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

I wish cancer got cancer and died

Ronan. Night is setting in. Another day gone without you here. It was as good of a day as I could have possibly made it. It’s just me here with your brothers. No breaks, no running, no time to sit in a corner and cry about missing you. The show must go on. We all slept in. I had a hard time getting to sleep last night, even with my Ambien. My mind was racing with thoughts of you and I felt as though I couldn’t breathe. I felt as if I was going to have a full fledged panic attack right here in my bed. I stayed as calm as I possibly could and talked myself down from the ledge. I actually just started counting in my head. Counting until everything went black and I fell into my dreamless, medicated, state of sleep. I woke up to the sound of your brothers. I got up as soon as I heard them as I knew that this was not a day to hide in my bed because I am the adult here. I am the only one around to take care of them. I went straight into mommy mode. Late breakfast made, dishes and laundry done, had them do some work in their workbooks, packed up our beach bag and headed outside with them. We played football for about an hour in the sand. I broke up the fights and arguing over plays. At one point, Liam told me I cheated at the game. I laughed at this and told him it was impossible to cheat at a game you were playing, when you didn’t know the rules. All this football talk had my head spinning and I was penalized for a play that I had no idea about. I was a good sport, but geez! That brother of yours, Liam, is a competitive little kid. He was so serious about the game. Quinn did his usual laughing at everything and Liam ended up tackling him to the ground and proceeded to throw sand in his face. That was the end of the football game.

Quinn wanted to swim in the pool but Liam did not. I took Quinn up to swim as I watched Liam from the pool, digging in the sand all by himself. It made me sad. He didn’t stay at the beach long and soon came to join us at the pool. I swam and played Marco Polo with them, I let them both get on my shoulders as we splashed around in the water. I got out after a while to warm up. That’s when I saw him. The little boy who looked like a carbon copy of you, except with dark hair. He had your same piercing blue eyes and delicate features. He was in the little pool, that you swam in just 2 years ago and he was about your same age then. I almost threw up as I watched him do the same things you did in that pool. He jumped off the edge, into the water, completely fearless just as you were. He threw a toy my way and I bent down to get it for him as the Nanny apologized in Spanish. The dad sat on the sidelines, working away on his laptop. I started to cry and it took everything I had not to walk up to that dad and ask him to please just open his eyes and to play with his little boy. Not out of judgement, but out of the sheer innocence and beauty of watching his baby boy play so carefree and innocently. It was such a painful gift for me to see today. I swore as if I was staring at you. This was me, 2 years ago, in that pool, playing with you. I sat there and watched the little boy for a good 15 minutes and then decided that I couldn’t take anymore. I gathered up your brothers and we headed upstairs to the condo. I took a shower, told them to get dressed so we could go out to dinner. They didn’t want to go, but I had to get off of this island for a bit.

We ended up at a pizza restaurant and Quinn said he had remembered being there with you last year. He was right. His memory amazes me. I sat with your brothers and we talked about a lot of things. About life, about you, about the importance of things. I asked them what the most important things in life to them are. They both said you. I said yes, they were right. I also told them about the importance of helping others and the importance of always taking care of each other. I told them how lucky they were to have one another. It was a nice dinner with them.

After dinner, I took them to Target to spend their money that they have saved up from their birthday. We decided to get some movies to watch tonight. As we were leaving Target, your brothers were smiling and so full of giggles. They both told me thank you and Liam stood up on his tippy toes to give me a kiss on the lips. I was instantly taken aback by the happiness I saw in his eyes. He has missed me. I have missed him. I tried to let myself get caught up in the moment but I just couldn’t let go of the pain. I’m constantly fighting with the pain that refuses to leave my side, even with the beautiful Target moment that happened tonight.

Once we got back home, we popped in a movie. “Little Fockers.” All 3 of us thought it was funny and you know what a sucker I am for that Robert De Niro guy. I told your brothers all about him and how they could watch one of my favorite movies, “Casino,” when they turned 15. They wanted to know what they couldn’t watch it now. I told them because it wasn’t appropriate for their little eyes or ears. They have plenty of time to learn about the amazingness of Robert De Niro. All in due time, my little one.

All is quiet here except for the screaming inside of my head. Everything I did today took so much energy and effort on my part. Trying to nurture two little boys, when you have absolutely nothing to give, is hard. I mean really hard. I gave it my all today. I gave them everything I had which seemed to be more than enough. I made sure they both had a good day and put myself on hold. I don’t have a choice right now. For this week, while your daddy is gone and I am alone with the boys, I have to put myself on hold. I cannot stay in bed all day, I cannot scream, cry, or break dishes. Thank god that I am a calm person by nature. I never knew how much that would really pay off for me in life. It certainly has now. If I didn’t have my calmness, I would be totally screwed. Speaking of calm and screwed.

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!FUCK YOU,CANCER!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Yeah. I’ve kind of been holding that in all day. I haven’t be able to run in a couple of days so that needed to come out. It almost made me feel better, but not really. I’m still on this Neuroblastoma website that is kind of like a support group for parents. I get emailed with things during the day as the questions go to everyone who is in the group. Sometimes parents are  asking for advice on treatments, hospitals, doctors, sometimes new children are asking to be prayed for, sometimes prayers are asked for kids like you, Ro, when you were close to death. I cannot seem to unsubscribe to this server list and as much as I’ve tried not to…. I may be borderline obsessed with it. When I see a kid on there, same as you, Stage 4, I’ll go over all the details and protocols that they are doing than I’ll usually end up screaming at your daddy, “Why didn’t we do this?” I know this is not healthy, but I’m like a freaking crack addict except my drug of choice is Neuroblastoma. A mom called me from this list and has asked me advice for her son, who I sat across from at Sloan. Her little boy, Jaxon is not doing well. I told her to get contact Dr. Gisele Sholler to get him started on the Nifurtimox trial asap. His disease is progressing rapidly and he is having a hard time walking. Sounds so much like you. She also asked me about the radiation to help his pain. I told her to start that ASAP. We have all learned that time is the last thing on your fucking side with this disease. I also told her about Dr. Mosse at Chop. Because she is a GODDESS and Neuroblastoma should be scared to death of that woman. I have a feeling about her and the way she is going to revolutionize the treatment for this disease. I hope that woman gets everything and more in her life that she has ever wanted. I know you will be watching out for her, Ro. I’ll never forget the look in her eyes when she had to tell us you couldn’t do the treatment because your MIBG activity was too active and because of how full your bone marrow was again. She locked eyes with mine and wouldn’t let go all while having to deliver the most awful news. I’ll never forget anything about that day. The rain that started for a few minutes after she told us. Daddy’s tears. Me, who could do nothing. I couldn’t cry because Daddy was crying and I had to hold it together for him. It was only later, after I left the room to talk to Dr. Mosse about some other questions that I had that I allowed myself to cry a little. FUCK. That quality of life word kept coming up. What the fuck does that even mean?? I had just gotten so used to all the cancer lingo and now this new word was being thrown in my face over and over again. It seemed like a nice little term, all wrapped up in a pretty package, and then you go to unwrap the bow, and “POP!!” That big “quality of life,” word is basically a nice way of saying “You’re FUCKED.” Well, that’s my interpretation of it at least. I’m not here to sugar coat anything, people. I’m not here to tippy toe around the fact that everyone knew we were fucked, but you know you can’t give up on that whole “HOPE,” thing. Even I couldn’t give up on it until that Mother’s Day when I knew your little body was failing you, Ro. It was too late to get you to San Diego. Our time had run out. FUCKFUCKFUCKFUCKFUCK. I am so sorry. You know I would have taken you to Switzerland if I could have. We would have taken you anywhere. But your little body couldn’t take it anymore. I know your soul wanted to fight on, but we had to listen and respect what your body wanted us to do. And it was tired. And you were tired. And it was time for you to just go to sleep; just like I asked.

I don’t remember how I even got started rambling on and on about the above things. I’m waiting for the day that all of you lovelies just up and disappear because 1) You’re going to get tired of hearing me talk about the same things over and over 2) because you just want to go on with your happy lives or 3) because this story is just too sad and dark, or I use too many swear words. If number 3) applies to you, then peace the fuck out. Somebody sent me a super rude email a few days ago. I’m going have to start a file for “The Haters.” It said things like…..” You are embarrassing yourself and your friends aren’t telling you the truth. You need to stop writing and write in a journal, because everyone I know has stopped reading what you are writing. And the people who are reading, are not moms. It is a joke that they are telling you how amazing you are.” I took the time to tell her, obviously she didn’t know any of my true friends, because that was bullshit and to also tell her that I’m glad she stopped reading this as well as her friends because this was not the right blog for them. They need to go seek out a blog about Unicorns, Butterfly’s, and Puppies. Then go blow it out their asses. You don’t like this reality? You don’t like these swear words? You don’t like my truth? The truth that anyone in my situation would be thinking in their heads, but are too scared to put it out there. Ohhhhh…. my bad. I’m so sorry to have offended you with all this reality. A reality, sometimes a death sentence that is handed out every year in the form of 12,500 babies, toddler, kids, teenagers. Yes, Yes, I agree. Let’s choose to ignore this and go back on living inside of our little bubble. I totally get what kind of people you are and I want NOTHING to do with you.

Through all of my pain, sadness, ranting, raving, anger, and swear words, will come something beautiful… I promise. Right now, I am thinking about the Butterfly Life Cycle. I feel as if now, I am in my little egg. In hideout… but plotting a plan. I will soon move into the Catepillar stage…. becoming somebody stronger and new….. I will then go into the Pupa Stage, where I will build my protective shield and completely transform. I will then burst with color while becoming the beautiful butterfly that I know exists inside of me. This beautiful butterfly will revile herself when the time is right and the perfect plan is in place to do some major ass kicking to cancers ass. This beautiful butterfly will still say the word, “FUCK,” when she feels like it though. Deal with it or go away. You have no idea how hard it is to go though what we are going through, even as you read this blog and think you do. If you don’t like what I’m writing, stop being offended and stop reading. Then go volunteer at a hospital in the Oncology Unit for a month and I will be waiting with open arms as you run back and tell me how sorry you are. Or go volunteer and feel nothing. No judgement there at all. But my arms will no longer be open to you. Go home and live your little sheltered life and forget about these beautiful children who have cancer or have died from it. Forget about Ronan. I dare you .

Also, the reason I don’t write in a journal and I choose to share all of this with all of you 1,248million and something people….. I started this as a way to keep everyone updated on Ronan. It started off that way for a while, but then this force kind of came in and took over. This blog pretty much took on a life of its own and being honest and open about everything felt good to me. It was therapeutic and I feel like I have such beautiful story to tell with Ronan; for as ugly as it may be…. just writing out his name for you all to read is beautiful enough to me. I want you to feel my pain, his pain, I want you to be inspired, sad, mad, offended, thankful, scared, educated,….. I want you to live this through me because I know Ronan will make you all better people, better moms, more appreciative, he will teach you the true meaning of life. If, you want his lessons that is. Free will here. Nobody is forcing anything. My ultimate goal is to have you all on our side when we raise awareness for Ronan and Neuroblastoma. Anyway you can help, whatever little thing you can do, even if it just means wearing his bracelet, commenting on my blog, or spreading his story around. That is such a beautiful gift to me. The power of people can be very persuasive. I believe we can make something amazing come from Ronan’s death, make him so proud and celebrate the way we did after we finished “Round 5,” of his chemo. It was just the two of us at home, celebrating. He ran out to the garage to the refrigerator where we keep our Gatorade, sodas, and beers. He came running back in, so excited with 2 cold Coors Lights in his hands. He goes, “Here mama!” “Cheers!” I was so shocked but it was so innocent and cute and he was so excited. I took those 2 Coors Lights in the middle of the day and opened them for us. We both took a couple of sips and then went on with our Star Wars Game. I’ll never forget that day. He seriously was so much older than 3. That boy always loved his beer. So much that Woody would have to hide it from him. Little devil.

I know Ronan. I know you were here for such a short time to teach me some things. Because I have learned so much in such a short amount of time from you. I’m just getting started. I can’t wait to see what journey you have planned out now for me. It is all in your hands. Everything that happens from here on out is due to you. You loved me too much to just walk away, to just leave me behind. We were one. We are one. I’ll follow you into the dark. I’ll follow you to China if that’s where we need to go. I’d much prefer Thailand though….. can you throw me some signs to get me there:) Let’s do this baby boy. Together forever. Your little body was just a shell, it was the most beautiful shell that ever lived on this earth but you know what is even more amazing? The soul that lives outside of that shell. So light, so free, so happy because you get to take care of all of us. You always wanted to be the boss and we pretty much let you. I promise to make you proud, Ronan. I know you would have not been offended by my potty mouth. Words are words. If anything we should turn the world CANCER into a swear word. That is the most offensive word that exists.

OK BABY. This may have turned into a little crazy night for you with all my blabbing about this and that. And no wonder they say you should never operate a car on this Ambien shit! You should not even be allowed to write on a blog on it! Whatever. Power to the Peeps of The Rockstar Ronan Fan Club. Whomever chooses to stick about, they are your truest fans. I’m not going to stop fighting until some drastic improvements come about and someday a cure is found. This is my promise to you RO. For you and all the other kids fighting for their lives. After this summer, it’s time to get our plan in place. Soccer mom by day. Maya’s Mafia by night.

I love you, Ro. My little “not spicy,” monkey blue eyed  brad pitt baby boy who would melt you with one of his infamous winks. Sweet dreams angel. I hope you are safe. You are forever loved.

  • Childhood cancers are the #1 disease killer of children – more than asthma, cystic fibrosis, diabetes, and pediatric AIDS combined.
  • Childhood cancer is not a single disease, but rather many different types that fall into 12 major categories. Common adult cancers are extremely rare in children, yet many cancers are almost exclusively found in children.
  • Childhood Cancers are cancers that primarily affect children, teens, and young adults. When cancer strikes children and young adults it affects them differently than it would an adult.
  • Attempts to detect childhood cancers at an earlier stage, when the disease would react more favorably to treatment, have largely failed. Young patients often have a more advanced stage of cancer when first diagnosed. (Approximately 20% of adults with cancer show evidence the disease has spread, yet almost 80% of children show that the cancer has spread to distant sites at the time of diagnosis).
  • Cancer in childhood occurs regularly, randomly, and spares no ethnic group, socioeconomic class, or geographic region.
  • The cause of most childhood cancers are unknown and at present, cannot be prevented. (Most adult cancers result from lifestyle factors such as smoking, diet, occupation, and other exposure to cancer-causing agents).
  • One in every 330 Americans will develop cancer by the age of 20. On the average, 12,500 children and adolescents in the U.S. are diagnosed with cancer each year.
  • On the average, 1 in every 4 elementary school has a child with cancer. The average high school has two students who are a current or former cancer patient. In the U.S., about 46 children and adolescents are diagnosed with cancer every weekday.
  • While the cancer death rate has dropped more dramatically for children than for any other age group, 2,300 children and teenagers will die each year from cancer.
  • Childhood leukemia (making up the largest group of childhood cancers) was once a certain death sentence, but now can be cured almost 80% of the time.
  • Today, up to 75% of the children with cancer can be cured, yet, some forms of childhood cancers have proven so resistant to treatment that, in spite of research, a cure is illusive.
  • Several childhood cancers continue to have a very poor prognosis, including: brain stem tumors, metastatic sarcomas, relapsed acute lymphoblastic leukemia, and relapsed non-Hodgkin’s lymphoma.

A Sea of Sadness

 

 

Ronan. Hi baby. I’m waiting to board my flight back to San Diego. It’s late. I had to leave you tonight and somehow I made it to the gate of the plane. I had an o.k. day. I kept busy and luckily I had enough things around Phoenix to do to keep me that way. I ended my o.k. day with dinner at my favorite restaurant, Chelsea’s Kitchen, with my lovelies, Tricia, Danielle, Marisa, and Stacy. It was a good dinner and it felt good to be with my girlfriends. Tricia took me back home after dinner and she and Marisa helped me pack up my things to get back to San Diego. I didn’t have much to pack, but they helped me with little things too like making my bed and picking up little things here and there. I kissed your urn goodbye and told you I loved you. I had a hard time leaving the bedroom where you sit, all alone in the dark. I didn’t want to go. Marisa left me with a hug goodbye and an I love you. I miss her so much. As soon as I sat down in Tricia’s car so she could take me to the airport, I started to bawl. I stared at your bedroom window and all I could think about was how you were never going to play in there again. Tricia pulled out of our driveway and held my hand. I cried all the way to the airport and said things out loud to her that I don’t really say to other people, but I think in my head all the time. She asked where I thought you were. I told her I didn’t know and how hard that is for me. She told me that she thinks you are always with me. In my heart of hearts, I think that too, but it doesn’t ease the pain any less. When we got to the airport, she insisted on coming in with me instead of just dropping me off at the curb. I didn’t put up a fight.
She walked me to security where we both cried, hugged, and she told me how she would never let me go. How we will get through this. How much she misses me. I just held her tight and told her I knew. I hate so much, that you, her first godson, are gone. I will never forget the day I asked her to be your Godmom. It was such a special moment in my life.  I hate how badly she hurts. She was with your Daddy and I when you came into this world. She was the one holding my hand with your Daddy as I screamed for another epidural. She saw how perfect you were after you were born. And then she stood with me as you were diagnosed with cancer. She held my hand through everything and watched as you got sicker and sicker, but refused to believe the worst. She watched the worst come true. She watched you come into this world and she watched as you left. Along with feeling the pain of missing you, I feel the pain of everyone else around me too. How can one person be given so much to handle in life?? How am I expected to survive this when not only do I feel like dying because you are gone, but because everywhere I look, I see nothing but sadness and tears in everyone else’s eyes. I am swimming in a sea of sadness and all I want to do is drown. I don’t even want to use the word, unfair anymore because that is such a weak word. This is beyond unfair. It’s mother fucking fucked up.
 Today, as I made it though the day without crying, I sat in the waiting room of my therapists office and I was going through all of my new emails. I saw one that was from Dr. Mosse from Chop. She sent me a real, heartfelt email that said things such as she hoped it wasn’t  too disruptive or painful to hear from her. She simply wanted to reach out and say hello, to let me know that you are in her thoughts as she comes to work everyday and thinks of you as she works harder to find a cure for Neuroblastoma. For something so simple and so little, it meant the world to me.  I started crying as I read her words and sent her a quick email back to thank her for taking the time out of her very busy life to check in on us. I told her how I am struggling and a big part of this comes from the what if part of if we would have chosen her path, for your treatment. I told her that I will always second guess our decision. I told her how I was sorry because I didn’t listen to my heart after our first meeting with her. When we first met Dr. Mosse, I sent Fernanda a text that simply said, “It’s her. She’s going to be the one to save our baby.” Then we went out to New York and met with Dr. Kushner, whom I really liked. Whom I really believed too. So, I shoved my “gut,” feeling down as far as I possibility could and ignored what was in my heart. I will always wonder, what if. Your daddy and I have gone over and over this. He is sure if we would have went to CHOP, that your outcome would have been the same. The bottom line is, we will never know. We will never know and you are gone. Something has to be done about this. Someday, a cure has to be found for this disease and it has to be understood because no family should go through something as horrific as this.
Tonight, I feel weak, scared, and sad. Tonight, the feeling is back like I cannot breathe. I would like to go to sleep and never wake up just the way you did. Tonight, the pain of being on this airplane all alone, without you, is just too much. Where is my Bryson friend when I need him? There are no Bryson’s on this plane tonight. It is full of people. People who are busy. People who are happy. People who are unhappy. People who are unsatisfied. People who don’t care. People who have no idea how many children die of childhood cancer everyday. People who have no idea what it means to truly feel, to truly live, to truly be grateful for every little thing they have in their lives. At one point in my life, I used to be like these people. Unaware of how precious life TRULY is, because life just WAS. It was a given, not a gift. I never took the time to fully understand how precious life really is, how precious every moment in life, no matter how good or bad truly is because whatever it was…. I was alive and I had 3 healthy children and I never second guessed that things would be any different. Now I know. I know because you are gone and I am the closest to knowing what it feels like to being dead, while being alive. I don’t want this life without you, Ro. But I also respect that this life is not my choice and I cannot decide when it is my time to be with you again. I respect that I have to take care of your brothers, your daddy, our friends, and family. I have a lot of people who I cannot let down. I cannot let you down either.
So sorry for the pity part tonight, my love. I will push though this, pick my head back up, and stay focused on the job that you have given me to do. I refuse to fail you. I love you, Ronan. To the moon and back baby boy.
I wrote that last night, Ro. But was too tired to finish it. I had a hard day today. We spent the day moving out of the unit that we have been in for a month and into a new unit. It’s a different building, overlooking the bay, and it is pretty much the same layout of the unit that we stayed in over here when you were just a year old. This has opened a floodgate of memories for me and I have spent the majority of the day crying. As I was unpacking the car with your daddy, he noticed my tears. He picked me up off the ground and held me for a long time. I hate everything in our new life that we are doing without you. I hate that today, I unpacked the car without having to worry about you running around crazily in the parking garage, as I pictured myself having to chase after you to make sure you wouldn’t be hit by a car. Today, I had none of that worry and it is all I wanted.
Once we got settled in our new place, we went into town to eat. We ate at our favorite Burger place here, just the 4 of us. You would have loved the chocolate milkshake that I shared with Quinn. It had a ton of whipped cream on it and your brother laughed as I fed it to him. You used to LOVE your whipped cream. After we had our lunch, we ran into the grocery store to get a few things. As I was walking through the frozen food aisle, there it was. Your Fettucini. I felt like passing out on the spot. I stopped and stared at the Marie Callender’s Fettucini Alfredo that you lived off of while we were in the hospital at PCH. You always hated hospital food and I cannot count the times we would cook this in the microwave together and how happy it made me to watch you gobble it all up. It was the one thing I could always count on you eating. I loved feeding it to you because of all the calories it had in it. I’ll never be able to look at that Fettucini the same again. I’ll never be able to look at a lot of things the same again.
We came back to our unit and tried to get unpacked a little more. Mimi and Papa came over to take Liam and Quinn to see “Cars 2.” Your daddy tried to talk me into going out on a date with him, but I couldn’t muster up the energy to go anywhere. I was just feeling too sad today. I did get out for my nightly run though. I did my usual route; a fast 6 miles. Around mile five, I started to feel sick to my stomach. You know me and my notorious throwing up ways if I run too hard or too fast. Luckily I found some nice bushes out of sight from anyone and out came my one meal of the day…. lunch. I finished the last mile and now here I sit. I still feel sick to my stomach and I’m sure it’s from the combination of you being gone and pushing myself with my 8 minute mile tonight. I had a lot of anger to pound out on the pavement and it seemed as if my feet were on fire. Too bad my body decided that it was too much because it felt pretty good. I haven’t run in a few days which always makes me extra anxiety ridden, depressed, and leaves me with extra nervous energy that I don’t need. I had to get that out tonight otherwise I was going to end up doing something drastic; like eating a bag of donuts.
Alright my little man. This is all for tonight. I miss you so very much. Sweet dreams and I hope you are safe.
P.S. A very Happy Birthday to my dear Laura Leigh Chase. My friend since we were 14. My friend forever. I’ll never forget the day in our 8th grade P.E. class when we got “married.”  It was the most gorgeous, sunshiny day outside and we skipped off, holding hands, and went to pick the flowers on the side of the hill instead of participating with the activity that we were supposed to be doing. Instead, we decorated each other with flower hippie headbands and had some pretend to marry each other ceremony. 17 years later and here we are, mama. I am so proud to still be able to call you one of my best friends. I love you. And I am so happy you married Kasey in real life. Have a beautiful day my dear, sweet friend.
xoxo

Is an o.k. day going to be as good as it gets?

 

 

Ronan. It was an o.k. day without you. I had to work for it though. I had to work hard to make it that way and as much as I didn’t want to, I did. I spent the day with your brothers and our cousins. We went to breakfast this morning and then the 4 boys ran off to the Rec Center to play basketball. As we were walking back to get the boys changed, I looked back to make sure we had everyone with us. I almost said out loud, “Where is Ronan?” But I caught myself before those words came out of  my mouth. I so expected to see you running behind all of us. I sat out at the pool with Stacy and her little troops while the boys played basketball. It was weird sitting there in the sun and not having anyone to worry about or take care of. Gosh, a year ago…. this would have been paradise to me. Laying in the sun, headphones on, a book to read, and time to just be peaceful with myself. Today, I hated every second of it. I wanted nothing more but to be worrying about you in the water, to be watching you running around, and splashing about. I would have been so happy to have had the privilege to wrap you up in your little towel after you had gotten out of the cold water. To have held you close to warm you up and then I would have taken you up to our room for your lunch and nap time. We would have napped together like we always used to do. Instead, I watched my dear friend, Stacy, do all these things with her 3-year-old, Kennedy. She is such a little firecracker and reminds me so much of you. She had a total meltdown at the pool which I of course thought was adorable. It was a combination of being hungry, tired and a newly 3 year old. She came and laid down on the lawn chair next to me and put her little head down. I went over to her and rubbed her back for a long time and she calmed down and let me do this to her for about 20 minutes. She then popped up and was fine. It was so sweet but it still hurt. I wanted it to be you that I was comforting, but the fact that Kennedy is slowly letting me into her little world feels good to me. We spent the rest of the day at the pool and I then took your brothers, Jake and Carter over to the grocery store to cash in the recycling bottles that they have saved up. They get 5 cents a bottle and were so excited about it. We took a garbage bag full of bottles over to Vons and I think they ended up getting about 3 dollars out of it. It was important to them and I think a very good life lesson to learn about taking care of our environment and responsibility. They were so excited and happy to spend their money at the vending machines at our condo. All of us adults have been laughing over the 4 boys and their obsession with the vending machine here. It’s as if they have never seen one in their life. They live for meeting up there and spending their change. Such little things but so important to boys who are growing up way too fast. Watching how independent Liam and Quinn are becoming is hard for me. The fact that they are starting to not need me so much anymore because they are big enough to go down to the vending machine alone feels strange. I’m so not used to having things this way. I feel like in the blink of an eye, they have become little men. In more ways than one and unfortunately a lot of that comes from losing you. It’s not fair and it’s not right. I don’t want them to ever feel like they have been robbed of their childhood which is why I am trying to encourage them to be boys and  to learn, explore, make mistakes, but also learn right from wrong. They both have such good heads on their shoulders but when they do things like take a stick and put it up a vending machine to get candy out, and then run to tell me about it, I’m not going to get mad. I want them to be boys in every way possible. Just as long as they also learn there are consequences, but honesty will also go a long way in this family. This is all stuff you should be learning too, Ronan. Your brothers would have been the best teachers to you. I’m sorry everyday of my life for them and for you. I will love them so much more because of your absence. Even though it feels like I have a connection to nothing or anyone, I know it will slowly come back with them. It is days like today that give me that hope.

We had Stacy and her kids over for dinner. Afterwords, we drove over to Pinkberry for Frozen yogurt. I had an unexpected feeling of happiness wash over me when I went to cross the street with Stacy’s little girl, Kennedy, and she grabbed on to my hand and we ran across the street together, with our hands intertwined. It reminded me of you. I sat and watched her devour her frozen yogurt and thought about how much the two of you would have loved each other. I had a flash of seeing you two together and the mischief you would have caused. I ached for it so badly. She loves Liam and Quinn and I know she would have been crazy about you. You two would have been two peas in a pod. After our frozen yogurt, Stacy dropped us off and Liam and Quinn were pretty tired. They fell asleep fairly quickly, almost before I could even tuck them in and we said our good nights to you. They are both so tired from their day of swimming, basketball, and playing in the sun. They miss their cousins who left to go back to Phoenix today already. The good news is, there is a new set of cousins who arrived today so I have no doubt they will be just as entertained.

I ended my night with a phone call from my friend, Doriet. I know you remember her little girl, Esther, who passed away just six days before you. We had a good talk tonight and both seem to be in a similar place; struggling a lot but we both know we have to go on. She had the same kind of connection with her little girl that I had with you. One so strong and deep that you cannot even explain it. You two were such similar souls and I feel that way about her mom and I. We loved the two of you so deeply that is was almost not human. This is one of the reasons I know that we have such a special connection. I think about Doriet everyday and Esther too. I hope you two have found each other and are playing away. Doriet says Esther leaves her signs everywhere. She knows Esther is still with her much like the same way I know you are still with me. I want to go back out to New York maybe in the fall to spend some time with her. I want to go back out to take a picture of you to Dr. Kushner and make him look me in the eyes. I want him to acknowledge the way he handled us was not right in the end. I’m going to lose it if I don’t get to close that chapter in your journey. I really wanted to run in the Marathon for Fred’s Team in NYC next year, but I am so pissed that I don’t even know if I can support his cause. How can I support a man who could so easily just brush you off. I don’t care if people tell me to just let this go because I’m not going to. Parents who have just been told the news that I had to be told, deserve more than that. I don’t care if this doesn’t change him or the way he does things, but he is still going to hear me. I need to know that a fraction of him cared and is human, otherwise I am going to forever think we made a mistake in letting him treat you. Maybe he wasn’t worthy of caring for you, maybe it should have been Dr. Mosse all along at Chop. Fuck me. I told Fernanda the second I met Dr. Mosse that it was her,  that she was going to be the one to save you. It was my gut feeling. But then we decided to go with Dr. Kushner because he said he would do whatever it took to save you. He convinced us. Well, he didn’t. He threw us away like an old rag and this will never sit well with me. I’m pretty sure, no matter what road we chose, your outcome would have been the same. At least that is what I tell myself to get though the day. At the end of the day, your dad and I had to pretty much navigate your treatment ourselves and we did the best we could. It should not be this way. We are not fucking doctors. The fact is, there is no cure when there should be. It’s a matter of luck and you got the short end of the stick my baby. I’m sorry a million times over. I’m sorry for you and my heart breaks daily for Doriet. I love her and I know how badly she is hurting because I am right there with her. It’s not fair and it’s not right. When the time is right, I will go and be with her and we can grieve together because that is one of the bonds we have and it is too strong to let it go. It needs to be done for the two of you and for the both of us.

I love you, Ronan. I’m tired tonight and I miss you so much. I will sleep with you in my heart as I do every night as I cuddle up to your blanket. Thank you for helping me to have an o.k. day today. I really needed it. G’nite my sweet, beautiful boy.

xoxo

 

No more plans…..just a new adventure

We started off the morning early as we got up and ready to take Ronan to St. Joe’s for his CT scan and RT. Dr. Maze met us at the Ryan House and then over at St. Joe’s just to make sure we were taken care of. He knew Ro did not need anesthesia, but came anyway to be supportive. After he got us settled, he left and we sat back in a room and waited for the CT scan to begin. Ronan did amazing, as always. He held perfectly still as they took pictures of his little body to decide where they would do the radiation today. After looking at the CT scan, Dr. McBride decided that Ronan’s pain is coming from his pelvic and hip area as the bones there have been eaten away at due to the Neuroblastoma. It is with radiation, that the neuroblastoma cells will be killed in hopes that the bone can heal back and Ronan’s pain will get better.

Thoughout this blog, I’ve always had a plan as far as what we would do with Ronan and his treatment. We chose what we thought was right, and I don’t have any regrets in the choices we’ve made; but it sucks when the plan you think you have in place goes arye. I’m done making plans for Ronan. We are going off for another adventure instead. This time, as long as Ronan remains stable, we will be leaving for San Diego on Sunday. Dr. Sholler has agreed to try something else for Ronan and we as parents, have decided to give it a shot. What do we have to lose? At this point, nothing. We are fully aware of the risks involved, but this is not the time to sit back and do nothing because we are afraid. I am more afraid of sitting back and watching Ronan get worse and worse as the days progress. Woody has been on the phone all day with different doctors all over the states and most seem to think this is worth a shot. We will be admitted to The Children’s Hospital of San Diego on Monday and we are praying that all goes well and Ronan can start treatment on Monday or Tuesday.

Here is a little info about Dr. Sholler and what therapy we will be trying for Ronan:

Dr. Sholler’s research focuses on new therapies for neuroblastoma and medulloblastoma. These neuronal tumors continue to be therapeutic challenges in pediatrics. Dr. Sholler has shown that Nifurtimox increases oxidative stress in neuroblastoma and induces cell death and decreases tumor size in xenograft models of neuroblastoma and medulloblastoma. Nifurtimox also decreases AKT phosphorylation increasing the cells sensitivity to chemotherapy. She is presently studying the mechanism of this drug, drugs effecting metabolic regulation and oxidative stress, and determining the best drugs to use in combination.

Dr. Sholler has completed a Phase I trial of nifurtimox. She has opened and is currently enrolling in a Phase II trial of nifurtimox in combination with cytoxan and topotecan for relapsed neuroblastoma and medulloblastoma patients. She will be opening this trial at other sites in collaboration with Dr. Roberts at Children’s San Diego, Dr. Ferguson at St. Louis University, Dr. Zage at MD Anderson Houston, and Dr. Eslin at MD Anderson Orlando. Within this consortium she hopes to bring new therapies through research to children with relapsed neuroblastoma and medulloblastoma.

Dr. Sholler’s lab is working in collaboration with Dr. Jeffrey Bond at the University of Vermont to understand the genomic differences within patients neuroblastoma cells. Understanding the specific biological profiles of patients neuroblastoma will lead to better understanding of the most effective treatment.

I am trying not to get my hopes up, but this just has to work. Our hearts were so broken when we left Chop as we were so sure MIBG therapy was the answer for Ronan. There are a couple of doctors who are advising against doing this, but there are also a few who are saying, “Why not.” Exactly. I’m not going down without a mother fucking fight for my son. I am not going to let him down as he deserves to be fought for like I’ve never fought before. Woody and I are both in total agreement on this; Woody is fighting just as hard, if not harder for our son. We will do anything we can at this point. There is nothing worse than sitting here, watching Ronan die. Because that is what he is doing. At least if we get him to San Diego, and try this clinical trial; the worse thing that can happen is ultimately, what is happening anyway. I don’t want him to die peacefully at The Ryan House while I sit here and just watch and wait. That’s not how this is going to go down. It’s not in our nature and it’s not in his.

As I have said before, we will not be cruel to Ronan and his needs. If for some reason, his pain gets worse within the next few days, we will of course re exam our decision. As of now, he is stable, his pain seems to be controlled, so we are going to take a huge leap of faith and do this. But it is not a plan at all. Plans always fly out the window. We are just following his lead on this journey of his and will do whatever we feel in our hearts that Ronan wants us to do. We want to take the twins with us, as we feel this is no time to be apart as a family. We need to be together for this part of Ronan’s journey. I’ve had enough of leaving them behind and so has Ronan. As long as we are together, Ronan will be happy and that is all that matters right now.

I got out of The Ryan House today and went to the twins’ baseball game. It was hard for me to be out in the real world, as always, but I did it for the sake of my twins. It’s hard for me to hear the conversations of others around me now as I hear bits and pieces of people complaining about the petty things in life. If they only knew how good they all have it. I kept thinking to myself about the baby boy whom I left back at The Ryan House, who is so sick with cancer and how we as parents, have been told that there is no chance for him to be cured. How am I supposed to go out into the real world anymore without it hurting so badly? All I wanted to do was run back to Ronan, to kiss him for the millionth time, tell him how lucky I was to be his mama, how sorry I was that he was hurting so badly, and promise him that we would get him better. I have been making this promise to him since day one. I did today for the sake of my twins’ but the sadness I felt while I was there was unbearable. Ronan should have been there with me, running around, getting dirty and watching his big brothers, play ball. I would give anything in the world to have those carefree days back with him.

I cannot sit here and wish for the past back though. The past is gone as we know it and we have to focus on the here and now and what we need during this time as a family. What we need is to be together and to continue to fight for Ronan. Each day that we don’t, we get closer and closer to losing him. He is just too special of a little boy to let go so easily. This next part of our journey is going to be hard, due to Ronan not feeling well anymore; but I know as a family, we can get though it. I’ve always loved the saying, ” Adventure is the spice of life.” It’s time to take on this new adventure and tackle it together with all the love in the world that surrounds us. I’m not giving up on hope, love, faith or Ronan. He is my baby and I know him best. I am going to listen to my heart and soul on this and we are going to turn this thing into the most positive adventure yet. If my son is going to die, it is not here and it is not now. I’m not accepting that this is the way he is supposed to go.

We have to be at the clinic early tomorrow for blood work and I’m assuming platelets for Ronan. I am also going to try my hardest to go to the twins’ school for the Mother’s Day Tea. Their little hearts will be broken if I do not show up. I have to be there for them and as hard as it is for me right now due to never wanting to leave Ronan’s side; I cannot let them down.

Ronan is sleeping peacefully so I am going to snuggle up to my little bug. Thank you all for sharing our story and loving us so much. I’ve tried my best to keep up on your comments as they mean so much to me. I am in awe of the love that surrounds us and will be forever grateful and inspired to be a better person because of all of you. So many of you love us without even knowing us. You’ve taken a leap of faith on our family and I feel you fighting right along with us. Thank you so very much. Sweet dreams my darling friends.

xoxo

How could my love not be enough?

Who would be so cruel to to this to us? To him? I don’t want him in the arms of “Jesus.” I only want him in my arms for the rest of his life, which should be a long life, where he belongs. I don’t want to watch this cancer eat away at his little body while I can do nothing about it except for sit back, watch it happen, and keep him as pain free as possible. I don’t want to have to go home and explain to my twins that their baby brother is hurting and that the medicine is not working. How the fuck am I going to do that? This baby is their entire world and he completed our perfect family. There was always something missing until he came along. He has added so much happiness and laughter to our lives and now we just get to sit back and have it taken away from us?  That is bullshit and I am so mad. If prayers really worked, my son would be healed because I have been on my knees praying since the day this happened, day and night, night and day. And I know thousands of you have done the same thing as well. Why isn’t it working? Who would be so cruel to take away this precious gift of mine? How is possible that there is nothing left to do except enjoy the time we have left with him? I feel like a failure. I failed my son. How is it that my love is not strong enough to save him because I have never loved anything more in my life. I’ve  fought so hard to keep him here and now what? It doesn’t matter because as Dr. Mosse said, we may only have weeks left with him. How in the world can this be true? What am I going to do with not hearing the little pitter patter of his feet running around the house? What am I going to do not having his big blue eyes to look into? How am I not going to hear him say, “Mom! I love you to the moon and back?” How am I not going to crumble up and die?

How do you plan a funeral for your 3-year-old? I’ve already started that process, sending out crazy texts to Tricia and Fernanda blabbing about how this has to be something different, it cannot be a circus, it has to be small because Ronan never liked a ton of attention. Nobody is to wear black, everyone has to wear something colorful and bright because that is what Ronan brought to our world. All I want is a miracle and to not have to think about any of this, but we are facing our worst nightmare and have to be prepared as we do not know what the future holds. If the future holds my Ronan leaving this earth, well that is something more than I will know who to handle. And I don’t want to hear about him “earning his fucking angel wings.” I HATE THAT SAYING. No child should ever have to earn their wings; ever.

I spent most of today cuddled up in bed with Ro. He was back to his feisty self, playing and had his bossy boots on all day long. We have his pain controlled. Woody and I both spent the day taking turns breaking down. We seem to balance each other out so well. He would cry and I would be strong, and vise versa. He sat and stroked my hair while telling me that there is nobody he would rather go through this with than me. We made this cancer with Ronan such an adventure, enjoying New York and taking on the world while never letting go of hands. Somehow, our love for each other will get us through this. It just has to. My husband is too good of a man and I refuse to fail him too, but all I really want to do is dig myself a deep hole and never come out.

I’m sorry . I’m not very inspiring tonight as I just feel a ton of anger. I really need to punch something because this is so not the way I saw things going. I was always so sure that Ronan would beat the crap out of this disease. I still feel that way. I am not leaving his side, ever again. I’m not going running, shopping, to the movies, or out of my fucking house unless he comes with me. I will not miss a second of being with him. I will hold him and love him and kiss him until he gets annoyed and tells me to knock it off like he often does. I will not give up.

We are flying home tomorrow thanks to the most beautiful family that has been put on this earth. You know who you are my dear, sweet girl and I hope you know how grateful we are. Please give your hubby an extra big smooch tonight as you two are absolutely the most selfless people I have ever met. Who else in the world would make such a thing like this happen at the drop of a hat? Nobody. It is because of you, that we will get to bring our very sick, precious boy home without the eyes of strangers on us and with him being as comfortable as possible. Thank you, Dolly. I love you.

As we get home, there are so many of you that we would like to see, but we have to keep things at home as calm and peaceful as possible. So, if you would like to stop by, please call first and don’t be offended if we tell you no. It’s not out of anything but love for our son and we have to make sure he is as comfortable as possible. A lot of people and house guests seem to do nothing but stress Ronan out and that is the last thing we want to cause. We need this time together, more than ever. And please, if any of you see our twins, don’t mention anything about this to them. Woody and I have to be the one’s to sit down and somehow find the words to explain this all to them. This breaks my heart more than anything. We will do our best as parents but nobody can prepare you for the conversation that is about to come. Just thinking of the look in their eyes is enough to kill me. Our family was never meant to be a family of 4. NEVER NEVER NEVER.

I am so sad. Sad beyond words. All I want is to get Ronan home and back with his brothers. Back to his house. No more clinic visits or hospitals. Enough is enough and the only things that will heal him will be a miracle from above. If my love could save him alone, we would not be in this situation. I will never understand how my love has not been enough.

Thank you all for your continued love and support. We will keep fighting and do whatever it takes to make Ronan the happiest little boy on this earth. We will never give up on him.

Love you all.

xoxo

And P.S. FUCK the royal wedding. Really, 16-64million dollars? That makes me sick to my stomach. This world needs to get a clue as to what is really important in life. All that money could be spent in such a better way, like saving the lives of millions of children. I’m embarrassed and ashamed for them. I hope their child never gets cancer and they never have to deal with something like this. With all that money, a cure could be closer to being found.

Life’s no way to treat an animal

It is with a heavy heart tonight that I tell you we are returning back to Phoenix. We came out here, full of hope; yet Woody and I both knew that it was going to be a tough road to travel. We met with Dr. Mosse about starting MIBG therapy to try to get Ronan’s disease under control; but with much sadness in her eyes she told us that this therapy would never cure Ronan or much less do anything for him. I knew this morning before we left the RMH for CHOP that there was little hope, as Ronan’s pain is getting much worse. I do not in the least regret coming out here. It was something that Woody and I, as parents had to do to make sure we could know in our hearts that we tried everything we could for our son. I believe it was a gift to have Dr. Mosse deliver this heartbreaking news to us, as I would not have wanted to hear it from anyone else. I cannot even express to you what an amazing woman she is and I am so thankful that she has had the chance to spend a little time with our son. I know she will work harder because of him and will one day, find a cure for this disease. After Dr. Mosse told us that the treatment would not work, Woody broke down and I went into complete shock. I could only focus on holding my husband, watching his tears, and just as he started crying, it started pouring rain outside. The rain only lasted about 5 minutes on this sunny Philly day. I know the reason for this rain.

The rest of today has been a blur. We have Ronan’s pain under control and are planning to head back to Phoenix on Friday. Woody and I have spent most of the day crying, talking, and whispering together. We have made promises to each other that we will keep. As Woody said, “Cancer will not take anything more from us than it already has.” It will not destroy our marriage, our family, our boys. We will take control over the things that we can. While Ronan has been awake today we have been very hush hush about everything, as he does not need to know that our hearts are broken. We have made phone calls to a few people, but that is about the extent of the phone calls today. All of this is just too much. Woody and I have both decided that we hate the saying, “Everything happens for a reason.” There is no reason for something like this.

We have some tough decisions to make yet I have no doubt that our little man will guide us though. We will do what is best for him and respect his body, his life, and his time. I have spent the entire night curled up next to him, singing to him, whispering sweet nothings in his ear, and kissing his little face. Ronan has filled my life with so much more love than I ever knew existed. The almost 4 years that I have had with him have been pure magic, bliss, and we have an unbelievable bond that will never be broken.The thought of being without him is eating at my soul, as he is the best thing that has ever been mine. I don’t know how I am going to go on without him but I have a feeling my twin 7 year olds will be great helpers. They deserve the best life possible after living through this nightmare and Woody and I are determined to give it to them.

I am not brave, strong, or fearless anymore. I am just a mom. A mom to the most beautiful boy that was put on this planet and whom I will think about every minute of everyday for the rest of my life. Being his mom, was the best thing that I have ever done and will ever do.

Tonight, I asked to speak with Dr. Mosse one more time. We went alone in a room and I told her, as a mom, I had to know in my heart that I had done absolutely everything possible for Ronan. She told me I had done that and more. I begged for clinical trials, asked about things I had heard about in Germany, Canada, homeopathic hospitals…. asked for anything. She told me if there were anything, she would have done it for us. I asked if we made mistakes on the choices we made as far as his treatment went. She said absolutely not, and that we couldn’t look back. His disease is everywhere and spreading so rapidly that the best thing we can do now is just love him like we’ve never loved him before. I cried to her, asked a few more questions, and thanked her for her compassion and grace.

There are not enough drugs in the world to knock me out or make me numb to this. Nor would I take them if there were. As of now, you know I am still hoping for a miracle and not giving up. I will never give up on Ronan but I will respect him and his life. He is going to lead me to where he needs to go, when it is his time. I, as his mother, could not ask for a braver soul to surround me at this time. I will not leave his side until he is ready for me to go.

Please continue to pray for Ronan and our family. Please don’t take anything in your life for granted. And please don’t send any mother fucking flowers. I told Fernanda tonight, if anybody sends me flowers, I will lose it. If you feel compelled to do anything, send a card, write on my blog, spread around Ronan’s story, ask for prayers, donate blood or platelets, or donate to his foundation. I will do something amazing with the money we are raising and I know it will come to me when the time is right.

Thank you to all of our friends and family who did not disappear during this time and who chose to surround us with the love that we so need. Thank you to all of you who love our baby even without knowing him. I am so thankful for all of our nurses and doctors who have stood by our side and who continue to do so. Please send us your strength to get though this. We are a strong family, but we are about to walk through HELL, even more so than the past 8 months. We have to come out the other side.

Love you all,

xoxo

THE CHOSEN MOTHERS

By Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit.

Did you ever wonder how mothers of children with life threatening illnesses are chosen?

Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation.

As He observes, He instructs His angels to make notes in a giant ledger.

“Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecilia. Rutledge, Carrie, twins, patron saint Gerard.”

Finally, He passes a name to an angel and says, “Give her a child with cancer.” The angel is curious. “Why this one God? She’s so happy.”

“Exactly” smiles God, “Could I give a child with cancer a mother who does not know laughter? That would be cruel.”

“But, does she have patience?” asks the angel.

“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it.”

“But, Lord, I don’t think she believes in you.” No matter, I can fix that. This one is perfect. She has just enough selfishness.”

The angel gasps -“Selfishness? is that a virtue?”

God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see…ignorance, cruelty, prejudice…and allow her to rise above them.” She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as if she is here by my side.”

I’m kinda liking this Philly place

First of all, the RMH here blows New Yorks out of the water. It is straight out of the movie “Benjamin Button.” Old, Victorian, and beautiful. The people who work here are so friendly, helpful and nice. Our room is not hospital sterile at all. It is very cozy and has two of the most comfortable queen sized beds. Holla for that!! No more sharing a tiny twin with Ro. I know we are going to get some good sleep tonight. Ronan has been in a really good mood. He took a bath and played with his Star Wars guys. I unpacked everything and thought to myself how easy it is to make anywhere we stay, a home, as long as we have a few essentials and each other. My friend, Stacy, seriously packed all of my stuff and Ronan’s as well. Wow. She should be a professional packer. She did a better job than I could have done. I told her I didn’t care what I took, and that less was better. I learned my lesson after the New York fiasco. Not making that mistake again. Woody went out and got the essentials. My coconut water, some regular water, Gatorade, and his contact lens stuff. I unpacked all of his things and set up all of his cords for his electronic devices. Felt good to do this for him tonight. He often gets lost in the shuffle and does so not deserve to be. It makes me happy when I can do the simplest things like unpack his bags. He always is so appreciative.

I sent my Mr. Sparkly Eyes a text tonight and just told him that I wasn’t scared yet because I know Ro can do this. His response was, “He will with your love.” I’ve thought this all along. I have such a bond and love for this child that I can get him through this hurdle and back to the other side. I just know it in my heart.

I was bombarded with so many emails today but I wanted to share my favorite one. It’s from my friend, Diane, Ed’s wife. They are the most amazing family. Her email brought me to tears. Thanks Di; you are such a wonderful woman.

Dear Maya – The Strongest Mom in the World!,

I think of you and Ronan every moment of the day.   From your writing and seeing you and Ronan together it is obvious you share a love that is so strong that only the two of you will ever know forever in your hearts.  As I read your posts I feel, and uniquely understand, your pain towards the path and people you are forced to encounter to preserve your special love – mother & son.   Along with all of your family and friends I wish that I could ease that pain, but I also know that will be impossible until Ronan is safe.

I believe that Fate, Faith, and Love are amazing guides.   Fate brings you to places that you never thought you could possible handle, and faith brings you back again from the edge.   Through fate and the unbelievable journey of life – I believe, you encounter the most amazing people, and live through the most difficult of disappointments.   I am so sorry that your MSK experience broke your spirit (however so briefly) and challenged Ronan’s path.  I do believe that it is all a part of each step to make Ronan happy and well.  What I have found from our own journey, is that Doctors are mere humans with many faults, and once in a while bigger brains.   Science and the human body fails us everyday, but we are sometimes shaken more by the failure of people and their inability to understand and empathize.   Dr. K – a scared coward – yes, but believe me…. not worth your energy, time and anger.   When you read back to your posts about your experience in NYC I trust and pray that someday it will be a memory forever etched in your mind as an adventure.  I can only hope you will forget about the doctors, and remember the sanctuary of the RMH, food, Dylan’s candy, FAO, basketball, friends and the comfort you felt in the city.   It is those memories that make NYC a place of peace for Ed & I.  Jack’s treatment and science failed us at MSK, but I left there knowing I would, and could do anything to fight for him.   You have done that!!!!  You are moving onto CHOP, maybe DC, VT, and always home to PCH and your family… but you have proven to yourself and Ronan that you have the ability too endure anything for love!!!

I always felt as if Jack was a gift given just to me.   His amazing life set my path and gave me forever strength.   He showed me what love was really all about.  He made me a better mother to Aidan & TJ, a fearless cancer patient, a devoted wife, a more understanding friend, a grateful daughter, a thankful sibling and I hope in some way a better person.     I know in my heart, you both will win!  You have already won by finding the strength to fight for each other.    You will continue to win as each path, hospital, doctor, nurse, treatment, setback, victory, adventure, gift, and smile, will lead you to an answer, life, happiness and peace.   My angel is watching over your angel on earth!!!!

All my love and respect,

Dianne

I’m super tired tonight and we are going to CHOP at 11 so it’s time to get some rest. Despite all of this travel and being away from home, Ronan is in a great mood. Tonight he said to me, “Mom, you’re so cute. I love you.” I always know when he says this to me it’s because he is happy. At this point, that is the most important thing to me. Him being happy will get us through this. I am going to work my ass off to keep him this way through this next part of his journey. Happy and pain free are my 2 biggest goals right now. I cannot look any further ahead than that.
G’nite all of you sweet people. Thank you for all of your supportive and kind words. You are all the best family/friends/fans we could have ever asked for. I wouldn’t be in such a good place right now if it weren’t for all of you. Please never forget that. As much as you all wish you could help more, you are helping me in ways that you will never understand. You make this road easier to travel. That is one of the hugest gifts I could ever ask for. Thank you for loving us so much.

Sweetest dreams!

xoxo

Happy Easter Ro baby

Oh Ro baby. Happy Easter. I’m not going to lie. It was a hard day today. At one point, I did not think I was going to be able to get out of bed. I wanted to spend the day hiding under my covers. It took me a few hours once I woke up, to get things started for the day. I was barely functioning. We planned on going over to Woody’s Uncle Larry’s house where all the cousins were going to be. In my head, I kept thinking, how am I going to face everyone? I’m way too sad. But I knew how much my twins were looking forward to it and I knew it would be good to be surrounded by our loving family. Woody and I got the boys ready and dressed and then got ready ourselves. Out the door we went and I turned my frown upside down; as best I could.

The day was spent watching the boys playing, laughing, running, swimming, and enjoying their cousins. Ronan even got a little wet and ran around as much as he could but stayed by my side most of the time. It was good to be with family on such a special day. There was a sadness in the air, but it was overcome by the beauty and strength of Ronan. I refused to let cancer ruin our beautiful day. Ronan was happy, smiling, and laughing while throwing water balloons at his cousins. Today, cancer did not win. Today, we held our heads high and enjoyed his little life to the fullest.

Ronan was ready to go after a couple of hours so Woody and I took him home while the twins stayed behind to play the rest of the day away. We came home and Woody ran out to do some things which left me here alone with Ronan for what I thought was going to be some quiet time. No quiet time allowed as I was told by him. He was all ready for a Star Wars battle so that is what we did. Fernanda stopped by to drop off some of her amazing confetti filled easter eggs which Ronan smashed over my head. She had her Brando with her and I wanted to just eat him up. Cutest thing ever. He was dressed in a tee-shirt, his skinny jeans, and cowboy boots. She has the most beautiful children and I was so happy they stopped by for a few minutes.

After Fernanda stopped by, I had texted Gay  earlier to tell her Ronan was really wanting to see Cal. She then came by about an hour later with her boys, Cal and Chet. Ronan was over the moon. They played and Gay helped me get a lot of the little things around the house put away. I am so thankful for my wonderful friends and the way they are handling all of this. They all refuse to give up and are more than rising to the occasion. I will never stop being blown away by all of their support and love. We are so blessed to be going through all of this with the most amazing people by our side.

I am finding laughter in the stupidest things these past few days. Not much is making me laugh anymore and laughing is one of my favorite things in the world. Woody has put on our “South Park,” DVDs. So stupid, vulgar, and immature…. but I have been dying laughing at them. Trey Parker and Matt Stone = Freaking geniuses. I am such a sucker for some dirty, foul-mouthed humor. Works every time. Even in my numb, fogged induced state of mind.

Tonight, we did normal family things. I got to tuck my Liam and Quinn in to bed which is such a precious gift to me now. I spent today washing all of their sheets and duvet covers. Felt so good to do something normal. I love laundry and I could never get tired of doing it. It is my favorite normal chore in the world.

I thought about a lot of you today, even the people I don’t know. I imagined your faces that I have made up in my head and wondered what you were doing on this day. I imagined a lot of your kids dressed up in their Easter best, a lot of you at church, and all of you watching your kids with your love for them pouring out of your hearts because you know how blessed you are to have them and I know how even more thankful you are for their health. Thinking of you all made me happy and warmed my heart. I hope I get to meet you all someday. I would like to give you a smile and a hug and thank you for supporting our family, whom you don’t even know. I am so thankful for all of you as well.

Tonight, after all of my babies are asleep I am going to go and kiss my husband and thank him for being the best man in the world and tell him how proud I am to be his wife. He deserves to hear this everyday. He is simply the most amazing man living on this planet. I will always think I am the luckiest girl alive that the stars aligned and we met when we did. I’ll never forget our first date and how I just knew he was the one. 11 years later and here we stand, going through the hardest thing of our lives, but we are going through it together, not apart. As much as I would like to put up my walls and as much as I try, Woody always finds a way to knock them down and I let him back in. He is the best thing that has ever been mine, that Wooddawg of mine. Mine forever. No matter what we have to go through. We will never let go of each other.

Sweet dreams to you all. I hope you had a beautiful day with your beautiful friends and family. I love you all so very much.

xoxo

This is from my sissy, Liz, tonight. I love you so much, Liz. This is just what I needed to hear.

Easter represents rebirth and new beginnings..how appropriate. Love you and your family with all my heart. And remember, we don’t call Ronan a rockstar for nothing!! 🙂 xoxoxoxxoxoxoxoxoxoxoxoxoxoxoxoxoxxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxxoxoxooxoxoxoxoxo

Dear Dr. Kushner-

You want me to give up on this? You gave up so easily but I will never. Did you forget the most important factor in your decision making? Him. He is not like other little boys. He is our miracle, our Rockstar, our gift. This is not over and it breaks my heart that you stopped believing. Miracles do happen; everyday.

Fondly,

Maya Thompson