I don’t need words. I just miss you.

Ronan. Yesterday went a little something like this: May 8th, the eve before you passed away. We went into town. It was raining cats and dogs. We all decided it was a good idea to see a movie so into the dark theatre we went. I was fidgety. I was anxious. I kept squirming in my seat. I ate a little popcorn. I had a huge wave of guilt wash over me, sitting in that movie theater, watching “The Avengers,” which is a movie you would have loved. Your daddy looked at me and said, “You can go. Go get a pedicure or something.” He didn’t have to say it twice. I up and bolted before we were even 10 minutes into the movie. I could not have run out of that theatre, fast enough. Out into the pouring down rain of the streets of Portland, Maine, was where I needed to be. Alone. I didn’t have an umbrella. I didn’t care. I just started walking, not knowing where I was, or what I was doing. I walked for a good 15 minutes before I finally found some random salon where I could soak my troubles away. I ran in the doors. “Do you do mani/pedis?” asking like my life depended on it. “We do.” the glossy girl behind the counter said to me. I was so thankful that they had an appointment open.

As I was sitting and waiting, a nice girl was waiting next to me. The conversation started because she was dying over the rain boots I was wearing. You know the ones. Those badass Hunter Wedge heel Rain Boots/my obsession that I never get to wear. I wore them yesterday and whenever I do, I have women stopping to ask me about them. She wanted to know where I got them. I told her. I also told her how excited I was to wear them, because I never get to. She asked where I was from and I told her. Then came the next question. “What are you doing here?” My eyes fell to the floor and the tears starting welling up. “Ummmm…. I stumbled over my words. Somehow I found them, but not without sobbing and apologizing everywhere. I barely got the words out of my mouth and this stranger started bawling too. She got up to give me a hug and told me how sorry she was. We ended up going back to the pedicure area together where we talked all about you. The poor girl that was doing my pedi was quiet as she listened and when I looked down, she too had tears pouring down her cheeks. She didn’t say much for a while. I not only noticed her tears, but the pretty purple shirt she was wearing. Of course it was purple. She finally looked up at me and told me all about her best friend, who had bone cancer. How she watched her struggle through it and how she was leaving for San Diego tomorrow, to go and visit her. I started crying harder. What is it about pedi/mani places, that I always end up crying the hardest? I guess I really miss you when I am there. I really miss you and how I would take you to get your toes painted sparkly and you were always so exited to show everyone at PCH. Sparkly toes for the most sparkly boy.

After my pedi of tears, I met back up with your Daddy and brothers. We went to grab some dinner at this place the girls in the salon told me about called, “Silly’s.” And silly it was. In the best way possible. You would have gone crazy over it. Quinn went crazy over the purple kool-aid that they just happened to be serving that day. Liam went crazy over the deck of cards they had in the special lunchbox on the table. Your daddy went crazy over the chocolate milkshake. I went crazy over the fried pickles. Fried pickles, Ro. Can you believe that one? You would have went crazy over them, with me. Your daddy pointed to a table of two girls that looked to be in high school. They were sitting at a table together, playing cards, drinking cokes. Your daddy kept saying, “This is totally a place you and Salina would have come and hung out. You two are such Jacksons.” (his word for silly) I smiled. I watched the two girls at their table. They reminded me of my youth. With my childhood bestie, Salina, and the world of complete and utter silliness that we created and always lived in. The two girls didn’t look silly though. They looked serious. Like the two of them lived in a world, where they were fighting for everything they had; but they were doing it together. It made me ache for my youth when everything was so uncomplicated and easy. Well, compared to now. I know the world of teenaged drama all too well. I remember the “problems,” I had back then. I look back now and know that they actually weren’t problems at all. They were lessons learned and part of growing up. I am thankful for all of them. As we finished up our food, your daddy took Quinn across the street to get some snacks. The waitress brought out check. I told her I would like to pay for the girls’ sitting across from us, as well, so to please put whatever they had, on our tab. She looked at me, wide-eyed. “Do you know them?” I just quietly told her I did not. I told her to give them 2 of your F U Cancer bracelets for me as well. She smiled and said she was sure they would be grateful. What I really hope is that they will just remember this small act of kindness and do something else nice, for somebody else someday, just because.

We all came home, tired from the days events. I tried to lay down but it was early. I don’t remember what happened next. The time you passed away, was getting closer and closer. You want to know something, Ro. I don’t know the exact time you died. I’ve been too scared to look at your death certificate. That makes this all too real. I think it was around 3:25 a.m. I know what time it was, that I sent my one and only text message, after you left to your Mr. Sparkly Eyes. It was 3:32 a.m. It simply said two words. “He’s gone.” 2 words, but so earth shattering. Two words, but how could there have been more? 2 words were all I needed because any other words I had, would not touch the fact that you had left this world. You leaving this world was enough to dim every single star in the sky for that night. I know the sky was covered in a blanket of black.

Your daddy lit a candle for you last night. Everyone fell asleep. I did not. I watched the candle flicker. I went in and out of sleep. 1 a.m. 2:30 a.m. 3:00 a.m. and I was wide awake.  3:32 a.m. came. I sent my only text message, once again, to our Mr. Sparkly Eyes.

Except exactly one year later. This time it read:

Fuc. (fuck you cancer)

I love you.
He loves you.

Always.

I cried. I fell asleep for a couple of hours. I had the most vivid dream about being back at PCH. You were dead. Dr. Adams was there with me. She was dressed in all purple and looked so stunning. She held me like a child and I just told her over and over how I wished I had not taken you to Dr. K. The rest of my dream just consisted of the both of us sobbing and I remember her purple dress being so bright and pretty. I woke up to my phone chirping like a bird alerting me of a text message from your lovie at around 5 a.m. I read it, cried again and fell back asleep until my phone rang around 8 a.m. I threw on my Uggs, warm sweater and ran outside to pick up the phone for the only person I knew I would be talking to, today. Your Sparkly. I ran out into the cold, fog, and drizzly rain. Of course the weather is this way, today. Of course it is.

“Hi.” I was already crying

“I’m sorry. I’m so sorry.” the talking stopped and I just listened to your Sparkly cry.

I went quiet on my end and we sat there this way, on the phone for what felt like an eternity. Crying. Sobbing. What else could be said? No words were even necessary.

I babbled out a lot of “I don’t understand,” over and over. I babbled out a lot of why’s. Why him? “I’ll never understand this.”

I asked him, “How am I supposed to do, today?” in between my tears.

He said, “Don’t. Don’t do today. Spend the day in bed. Have a fuck it all day because this is fucking bullshit and there is no explanation.”

I told him I couldn’t. I couldn’t do that to Liam and Quinn.

“O.k. then. Go play in the sand. Do something that Ro would have loved to do. Who cares if it is raining. It should be raining. It should be raining, everywhere.”

“Alright. I will do my best.”

” I will check in on you later, o.k.?

“O.k.” I said.

“My heart is broken for you. I’m sorry.”

I crawled back into bed for a couple of hours. I knew I had a long day ahead of me and I had already felt like I had run a marathon.

I’m ending this right here, Ro. I’m tired. I don’t know if I can write much more about all the went on today. I will try, later.

I love you. I miss you. I hope you are safe. I am so sorry, baby doll.

xoxo

Hellllllooooo Philly!

I’m not scared yet. Is that weird? Because at this point I should be scared shitless. And I don’t need to point out the obvious for you all to know what it is I should be scared about. Maybe it’s because I’m too numb, still in too much shock, or in deep denial. But I honestly don’t think those are the reasons for my being fearless. I still have this insane feeling in my heart that Ro is going to be fine. Maybe every parent whose child is diagnosed with cancer feels this way. It’s survival mode perhaps? Whatever it is, I’m not going to question it and I am going to embrace it as much as I can. I’ve questioned so many things today. Why Ronan was chosen for this journey in the first place, but most of all why he has to fight so hard through it. He is fighting like I’ve never seen a person fight before in my life. I know this is a big part of why I can’t give up yet. As long as Ro is fighting, I will not stop fighting for him. How could I? Any parent put in this same situation would do the same thing 100% guaranteed. To give up now would be so cowardly. I have never been a coward in my life and I am not about to start.

Today was one of the most beautiful days I’ve ever had in my life. Fernanda picked Ronan and I up to go to the clinic at PCH. I cannot tell you how good it felt to be back there. Dr. Maze came to see us while we were waiting and I got to watch my friend and see the pain in his eyes. He puts on a very bad poker face even though he tried his best to give me his famous smile and everything is going to be o.k. look. He left after a few minutes and looked at me and told me he was sorry. I just sat and gave him a smile as that is all I could do. After he left, I sat and thought for a few minutes. I have no shame when it comes to telling him the things that come rambling out of my head so I sent him a short text that just said something like, “Please don’t tell me you’re sorry. I cannot have you give up on Ronan too.” He then replied that he would NEVER give up on Ronan and that is not what he meant. He just meant he was sorry that Ronan is in pain as it breaks his heart. I felt better after that as that man has been with us through this from day one. I know he will not give up on Ronan because he gets it. He knows Ro is different no matter how hard this is getting and he knows my child has the spirit of something that is unlike anything on this earth. Dr. Maze is not going anywhere and more mother fucking doctors should strive to be more like that man. Enough with the egos and the ” I am GOD” attitudes. Enough of this cowardly bullshit. Not naming any names, of course. That would be much too easy. Dr. Maze also knows Dr. Mosse and took the time to send her an email in regards to us. He thinks the world of her which is so very comforting to me. He is very good judge of character and the fact that he respects this woman so much, means everything to me.

We were soon called back to the clinic room where we sat for a while and Dr. Eshun, Ronan’s primary doctor at PCH, came in to see us. Another prime example of an amazing doctor who is full of compassion and heart. We sat and talked and the things we talked about were not easy; but not once did he break eye contact with me. That is HUGE in my book. It is a sign of respect and just pure hearted goodness. I asked him hard questions and he answered as honestly as he could. He gave me his warmest smile even though I knew he was sad. That mans smile could melt a room. I thanked him for being so kind to us and told him how much it meant to me that he had the courage to talk with me the way he did. He supports our decision and understands where as parents, we are coming from. I’ll bet he is the most amazing father. I can tell that about him. He takes all of this personally and has tried to guide us as best he could. We will always be thankful for that.

While Dr. Eshun was in the room, our social worker Marcia came to see us as well. She has been so supportive of us from day one as well. I’ve always known she was a special lady but today, she kind of blew me away. She was so hopeful and so supportive of what we are about to take on. She told me what a good mom I am and how proud she is of me. It felt really good to hear from her as I respect her so much. Her eyes were filled with so much light and love today and I know she believes. She believes in miracles and she believes in Ronan. She believes in our love as a family and believes he can do this. She is still standing by our side and is not going anywhere either. I am so thankful for this.

The next person I saw was, “A.” This was probably the hardest person that I had to face. I’m not sure why…. actually I am. It is because I am completely in love with that woman and I wanted nothing more but to come back to her with the most amazing news…. I did not want to come back to her this way. She sat with me, hugged me and held my hand for a long time. We talked about really tough things. Things that I think about on a daily basis, but I cannot go there yet. A is logical, realistic, and matter of fact. But this is why I love her so much. I know she is only telling me the things she is telling me because she wants to make sure I am as informed as possible and that I have thought about everything, every possibility, every outcome. She does this for me because of the love she has for our family. All that bullshit about doctors not getting personally involved with their patients is bullshit with A. She is fully invested and proved that by the way she ran out to our car today to chase us down to give us one last hug and kiss goodbye. Nobody at fucking Sloan would have done that for us. I think I may have set the bar a little too high with them. Don’t get me wrong, I still think they are one of the best hospitals in the nation. But they will never compare to my little PCH and the kind of quality care we get there. Today, I felt like I was floating on a fluffy cloud with all of my favorite people waiting for me with open arms. As shitty as the circumstances are that we were back, it filled me with the love that I have so been missing.

Dr. Maze also came back to see us again and say goodbye. We will see him soon and Ronan asked after he left if he could come with us. I told him I didn’t think so, but this time we won’t be gone so long so we will be back to see him soon. He smiled and told me that made him happy. Little love bug.

While I was waiting in the isolation room with Ronan as he ended up needing platelets and blood, I saw the woman who walks on water to me. Dr. Adams. I hesitated to chase her down but Fernanda was like, “Are you crazy?! You know that woman always makes you feel better!” Did I forget to mention that “Nanda,” as Ro calls her sat with me all day long? My darling, F. I don’t know what I would do without her. Actually, I do. I would not be getting though any of this and would be curled up in the fetal position somewhere. Anyway, as I was getting ready to chase down Dr. Adams I looked at Fernanda and said, “I can’t see her, my entire ass is hanging out of my pants!” I’ll have to back up the story on this one. I forgot to mention that I was wearing this pair of pretty thin seersucker pants today and when we first went to the clinic and I was getting Ronan out of the car, I dropped my cell phone and bent down to pick it up. I heard a big, “Riiiiiiipppppp.” WTF?!? I turned around to Fernanda and said, “Did my pants really just rip and is my ass cheek fully exposed?” Indeed they had. The only thing I could do was laugh and roll with it. I spent the entire day pulling down my tank top to cover up my bum as to not expose anyone to the beauty of my milkshake maker. You know, my favorite booty song…. “My milkshake brings all the boys to the yard.” Yup. I fully brought my milkshake to the clinic today and I don’t think Woody would have appreciated it if any boys came to my yard. Fernanda, of course had the problem solved as she had another pair of jeans with her. I threw those on and went down to see Dr. Adams. I peeked around the corner and there she was. I waited for her to see me before I approached her. She had no clue we were back and it took her a minute to register it was me. She looked at me for a few seconds and goes, “What are you doing here. I did not want to see you back.” I calmly explained the situation to her and she teared up and pulled me into a room. She hugged me, held my hand and locked eyes with me while we discussed everything. And I mean everything. She kept telling me that what matters now is the care that I am giving to Ronan, which is 100% my complete love and strength, but I also needed to let him know that we are all allowed to be sad because none of this is fair or right. She was 100% supportive of trying this MIBG therapy. We touched a bit about how his cure rate is now becoming slimmer and slimmer. I told her I knew all of this but I didn’t care if there was a 5% chance that he could beat this. I wasn’t giving up yet. She told me she knows what good parents we are and we know what is best for Ronan at this point. I don’t think I’ve said this before but just being in her presence almost scares me; but in a good way. I swear to god I’ve known her in a past life or something and I also swear to god that she is seriously an angel walking around on this earth. She has such a presence about her and is one of the most beautiful women I’ve ever come into contact with. When I am with her, it is as if she gives me the strength that seems to be surrounding her at all times. She has a very strong aura about her. I feed off of this and I actually felt really calm around her today. I always feel calm and at peace when in her presence.

We had our sweet Patty taking care of us all day. She is not even a nurse to me anymore; she is my friend. She sat with me, cried with me, laughed with me, and helped me with Ronan as much as he would allow. She helped me out to my car and carried all of our things. It was so nice to be back home today and I was so glad Patty was the one taking care of us.

Um, yes, hello. I could write a freaking novel tonight while on this red-eye. I should be sleeping but I have too much buzzing around in my head and to much to talk about today. I’m getting so sleepy but I want to touch on this woman Joanna who emailed me today and her email said please call me, I promise I’m not crazy. What the heck, I thought so I picked up the phone and called this lady who lives in Toronto, Canada of all places. Instant connection. She told me the most amazing story about something she had just experienced and swears it is a sign that Ronan is going to be o.k. I believe her. I cannot go into details because at this time, I am seriously about ready to pass out. This stranger picked me up off my feet today when I needed it most. We talked about fate, the timing of all of this MIBG therapy as if we would have started this any later…. Ronan would not be eligible for the antibodies that come after this due to a time period. She said maybe Dr. Kusher kicking us to the curb was a blessing in disguise because now we will start this therapy and if we get the response we are fucking praying our asses off for, Ro will still be eligible for the antibodies. We will cross that bridge when we come to it, but you all know I love a good fate story. Fate and hope are what I’m hanging on too.Thanks Joanna, for reaching out to me. It meant the world to me today.

Also, I am learning such lessons from a little 10-year-old. Not really lessons, but more like what it means to see this through the eyes of a very wise child. Mr. Luke Ashworth, my heart will forever be yours. Ronan’s cousin has been such a blessing to us. He loves my Ro so much and Ro loves him just as much. Luke gets all of this, as he is wise beyond his years. He looked at me tonight and goes, “Promise me you’ll never give up.” I looked at him and said, “Luke, of course I will never give up. I promise you that. I will never give up on Ronan.” We had our moment and I will never forget it as long as I live. He thinks about Ronan so much and is so worried about him. It takes a very special boy to be so concerned about something like this. I am so proud to have him as a part of our family.

This is all I can do tonight. Long enough for you all? Geez! Blabber mouth city could not shut up tonight. Adrenaline I guess. I’m in mama lioness fighting mode. One more thing I want to  mention…. Thought-out all of this I find strength in so many places, but one person in particular is always on my mind. It is someone I never knew, but he is one of my idols; Pat Tillman. I have called Ronan our mini Pat Tillman since he could walk. I often think about Pat and how strong-willed he was and just what an amazing man and role model he is to our family. We all worship him. I think about his strength and bravery and I channel this by thinking about him when I think I can no longer go on. He helps me put back on my fuck you cancer boots and continue to fight. I know if he were here and in a twist of fate, he were to meet Ronan, he would never give up on him. I feel like he is one of our angels watching down on Ronan wherever he is. Ronan reminds me so much of him… just the little I know of him from reading some books that have been written about him. One in particular by his mom. The things he did as a child are so similar to the spirit the Ronan embodies. So, Mr. Pat Tillman…. thank you for being the definition of what it means to be a real man and to fight for what you belive in no matter how many people tell you differently. You will always be a hero and a god in our eyes.

G’night my lovies!!!!!!! Or G’morning I should say!

So proud to have you all by our side and I will never get tired of saying that. You mean so much to us. CHOP here we come. Dr. Mosse, I have faith in you; I’ve known this all along. NOT GIVING UP. Who could give up on a fact like Ro’s?? Only the UGLIEST of souls.  And we don’t allow ugly souls on this blog.

We are here. We made it. I have not slept in 24 hours which is probably why my post was a little “hyper.” Adrenaline. In a turn of events, Ronan’s pain in his legs that he has been having, which has been horrific, is not bothering him at the moment. As soon as we stepped off the plane, he started smiling and told me he loved me so much. He has not complained once since we arrived to our room. I have a good feeling about this Philly place. I sent Dr. Mosse an email at 6:30 this morning telling her we had arrived, we were at her mercy, and would do whatever it takes to get Ronan started on this treatment as soon as possible. Not 10 minutes later she emailed me back saying no child should be in pain and that they will move his treatment from next week up to this Thursday. Now that is an amazing doctor. Talk about class, compassion, and heart. I knew this about her from the first time I met her. This is our time now. Things are falling into place and I am going to keep holding on to my belief of that. As Tricia dropped us off at the airport tonight and hugged me tightly she whispered, “Bring our baby home.” You bet your ass I will, TT. I promise you that.

Time to try to get some shut eye; although it looks like Ronan has other plans as he has set up a whole battlefield of Star Wars guys in our bed. Love my little fighter so much.

I hope you all have a beautiful day.

xoxo

Hello New York. We’ve missed you….

I don’t have days where I don’t feel like writing very often. If I miss a few days here and there, it’s usually because I am too busy, too tired, or just taking a little break. Today is honestly the first day where I don’t feel like writing; yet as I sit on this airplane while Ronan sleeps, I have too many thoughts filling my head and my mind refuses to be quiet. So, I’ll share. Today, is the first time that I feel like it may be too much but I started this blog and one of the promises I made to myself was to always be honest, no matter how painful it might be. Today stings. Today was a blur. Today does not seem real.

My morning started off with Ronan crying about his arm because he is in so much pain. He was actually up off and on all night and his pain medicine seemed to only help just a little. That led me to sending Dr. Maze a text telling him what was going on and asking him if he thought it was a good idea to call Dr. Eshun this morning to ask if we could bring Ro by the clinic to give him a dose of morphine before we got on the plane. He responded with a yes. I called the clinic, but it was too early and nobody was there yet so I was told to call back at 8:00 a.m. A few minutes later, Dr. Maze responded that he had called one of Ronan’s main nurses, “A” and that she would be calling me soon. He didn’t have to do that for me, but he did because he loves Ro and that is just the type of person he is. One who goes above and beyond. I was beyond a mess but was trying so hard to hold it together and waiting for the clinic to open up so I could speak to someone was more than I could handle. “A” called me about 15 minutes later and I had a lengthy conversation with her. We talked about what was going on, what she could do for me, and how we could go about getting it done to work with us leaving on a flight at 3. She wrote out a new, stronger pain medicine prescription for Ronan and my dear sweet friend, Melissa, drove down to PCH to pick it up for me, got it filled at the pharmacy and dropped it off to my house. “A” also decided that I should bring Ronan down to the clinic at noon so they could give him a dose of morphine to make him a little more comfortable for the flight. This all sounded like a good plan to me and it was one of the reasons I made it through today. Knowing Ronan is in so much pain is intolerable and if I have to numb him until we start this chemo, bring it on. I can’t stand seeing him hurt the way he is.

Tricia stopped by on her way to work for a very quick goodbye. As soon as she walked in the door, we embraced and both started bawling. We held each other for a few minutes and she gave me her best New York pep talk, but it didn’t really work. I felt as both of our hearts were smashed on the floor below us in a million pieces. Our goodbye was fast as that is the only way we could both handle it; anymore time spent together would have been too much for us and way too disastrous.

After Trish left, I was scrambling to get last minute things done. Fernanda came over to help me and cooked up a huge breakfast for the boys. I was in such a daze and she could tell as she kept trying to tell me things and I couldn’t hold a thought for a second. I tore through the last of the mail, finished packing our things, and made a few phone calls. Fernanda scattered around, cleaned up the kitchen, and helped keep Liam, Quinn, and Ronan occupied. Bethany stopped by next and brought her little Madden with her along with her to play with Ronan. She came with her arms full of groceries for me as I told her this morning, my fridge was empty and my poor boys were living off of the junk in the cupboards. I told her I needed fruit, veggies, meat and all things healthy or else I was going to lose my mind. She couldn’t have been happier to help and I am so thankful. Ronan was so excited to play with Madden and we all sat and watched the 4 boys run around, chasing each other with Nerf Guns and laughing away. I watched the look in both Bethany and Fernanda’s eyes today as we watched Ronan trying his best to keep up, all while keeping his right arm down at his side as he was trying not to use it. The look in their eyes alone was enough to kill someone. I tried my best to keep them both busy with tasks as well as myself because I knew if I didn’t we were all going to crumble to the floor and end up in a wet pile of tears. My dear Niki stopped by with her two little ones in the middle of all the chaos to say goodbye. Stacy stopped by as well. Soon I had a house full of friends, kids, and it was so beautiful…. for being so ugly. I kept thinking to myself, my house should not be full of kids running about, laughing, and my dear friends because Ronan has cancer and we are leaving for New York. It should have been because it was a gorgeous Spring Break day and nothing more. Fucking cancer.

Everyone left except Fernanda who held the fort down as I hopped in the shower and got ready to go. Danielle came over right as we were walking out the door to leave. I was so glad I as able to give her a hug and say goodbye. Mimi and Papa came over to stay with Liam and Quinn and Fernanda took Ronan and myself to the clinic to get his morphine. I knew once I got there it was game over. I took one look at “A” and the tears started and wouldn’t stop. Dr. Adams came over as well to say goodbye and gave me a couple big hugs and said some sweet words. Sharon also came over and held Ronan and told him she loved him. She hugged me to and told me everything was going to be alright and she loved me too. I left there still crying, holding on to Ronan’s hand as he looked up at me and told me he was sad too. I know he is sad and it is not just because I am… he knows what is going on and what is killing him the most is the same thing that is hurting the most for me; leaving his brothers behind. He has been crying on and off about it all day long and has been saying, “But, I’m never going to see my brothers.” He says these words over and over and it cuts like a knife. I just put on my bravest face, lie to him, and tell him of course he will, they will be coming to New York in a few days. Not true at all, but I think Ronan is young enough he is not sure how much time passes between seeing Liam and Quinn. He doesn’t fully understand the concept of a few days or a few months as it all seems the same to him. I hope anyway.

We finished up earlier than expected at the clinic so we ran over to American’s Taco Shop for some lunch. Fernanda hadn’t been there before and as little of a thing as it was, I felt good giving her something like taking her to my favorite spot to eat Mexican food. Now she can share it with her family and knowing that I introduced it to her, felt so good to me. So little and silly, but little and silly makes such a difference in my life now. We hurried and ate our food and headed to the airport. Woody met us there with Mimi, Papa, Liam and Quinn. Liam seemed alright with us going, it was Quinn who I watched be worried. He gave me his biggest, nervous smile and hugged and kissed me. The worst part was watching Ronan grab on to Quinn’s thigh and kiss it goodbye as it was the last thing he was clinging to. I turned around just in time to see there last embrace before we headed off to the plane. We checked our bags and got to the gate quickly and here we sit. Ronan is sitting in the middle of us and is sleeping soundly. So soundly that I was able to take one of his Oxycodone, break it in half, and slip it into his mouth. Ah, the joys of being able to medicate your child so he can’t feel his pain and it is a victory that he didn’t wake up to fight me on taking it. These are the things that I get to be thankful for now.

Woody. My Woody. My Woody who is so worried about Ronan’s arm that he was feeling it on the plane and is convinced that he can feel the cancer in it. My Woody who looked at me and told me he felt like dying. He then said to me, “Why don’t you?” My reply was, “I do.” I watched him push the tears away and then he grabbed my hand. We stayed that way for a while and he then too fell asleep. I just sat, stared at both of them, and cried. Today has been way too much for me. Sometime I am amazed at all of the tears I am able to cry as they seem to never end. I wonder if someday, I will have cried so many tears that my body will dry up like a cactus and there will be no more. I wonder these stupid things in my head all of the time because I now believe anything is possible because of what we are going through. The thing that I had never giving a second thought about because I thought it was impossible and we as a family, were invincible. Things like this don’t happen to good people like us, right.??? Wrong. So very, very, wrong.

Time to get this New York thing going. Time to get Ronan on the path he was meant to go on. Time to make the very best of New York and all that it has to offer. Time for this city to heal my heart again as it has done it before and it can do it again. Time to get him well so we can be one step closer to being back home for good where we belong. I know we can do this…. he can do this; he will beat this. I have no doubt that New York is the answer we have been looking for. I’ve always wanted to live here… so I will take this and make this as positive as an experience as possible. I’m tired of fighting this new life; I have no choice but to embrace it as much as possible. I will take all the sadness and find the happiness in it; even if that means finding happiness is in a run in Central Park or seeing my twins’ faces on Skype. I’m not going to let this break me, ruin me, ruin my family. I may keep getting pushed down, knees scraped and bloody…. but I will never stop getting back up no matter how bloody and bruised I get.

Thank you to all of my family and friends who have helped out so much. You all have no idea how much you mean to us. My words could never be enough to tell you how thankful we are. I feel like we have a little army of ants, whom just keep working away, never stopping, until they see us through to the end of this storm. When Ronan is cured of this awful disease, I hope you know that you will all be a part of the reason that he survived. Your love and support keeps me from digging a hole somewhere and never coming out; right Trish?? I love you all to the moon and back. Kisses from New York to all of you…. we will never forget how blessed we are to have the people surrounding us that do. Only the best of the best, and the truest of the true.

xoxo

We’re not married…. we’re still dating;)

I wish I could tell you tonight that we have our answer. But I can’t. Woody and I both left the house on the same page this morning, thinking we knew which approach we were going to take. That all changed after meeting with Dr. Adams, the head of Stem Cell Transplant at PCH. I should have known the answer was not going to be so easy. Woody, Fernanda, and a I sat across from Dr. Adams and Woody did all of the talking. Fernanda sat and wrote notes and held my hand; I sat, listened, absorbed, and cried. At one point I looked up and told everyone I was just trying to do my best not to throw up everywhere. Dr. Adams looked at me and said she didn’t blame me, she was devistated that she had to be having this conversation with us. But, she said she still feels like Ronan can be cured…it’s just going to take a little more work than we would have liked. She said we have a ton of options available but unfortunately, nobody knows the right answer. The decision we are going to have to make is going to have to be based on all the data we collect and a gut feeling. Those were her words exactly. I told her I’d be gut feeling, and Woody could be the data:) Sounds like a perfect match to me. What Dr. Adams would like to see is us do 2 more rounds of a different type of  chemo here, than rescan Ronan and make a decision after that. She does not want us to jump head first into anything. Woody and I both agreed that this sounded like a good idea to us as long as it won’t close any doors as far as other options go. We are waiting to hear back from Dr. Kusher at Sloan to see if he is o.k. with this. We don’t see how this would hurt Ronan at all, if anything everyone seems to think we can get rid of some more of his disease this way.

There are not many people in the world that I would trust with the life of my baby, but Dr. Adams is one of them. I don’t have a super personal relationship with her for obvious reasons, but I don’t need one to know that she is a very special woman. She is brilliant beyond belief, compassionate, open minded, and has dedicated her entire life to this. She truly cares about each and everyone of her patients. She has this amazing aura around her and I feel it whenever I’m in her presence. After we left her office, Fernanda and I went out into the main waiting room to take care of some business. Fernanda looked at me and said, “I still have goosebumps after being in that room with that woman.” Fernanda felt it too. This woman is a gift to us and I want to keep her involved in Ronan’s care for as long as possible.  I fully trust her and respect her opinion so much. She wants to give Ronan the best shot possible is willing to do whatever she can. She was very hopeful because Ronan has responded so well and as I said before, she just thinks he needs a little something extra. Staying here and starting chemo would give us more time to figure out our exact plan. I hate just to jump right into anything if we can take baby steps instead to really make sure what we are doing is right. Fernanda had Dr. Eshun’s assistant get all of Ronan’s scans out to about 6 different doctors. We will take all of the opinions we can get right now. This is not the end of the road my friends, not even close. This is the beginning of a new path we are going to take to get Ronan well. I am embracing it with open arms and know it will be the right decision, when the decision is made. I trust in the higher power who is in charge of this…..whomever that may be as I believe there are many forces behind getting Ronan well.

Once again I am in awe of my husband. I sat today and watched him fire out questions to Dr. Adams that I think she was even surprised to hear him ask. He knew the names of all of the studies, the side effects, what things would open doors and what would shut doors. It is pretty amazing when you can watch someone like Dr. Adams be so impressed with a father and his wealth of knowledge. I wish I could have been of more help, but I cannot seem to detach myself from the emotional side of all of this. I don’t know what I would do without Woody. I said to Tricia yesterday, “Could you imagine if I were married to a moron and going through all of this?” There is no way I could get though it. I am so thankful I am married to such a brilliant man. I love you, Woo <3

We still know Ronan is going to beat this but as I said before, he is going to do it his way. We will get this figured out but it is going to take a little bit of time. Nothing is set in stone and I loved it today when Fernanda said in her beautiful accent, “Honey, I love that you’re not married to one idea, your still dating!” I’ll never forget how her words made me feel today. I’ll never forget her sitting in the clinic with me and seeing her tears over something I had shown her that I carry with me everywhere I go…. her Christmas card picture with all of her 5 beautiful children on it. I feel like it brings me luck and it will help to guide me. It’s the little things that mean so much to me now. Whether it be the Claude necklace I always carry with me, my four leaf clover necklace that I never take off, Pam’s bracelet that she gave me that I also never take off, or Fernanda’s Christmas card. All of those things bring me peace and although they seem little and insignificant, they all mean the world to me.

Today was a long day to say the least. I have taken my sleepy medicine so I can actually sleep tonight. If I miss a dose, sleep does not happen. I’m o.k. with this. It won’t be forever, and I know how important it is for me to get some real sleep. My dreams are still intense and sometimes they are good, and sometimes they are bad. Working on tricking my mind into making my dreams as peaceful as possible.

Goodnight my sleepy friends. Goodnight Moon. Goodnight my sweet baby Ro, Liam, Quinn and Woo. Goodnight my Fernanda… I will meet you in my dreams for cocktails, on a beach, far away from all of this. I love you.

The dawn is breaking
A light shining through
You’re barely waking
And I’m tangled up in you
Yeah

I’m open, you’re closed
Where I follow, you’ll go
I worry I won’t see your face
Light up again

Even the best fall down sometimes
Even the wrong words seem to rhyme
Out of the doubt that fills my mind
I somehow find
You and I collide

I’m quiet you know
You make a frist impression
I’ve found I’m scared to know I’m always on your mind

Even the best fall down sometimes
Even the stars refuse to shine
Out of the back you fall in time
I somehow find
You and I collide

Even the best fall down sometimes
Even the wrong words seem to ryhme
Out of the doubt that fills your mind
You finally find
You and I collide

You finally find
You and I collide
You finally find
You and I collide


On to the next step…. Transplant here we come!

Wasn’t a lifetime ago that I was sitting in the cafeteria with Auntie Karen, E.J. Tricia, Max and Woody as we went over all the options for Ronan? Wasn’t it a lifetime ago that I had to leave the table because I was hyperventilating and Tricia followed me and I told her there was no way I could do this?? How could it be possible that so much could change in the blink of an eye, and here we sit 5 months later with everything on paper, telling us the results from Ronan’s scans.

Bone Scan- No definite focal abnormality

Bone Marrow– No definite focal abnormality

PET-CTMIBG– Still has a small amount of activity in his knees, pelvic bones, shoulders, and spine but it has greatly diminished.

MRI– No abnormality in the brain.

24 hour urine test- negative for Neuroblastoma

This is good news. This is a huge victory for Ronan. But I still cried. I cried because I am his mother and I just wanted everything to be gone already. The doctors did not expect Ronan’s results to be any better than this, due to how tough this cancer is. That is why we will do the Stem Cell Transplant, Radiation, and Antibodies. Yesterday was a hard day though. I called Fernanda first… because it was her words I needed to hear. She let me cry and then told me all of the reasons why this is happening, how fucked up it is, but how this is Ronan’s journey, and I cannot compare it to anybody else’s because he is so different. She told me how lucky we are that he is responding so well, as unfortunately, some children do not respond at all. He is on his own path and is going to do this his own way. She is so right. I felt better after talking to her and made a couple other phone calls. I was running late to my hair appointment and was a mess by the time I got there. My sweet hair girl, Katrina (the one who shaved Ro’s hair for me) knew something was wrong as soon as she saw me even though I told her I was fine. 10 minutes later I was bawling in her chair as she wrapped her arms around me and held me. I told her about the scan results and what we had coming up. She is the best and is so good at letting me vent. Thanks, K<3 Love you.

Don’t even get me started on the fucking Audiology test yesterday. We had to finish it up and when we were done, the asshole Doctor looked at me and started saying things like, “Definite hearing loss, it’s permanent and will never come back. You may want to consider what kind of quality of life you want for him.” I wanted to reach across the table and strangle the mother fucker. The way he delivered his “news” was harsh, cruel, and just plain rude. I felt like I was sitting back in Dr. Robinson’s office for the first time having Ronan’s eye looked at when I ended up walking out of the appointment. I tried to argue with him, but his results are his results, he said.  WTF ever. I will not be going back to see him again. We know Ronan is going to have high pitched hearing loss, and big deal, we can deal with that. This guy made it sound like Ronan’s life was now going to be completely ruined. This is not the way you present your findings to a mother who’s child has cancer. We’ve got enough on our plate as it is and this is the last thing I’m concerned about right now. I’m made my complaint and will continue to do so against this asshole. If you are going to be so cold and ruthless, you should not be working with children.

Ronan has been in a happy mood since we got home yesterday. This will be his last weekend here for awhile so we are going to soak it up. He has no idea yet what is coming up next. How do you explain to a 3 year old that they will be going into isolation for god knows how long?? You don’t. I will tell him on Wednesday night, as little as possible and try to explain it in the most kid friendly way I can. I have a lot to get done before Thursday and thankfully my therapist squeezed me in on Tuesday. I’ve got to get myself ready as well as Ronan. We will meet with Dr. Adams on Tuesday to go over everything. I am excited. Excited that we are moving forward and that Ronan is doing so well. I am excited to get this Stem Cell Transplant done and give my baby a whole new immune system free of this evil cancer. He is going to have another birthday to celebrate once he gets his immune system. He will be the boy  with the most birthdays ever;)

This weekend we have the twins’ basketball game, my mom and I are having lunch with my dear friend, Lisa, Woody and I are going to Tricia and Max’s tonight, and tomorrow night all of my sweet girlfriends are kidnapping me for a dinner out send off. So excited to see them all!!!! It is going to be a great weekend and I am going to enjoy every second of it.

I hope you all have a wonderful weekend!! Thanks for checking in and spreading the word about our little Rockstar!

xoxo

GRRRR… New York Miss Macy! Mama Bear is in full effect. LMAO!!!!!! I totally think this will keep me warm in the hospital!! Love you my crazy friend!!

An old soul

Ronan had his clinic visit this morning. His levels have dropped just as we were expecting. We are so used to this chemo thing now that we know where his counts will be. What I didn’t expect wash his platelet counts to be so low. They were 10,000 today. WHAT?!?! 10,000 and not a bloody nose in sight? How is that possible? Since we started this chemo journey, anytime Ronan’s platelets drop lower than 20,000-30,000 we are guaranteed that he has the dreaded bloody noses that we cannot control. I told “A” today that maybe it’s due to having the tumor out of Ro. She smiled and I know she doesn’t think there is any correlation between the two, but I am going with what I have been saying all along…. He really is a brand new boy. He was so sweet as we were waiting at the clinic today. He sat and talked to me about all of the nurses who take care of him. As “A” walked by, he goes, “She’s so nice, Mom.” The he told me how much he loved Sharon and Kristin. He is so full of love today and is just so grateful, even though he is feeling so crummy. His ANC is at 60… which means his immune system is almost wiped out. I’m expecting it to hit 0 tomorrow. We will have to keep a close eye on him…knock on wood no fevers or bloody noses. It would be so nice to stay out of the hospital until Transplant time.

I spoke with Erin from Transplant today; she is basically Dr. Adams go to girl as far as scheduling and preparing us goes. She told me to expect to start Transplant on February 15 or 16th. Assuming all of Ronan’s tests come back with the results we are wanting to see. She didn’t see any reason why they wouldn’t, but he has to have everything from his heart, liver, and kidney checked to make sure they are functioning properly before we can get the green light. He has those tests scheduled for February 9th. So far, every time he has had his organs checked, everything has looked great. It is amazing how much the human body can take. After we get the green light for transplant, we will then be randomized to see if Ronan will have two transplants or one. You know we are hoping for two…. even though I am scared shitless at what this is going to do to my little guys body. Woody keeps saying we’ve got to throw the kitchen sink at Ronan’s cancer… and two transplants is definitely throwing the kitchen sink at it. If Ronan’s cancer comes back, it will be because we didn’t kill all of the cancer cells the first time around. Two transplants we feel, will increase the chances of killing all of his cancer.

I am trying to mentally prepare for Transplant/Isolation. I am wracking my brain for everything that I can possibly think of to keep myself and Ronan happy during his stay. I’ve been trying to think of it more like… If I were stranded on a desert island rather than… if I were trapped in a solitary confinement… what would I need?? Something tells me George Clooney may not be realistic. So far, I’ve come up with easy things such as: my computer(duh) my camera, movies, books, my coconut water (have I mentioned that I am OBSESSED with the stuff??) my yoga mat, Ronan’s favorite toys, Art supplies, his favorite bedding, his Wii and PS3. We will have to set up Skype to keep in touch with Liam and Quinn. I am trying my hardest to turn this into something really positive. Not many people get the opportunity in life to just simply “be.” I am hoping something really good will come out of this and it will make Ronan and myself even stronger. It will be a time for great reflection and learning. Tricia and I were laughing the other night because I told her I was going to study Buddhism while in Isolation. She told me she was going to make me a little sign to wear around my neck that says, “Cannot speak,” due to respecting the silence that comes with this religion. The image in my head totally made me laugh. Don’t think I’ll take it that far, but I love her for making me laugh.

I talked to my NYC Miss Macy today. That crazy pants. She texted me to see if the boys’ would like a King Cake from Nola. She is going there on a business trip soon and wanted to ship the boys one. I had no idea what a King Cake even was so I listened as she Googled it and explained it to me. I also told her that I needed her to come stay with me in Isolation. I was half joking and told her I needed her purely for selfish reasons. She told me to say the word and she would be on a flight if that is what I needed to keep me sane. I told her that we would save her visit for when we are finished with this Stem Cell Transplant and that way, we can all enjoy Miss Macy to the fullest. We are going to have such a reason to celebrate! I know Ronan is going to soar through this transplant with flying colors. He is so tough and has done so well with everything else, how could he not.

For now, I am going to soak up being at home with the boy and Woody. These past couple of days have been so sweet. I am thankful every second of the day, for all the blessings we have in our life. Ronan being the biggest one of them all. One of the night nurses that takes care of Ro whenever we are admitted to PCH says the same thing to me every time she comes in to check his vitals. She always tells me that she can tell Ronan is an old soul. This always makes me smile because I have known this since the day he was born. He has always been different; almost like he has been here many times before. He just has that look in his eyes that tells me not to be scared, not to worry, because everything is going to be alright. Looking into his eyes, I know this. This cannot turn out any other way; he has way too many hearts to break and way too much trouble to cause.

Let the hiding begin….

Hello. Hope you all are well. I have officially gone into hiding. So much so, that my 3 besties had to bust into my house on Sunday morning to make sure I was o.k. I felt like I was on that show, “Intervention.” I don’t mean to shut everyone out; but it’s what I do best. Being home has been great and I have been loving spending time with Liam and Quinny. I could easily stay in my house and never leave again because when I do go out, the anxiety is still too much. Woody practically kicked me out of the house last night and made me go to a movie. I picked up Linds (my go to last minute girl… thanks mama) and we went to see “Black Swan.” Good movie, but I should have picked something a little less dark. After I dropped off Linds, I was driving home and the tears started up and I couldn’t get them to stop. I had to pull over because I couldn’t even focus on my drive. I’m not going to tell you what thoughts were consuming me…. but I’m sure you can guess. I still don’t think this is real. I still can’t wrap my head around the fact that my perfect little boy is so ill. It seems like yesterday that he had a head full of hair, and was running around always looking for trouble. I can’t tell you how much I miss that little boy. The little boy that I could never get mad at because one look at those bright blue eyes and that mischievous smile and I was done. I always ended up laughing at whatever naughty thing he did. Well, most of the time:) Now, I get to watch as he is too weak to walk and wants to me to carry him all of the time. Now I get to lay next to him and know that every breath he takes is a blessing and every kiss he gives me is a dream come true. Every tear that falls down my face is for him and I think about what sadness was like before all of this. Before all of this, sadness should have not existed in my world because I absolutely had nothing to be sad about. Everyday is a struggle for our family; nothing is easy anymore. I am doing what I can do to push through the motions, I am doing what I can do to survive. I am still numb to everything around me, except for pain. I feel that every second of the day.

We got a call from Radiology today and we have all of Ronan’s scans set up. February 2nd, Ronan will go under Anesthesia for his Bone scan. February 3rd, he will go under Anesthesia again for his MIBG, Pet scan, CT scan, and MRI. These two days are going to be very telling for us. After these scans, we will know exactly where the cancer is left in Ronan’s body and from here we will find out when we start the stem cell transplant. We already know that it is clear from his bone marrow; but the MIBG scan will be the most telling of them all. A MIBG (iodine meta-iodobenzylguanidine) scan is a test used to find tumors of a specific origin. This scan will light up Ronan’s whole body to show us where the cancer is still active. Of course we will be praying that it has diminished immensely. Ronan has come too far and worked too hard for it not to.

So, this is my update for today. Tricia was officially concerned because I have gone off the radar; so here you go Tricia Boo. I’m here, or I’m here as much as I can possibly be. I haven’t been talking to anyone so I hope none of you are offended. I miss you all but just need some time to get back in a routine at home. I miss my New York Miss Macy dearly. I will think about the time I had with her and Tricia in New York when I need to smile. The time spent with those two and Ronan meant the world to me. It felt so good just to be and laugh, even though we were in a hospital with my baby who has cancer. True friends that can make you smile and laugh during the hardest times in your life, are the truest of the true. I love you both so much.

“I soooo happy, mama”

Last night, we were able to leave the hospital. Ronan was fast asleep in his hospital bed and about 10:30 p.m. the nurse came into the room and said we could leave. I gathered up our things, managed to carry our bag, Ronan’s blankets, and pick up my baby boy and carry him to the car. He woke up just as we were waiting for the elevator, wrapped his arms around me and said, “I soooo happy, mama. I love you soooo much. I sooooo proud of you.” The tears welled up in my eyes and I felt like my heart was going to explode. It is things like that, that make all the bad parts of what we are going through, disappear.

Today, I am so thankful for so many different things, big and small. I am thankful that I have such a strong mother-in-law. Anyone who knows my mother-in-law, knows what an amazing person she is. But it is her strength as she is standing by our side through all of this that makes me love her, adore her, and look up to her more than I could have possibly imagined. I think she is possibly the strongest women I have ever met in my entire life.

I am thankful for my all of my dear friends. My Niki, who loves to leave me long voicemails, pouring her heart out to me. The fact that after a 5 minute phone conversation she can tell by the sound of my voice if I am having a weak moment or if I am doing o.k. And if she can tell that I am not doing well, she’ll call me back up to leave me a message or listen to me vent, cry, or not even talk at all. My Tricia, who is flying to NYC just to hold my hand through this. Who knows what it means to be a real friend, even in such an awful situation. She fills me with encouragement, hope and love. For the phone conversation I had with my Susie today, who doesn’t live here but because of our friendship and bond, it doesn’t make a difference in the love we have for each other. She is so understanding, supportive and knows just how to make me laugh when I need it most. My dear Kotalik family. They too will be in NYC with us and they have no idea how much that means to me. We are going to need all of the love and support we can get out there.

I am thankful for my strong husband, who refuses to give up this fight. Who questions the doctors every move, decision, and treatment option. For my amazing, strong twin boys. Their smiles and giggles light up my world. The way they treat Ronan, love Ronan, and take care of Ronan. They are so brave and beautiful. I love to see the way Ronan lights up as soon as they walk into a room. The bond the 3 of them have is like nothing I’ve ever seen before. Their souls are connected and it will forever stay that way.

I am thankful for an amazing lady named Dr. Adams. She is the doctor who is in charge of Ronan’s stem cell transplant and when we met with her yesterday, we were prepared for a fight with the things we are requesting for Ronan and how we are questioning everything. She could not have been more compassionate, loving, and open minded. She listened, stated her opinions without being too overbearing, and agreed to listen to what Dr. Kushner from Sloan Kettering had to say regarding Ronan’s stem cell harvest. I know from listening to her and looking into her eyes, that she wants nothing but best for Ronan. She is amazingly brilliant and it is so nice to completely trust someone with the life of your son. I trust her 110%. She has poured her entire life into something she believes in and is passionate about. I will forever have the utmost respect and love for her.

I am thankful for the little things too. The fact that we have a house, food on the table, and the means to get Ronan the best treatment possible. Thank god for insurance. I am thankful that tonight I am going to go out to enjoy my husband and friends to the fullest. After this past week in the hospital, I really need some time with Woody. Everyday, I find myself humbled and thankful for pretty much everything in my life. Some things are new, some are old, but all are important. The thing I am thankful for most though is another day looking into Ronan’s big blue eyes and another night sleeping with him snuggled up beside me. He is such a precious gift to our family. We as a family will never be ungrateful for the petty things in life again. Ronan has put everything in perspective. What a big job for such a little boy.

P.S. Some have you have asked what we are going to NYC for. We are going there to have Dr. La Qualia, from Sloan Kettering, resect the tumor that is in Ronan’s abdomen. He is one of the  very top doctors at doing this and has been given the nickname of “The surgeon of the Angels.” They say he has a gift; a magic touch. We only want the very best operating on Ronan. He is our best shot at saving our baby and getting all of the Neuroblastoma out of his body. He knows what he is doing, knows what to look for, and has been recommended by everyone we have talked to. So NYC, here we come. <3<3<3

Have a beautiful weekend my beautiful friends.