STILL WANT MY DEAD SON BACK AND TIME HAS NOT MADE THE YEARNING FOR HIM GO AWAY.  I still beg for him every single day.  So sorry to disappoint some of you who seem to think because of this thing called time, that my wanting my son back will just disappear.  That because Poppy is here, she magically makes all my pain and sadness something of the past.  She doesn’t.  Yes, she brings back such wholesome goodness into our lives, but my pain is still here and just as present as before.  I sat with your Sparkly for a while on my birthday because it’s a tradition of mine now, 4 years in the making.  I sat across from him as he said, “What did I say, to make you cry on your birthday?” as he watched me wipe my eyes from behind my glasses. I told him that it wasn’t anything that he had said, that I just missed you so much and my birthday seemed to make me miss you that much more. He said he knew and how sorry he was and did his usual, I wish he were here, too. I came home and threw myself into bed for a few hours in the middle of the day and woke up to a pillow soaked with tears that I don’t remember crying, but the black mascara was evidence enough that they had been there.  I survived my birthday but birthdays to me will never be the same again as they just make me very, very sad.

After my very unbirthday, I’m not celebrating a thing, I had to get ready for that bitch of a marathon that I said I was running.  I didn’t really train at all except if you count going for some runs here and there, training. In my mind, I train for a mother fucking marathon everyday by just doing life.  I talked our Bri Bri into doing it with me as well.  She didn’t train at all either but I told her at 19 years old, you can do anything in the world, including running 26.2.  We got up that morning in preparation for the day.  I made us a little food, and we whispered in the dark about how excited we were to run this thing.  I took out a Sharpie and did my usual writing of your name everywhere I could.  I told Bri I was going to do her arms and she could do mine for a little extra running motivation.  I wrote, “Ronan” down one arm and of course “F U CANCER” down the other.  I handed her the Sharpie and told her to do my arms next.  I looked down at my arms after she was done.

RONAN was written perfectly on my right arm and I looked down at my left arm to see the word, “FUCKER” written in huge, black letters on my left arm.

“BRI! You wrote “Fucker” on my arm!” My whispers were no longer whispers.

“I know!” she said.  “I thought that’s what you wrote on my arm!”

“No! I wrote F U CANCER!”

We both were doubled over, laughing hysterically for a good five minutes before we could compose ourselves.  There was nothing I could do about it as the sharpie was not coming off and the car that was picking us up to drop us off, had arrived.  I decided just to roll with the word FUCKER down my arm and to see what added fun it might bring to the day.  Besides, cancer is the biggest fucker anyway.

We got downtown to meet up with my dear childhood friend, Laura who came into to town to run the marathon as she actually trained.  I had a sweatshirt on but told her the fucker story anyway to stop her from crying.  It is an emotional thing to do a marathon for the first time, and on top of that add the reason that you are doing it is for your childhood besties, dead son… well, game over.  Laura was officially a wreck but the fucker story definitely made her laugh and I think she had an even better time, calling me fucker throughout the marathon.  So did the spectators on the street.  The entire marathon I heard, “GO FUCKER, GO!!!” or “F U CANCER” or “GO RONAN!” as that is what we had on on the back of our shirts.  I got asked who you were and I always said, “My son.” I didn’t say, “My son who died of cancer,” because to me that is not who you are and I won’t let that define you.  I was doing pretty well in the marathon until about mile 17 and that was pretty much it.  I hit that invisible wall that you hear people in the marathon world, talk about.  I started walking, grabbed a gatorade that a lady was handing out on the side of the wall and chugged that thing like it was the last drink I was ever going to have.  I waited for my friend, Katie to catch up to me where we walked/jogged/begged for the finish line.  Bri met back up with me at mile 21 and somehow, we crossed the marathon line together, holding hands.  I’ve never been more proud of my sissy in my life.  She is such a little badass in training and I am so honored to be showing her the ropes.

I wanted to also take a second on here to thank all of you who supported me in the marathon by donating, volunteering, cheering or running yourselves.  It wasn’t just Ronan I thought about while doing this, but you all as well.  You kept me going when all I wanted to do was take the short cut, call it a day, and run back to my house.  I love you all so much for never giving up on me and for pushing me to do really hard things, just so I can remind myself that I am capable of overcoming all of the odds even on the days were I still do just want to crumble up and die.  You remind me to get back up and fight harder than I ever have before.  So thank you, from the bottom of my heart for keeping me going as I try my hardest to change this for these other kids who deserve so much better than what they are getting tossed their way.

Oh, back to today and how it was a really, really, really fucking hard day.  So hard, that I am too tired to write about it now, Ro baby.  It was just one of those days where I really felt like I had the wind knocked out of me because I just miss you so very much.  I have to get back to this book writing now.  I’ll try to check in with you in a few days.

I miss you.  I love you.  I hope you are safe.  Sweet dreams, baby boy.

xoxo

Your song for the night. Sorry it’s been so long since I’ve done one, Ro baby.

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Obsessed with this song.  It may make me bawl like a baby, but it is so beautiful. Plus, Poppy loves it.

http://www.youtube.com/watch?v=-2U0Ivkn2Ds

Thank you all for your amazing hearts and spicy souls.

 

 

 

 

 

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Because of you all, the Spicy Monkey Spirit Hood was the company’s largest launch that they have ever had. Thank you all so much for buying them and making this venture so successful. Please continue to share this video with anyone and everyone. The more people who see it, the better. I love you all so much.

xx

 

 

http://vimeo.com/78844347

Nobody puts Ronan in a corner

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We are seriously taking over for the month of September, which is childhood cancer awareness month. I am going to post an update of events soon, but for now you must check this out.

It is seriously awesome. I freaking love me some Patrick Swayze. Thank you, FilmBar Phoenix for being so rad and choosing our foundation to support.

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I happen to like 3 a.m.

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Ronan. If I don’t write to you tonight, my head might explode. Today was one of those days where I cannot fall asleep because my head is spinning. There is so much going on here, that I can’t even see straight. What have I been doing? Running around like a chicken with its head cut off. September is right around the corner and we have so much going on and coming up that I don’t even know where to start, so I’m going to start somewhere completely random. Your brothers started school last week. Did I already tell you that in an earlier post? I cannot remember. They started the 4th grade. I can’t even believe that as the time has gone by so fast with those two. Of course, on their first day of school, I dropped them off and sat and watched them as they walked into school together, from my car. My heart broke into thousands of pieces not getting you to watch you walk into school with them. Would have it been kindergarten or first grade for you? Not sure, because of your almost summer birthday. If you would have survived cancer, I’ll bet we would have waited to start you in kindergarten until this year, so you would have been on the older side. I never thought I would be begging for the side effects of treatment from you cancer, but I would have given anything for those problems instead of having you just dead.

Just as I was sitting there, watching your brothers, I saw an old mom friend of mine, walking her little boy into school. An old ghost mommy friend as I like to call them, because at one time they existed, or did they? Sometimes I think they may have been just a figment of my imagination.

Crap. I know that lady, I thought to myself as I watched her walk her new kindergartener into the school. But I can’t place how I know her. Did I know her from my time with Liam and Quinn when they were at their preschool or did I know her from when you were there? Was she a Liam and Quinn kind of mommy friend or and Ronan kind of mommy friend? A ghostly past of my preschool mommy friends who went away after you got sick and died and who never looked back, or did I only know her during my blissfully happy days when I lived in happy land and childhood cancer did not exist. I run into those ghosts of my mommy past sometimes. Some days, I run screaming the other way. Some days, I smile and pretend like everything is o.k. or like my feelings are not hurt at all for the friendships I thought I had, but it turns out it was not as true as I had once thought in my mind. At the end of the day, I’m o.k. with it all though. The Fernanda’s, Stacy’s, Macy’s, and Mandy’s make everything more than o.k. in that department and I know, the one’s that stuck and fought for me and you… well, I am SO beyond lucky to have them as they rock my world every fucking day.

This week has been the kind of week where I am saying yes to everything that is thrown my way. Yes to the Gold Weekend in September.  Yes to the Spirithoods founder wanting to come out here to meet us and film a documentary next week.  Yes to helping Jim Fry drum up some press for his crazy kick ass bike ride through the Pyrenees. Yes to the interview where I will be featured once again in the Phoenix Magazines Movers and Shakers of the Valley. Yes to Liam and Quinn I am super mommy and can take on the world while helping you with your massive amounts of homework and whatever else you need. Yes to everything Poppy, of course. Yes to running on my very bummed out hurt knee that I obviously did something to over the summer, but I am choosing to ignore it because as I told Woody tonight, “If Ronan can go through cancer treatments, I can run on a fucking hurt knee.” Yes to everything while still making time to write this book which leaves me with little time to sleep or eat for that matter.

I can’t sleep and the whole eating thing is just getting in the way of what I am doing, so I’ve decided to take a break from that as well. I work best on fumes, anyway. Will I crack, will I break, will I have a massive super meltdown? I really hope not until after at least September. I’ve got too much to do as of now.

I’m also a little sad this week due to more than just your death. Remember that crazy ass stalker, Mandy Bee who swooped into my life like a Tasmanian devil? Who never claimed to be anything but a crazy stalker who just wanted to be my friend and who did things like drop off candy and leg warmers at my front door until I could not longer say no to becoming friends with her? What can I say, she learned my weaknesses early on. I mean candy AND leg warmers? I didn’t stand a chance. So, I let her into my life sometimes just a little and sometimes a lot. Sometimes I felt overwhelmed with amount of love she wanted to shower me with, so I would pull back a little. I often didn’t feel like I was worthy of the love she was wanting to give me.  Well, that crazy ass bitch moved right down the street and right when I was starting to become just as obsessed with her, as she is with me, she pulled the rug out from underneath me and is moving back to Canada. WTH, Ronan? That is not being a very good stalker, if you ask me. Mandy has become my side kick, my partner in crime and I’ve gotten really used to having her around. I am kind of heartbroken. I was texting about Mandy moving back to Canada with Stacy the other night. She said to me, “You know, all Mandy every wanted from you was your friendship. Nothing else.” I know this. It was never a friendship built on, I’ll scratch your back if you scratch mine. It was always, I’m going to scratch your back, even if you don’t let me, I’m going to do it anyway, while jumping out of a plane and skydiving with you. Mandy never had alternative motive. The day I met her, she announced she was fucking crazy and never pretended to be anything but that. I’ve gotten quite used to that crazy and I love it. So yeah, I’m a little more than sad about it but once you are sisters in this world, you are sister for life. I know she won’t ever be too far away and she will be back her often, which will help to soften the blow just a little. I’m still super sad about it though and I really think the whole situation, sucks balls.

Poppy, Poppy, Poppy. Somebody today asked me if we had started up “Mommy and Baby” classes yet. I looked dumbfounded and said, “Uhhhh, no. Unless you count taking her to every single foundation meeting with me as mommy and baby time.” Crap. Aren’t I supposed to be starting music classes with her or something like that to get her “socialized?” I’m sure that’s what I was up to when I had you, Liam and Quinn at this age. Maybe 4 months is a little early, but I’m sure I was doing it at around 6 months. Whatever. We do take music classes every day and they are called Taylor Swift is rad. We sing and dance to her songs and Poppy likes it best when I lull her to sleep with them. Those classes with just the two of us are better than anything I could ever pay for.

Alright, little man. This is all for tonight. I’ve got to try to turn my brain off. I miss you. I love you. I hope you are safe. G’nite, baby boy.

xoxo

26 months without you

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Ronan. Today being 26 months without you, made me want to hide in my bed all day long. Your baby sister woke me up this morning at exactly 3:23 a.m., just minutes before you died, to eat. How does she already know everything at just 12 weeks old? How did she know at that moment, I needed a reminder that even though you are gone, you are still with us at all times? She is already so wise beyond her years.

I wanted to hide in bed all day and do nothing but sleep, sleep, sleep. I didn’t. I played with your brothers, instead. I went for a hike with your Papa Jim, your brothers, Poppy and Jady girl. I decorated some trees with your bracelets like I always do when I am hiking or out and about at places I know you would love to be with us.

I’m sorry I haven’t been writing to you on this blog. It makes me so sad that I have so much going on, that it seems to take away time from my quiet time, writing to you. Days are filled with me making sure your brothers are enjoying their summer as much as possible and bonding with your Poppy sister by making her smile and laugh as much as I can. The quiet time I have to myself which is really late at night after everyone is asleep has been spent working on this book. I have been having a war inside my head with myself about it. I swear I am my own worst enemy. I’m constantly doing the second guessing, the what if it’s not good enough, what if I don’t make him proud. A wise little editors words haunt my  head… “Remember, besides having kids, this is going to be the most permanent thing you do in life.” No pressure at all. The hardest part has been figuring out where to start, but I did it. It’s kind of like jumping off of a cliff. Sometimes you just have to close your eyes, follow your heart and take a huge leap of faith. I seem to be finding my words easily and so far, I have not had to go back to reference my blog at all. I’m sure there will come a point when I have to do that, but for now I seem to be doing just fine without having to reread my painful words. I know the inspiration I am finding all comes from you, so thank you once again, little man.

I’m going to keep this short and sweet tonight as I need to get some writing done for a few hours before my eyes fall too heavy to see the computer screen. I hate 26 months without you. I’m so sorry. I miss you so much that it makes me sick. I am doing my best even though I still have days where I just want to close my eyes and go to sleep for a very long time. I can’t do that to you though. We have too many things to get done here.

I miss you. I love you. I hope you are safe. Sweet dreams, baby doll.

xoxo

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I was never going to be ready for today.

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Ronan. I was not prepared for today. I was not ready for today. But today happened anyway. It started off pretty normal. A normal check up at Dr. Schwartz’s office. I didn’t even have to see her, I just had to sit in a chair for a good 45 minutes so Poppy’s heartbeat and movements could be monitored. Just routine stuff that I’m having to do, twice a week now. It’s always quiet in this room and it’s easy for me to relax and get lost in my thoughts. Today, I thought alright. Of course about you. I was sitting there listening to your sister’s heart beat and she seemed to be moving non stop the entire time. I know she doesn’t have much room and there, but she doesn’t seem to care. Her movements are strong and never seem to stop. I had a flashback to that time I was at Sloan with you. We were back in a room and they had you hooked up to a machine  where we had to listen and track your heart for a couple of hours. I remember being up on the bed with you, holding you and trying to keep you entertained. You soon fell asleep in my arms. The next thing I knew, I was laying there with you but I was silently crying. I remember I was so overcome with emotion over sitting there listening to your little heartbeat. It was the most beautiful sound I had ever heard and I knew how lucky I was that it was still beating. We didn’t know at this time that your cancer was spreading, but I was just so grateful for your little beating heart. I hated that you were strapped up to a monitor when you should have been just out and about playing like a normal, healthy 3-year-old but I found the beauty in our day, anyway. I’ll never forget that day with you. It sticks out in my mind all the time. Today, listening to your Poppy sister I was taken right back to that day and the tears seemed endless.

I got out of my doctor’s appointment after a couple of hours. They were way behind today and I came home for a sight that I was not ready for. Your daddy and I have talked for a couple of weeks about taking the furniture out of your room to have it refinished to the color that will match Poppy’s crib. I came home to your daddy who had informed me that the people refinishing your things, would be at our house to pick everything up in a few hours. This meant drawers had to be emptied, toys dumped out, clothes moved, stuffed animals pulled out from the storage area under you bed, etc…Your daddy asked if I could empty out your dresser. I started crying and simply just told him, “No.” He did it. He did most of it. By the time the people got to our house your little room had been completely torn apart and I could do nothing but sit on the couch and cry. The lady working with us could not have been sweeter as your daddy had explained our situation to her on the phone so she understood what was going on. She told me how she had some bad luck, too as she lost one of her sons at 17 and also one as an infant. I could hardly get two words out as I was trying my hardest to somewhat control my sobbing. Your daddy was the one who told her he was sorry and did the rest of the talking as I just sat there in a cry fest trance. Your little room that I’m pretty sure I had made up in my mind, would never be touched, has totally been taken apart. I know we are going to put your things back but it still does not make any of this easier.

I sat in your room for a long time today. On one of your mattresses. I sat on the phone and cried to the couple of people I talked to. Thanks, Meg and Stace. I told them both how I was staring at your side of the empty room where your bed once was but now the only thing left there were a few of your Star Wars guys that had clearly fallen off of your bed because you would always insist of sleeping with 50 of them. I texted with Fernanda a bit. She is going to come over tomorrow to help me figure out how we are going to put your room back together while making it Poppy friendly, too. I am lucky to have such good friends who are truly there for me at all times. I am so lucky in that regard and so thankful.

The past couple of days, my emotions have been building up. It was your Sparky’s birthday. I remember his birthday from a couple of years ago when we were in New York. You made me take an extra special picture of you to send to him just for his day. It’s one of my favorite pictures of you, even though your body was all marked up with a Sharpie Pen from your radiation and your little arm was hurting so badly that they tried to make you wear it in a sling which you of course refused to do. The smile on your face was priceless and your eyes were so bright and beautiful as I was taking this picture. They were shining like diamonds. You were so excited to take this picture and send it to him. We called to tell him, “Happy Birthday!!” and I remember you saying this in your squeaky little voice that was full of so much love and happiness. As always, I did my best to try not to be sad on his birthday but I wished more than anything that it was you sitting by my side as I watched your Sparkly open up our gift and two cards. One card from me and one from the both of us. I of course signed your name on the card I picked out from you, to him. You would have liked it and called the card, “cute.” I sat and watched your Sparkly read our words and open our gift. I watched as he chuckled at something while the corners of his eyes got wet. It’s a sight I’m so used to seeing with him. That bittersweet happiness that I know all too well.  I did my best on his day, for you but it was still hard to hold it together without you by my side. I know your Poppy sister will help with things like this when she makes her little entrance into the world. Maybe days like this will become easier and help with the sadness because the happiness I know she is going to make others feel is going to be infectious. Next year it will be nice to have her by my side on days like your Sparkly’s birthday.

I spent much of the day and evening crying. Today was a hard day to get through. I literally went to bed telling myself, “You made it through today and you didn’t die. The pain didn’t kill you.” I’m always so amazed that it doesn’t. The sick joke is I know what I’m waking up to tomorrow and how none of this ever goes away. I don’t get to escape this. I still have to wake up to your totally disassembled bedroom that I said I would never touch. I was never going to be ready for today. You can never be ready for something like this.

I’m tired but restless. Of course, I’m not sleeping well. It’s because of my not sleeping well at night that I’ve noticed that we have this fucking bird outside of our bedroom that seriously sings all day and all night long. I don’t understand this as it’s only something that has started a couple of months ago. What kind of bird, sings all night long? It’s annoying to me and I don’t feel like hearing it’s song. Tweety bird, tweety bird please shut up. Between that and your empty room I’m surprised I’m not outside stalking this bird with my BB gun. That is totally a very Maya Danger thing that would have happened last year when I was in my Danger Baby phase. I’ve been stalking this bird to try to find out where it is hiding but I’ve only been stalking from it from the inside of our house. My body is too tired to truly investigate. Stupid bird.

Time to go, little man. It’s late and I need to try to get a little sleep before I have to start today all over again, tomorrow.

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

xoxo

P.S. Thank you, Taylor for what you did tonight. You are such a light that keeps me going even on my hardest of days. I know Ronan is so proud of you for all you are doing. So am I. I love you.

 

Your Happy Birthday Sparkly smile. I love you.
Your Happy Birthday Sparkly smile. I love you.

You know what is so totally awesome about cancer? Fucking nothing.

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Ronan. Today, I was sitting at my kitchen table pounding out emails, mailing bracelets to people, and missing you. A new email came in and it was an update from your old roommate at Sloan-Kettering, Phoebe. I still check in on her every once in a while. I still try to see her mom whenever I am in the city. We became pretty close after rooming together at Sloan and I know her mom and I both feel that the two of you had this unspeakable bond. I have been keeping up on how well she is doing and watching her get back to her life before she had to deal with that asshole named cancer. I have loved seeing her gorgeous hair come back in and felt really peaceful about the place she is in after she was declared NED from Osteosarcoma; which she developed at the age of 11. Phoebe endured so much, as do all kids who go through this, but her fighting spirit has never wavered. Her smile never seemed to dull. She is stronger than most adults but of course that came with a very heavy price. She shouldn’t have to be stronger than most adults. She should just be a normal girl, living a normal tween life. Unfortunately, that’s not how things have turned out for Phoebe, but you will never hear her complain of a thing. She has handled everything like a champ: much like the way you did.

I think we bonded with Phoebe and her mom for the first time over a bloody nose that wouldn’t stop. I knew that situation all too well. Being roommates in such close quarters, you hear everything. I think I tried to step in and help. Macy was with us. I think Tricia was, too. We will never forget it. Phoebe was scared. Her mom was scared. I did my best to help out because I had been in that situation 50 times before. I was an old fucking pro at the horrific bloody noses that you cannot control. After that bloody nose incident, we became friends forever. You died, Ronan. Phoebe lived. Her mom and I have remained close and her entire family has a special place in their hearts for you. Ellen, Phoebe’s mom, is always reminding me of how much they think of you. I so appreciate that.

I read the headline of Phoebe’s caring bridge journal today. It said, “Bad, Mad, and Sad News.” My stomach dropped. My eyes filled with tears. I knew what that meant, before I even started reading what was going on. Phoebe, after beating Osteosarcoma has developed a secondary cancer. This time, it’s AML- Acute Myeloid Leukemia. I immediately sent Ellen a text that said, “I just read your blog. You have got to be fucking kidding me.” She responded almost instantly and we went back and forth. I told her I would do whatever I could, which normally might mean hopping on a flight to go and help. I cannot do that now so I offered up the next best thing to Ellen and Phoebe which is my little Rachel who lives in NYC. I told them if they were o.k. with it, Rach would be happy to come by to keep Phoebe company, bring them treats, or whatever else they might need. They were very open to it so I called up Rachel who was more than happy to help out because she is not your normal 22-year-old. Rachel is an old soul who has such a passion for helping others that it makes me embarrassed at my 22-year-old self. She is the definition of selfless at such a young age which I admire so much. I asked Ellen if it would be alright if I posted Phoebe’s caringbride website because I know Phoebe tends to be a little more private. Ellen gave me the green light. I just wanted to offer them any and all the love and support that I have. They are a wonderful family and I am so devastated that Phoebe is going to have to go through more of this bullshit which was more than likely caused by the treatment she had when she was dealing with Osteosarcoma. I mean it’s bad enough that kids get cancer, but then to develop secondary cancers due to the treatment that supposedly saved them. That is just beyond acceptable.

I am asking you all to show Phoebe a little love. Stop by, leave her a comment, keep her in your thoughts, prayers or whatever works for you. She has a special place in our hearts here at the Thompson household and we will do whatever we can to help Phoebe through this time. Even if it means just making her mom laugh by my, “You have got to be fucking kidding me,” text. So glad to hear I was able to put a little smile on her face today. I am so glad I have my little Rachel in the city to help out, too. Thanks, Rach. I love you so.

Ronan. Ellen asked me to tell you to keep a special eye on Phoebe. I know you will. I love you my spicy little monkey. I promise to fix this. I promise this childhood cancer world will some day be better. It shouldn’t fucking be like this. This is my last little rant for the night but wouldn’t the world be a much better place if people like Honey Fucking Boo Boo were NOT on CNN? I about shot my TV the other day seeing this. Wouldn’t the world be a better place if people like Dr. Sholler or Dr. Jo were getting the kind of attention they deserve because they are actually doing really amazing work. I don’t understand how these doctors are ignored. How this HUGE problem is ignored. How these kids are just ignored. I guess because it’s easier to live a mediocre life where every day seems to be taken for granted and everybody seems to care about the wrong things. I can’t live in a world like that. I won’t live in a world like that. I’m going to create a new fucking world where shit like Honey Boo Boo or The Real Housewives of Asshole America, do not exist. Because people like Ronan and Phoebe deserve better.

Bye, Ronan. I miss you. I love you. I hope you are safe.

Here is Phoebe’s caring bridge below. Thanks all you lovely souls for stopping in to give her some RoLove. I love you.

xoxo

http://www.caringbridge.org/visit/phoebe26