Tag: Dr. Brian Kushner

Dear 11 Fucking Months. I think I hate you.

Ronan. This solitude thing… it’s alright. It’s necessary. I’m doing it as much as possible. As much as I can for still being among the living, while really being dead. That’s what I feel like lately. It’s o.k. It’s part of this process for me. For as much as I’m checking out, I am still checking in when I can with the people who love me the most. With the people who I love the most too. I’ve been spending most of the days, solo. Hiking for many hours. Trying to be mindful of the way I’m feeling and not trying to distract with busy, busy things. There is a time for that. It’s not now. Right now, it’s time to check in with myself and that’s about it. Right now is not the time for the business that usually consumes me. Thinking about the past few days I know a lot of things have gone on. I woke up this morning to an empty house due to your brothers staying the night at your Mimi and Papa’s. They were going to be gone all day long which I knew was more than I could handle… you know, the whole being home alone until the evening. I woke up and thought, “Fuck. This is not going to be a good day, if you are home until 5 or 6 tonight, in this quiet, empty house. I threw some things in a bag and headed out the door. I sent Dr. Jo a text that simply said, “Coming up there for the day to go hiking.” Up there being Sedona. Why not? It sounded like the perfect thing to do instead of a sad/lonely day at home. She told me to just come to her house when I got up there and we would go hiking, together. Even better.

I arrived around 11 to the one place that now feels like one of the safest places in the world to me. A place that fills me with solace and gratitude. The comfort of Dr. JoRo’s house and that beautiful place of Sedona that she lives. I am no fool. Without her I am quite sure I would not still be here. I’m not too proud to admit that she has pretty much saved my life. In a weird way I feel like she’s been waiting for me for a long time. Or rather, we’ve been waiting for each other. I’m quite sure we were supposed to meet in this life. Just fucking sucks it had to be this way. I’m just thankful I found her when I did because if I did not, I am sure I would be in a mental ward, doped up on 20 different drugs, because don’t you know, a pill makes everything better/go away. Fucking emotionally irresponsible bullshit that medication thing is. More on that later…

Dr. JoRo grabbed her expert friend/neighbor in all things Sedona/nature/trails to take us on a little adventure. It was a good 2 hour hike where we talked but in a quiet/respectful way. It as nice as nice can possibly feel. Much better than being at home, lifeless, in bed where everything hurts so much that I think the pain alone is actually going to kill me. We returned to her house where I gave her one last hug before she leaves for her trip to NYC. So wish I were going with her. Missing our favorite big city so much. After I left Jo’s I decided I was not ready to go home yet. I drove through Sedona to go on my own hike, with my non existent map. I found myself hiking through the trees, fighting with a lot of sticker bushes/ branches, and scaling the side of some huge rock to perch myself up on a cliff where I settled into a couple of hours of reading/writing/sitting with your blanket while the hot sun poured down on my shoulders. My own therapy for the day, I guess. I left Sedona and drove way too fast with the music blaring way too loud during the entire drive back to Phoenix. I let myself get lost in the world of Pearl Jam for a while which always makes me drive faster/miss you so much more.

I came home and your brothers were still gone. I jumped in the shower and decided I would meet Rita for a dangerous night out. We went to see “The Hunger Games.” This was totally dangerous for 3 reasons. 1) I never go to movies anymore. I have a hard time sitting still. 2) We went to some totally sketchy theatre (o.k. so not really… just downtown phoenix) 3) We went to “The Hunger Games.” A movie about kids killing kids. Or kids dying. Or if you have a dead kid, you should maybe not watch this movie. I didn’t really think about this, going into it. I didn’t really think about it until there was a scene where a little girl dies and they do such a good job making you feel it that I actually felt like I was the girl in the movie, kissing your lips for one last time and crying out like a mother who just lost her child. Feeling like the mother that I am who watched you die. I know what happens. I actually know what it really feels like in real fucking life and not just by watching it on a movie screen. Rita grabbed my hand and asked if I was o.k. I nodded yes as the hot tears slid down my cheeks. She held my hand until the scene was over and then asked if I wanted to leave. I told her no, that I was alright. I lied, but I really wanted to see the ending. It was a pretty good/entertaining in a Lord of the Flies kind of way, movie. One that I’m sure I would have loved before losing you because the reality of it would have never touched me, right? Yeah right. So we all walk through life, thinking. So thankful I don’t have that problem anymore, Ro. So thankful that I get to have you dead so I no longer know that I or anyone around me is immune to death. I fucking knew that before you. I talk to Jo a lot about how I always had a feeling that you were not going to be mine, forever. How I was never worried about you learning how to count to 100, how I never pushed education stuff on you the way I did with your brothers. I tell her I was always so happy and thankful for the exact moments we lived in. Not the next day moments. Not even the future. Just the present. Just when you were mine and I was yours in that exact second of the day. It made for the best/funnest life in the world. It made for the happiest life I’ve ever felt by just being with you. JUST BEING. There were no expectations. Everything was so pure and organic and real. It was just us and we really did whatever you wanted. You wanted to wash your trucks outside, naked, in the mud? Done. You wanted to rub your little dirty muddy hands all over our windows? Done. You wanted to spray our sliding glass doors with the hose? Totally! You wanted to color on them too? Alright! You want to stab our leather couch with a pen and make big holes in it, big deal, Ro. You were leaning/exploring/pushing boundaries the way you should have been. I was never going be the one to contain you creative mind. A mind that always seemed so much wiser than even mine. You knew what you were here to do. I truly believe that. I know you are still here, baby doll. It’s just the physical part of you that I miss so much.

Ronan. Holy shitballs I think I hate Easter. Actually, I don’t think I hate Easter, I know I hate Easter. Easter without you this year, sucked balls. And not in a good way. We didn’t celebrate Easter at all this year. We celebrated Feaster instead and it was awesome, for being not awesome. We spent the weekend hanging around the house. I cooked a Brisket and and taught your brothers about all things Passover. You cannot have a proper Feaster, without a little religion. So, we talked a lot about Passover and what it means. We went to our own church on Sunday which was in Sedona, at Oak Creek Canyon. We spent Sunday hiking, getting dirty, playing in the water and your daddy even jumped off the side of a cliff. We spent Sunday doing all things that you would have loved. I tried to have the best day possible by getting lost in the world of your brothers who seemed to have a wonderful time. I’m not going to lie. It was an exhausting day, for being as relaxing and peaceful as it was. There was not a better way for us to spend the day, but it was still brutal to spend our first/last holiday with you, without you. I was glad when the day was over and I was able to lay down and fall into my Ambien induced coma. I didn’t have a choice. Sometimes I just have all I can take during the day and fighting with my sleep last night would have thrown me over the edge. I fell into a black oblivion instead.

So, today is 11 months of fuckery. I spent it alone, on a mountain and at the car wash. I found myself at the car wash today and looking back now, as I sit here writing tonight, I can actually laugh at myself and the shit that happens to me on a daily freaking basis. Case in point, victim one today, Danny’s car wash dude.

-Danny’s car wash dude- “How was your Easter, Miss?

Me- “Shitty.”

DCWD- “Really? Why?”

Me- “Because I have a dead kid. Because my son is dead.” -insert flow of snot/tears here/dripping everywhere

DCWD- uncomfortable silence, “Ummm… what? Really? Well, um…. o.k. Well, are you o.k.? Like for real? Because you don’t seem o.k.

Me- “Oh my gosh. Um, yeah, totally o.k., I’ll really be fine.”

DCWD- “O.k… do you want your floor mats washed?”

Me- “Yeah, please. Thank you so much.”

You know what else happened? For the first time today, when some other dude at Danny’s Car Wash asked me how many kids I had, I said 2! I about threw up. I went to correct my mistake, but I couldn’t get the words out of my mouth and I did not feel like explaining myself because I knew I would end up in hysteria. So, I freaked out in my head instead and just walked away, in a daze. That’s when I was approached by the other guy and that’s when the “I had a shitty Easter and I have a dead kid,” came flying out of my mouth. I am surprised I was able to drive my car after that whole incident today. I came home, threw myself in our bed, and sobbed. Then I put on my clothes and went inferno hiking in the hot, hot heat of the day. After my inferno hike, I came home, showered and picked up your brothers from school. I took them for a snack and off to the batting cages where we practiced baseball and all things fun. I didn’t know trying to have fun, would be so freaking hard Ronan. I just want to bury my head in the sand. But I continue to keep trying, for the sake of them and nothing else. Because those little boys’ deserve to have a mom who has not checked out, for as much as I want to, I just can’t. We came home and I was so tired. I helped them with their homework and after having all I could take, I found myself in my freaking bed, once again. Crying. This time, Quinn found me. He cuddled up next to me, and asked me what was wrong. I told him I just missed you. He sat with me as I cried for a few minutes (no mom guilt here at all) and I then made myself get up. We spent the rest of the evening at Uncle Jay’s house (lifesaver) swimming, eating pizza, and watching the Suns game. Thank GOD for that Uncle Jay of yours. Your daddy joined us and this shitty 11 month day is coming to an end.

I’m tired of being tired. I’m tired of being sad. I’m tired of all of this shit in this fucking crazy world. It truly is insane, Ronan. I cannot watch the news/read the paper because of all the things that I just cannot believe are going on. Some lady flushed her baby down a toilet. Facebook just bought Instagram for a Billion dollars. Everyone and their mothers are getting their own “reality” shows. Nothing out there, makes sense to me. It all makes me angry. None of it matters. It’s all “stuff,” getting in the way of real reality like kids dying and parents struggling to stay alive and survive. And wait… why are all these kids with cancer still dying and still being over looked? Shouldn’t this problem be getting a little better? See what happens, when I take a break? A whole lot of nothing gets done. I did hear that Mattel is going to make the bald Barbie though. I have not read the details, due to being unplugged from everything but I hope it is true.

Dr. JoRo is in NYC now. She asked for a little list of some things she could for me, during her one day off. These are the things I told her to do.

1) Run in Central Park at night. Thinking she probably will not do this.

2) Visit Sloan Kettering and kick Dr. Kushner in the balls for me. (she could totally dress up like a Ninja and do this)

3) Eat Fro Yo at 40 Carrots inside Bloomingdales. (this might be a little safer and was one of our favs)

4) Eat Pizza at Delizia’s for us. (another one of our favs)

I miss her so much already. She is not a very big fan of our favorite little city. I am doing my best to make her into a New Yorker, without being there to actually do it. Next time:)

Alright baby boy. This is all for tonight. Yes, I’m still in hiding and I have still been hiking every single day for our month of mother fucking madness. And today, I was EXTRA dangerous and did not wear sunscreen. My inner rebel was loving it. I love you. I miss you. I’m so sorry. I hope you are safe.

xoxo

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A high speed train to nowhere that leads everywhere

Ronan. Substance and Passion. Those are the two words that will not shut up in my head. Those are the two words that I have found on this trip. I think if you have those two words behind everything you do in life, you can do anything. I have done a lot of “things,” since I’ve been here. So much that I feel like I have been here for weeks not merely 4 days. I don’t even remember when I wrote to you last. I think it was on the train to D.C. I have been pretty unplugged here. No computer. No T.V. and guess what the best part is? No screaming voices in my head. They have totally disappeared. Do you know whose voice I’ve heard in my head since I’ve been here? Yours and only yours. I have found so much strength on this trip and I am really hoping it is just not due to being in New York City…. the city that I always feel the strongest in. Or if it is, I really hope I can carry this strength all the way back to Arizona with me and keep it around more often than it has been.

I don’t even know where to start with the Washington D.C. thing. How do you put into words a day and night were you literally feel yourself coming back to life, after being dead? I haven’t the slightest clue but I’ll try find the words to try to do it justice. I got invited to D.C. by my real life, fairy RoMother. I have decided to change the word “GodMother,” to “RoMother,” because I have issues with that asshole and all he stands for. And RoMother is just so much more fitting for this person. Because it is all things kind, pure, and beautiful just like you. It’s been a long time coming, meeting this RoMother of mine. She has quietly been behind the scenes, making big things happen in your name. She asked me a few weeks ago if I wanted to come to Washington D.C. with her and her husband to attend Annie Leibovtiz’s latest show, Pilgrimage, which is being featured at The Smithsonian. I think her words started with, “If your up for a little adventure…….” All I needed was to hear was the word adventure, and I was sold. It turns out this little adventure had to do with one of her lovies, Annie or Al as she calls her. I, of course jumped at the chance as it not only meant getting to meet this beautiful Rosoul of ours, but spending some much overdue time with her as well. Oh, and not to mention the fact that one of the greatest icons in the world was thrown into the mix. And you know my secret obsession with photography. I have been documenting things in this so called life since before I hit puberty. I told K I would be honored to come to the show with her and she told me that Annie was touched that I was coming. Um what? Annie’s touched? Is the world ending? Are pigs flying? No. None of those things are happening but you died so I have no choice but to embrace these gifts that you are throwing my way. You are working so hard babydoll. I just hope I can keep up.
I told K I would meet her on the train. She said, “Cool! It will be something like out of a Hitchcock movie!” I cracked up at this. She is so freaking RAD. I got on the train to Washington D.C. Our little fairy RoMother found me on board. I got to give her the hug I had been saving for her, for so long. I was already settled in my seat next to some stranger when she found me. Katherine and her hubby went into a different car to meet up with one of their good friends who was along for the trip as well. A few minutes later, K appeared and hijacked me into moving seats, to come up and sit with them. She introduced me to her friend and we settled into an easy conversation as we sailed through the world on a high-speed train, to our unknown destination, we joked. The scene outside looked like something from the movie, “Twilight.” It was dark, dreary, foggy, and cold. So mysterious. So Hitchcock. In other words, my heaven. I watched the trees fly by. I held your GiGi on my lap and buried my face in it a lot. I saw a Billboard sign that read, “Jesus Saves.” I thought to myself, “That is so fucking offensive. Jesus didn’t save my son. Jesus isn’t saving all of these other beautiful souls.” I got mad and told Jesus to shove it up his ass. I wish I would have had a machine gun strapped to my body so I could have blown 1000 fucking holes in that sign. I didn’t so I scribbled in my journal about it instead.
We arrived in D.C. and were whisked off to the hotel. We got checked in and we all decided to tool around the city for a few hours before Annie’s show. I spent the next few hours smiling like I have not smiled in a very long time. Here I was, with these 3 strangers who did not feel like strangers at all as I was so comfortable. Katherine’s husband, Mark gave me a personal tour of every single monument we set eyes on. And it was so much more than anything you could ever learn while sitting in a history class for school. It was more like a history class for life as I listened to this man share with me his knowledge of things that came from so much more than a book. We grabbed a quick bite to eat and before we knew it, it was time to get back to the hotel so we could get ready for Annie’s show. We all took about an hour to rest/shower/change/dress and head out the door. I wore my black jeans, a red jacket with a black skull shirt underneath it that Dr. JoRo gave me. I of course, had to represent the grief look that I carry around with me 24/7. Dr. JoRo’s skull shirt was the perfect item of clothing to do this. And of course the gold locket with your ashes in it that I always wear around my neck. I wouldn’t leave home, without you. Ever.
We arrived at The Smithsonian for Annie’s private show. I was not sure what to expect except for I knew I was in very good hands so it would be nothing short of amazing. I let K lead me around and she introduced me to every single person we came into contact with as her friend, Maya. Everyone knew her and I watched the ways their eyes lit up in her presence and how happy every single person was to see her. What an amazing soul. Not many people can elude a light around them the way K does. It’s so bright and warm that everyone just soaks it up. She is the kind of person that makes you want to be better person because everything she does is fueled with passion and kindness. And a little kick ass badassness as well. My kind of girl for sure:) We went up to see Annie’s show. To say that it was genius does not even begin to describe it. The beauty of her pictures was so powerful that it left me spending much of the night, wiping tears from my eyes. It was so electic and different from anything she has ever done before. Her latest show focuses more on the beauty of America. She featured the lives of so many influential people who even though they are gone, continue to live on due to the mark they made in the world while they were here. I spent the night getting lost in the world of Emily Dickinson, Ralph Waldo Emerson, and my favorite piece of the night… Annie Oakley’s heart target. Oh, how that piece spoke to me. The story behind it, is incredible too.You could see that Annie poured her heart and her soul into this project. Her beautiful work, speaks for itself. I had heard that she took this on due to going through some hard times. I hope it helped to heal her heart a little. Just the little time I spent looking at her work, it helped to heal mine. I cannot imagine being the one on the other side of the camera, who took those pictures and made them into art. It must have been so cathartic. At least I hope it was. Otherwise, what else is the point? A woman who spends so much time, bringing happiness to others, through her work, deserves happiness as well. So much happiness.We spent a couple of hours at the event and then Katherine took me and introduced me to Annie. When I first saw her, I thought to myself, she is so beautiful. She looked so happy and proud of her work. A true artist who is so well known that she is a household name. But at the end of the day, she’s just a mom like me. If I would have ever been starstruck at anyone in my life, it would have been her. But that’s not the way I felt when I met her. What really registered with me is that she is a mom who has unconditional love for her daughters the way I love you and your brothers. She is a mom who has had a very successful life due to working hard, fighting for what she believes in and following her heart. Those are the things I admire most about her. Those things can take you to a whole new level while living on this earth. Katherine introduced me to Annie who embraced me for a big hug. I got choked up, told her it was an honor to meet her, and thanked her for such an amazing show. The next thing I knew we were all aboard Annie’s private bus to take us back to the hotel where we were staying. Annie came on the bus and everyone broke out cheering, clapping, and screaming for her. I had a moment when I thought to myself, “HOLY SHIT! I’m on a party bus with Annie Leibovitz!” But then I remembered the price I had paid for this seat which is ultimately your death. We both know I would not be doing things like this if it were not for you. I’m just sorry you had to die in order for beautiful things like this to happen in my life. But it is because you were so beautiful, that these things are happening. Because so many people in this world know things have to change and they are going to help us do this. I am truly thankful for that. So thankful and humbled, Ronan. The Annie party bus thing sent me into a fit of giggles and I thanked you for all the little things that you are doing. As soon as we got off the bus, I was walking into the hotel with Annie right next to me. I just looked at her and said, ” As a mom whose heart is broken into a million pieces, I just want to thank you for giving me a break from that tonight by letting me get lost in your work and your world.” She looked at me and said how sorry she was and that she could not imagine going through something like this. I said I knew. Nobody can.

Everyone filled up the hotel bar where I sucked down waters and mingled with the kindest people. We ate a little food, talked about Annie’s show, and talked about you a lot too. We talked a lot about childhood cancer and how wrong it is that nobody wants to pay attention. This is not going to be the case much longer, Ro. Not if I have anything to do with it. It seems to me like a lot of people are paying attention now. It seems to me like there are going to be a lot of changes and I know it is all because of you and because of our love story that is never going to end. I ended the night with my new friend, Jesse and his husband. Jesse is the one who sent you the signed Annie Leibovitz Star Wars poster. Another doing of your little RoMother. Jesse was so excited to meet me and had tears in his eyes the entire hour we spent talking about you. His husband lost a good friend to cancer who was really young and he was so proud to wear the “Fuck you cancer,” bracelet that I gave him. He said his friend who had cancer wore a hat that said this all the time. Because we all know if anything deserves the FUCK word most in life, it is cancer. I headed back up to my room about 1 a.m. and was beat. It took me awhile to settle down as my head was still spinning from the nights events.
We all took the train back to New York the following day. It’s been non-stop since returning from D.C. I had dinner with your old Sloan roommate, Phoebe’s mom, Ellen. It was so nice to see her and hear all about how Phoebe is doing. She is not walking yet but she is getting closer. I got to see a picture of her hair that is growing back in. She is so beautiful. She is so strong. She was so strong before all of this and it is such bullshit all that she has had to go through in order to “prove” her strength. She is here though and I know Ellen is so thankful for that. I would give anything to have you here, no matter how much damage the cancer had caused.
Yesterday, I ran around the city and met up with Katherine downtown at a photo shoot that she was finishing up. I got a tour of the studio and all the behind the scenes things that go on. We walked around the neighborhood and ended up grabbing a bite to eat nearby. It was there that we had a total powerhouse/pow wow/ let’s FUCK cancer up, meeting. I told her all the ideas I have swarming around in my head. She told me every single one of them was achievable and I was just the person to get things done, the right way. I am dreaming really, really, big RO. I am thinking about doing things that nobody has done in the name of childhood cancer and I know each one of these things I set out to do, is going to happen. The face of this disease is going to change in a big way all due to you and all the love and support you have behind you. I thanked Katherine for believing in me so much and for all she has done and is doing for us as she is our biggest cheerleader who truly knows how to get shit done. And she does this all out of the kindness of her huge heart that she has. She does this without asking of anything in return except to stand by my side while holding my hand and screaming, “FUCK YOU CANCER!!!!!!!!” right next to me. She is so beautiful in every single way a human being can be beautiful, x’s 1ooo. I am so thankful to her for opening her heart and her world to us. It’s something beyond this world.
After I got home from my afternoon with Katherine, I set out for a long dark run. I ended up running by The Ronald McDonald House and I stopped and peaked inside, just begging to see you. I couldn’t find you, so I left there and headed to Sloan Kettering instead. I got to the doors of the hospital and stopped and stared inside. I told you how sorry I was. I sucked in a deep breath and let out my tears. I didn’t go in and blow anyone up tonight, but I wanted to. I went to the Starbucks nearby instead and loaded up a gift card and told the cashier to use it on everyone who ordered a coffee, until it ran out. She looked shocked. I wasn’t planning on telling her why I was doing this because sometimes it’s just nice to do things in an anonymous way. I wasn’t expecting her to ask but she looked at me and said, “May I ask why you are doing this?” She caught me off guard. I could feel the tears start to form but I somehow managed to get out the words it was for my son, Ronan, who passed away from childhood cancer. I showed her your picture. After that, I ran all the way home feeling a mixture of sadness and strength that carried me the entire way back through the dark, freezing streets of NYC. Invincible, Ro.
I have so much more to tell you, baby doll. But I’m now on a train to Philly. I’m going to see Dr. Mosse at CHOP. I need your strength more than ever as today is going to be hard. The last time I looked that woman in the eyes was when she was telling me how sorry she was and how the medical world, had failed us. I now know that there are so many more things to for blame for killing you, then the medical community alone. I’m going to fix this. I’m going to change this. You will not die in vain. You will never be a fucking statistic.
I love you to the moon and back. I miss you so much. Thank you, Ronan for filling my life with the most beautiful people possible. Thank you for all the gifts you are leaving everywhere. I hope you are safe. I love you so very much.

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xoxo

Ro Baby Steps

Ronan. The past couple of days, have wiped me out. Mentally and physically. I cannot believe tomorrow is Friday. Where did this week go? I blinked and it was gone. I tried to tell Tricia today, what I have been up to. I couldn’t even remember. Still waiting to find that memory of mine that seems to have disappeared. Good thing I write to you at night. Could you imagine if I did not have this blog, to keep track of everything that we have been through/done? I would not be able to remember a thing. I was trying to give Dr. Joanne, an idea of the timeline of some things that we went though. I could not remember the months that we did your treatments and traveled with you to save my life. That is one of my homework assignments this week. To create a timeline of events for her. I also get to write that letter to Dr. Kushner that I have written, a million times in my head to him and bring it to her. Should be an interesting session the next time I see her.

I woke up today, tired. I took your brothers to school and came back home. I crawled in bed. Fernanda came by and I told her I was hiding. She told me it wasn’t allowed but crawled into bed with me anyway. We snuggled in bed together and talked about a lot of things. We talked about you a lot. We held each other and she just sobbed, really hard. I held her and let her. I cried too, but not like she did today. I’ve been crying so much I guess my body just took a little break and let her do some of the crying for me. I told her that I am going back and fourth between two things. I am either thinking that you were never real, you were never mine. Or I am thinking none of this is real and you are still here. My mind has been furiously playing tricks on me for weeks now. I cannot remember what is reality or what is not. I guess it’s in protection mode again. Maybe that’s why I have not been getting any little signs from you. It’s been awhile since you changed my radio station.

Fernanda left our house with a couple of chores to do for me. We are on a mission to change the face of Childhood Cancer. We have recruited 2 of our lovelies. Tricia and Stacy. We are putting together a game plan as far as where we want to start. We are meeting in a couple of weeks to go over our ideas and to make sure we are all on the same page. We all seem so scattered right now. We need to come back together so we can work with each other on what it is we want to do. Baby steps are beginning. Ro baby steps.

I left the house soon after Fernanda. I ran some errands. I came back home and decided to skip my Inferno Hike today. I threw on my Purple Running Shoes, just for you, and decided to go on an Inferno Run instead. This is a new one. This is how you know, I’m truly in HELL. I hate running in the heat. I used to complain about it so much. I was determined to do it today. It was awful, but in the best way possible. I only made it about 5 miles. I could hardly breathe due to my throat being so dry, the entire run from the heat. Oh well. At least I am lucky enough to be alive, right?? Yeah right. So lucky. It’s just where I want to be. I have to get my butt back into running though if I’m going to do our half marathon in January. I’m going to do that thing and make it my fastest time ever, just for you.

After my Inferno Run…. which I did not die on, but I wished I would have… I came home and showered. I had to meet your Daddy at Dr. Rachel’s office for our therapy together. I don’t know why, but I always feel so peaceful sitting in that room with your Daddy. I tend to be a little more quiet, calm, but always sad. I listened to your Daddy explain your treatment path to her and why he knows we did everything we could do. Why we made the decisions we made and if we had chosen differently, he still thinks the outcome would have been the same. He’s in a good place with the things we decided for you. I am not. But that is not a reflection on your Daddy. It is a refection on me and the way I am beating myself up now. I could have 10 of the best doctors in the world, standing in front of me, telling me we made all the right choices, and I still would not believe them. I’m convinced if we would have made the right choices, you would still be here. So in my mind; I failed you. I killed you. This is my fault because I am your Mama and I should have been able to protect you. I should have known that you were dying right in front of my very eyes those past couple of months. You were my child, my soul-mate, my other half. How could I not have known, that you were dying? That makes me the worst Mama, ever. This is where I am now and I don’t need anyone to tell me differently. I don’t need your Daddy to convince me that this is not true, because it is not going to work. I have to come to a place of acceptance, by myself.

I like Dr. Rachel. She is good for the both of us, but she is really good for your Daddy. He needs to be talking to someone, other than me. He went to see her without me yesterday. I am thankful he is being open to that as I know it is not easy for him. He is good at not dealing with his things and pouring all of his energy into taking care of other people which is just not healthy. He needs to deal with the sadness that has come from everything we have been though. Otherwise, it is going to eat him alive later on in life. We cannot have that. Your Daddy is such a strong man, Ro. But he needs to realize that he doesn’t always have to be. This is why Dr. Rachel is good for him. She is good about letting him know this. I’m thankful for her.

We came home to the boys’ and my dear friend, Melissa who had picked them up from school for me. They got to have a play date with her 2 kids which they always love. Your Daddy took the boys to play basketball and I stayed home and “cooked,” dinner. Does taking food and throwing it on the grill count as cooking??? It does to me. I have not cooked in so long. I miss it, but the thought of cooking food, makes me sick to my stomach. Cooking food, sitting down to dinner, with your spot empty kills me. I did it tonight and it was just sad and lonely. I hated every second of it. I hate every second of everything right now.

I love you. I miss you. I have a wicked headache and it has nothing to do with the 100 degree heat I ran in today. Nothing at all, I’m sure. I love you. I hate this. I hope you are safe, my sweetest blue eyed boy. G’nite Ro baby. Love you forever.

xoxo

Salt on an open wound

 

 

Ronan. Life goes on. One thing I am learning, is no matter what happens in life, it goes on. I hate this. I want everything and everyone around me to just stop. It’s apparent that this is not going to happen. I had no choice but to wake up today. It happens to me every morning, over and over again. Like groundhogs day. I woke up to the sunny sky and the ocean breeze. I told your daddy that we should go to The Hash House for breakfast. Do you remember when we went there a couple of summers ago? I think you had just turned 2. You were at that age where you would never sit still, but I somehow managed to keep you entertained as we enjoyed our breakfast. My friend, Kelly, took us with her husband and little girl, Gracie. Seems so long ago, Ro. But it wasn’t. I sat on a bench this morning, while we waited for a table. There was a mom sitting right next to me with her baby girl who was just 6 weeks old. I didn’t even know what to feel. Normally, I would have been all over this mom and sweet, new baby girl. Instead, I sat there quietly and tried to ignore her. Today, I felt a mix of jealousy, sadness, and emptiness. I thought about you when you were that little and what a gorgeous baby boy you were. I wished I could turn back time to have you all over again, as a baby, even if it still meant you ended up dying of cancer. I would do everything we just went though with you, all over again in a heartbeat. I don’t care how hard it was; at least you were still here. At least I still got to look into your big blue eyes and hear your little voice. I can never have those moments back now because some asshole named cancer has stolen them from me. I still can’t believe you are gone. I still cannot believe things like this happen in this day in age, especially to kids. Especially to you.

After the Hash House, we ran some errands. We then came back here and had a kind of lazy day. I took a nap with Quinn and your Daddy worked while Liam played on the iPad. It was a quiet day. The days I hate the most. We went over to Mimi and Papa’s condo for dinner. Liam is sleeping over there and Quinn is here with us. I can tell he is missing you so much. We watched some videos of you on my computer tonight from when you were about a year old. You made Quinn laugh like no other. He laughed so hard tonight as you  were up to your usual mischief and Quinn was your favorite target. He loved all the trouble you used to cause so much. I never thought I would complain about having boys that are so well behaved, but I am going to tonight. I miss your trouble making ways and the way you and Quinn would cause it together. Now, Quinny has nobody to cause mischief with as you know Liam is such a little rule follower and gentle soul. I cannot describe to you the absence you have left in all of our hearts Ronan. It’s like a whole new life. I life none of us ever dreamed of or wanted. A whole new, unwelcomed life where we have to struggle everyday to fill our days with something to make us smile. Today, we smiled over talking about you. Today, we cried about missing you too though. Those things seem to go hand and hand.

Tomorrow. Tomorrow, I actually have something to look forward to. Mimi and Papa are taking Liam and Quinn to Legoland which they are so excited about. Your daddy and I are going to drive to Laguna to meet up with Denise from Fore, Axel & Hudson. She is part of the amazing company who sent you all of your adorable hats and clothes. I have wanted to meet her for so long and we have been trying to coordinate meeting up. I can’t wait to give her the biggest hug for you. I need you to be with me tomorrow, baby. I cannot do this without you. As much as I am so excited to meet her and to tell her thank you in person, it is going to be hard not having you with me. I used to dream of the day that we could both meet her together, after we had gotten you all better. Your daddy is going with me so I will have him there to hold my hand. We will watch for your little signs all day tomorrow to know that you are with us. It will be the first time in a long time that your daddy and I have spent alone; just the two of us. I hope I’m not a wreck; it is hard for it to be just the two of us. Hard for me because I know your daddy is hurting just as badly as I am so it is like looking at myself, in a mirror, with my heart ripped out of my chest. The two of us together, alone, Ronan. It is just plain sad. The times that it is just the two of us, we basically just sit around, stare at each other and cry. I look in his eyes, and I see your eyes. Someday, I hope this will make me happy. But as of now, it’s like pouring salt on an open wound. Too much pain, everywhere.

I ended tonight by turning on the T.V. which I rarely to anymore. A movie, that I used to love, “Life as a House,” was on. Oye Vey. Bad idea to watch that movie. So good, but so sad. And of course it has to do with cancer. It was like a bad car accident though. I couldn’t stop watching or turn it off. I ended up bawling my eyes out. Cancer is just awful all around which is why things have to change. We are on to something though. That event for you, The Brightest Star in the Sky, that was put together in just a few weeks, raised 50k for you foundation, Ronan. 50K! I can you believe that?!?!?! I am still in shock and I am already hoping to turn this into an annual event. Think of all the awareness we are going to raise! My friend, Carolyn, said it was because of my words and your eyes that the event was such a success. I think she’s on to something. I’ve got a message to get out there and your beauty is going to help me do it. I was talking to Mr. Sparkly eyes today and you know how he is with his words. They always hit me hard. Today, he called me powerful. I laughed out loud at that, because I have never thought of myself this way. But after thinking about it, I feel like being powerful is something that I know I can be because I do have the passion and you on my side. I will use my power to make people aware of Neuroblastoma. Something most people have never even heard of. I am going to use my “power” in such a positive way and make such an impact. I have no choice. You will forever be my inspiration, my hero, my role model in life. You have changed me forever. Thank you, little man.

I’m going to snuggle up to your brother and your blanket, GiGi. Miss you so much, Ro. Sweet dreams. Come and cuddle with me tonight. I love you.

xoxo

The ocean didn’t swallow me whole

 

 

 

Ro baby. One of our favorite movies is on. “The Fantastic Mr. Fox.” This is the first time I’ve watched it without you. Quinn is sitting next to me, eating a sandwich I just made for him. It is late but we are still awake. Daddy and Liam are asleep out in the other room. Quinn and I wish you were here with us watching our movie. You used to crack up at it, which in turn would make us crack up. There is none of that now. Watching this movie will never be the same again.

Did you see us today? I sat and wondered if you were watching us. I wondered if you would have been happy to see me smile. I smiled today while I watched your brothers play in the pool with their cousins. They laughed a lot and there was a lot of wrestling and horsing around. They looked so happy. As I watched them, I was overwhelmed with a mixture of happiness and sadness. It made me happy to see them so happy, but it also made me sad. How can they go on, how can the laughter continue without you? I know it is a beautiful thing and I know it doesn’t mean they miss or love you any less. But it still felt wrong to me. Will it always feel this way, Ro? I hope not. I hope someday I will learn to feel happy again and not have to sit and second guess it and not have to feel guilty about it. It still feels like I am betraying you.

I spent the day with your brothers. We enjoyed the sun. I went boogie boarding in the ocean. I ate a bit for you too. I tried to soak up the time with your brothers. I am watching them form a new kind of relationship now. They seem to fight less and love more. They seem to be aware of how lucky they are to have each other. They seem to be developing an understanding of how precious life is and how we have to make the most of everyday. They are being respectful and there is less sass and chaos. We are getting them back into a stable routine which they are thriving on. I know how important structure is, how important our family time together is to them. I know how much they have missed it. I’ve missed being able to give it to them too. I won’t say it feels good, because nothing feels good yet. But it gives me a purpose in life which I really need right now. Knowing that I have to work hard to help them get through this is something I feel so lucky to be able to do.

I went on my nightly run on the beach tonight. It hurt and I ran hard. I ran with a lot of anger tonight. Guess who I was angry at tonight? Everyday it is somebody or something different. Tonight, I directed my anger towards Dr. Kushner. I know, so not fair and so pointless. I know he is a good doctor, Ronan but I am pissed about the way he ended things with us. It wasn’t right and someday I am going to write him a letter and tell him all of this. I wrote it in my head tonight on my run, but I don’t have the energy to sit and have it out with him now. The way he sent us off, without even giving us a proper goodbye; I’m sorry it just doesn’t sit well with me. And why didn’t he look me in the eyes, Ronan. I don’t care how badly he felt; the fact of the matter is he wasn’t the one who had just been told in not so many words that there was nothing else that could be done for you. Nobody was hurting more in that room than me. He just sent us on our merry way and had his freaking assistant call us the next day to tell us he thought we should go to Chop. That will never be enough for me and it will never sit well with me. He owed you more; he said he would fight for you and not give up. He did give up and that is not right. Someday Ronan, I will fix this. I will make sure he never forgets you and I will give him another chance to make things right. I know he has this in him and although it may seem so pointless, it is not to me and I know it is not to you. I need closure in so many ways and this is one of them.

Did you see me after my run, Ro? It was such a long and dark run tonight. I still had so  much energy running through my body so guess what I did?? I went down to the beach, threw off my shoes, my hat, my shirt and ran into the black ocean. I swam in that deep, dark ocean until I could now longer breathe. I waited for it to swallow me up, but it didn’t. So, I swam out as far as I could and let the strength of the waves carry me back to shore. I did this for about a half an hour. The beach was empty, the ocean was mad, and I screamed and cussed at it until I physically could do no more. I told the world to fuck off for taking you away from me. I told the world that I was going to kick it’s ass. I told the world a lot of things tonight. After my swim, my mind calmed down a little bit. I think it was the physical exhaustion that kicked in and did it. I did it for you tonight, Ronan. I swam in that dark ocean because I am lucky enough to be alive and I am lucky enough to be able to do something like that. You will never have the chance. So tonight, when I jumped into that water, I took you with me. I wasn’t scared because we did it together. I wanted you to feel the coldness with me. I wanted you to be able to do it too. Everything I do in my life, it will be with you. I will always take you with me, Ronan. Just you and me, Ro. Just like you used to always tell me. You’ll be with me everywhere I go and with me in everything I do. I promise you that.

Alright my little monkey. That is all for tonight. I hope you are safe. I hope you always feel the love surrounding you. There is so much of it in the world for you. I miss you so much. Every second of every day. G’night my love.

Hello you lovely peeps. I hope you are all well. I just wanted to add a little something tonight before I drift off into my restless sleep. As much as I try to keep up on all the comments on here, I can’t. I try to do my best and I love what you all have to say. I checked them first thing this morning which I normally never do and something was written about how a certain person wished the lesson I would have learned through all of this is that there is no such thing as the perfect family. That there is no such thing as having it all. This remark has bothered me all day. Who is it who decides such a thing? To me, perfection can have a million different meanings. To me, I know what the perfect life was because I had it. To me, the perfect life was very simple. A roof over our heads, two parents who are madly in love with each other; who created a very safe and loving environment for our 3 heathy boys. I am living proof that the perfect life can and did exist until Ronan got sick. I now look around and I see all of my beautiful friends and I know they all know that they have the perfect life due to what we have just went though. I know they are all so thankful for the “imperfections” that they deal with on a day-to-day basis that mean nothing because they have a healthy family. My world would be shattered if I didn’t believe that a perfect life does still exist for some people. I have no doubt that my definition of perfection will now become different because Ronan is gone; but I still feel so very lucky. For going through such an awful thing, I look around and see perfection in my husband and my twins everyday because they are full of love and health. After looking up the definition of perfection, I still stand by what I say. It’s sad to me that somebody wishes the lesson I would have learned from all of this is that perfection does not exist. A better lesson for me to have learned through all of this would have been to open up my heart and embrace all the love that surrounds my family. To open up my mind to a world full of imperfection and to try to make a difference. To just be me, which is all I am trying to do to get through this thing called life. Perfection does exist and I had it for 4 blissful years. I will fight for the rest of my life to get pieces of it back here and there because that is what Ronan would want. He would want me to fight for the perfection that existed in our family. He would not give up on me and I have a slew of the most perfect friends who are here to help me achieve this. Perfection is real, perfection can have many different meanings. Perfection to me means not taking a thing for granted and living with the most love in your heart that you are capable of. It means stopping at nothing to get it until your heart is fulfilled in the way mine was when we had Ronan in our family.

I love you all; even the one’s on here who try to knock me down because lord only knows why. It’s not going to happen. I have a message to send and a job to do and if you’re not with me, or you just want to say hurtful things, then please stop reading this. I’ve done nothing except love and fight my hardest for a little boy who deserved so much more than what he was handed in life. If this offends you for some reason, I’m sorry. This is my life, my feelings, and my Ronan.

That is all for tonight. Love and blessings to you all.

xoxo

The oldest definition of “perfection”, fairly precise and distinguishing the shades of the concept, goes back to Aristotle. In Book Delta of the Metaphysics, he distinguishes three meanings of the term, or rather three shades of one meaning, but in any case three different concepts. That is perfect:

1. which is complete — which contains all the requisite parts;
2. which is so good that nothing of the kind could be better;
3. which has attained its purpose.[4]

A winking kind of weekend

After a whirlwind of a weekend… it’s now just Ronan and myself snug in our bed. I don’t even know what went on this weekend except it was lovely. And a blur. We had a weekend full of non stop fun, laughing, eating, walking, crying, and fighting (3 boys, it happens). In other words, it was a weekend full of complete and utter chaos. Just the way it should be when you are the parents to 3 little men. We enjoyed our time together as a family and with Macy. The boys’ are over the moon for her and she was a godsend. She helped me out so much and has an infectious way of making everything better. Thank you, Mace. For everything. You have no idea how much it meant to have you here with me and my family. I love you so much.

Today was a little hard. Having everybody leave at the same time was sad. My Liam, who I tend to think deals better with all of this than Quinn, had a hard time leaving today. I may be wrong about him dealing with all of this better. He is more mature than Quinn, but all of this is still really hard on him. Macy, Woody and the boys were all upstairs in our room and we were getting ready to go downstairs as their car was waiting. I looked over to see tears pouring down Liam’s cheeks and he was saying he didn’t want to leave. This in turn made me cry, Macy tear up, and Ronan as well. I held Liam tight and promised him that he would be back soon. I tried to give him a pep talk about all the fun things at school that he was getting to go back to. How great it would be to get back to baseball, his friends, etc. I tried my hardest to be super encouraging and excited for him but all I was thinking in my head that was this was all bullshit. Bullshit that I have to be separated from my family, bullshit that we are going through this, bullshit that we can’t all be back in Phoenix together. Fucking bullshit and there is nothing I can do about it. So I lied through my teeth today and told my first-born how excited I was for him to get back to Phoenix, and how great everything was going to be. I wanted nothing more than to hop on that plane with everyone. But I have learned that getting what I want nowadays is not so simple. Everything I want, I cannot have. This is a hard pill to swallow when you are used to having it all.

After the boys left, I held on to Ronan tight as he cried. He kept saying that he couldn’t believe Liam and Quinn had to go back to Phoenix and that it wasn’t fair. I played with him and tried to distract him from the obvious. After a couple of hours, the two of us cuddled up in our bed and fell into a deep sleep for a few hours. I woke up first to my phone ringing and it was Woody saying they were waiting to get on the plane. I could hear Liam and Quinn in the background and I told Woody how sad we were. He said he was sad too, and it gets harder and harder to leave us. We said our goodbyes and I cuddled back up with Ronan. He woke up about 20 minutes later, full on sobbing about wanting his brothers. I talked him through it and gave him a really long bath to try to make him feel better. After his bath he looked at me and said in his squeaky little voice, “You make me happy.” My heart fell to the floor. He always knows the perfect words to say to me when I need it most. We spent the rest of the night playing in our room. We made a quick run to the store to pick up some food. Ronan has been eating non-stop which of course, makes me very happy.

This weekend I heard Ronan say at least 20 times that this was the best day of his life. It was beautiful and heartbreaking all at the same time. Ronan also learned how to wink and practiced the entire weekend on Macy. It is the CUTEST thing alive. To see my little boy, with a grin on his face, winking non-stop on a pretty girl. OMG. No girl stands a chance against Ronan at the age of 3…. let alone during his teenaged years. Macy got a big kick out of this as she cannot wink herself. It kept us all laughing and Ronan was so proud of himself. He told me tonight that it was a winking weekend. He is such a big flirt.

As much as I enjoyed our weekend together, I was also filled with a ton of anxiety. Scans coming up, my family leaving, etc…. As much as I tried to let go; I felt like the weight of the world was on my shoulders. Last night around 7:30 I told Woody I was going out for a run. He was happy to watch the boys for me and I was so thankful. I hadn’t run in over a week which causes me major anxiety alone. I headed out in the rain to do my usual 8.4 loop. Being from the Pacific Northwest, I wasn’t going to let a little rain stop me as running in it is one of my favorite things in the world. A little rain turned into a full on storm but I refused to turn around. It was raining sideways and Central Park was empty except for me, the crazy mama whose son has cancer. I thought to myself, “If I see another person running out here, their child must have cancer too, because nobody in their right mind would do what I am doing now.” That’s exactly how I felt. My anger pushed me through and even the rain slapping me in my face good. I’ve realized that I now crave any kind of physical pain. It makes me feel good to feel something besides the own pain that eats at my soul 24 hours a day. A break from the emotional pain of all this is something that I crave. It is my only escape. After I made it back from my run (slayer free, little M) I am not kidding you when I say I returned back to our room and had to wring my clothes dry as they were more than soaked. I looked like I had just jumped into a pool fully clothed and had about an inch of water in my shoes. But after all of that, I felt a release that I really needed. Even though I think my body went into shock after my run. It was a hard run at a fast pace and because my workouts are no longer consistent, my body knows it. After a hot shower and a lot of water later, I felt better. My sweet husband offered to run out at 9:30 at night in the same pouring rain to get me some things at Target. He took Liam with him and they grabbed a cab and off they went. They came back with new sheets, a duvet, a duvet cover, and a few other things for me. I looked at him, as he was drenched, sitting on the bed as I helped him get out the sheets so I could wash them, and I thought to myself, “What a good man. What other man in the world would run out in the rain at 9:30 at night to try to get me some things to make our place feel a little more like home?” Not one. Woody is seriously one of a kind. I’ve known this about him since our first date. It’s not often that someone ends up begin everything you could have ever dreamed of and more. I am thankful everyday of my life for that man.

Our place at the RMH leaves little to the imagination. We have spruced it up as much as we can, but it is a far cry from my home sweet home in Phoenix. I am still grateful though. I don’t know what we would do without this place. We are making the best of it and have done little things here and there. We pushed the little twin beds together and turned them into a king sized bed. The things like the Star Wars decals that a family sent us now decorate one of the walls. I’ve also turned on of the walls into “Ronan’s fan wall,” and have started to put up drawings and pictures that people have sent. This led me to an idea….. I know so many of you read this blog, and often times I wonder what your beautiful faces look like. I wanted to ask if you would take the time to send us a picture of yourselves so I can put it up on Ro’s wall. It brings such a smile to my face to know I have all of you cheering us on and I would love to be able to see what you all look like. I thought it could be a fun little project that Ronan could look forward to. He loves to talk about all of you, even though he doesn’t really get all of this in the grand scheme of things. I often just tell him how he has people all over the world, who love him and who are helping to get him better. He loves to hear this.

Alright my lovelies. We are finally getting somewhat sleepy around here. I hope you all had a beautiful weekend. Scans are on Wednesday and Thursday so keep our little guy in your prayers. He needs them and so do we. Sweet dreams.

xoxo

24 crazy hospital nights! Somebody bust us out of here!

 

I feel like I’ve been on a roller coaster of happy and sad today. Happiness came in the form of our dear friend and Tricia’s sister, Sarah, getting a nursing job at Mayo. Soooo proud of you Sar! It also came in the form of my beautiful cousin, Shannon, getting a full ride to USD. She is about to embark on the greatest journey of her young life. Happiness came in my Ronan and his beautiful spirits and smiles. Not even being cooped up in a hospital for over 3 weeks now can keep him down. Sadness came in many forms as well. Hearing about somebody from my home town having his sister murdered last night. I don’t know them well, but my heart still aches for them. Sadness is undeniable in the hospital. I gave my biggest smile to a teenaged girl who was walking the halls with her bald head and her newly amputated leg. She told me how cute Ronan was as she passed us on her crutches. I told her she was beautiful. Sadness also came in seeing my friend, Ellen today and the look on her face after her visit to Sloan this morning. Phoebe is still in a lot of pain and is going to have to have surgery on her leg again this Thursday. I’m sick to my stomach for them. It’s nothing too major, but my heart breaks for Phoebe who just wants to be a normal girl. My heart breaks for Ellen as a mama because I know what it’s like to see your child in pain and to feel so helpless. I am praying that this surgery will help to lessen Phoebe’s pain and she can just get on living her life already. She deserves a break.

I spent the entire day playing with Ronan. He has a lot of energy and this leaves me thinking that somebody is messing with us. How can his ANC still possibly be 0?? Ronan ran circles around me the entire day and was so happy. He is not the picture of a little boy who has 0 immunity. It’s beyond frustrating. Every morning at 4 a.m. they draw his CBC’s…. his blood counts. Every morning I wait for them to come in and tell me today is the day, his ANC is rising. No such luck yet. Every time they tell me they are at 0, my heart sinks. I will just keep hoping and praying that they come up this week. I want Ronan to be out of the hospital and to spend some time with Liam and Quinn. I want my baby to be able to go outside and breathe in the fresh air. I want him to have some kind of normal….. you know how I really feel???? I want to take him home. Home seems so far away. So far away that I cannot even picture getting to go back there anytime soon. I know we are in for the long haul here and I am fully capable of handling that. But when you have been stuck in the hospital for over 3 weeks now…. it makes the homesickness kick in extra hard. I don’t tell Ronan this though. I just keep putting on my bravest face for him and telling him we are working extra hard to get him better. He asks a lot of questions, like why we have to be at a hospital in New York. He wants to know why he can’t have his old doctors back and be in Phoenix. I just tell him because this New York is a magical city that is going to get him better. He usually just smiles and says he just wants Liam and Quinn here with him. It takes everything I have keep the smile on my face for him and to keep his mind occupied so we can focus on the happy things. I may be sad and sometimes I can’t hide it from Ro. But I try my hardest to control it if I can.

Ronan fell asleep not too long ago. I don’t think he’ll stay asleep for the entire night. If I know my little guy, he’ll wake up soon and be ready to play. Last night we didn’t fall asleep until 2 a.m. He kept telling me he wasn’t’ going to sleep because it was party time and he was too busy shaking his booty. He cracks me up like no other. Every morning we are bombarded by “The Team,” of doctors. It’s one doctor and about 10 residents. It is a little weird. It makes me feel like we are zoo animals on display. Ronan gets so pissed and overwhelmed by all the people staring at him, that he usually ends up screaming and hiding under his blanket. The doctor usually goes over what the plan is for the day and asks if I have any questions or concerns. Ronan won’t let the floor doctor (the one I wanted to kick in the balls) exam him. Good instincts, kid. He has become very fond of a girl resident though. After ” The Team,” leaves, she stays behind to exam him and talk to him. He actually answers her questions. She is young, pretty, and very gentle with Ronan. Today, when she was listening to his heart I looked at her and I said, “He really likes you.” I saw her eyes tear up and she goes, “I feel the same way.” She is going to be a very good doctor someday. Ronan already knows this too. It’s the reason that he is so receptive to her as she treats him like a normal little boy.

Ronan only slept for about an hour. He woke up and we were off for our next adventure. We spent a lot of time out of our room. We walked the halls for hours, played in the playroom and avoided the hot lava that was underneath our feet. As soon as we returned back to our room, a nurse came in to tell me that they wanted us to switch rooms. Our roommate had left earlier in the day and 2 girl patients were begin admitted and they needed the girls in the same room. I hesitated as we have already moved once and it was a total pain in the ass. I had to move all our stuff by myself while Ronan waited on the floor in the hall for me. I asked if I could see the room we were moving into first. The lady told me the number and I went to check it out. Good thing I did, because there was no way in hell I was moving into that room. It was the size of a shoebox, the boy and his parents had the heat turned up to about 90 degrees. FUCK THAT SHIT. I came back to our room, which is huge by the way, and told our nurse, Alex, that I didn’t mean to be a pain…. but there is no way I could move into that room without going crazy. I pleaded with her and told her we have been here for 24 days now… could she please she what she could do so we didn’t have to switch rooms. Alex came back a few minutes later and just said they would move the boy that was in that room, into our bigger room. Thank the lord. A tiny 90 degree room is something that would have totally thrown me over the edge. So no moving for us. We are staying put where we are.

It is 1 a.m. here and Ro is just now laying down to watch a movie. We are so excited for Woody and the boys’ to arrive tomorrow night. Cannot wait to see them and wrap my arms around them all. Being here alone is fine… it’s just hard because I am stuck in a hospital and cannot leave to go anywhere. Ronan wanted pizza from a place down the street today and thankfully, they delivered. He refuses to eat the hospital food so he has been living off of peanut butter and jelly sandwiches that I make him. The hospital food is actually pretty good… for hospital food. But there is something about the smell of it that ruins the appeal. Hospital food smells makes me gag. Ronan too. No clue where he gets that from 🙂

Time to get some shut eye. Maybe. Depending on if my little man says it’s time to go to sleep. He runs the roost around here for the most part. I’m o.k. with that. The more time I get to spend with him, the better. He is more mature than most grown adults and I’m happy to follow his lead. He’s going to be a great boyfriend to some lucky girl someday. A man that knows exactly what he wants. Kind of like his Daddy:)

I love you all so very much. G’nite to all of you lovely souls out there. Miss all of you back home so much. Kiss your babies and hug them extra tight for me tonight. Thank you for checking in with us. Sweet dreams.

xoxo

Princess Leia and Captain Rex take on the world… or at least the halls of Sloan-Kettering

Last night was a little better than the night before. We have had a really, really, extra sweet nurse, Alex, the past 2 nights. She is adorable, looks like she is about 12, and really gets along well with Ronan. She is super patient with him, very calm, and is very doating. He meshes well with her which makes it nice on my part. All of the nurses are great here, but Ronan seems to have a connection with Alex. Reminds me a little of Arica back home, one of our favorite nurses on the floor of PCH. Miss her. I asked Alex what we could do last night to make sure we had less beeps. She tried her best, but the stupid “asspole,” went on beeping most of the night. “Inclusion in line, Inclusion in line!” is what it said. Which basically means there is a bubble in the fluids he is getting which causes it to beep every half an hour or so. Very disruptive and as my Charisma would say, “RUDE!” Ronan also had to be woken up twice to be given his morphine, which was not fun at all. He was a very mad little boy about it. After about 20 minutes of fighting, he swallowed his medicine and went back to sleep. Seems cruel to wake a sleeping child but rules are rules around here.

My mom came to relieve me around 11. Ronan was in a much better mood this morning when she arrived. We were sitting in our bed playing, when we got a special delivery via fax. A message from our very own “A,” back home! It was the sweetest note written to Ronan from her. I read it out loud to him and he got the biggest kick out of it. She even drew a monkey at the bottom of it for him. So sweet and thoughtful of her. It made both of our days. After our special letter, I gave Ronan his bath. He once again, sat and bathed all of his Star Wars guys which kept him busy. I told him goodbye and slipped out for my daily break. So thankful that my mom is here to help. She has had a lot of nice bonding time with Ronan. It is special for both of them. I went back to the RMH and thought about going on a run, but my left shoulder was killing me today. I decided to go around the corner to the Asian massage parlor I discovered a couple of weeks ago. It seriously looks like something out of a sketchy movie, but one thing I love about this city is you can never judge a book by it’s cover. It is the cheapest/best massage I’ve ever had in my life. Forget that there is almost no privacy as you are separated from other customers though sheets hanging from the ceiling that separate your beds…. the two times that I’ve been there, the place has been empty. A very well hidden secret I suppose 🙂  The women there give the BEST massage I’ve ever had in my life. I left there with still some pain in my shoulder, but it is better than it was. Thank you, ah sookie sookie now. (that was for you, daddy woo)

I returned to Sloan to find my mom chatting with Dr. Kushner. He stopped by to check in. We talked about Ronan and how great he looks and he told me him not having an ANC for this long is normal, considering all he has gone through. He also told me it’s great to see how well he is tolerating the chemo as he does not look like a sick child whose just completed his 8th cycle. He is such a tough little man. We talked a little more about our plan of attack but nothing will be confirmed until we see the results of Ronan’s scans, which are next week. Scanticipation begins. UGH. Dr. Kushner also sat and talked to me about running, because he is an avid runner himself and we usually always talk about it. He gave me some great Central Park tips which I always enjoy. He really is a very nice man.  Every time I look at him, I can’t help but obsessing over how brilliant he is. I cannot imagine the way his mind must work…. he has revolutionized so many things in the Neuroblastoma world. I really have to focus when I talk to him, otherwise I catch my mind wandering thinking about how he does what he does, eats, breathes and sleeps this disease everyday of his life. I’m curious as to how he came upon devoting his life to Neuroblastoma. So many questions, never enough time.

While I was out today, I caught up on things like mail, bills, emails, phone calls, etc…. I got to hear the voices of a few of my dear friends…. Fernanda, Tricia Boo, Niki, Danielle, Marisa, Pam, Amy, Lindsey, Auntie Karen, and Mr. Sparkly Eyes. I don’t get a lot of time to talk on the phone here due to being at the hospital so much. When I’m out alone, walking the city, I try to return a lot of my calls. It was so good to talk to my friends today. Good to hear their voices and to check in. Miss them all much.

Ronan and I spent tonight like we always do. We walked the halls for about an hour, shooting anybody that came our way. He was Captain Rex and I was Princess Leia. The nurses, janitors, doctors, patients, are great at playing with us. We came back to our room, played Star Wars, then called Liam and Quinn. It was good to hear their voices and I always love to hear the conversations between my 3 monkeys. Adorable. I cuddled in bed with Ronan and we sang “Twinkle Twinkle Little Star,” together just like we sing every night while I rubbed his back. It didn’t take much for him to drift off to sleep… it’s late here, midnight now and he fell asleep only about a half an hour ago. Sweetest dreams to the sweetest little boy. I whispered that I loved him to the moon and back and kissed him on his cheek. He tastes like milk and sugar.

My Tricia Boo is taking the Red Eye here tonight. Cannot wait to wrap my arms around her! She is staying until Sunday and Niki got in today as well. Double YAY! Niki is here with her kiddos and I am going to try to see them tomorrow. I only wish Ronan would be discharged so he could see his friends too 😦 Keeping my fingers crossed that it happens by this weekend. I was telling Mr. Sparkly Eyes tonight that we have been inpatient for almost 3 weeks now. He feels awful and wanted to know how I was doing. I tried my best “Mrs. Positive Attitude,” and replied that I was making the best of it. He then went right to, “Cut the bullshit and tell me how you’re  really doing.” Can’t get anything past that man and it made me laugh out loud. I am such a fan of the bluntness. How am I doing this?? I honestly have no idea. I texted Woody in the middle of the night 2 nights ago to say if he didn’t bust us out of here I was going to murder someone. I have my moments of temporary insanity, but then they are usually quickly washed away by a flash of happiness, gratefulness, or beauty that comes my way… even if it comes in the form of something as small as Ronan telling me I look pretty and thanking me for being his mom. I swoon for his little, kind words. They mean everything to me.

Alright my sweethearts. Tired tonight and going to try to get some rest. G’nite and sweet dreams to you all. G’nite my Big Daddy Woo. Enjoy our cozy bed and cuddle up to my Liam and Quinn for me extra tight. I LOVE YOU AND MISS YOU SO MUCH.

xoxo

Just another hospital night, yo! I don’t miss my bed at all!

 

Tonight, my heart is peaceful and content. My mind is quiet; which doesn’t happen often anymore. Tonight, I am once again filled with a peacefulness that everything is going to turn out o.k. I’m not sure why. I haven’t felt this way in a long time. I’ve been so caught up with my worrying and trapped in a dangerous place where the darkness tries so hard to take over. It consumes me most nights… especially hospital nights. Not tonight. Maybe it was the fact that I had a much-needed day out of the hospital today and these little breaks seem to help me. Maybe it’s the fact that Dr. Kushner and Dr. Modak came to see Ronan and could not believe how well he looked for having a 0 ANC. Maybe it’s the fact that I got to listen to Woody tell me how well Liam and Quinn did at baseball tonight. How when Liam got up to bat, one of the coaches told him to hit this one for his brother and he cranked the ball out of the park. Or maybe it’s the fact that I just spent the last hour walking the halls of the hospital with Ronan while we both carried our toy guns and shot every person that came in sight. Maybe it’s a combination of all of the things above. Whatever it is, it doesn’t matter. All that matters is it’s moments like this that keep me going, pushing forward, with my head held high. These little moments will carry me though to the other side of this awful mess. With Ronan in my arms the entire way.

Last night was rough. Rough as in I got very little sleep due to our stupid “pole” or “asspole” as I’ve decided to name it, going off every 20 minutes. BEEPBEEP!!!! BEEPBEEP!!!!BEEPBEEP!!!!! So. Freaking. Annoying. Every time this happens, I have to push our little red button and say, “We’re beeping!” The nurse either comes in right away, or it takes 15 minutes. Not fun for anyone. Our poor roommates included. The nurse also had to wake Ronan up twice last night to give him his oral morphine since they took off his Fentanyl patch a couple of days ago. They are slowly trying to wean him off all of his pain medication and he is now down to a really low dose of morphine. Try getting a 3-year-old to cooperate taking a medicine he doesn’t like, while waking him up from a dead sleep. Needless to say, there was a lot of screaming and fit throwing in the middle of the night. Brutal. Rough night indeed but we survived; once again.

Today, we had Ronan’s last day of RT on his arm. It’s nice to be done with that. It seems like it has really helped his pain and I am thankful. My mom came to the hospital, armed with a bag full of toys. For a small town mama, she is sure doing well getting around this big city. Proud of her 😉 I was able to leave the hospital and Ronan with my mom with promises of my return with new Star Wars guys. I went back to the RMH, showered, and got ready to meet my friend, Ellen for lunch. Ellen is the mom of Phoebe, our last roommate at Sloan. They live about an hour outside the city and she emailed me yesterday to say her parents were going to watch the girls for the day so she wanted to know if she rode the train in, if I could come and meet her. I jumped at the chance and we had a lovely day catching up. I loved hearing all about Phoebe and how she is doing. She is such an inspiration. They will both be at Sloan on Monday so considering Ronan is up for it, we will make sure we get over to the hospital to see them. Such a nice family who so does not deserve any of this and it sucks we are getting to know each other because both of our kids are dealing with cancer. Why can’t cancer pick on the real jerks in the world…. Hello rapists, child molesters, child abusers, murderers?? Cancer does not discriminate but it should. Leave us nice people and our kids alone. A-hole cancer.

After my day with Ellen, I walked the entire city in search of a couple of new Star Wars toys for Ro. He would have had my head if I had come back to the hospital empty-handed. Mission accomplished. He was very happy with my findings. I returned to find a very sweet boy waiting ever so patiently for me. Best thing in the world to come back to this dreary hospital life to. He melts my heart like butter. I also came back to find some beautiful mystery New Yorker had dropped off some goodies for us and I think, donated blood, as they left a little key chain that Sloan gives you for doing so. They also left the sweetest hand written card and only signed it, “A New York Friend.” Dear New York Friend…. who are you, you lovely person, you??? Would love to meet you and tell you thank you in person. Your gifts were so thoughtful and sweet. I had just run out of my stash of Coconut Water too. Thank you, my mystery NYC friend. You made this mama smile today.

Ronan has been so occupied tonight by watching things on YouTube. Mainly Star Wars things and we have been cracking up. I’m going to put a couple of his favorite findings on my blog. Hope you all enjoy them. Thank you, once again for your love and support. Thank you for keeping our family close to your hearts. It is such a gift to us. G’nite my sweet friends. Love you all!

xoxo

You belong among the wildflowers

I was telling my bestie today that I remember when I was a child and my parents used to watch the show “30 Something.” As  a little girl, I always thought the people on the show were so old and the show was really strange. I then told her how I wished I would have paid attention because then maybe, I would have picked up on the warning signs that being in your 30’s is hard. Or maybe it’s really not, and it’s only because of our situation, but is seems as if everyone around my age is going through something right now. Please tell me it gets easier…. because right now this is so not how life should be. WTF?? I also told her that I feel like someone just came along, took a look at me and thought, “Oh, hello. You’re life is too perfect so we’re going to give your kid cancer.” Just out of nowhere, BAM! This comes along. Really? Thanks a freaking lot. Couldn’t I have been hit with something a little less drastic? This is so not necessary. Trish and I both decided that if we were told that the world were ending tomorrow, we would believe it. It is the only explanation for all of this bullshit. I am laughing out loud thinking about something that happened after she and I hiked tonight. We were walking back from Camelback Mountain and we were almost to my house when some car comes flying out of their driveway and almost hit us. Tricia seriously had to grab me and pull me back from being hit by the car. We both then started dying laughing saying how we should have just jumped in front of the car so it could have hit us. O.K…. maybe not such a funny story as I sit and re tell it, but we were dying laughing. Totally kidding of course but I swear the only way I am going to get through any of this is laughing at as much stuff as possible. No matter how morbid it may be. Oh, bestie. How I love you so. I will tell you everyday of my life that you are my saving grace. I am so lucky to have you. Together we will get through all of this. I promise you this.

So, this weekend, as horrific as it was due to some terrible bullshit that has gone down; was absolutely lovely. Pain and sadness cannot be denied, but through all of the tears I see a soul being cleansed and renewed. It is amazing what can come of things when you are surrounded by the people who love you the most and who refuse to let you fall without picking you back up. This weekend was spent doing things that we used to do as a family before all of this. Hanging out, going to baseball practice, playing outside, movie night, eating out for breakfast. Such normal family things. It felt so nice because it has been so long since we have been able to really spend time together like this. Ronan is acting as if he is the healthiest boy in the world. He is full of nothing but giggles and smiles, love and light. He is so happy to be at home with his toys and his brothers. He happiness is infectious and keeps us strong.

I spent a lot of time outdoors this weekend doing what I used to do before all of this. I went on a 2 hour hike with Trish and Sarah yesterday. It was so therapeutic. I love nature, love being outdoors and the time with the two of them is always healing for me.  Then this evening I hiked Camelback with my Tricia Boo. Hiking Camelback is something we used to do all the time together. It’s our church and our special place. We got to the top, sat down for a bit, and I prayed my little heart out. It was so peaceful and gorgeous. I miss doing things like this so much. I’ve already made Trish promise that we will get back to how things used to be, as much as possible. I’ve got to have a little normalcy in my life and time spent with her, running or hiking is so good for both of our souls.

Ronan and I go to PCH to the clinic tomorrow. They will do the standard checking his blood levels to see how he is doing. I’m not sure when, but sometime this week we are flying out to NYC so they can check my blood and do his scans. You ready to hear step one of what we will be doing at Sloan for Ronan?? Here goes……

Full Title :
PHASE I STUDY OF ANTI-GD2 3F8 ANTIBODY AND ALLOGENEIC NATURAL KILLER CELLS FOR HIGH-RISK NEUROBLASTOMA
Purpose :
The goal of this study is to see if it is safe and feasible to give chemotherapy (topotecan, cyclophosphamide, and vincristine), natural killer (NK) cells, and an antibody called 3F8 to patients with high-risk recurrent or persistent neuroblastoma. 

The NK cells, a type of white blood cell, must come from a patient’s relative who shares half of his or her HLA proteins, which are immune proteins important in transplantation. Studies have shown that NK cells from a donor can be given safely and can be helpful in treating some diseases. These NK cells are collected from the donor and purified.

NK cells can recognize and kill abnormal cells in the body and can work together with antibodies to kill target cells. The antibody 3F8 specifically recognizes a protein present on neuroblastoma cells. Researchers have already shown that the 3F8 antibody can be administered safely to neuroblastoma patients. They want to determine the effects of the combination of chemotherapy, NK cells, and 3F8 antibody on patients’ cancers and bone marrow function, and how to maximize its benefits in treating cancer.

Eligibility :
To be eligible for this study, patients must meet several criteria, including but not limited to the following: 

  • Patients must have a confirmed diagnosis of high-risk neuroblastoma that has persisted or progressed despite standard therapy.
  • Patients must have a matched blood relative who can donate NK cells.

This is where we are starting. We will start this on March 21st and will be in New York for 5 weeks straight. We will then be able to come home for a 3 week break. To explain all of the treatments combined right now is too overwhelming for me. But I wanted to let you all know where we are starting off. Dr. Kushner has seen great results in the lab as far as this study goes and it’s been successful in kids as well. We are putting all of our trust into him. This has to be effective. We don’t need anymore bumps in the road, please. This is going to be tough on Ro. I know the 3F-8 stuff is painful. But he is so strong. If anyone can do this, it’s Ronan.

I hope you all are well tonight and had a beautiful weekend. We are so thankful for all the love and support through all of this. We are very thankful every second of our lives. Sweetest dreams to you all.

xoxo