There’s nothing like muddy boots on a rainy day

Ronan. I don’t know what happy feels like anymore. But being back here, is the closest thing to happy I’ve felt since losing you. It’s no secret. I’m a Washington girl at heart. I love everything about the Pacific Northwest. I think it’s one of the most beautiful places on the planet. I really needed to get out of Arizona and the forever bright, sunny skies and fake plastic trees. I needed some rain, gloom, and mud. I needed some down time without feeling the never-ending pressure of being busy and on the go. I needed to get away from the sociopathic “friend,” that I cannot seem to escape. I needed room to breathe. I miss it here. I’ve been hiding out though. Spending time with just your brothers, Nana, and Papa Jim. Normally, I would make time to see all the old familiar faces that I miss so much. But I’ve been too scared. I know what I look like and it’s not pretty. It’s sad and painful. I would rather keep sad and painful to myself. I’ve haven’t really left your Nana and Papa’s house. Except to run the lake. This has been my only escape. The rain has been constant, just the way I like it. I’m going to be sad to leave and get back to the sun that constantly seems to be blinding me. I am glad we came and I am glad we had the best time possible. We all missed you though. That never goes away no matter where we go.

Tonight, your brothers and I went to dinner with Nana and Papa. I’m trying to keep my meal down but I don’t think it’s going to happen. We stopped at the lake after dinner. I told your brothers how when I ran the lake today, I stopped and swung on the swings. I asked if they wanted to swing tonight in the cold, dark, rainy weather. They said they did so we had Papa Jim pull over and let us out of the truck. We ran around on the playground together. They were so excited as the playground equipment is all new and it had lots of fun things to play on. I dared Quinn to go down the big slide even though it was soaking wet. He did. Liam followed and ran around shouting how he was “The King of the WORLD!!!!!!!” as he climbed to some tall tower. We all talked about how much you would have gone crazy on this playground. I was able to put my sadness for you, away in my little back pocket for the 15 minutes that we played. I chased your brothers. I pushed them on the swings. I ran around with them. It reminded me of how much I love them. I mean, I know this Ronan. But when going through something like this, pain overshadows everything and it makes it hard to feel like you are able to feel love again. It might be the protection mode I have gone into as well. There was nobody closer than the two of us and then you got sick and died. I have put up a wall as it seems to be instinctual to me, to protect myself from getting hurt again. This wall was invisible tonight. It disappeared. I watched your brothers and seeing how happy they were, running around late at night, with just me, made everything else disappear. It was a good reminder that I have done such a good job with them so far, and I don’t want to fuck that up anymore than I already have. I want to be a better mama to them. I want to not be so sad all the time. I want to be thankful that I have them. They are everything to me. They deserve to have a mom who has fun with them. It’s been on this trip that I have found that part of myself again. Being here, changes everything. I just hope I don’t lose it again when we head back to AZ. Being here reminds me of how the simple things in life, really are the best. Childhood should not be about watching sports on T.V. and playing video games. It should be about jumping in mud puddles, getting dirty and not caring. It should be about going on trail walks, awesome playgrounds, shooting guns, playing in tree houses, learning about nature, spending time with your grandparents and a little girl named BriBri who is like my little sister. Who I have known since she was 5 and she is now 17. I was so scared to see her. She loved you so much, Ro and you loved her even more. I didn’t even try to hide it. As soon as I saw her, I jumped on her and fell into her arms. I held her and got teary eyed. She didn’t have to say anything…. I know she is broken into a million pieces too. It was hard for me to see. I was always her older sister who was going to protect her from everything in the world. And now this. She has to watch me, go through the worst thing possible. I’m so sorry for that. Our sisterly time together was always spent talking about boys, colleges, high school, make-up, movies, and everything we did revolved around you 3 boys. Now it’s just 2 and it is so wrong that we don’t know what to do. I tried my best to ask her things about her life that are going on. I used to be able to give her the best sisterly advice. Now, I know nothing because there are no guarantees in life, except for death. I am not about to sit and talk to my innocent 17-year-old sissy about that. I used to be so much fun. I used to be “cool” to her. Now I’m just the sad mom who lost the most beautiful boy in the world. I’m the sad mom who fought for 8 months taking care of her cancer baby. I’m changed. I’m different. But the bond between us two girls will always be there. Once you love someone with all of your heart, nothing can stand in the way of that. We will find our place back together again. Baby steps. It’s just so hard because I know deep down, all we want to do is curl up together and cry. And that might have to happen at some point to just get it out there and acknowledge what has happened. The most awful thing in the world that makes people so uncomfortable and sad, that they would rather just not talk about it. I get it. I love you Boo. I will forever think of you as my little sister. I will promise to try to take care of you like I used to. I won’t let this too much reality, come between us. And you are 17 now! So crazy! You are so young, beautiful, and have your whole life in front of you. I know you are going to do amazing things. I hope I can guide you the best I am capable of. I miss that so much.

And today. 12.29.2011, it’s been 10 years. 10 years since I married my best friend. A relationship that started off on a crazy night. A relationship that I knew on our first date, that I was going to marry him. We bonded over late night dance parties to his juke box. Playing Zelda for sometimes weeks when we had off breaks from school. We were both night owls and loved to sleep in late. Our love for concerts and music. His, Pearl Jam. Mine, Prince. But I ended up converting over to Pearl Jam and became just as crazy for them as he was. We were two young kids, who were crazy for each other from the beginning. Here we are 10 years later. It seems like just yesterday that I married my Woo. We had such big plans for our 10 year. Tomorrow, I’ll be in an airport coming home late at night to him. Tomorrow, will just be another day. So it is tonight that I will tell him some things. And I know I don’t talk about him a lot on here and that is mostly because this is about my adventure with Ronan and my pain and sadness. Some things are too sacred to me still….. such as him. I also know that my husband is my best kept secret and I’d like to keep him that way. Could you imagine all the hussies that would try to go after him if they knew how amazing he really is??? I am not up for dealing with skanky bitches at the moment. Because if word got out, that a real life prince charming existed, I would be screwed. But he does. It is him. I married him. He is the best thing that has ever been mine. I’m not going to lie….. this has been super hard on both of us, individually. As a couple, we are still doing o.k. Not great, but that’s just because we are always so sad. But he still opens my car doors, he still kisses me goodnight, he still tells me I’m beautiful and he loves me. I’m the asshole. I’m the asshole who pushes away as I don’t think I’m worthy of feeling his love because I feel like everything is my fault. And he is the last person in the world who deserved any of this. I have a lot of guilt and anger that I am dealing with and sometimes I take it out on my easiest target, which is the person who loves me most. HIM. He is a saint. He is a gem. He is the truest, most honest, thoughtful, caring, brilliant, charming, and witty man on the planet. I sometimes take him for granted because I get stuck in my head that I can’t feel any of the things he so badly wants to give me again because you died, Ro. I hate that I have to admit all of this shit to you all. I wish I could tell you I am just as amazing as him, but I’m not. Not even close. I’m the asshole. And I’m so sorry Woody. I’m crazy about you. I love you so much. I am so sorry we had to lose our little boy. I’ll never stop telling you I’m sorry. But I’ll never stop telling you I love you either. I know we are fine. But fine is not good enough. I know we can get back to a somewhat happy life again because we started this together, crazy in love, and that’s never changed. Not even after going through something as awful as this.

O.k. Stopping now. I don’t want to completely mortify my husband who prefers to keep things a little more quiet and private. I’m an open book and I am so glad he is o.k. with that. He must really love me to put up with me and the shit I write on here:) I don’t think many husbands would tolerate that. So thank you Wood. For after 10 years of marriage, you still make me want to be a better person. Everyday. That’s how I knew you were the one for me when we first starting dating. You made me want to be the best version of myself that I could be. That is powerful stuff right there. You know it’s true when the other person can inspire such greatness in you. I love you to the moon and back. Again, I am so very sorry. I know how much you miss him too. I would give anything to bring him back to you. We are going to be o.k. I promise to try to not be such an asshole. I promise to try to start living the way Ronan would have wanted me to. But I know when the sadness comes, you will be there to hold my hand. I will try not to push you away so much. I love you Woo. I love you Ro. We both hope you are safe. We are both sorry. You were perfect to us. You were our everything to this entire family. We are trying, baby. The stakes are high, this waters rough, but this love is ours.

G’nite my spicy monkey boy. I love you.

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

Pure and simple happiness

I’m not sure what exactly has been going on lately. Do I dare say it as I feel like I’m jinxing myself? I’ve been feeling really happy. Like, really, really, really, happy. Not a lot of tears, not a lot of sadness, just a feeling of complete and utter happiness. I cannot remember the last time I’ve felt this way. I’ve taken this hospital thing and totally turned it around. I’m making every second that I am here with Ronan as fun as possible. We have done so much playing and laughing. Nights are the best around here. especially tonight. Tonight, we have our own room. It’s a miracle! We have taken full advantage of it too. We had Trish come over for a little while, until Ronan kicked her out. After she left, we played Star Wars and guns. We ichatted with Woody, Liam, and Quinn. We danced to some silly Star Wars thing on YouTube. We bathed his Star Wars guys and Ronan took a bath himself. Or as much as one as he could. We cuddled, snuggled, and made a fort. He stayed up super late and is just now starting to drift to sleep. I know a lot of this happiness is coming from me watching him get “better.” His pain is almost entirely gone in his arm and you have no idea what a relief that is. Seeing him hurt like that was one of the hardest things I’ve ever had to watch. I know we have scans coming up and I know it is going to be tough, but I really feel like we are going to see something positive come out of them. I feel like he is on the right track and we can start moving forward. I have nothing to base this on…. lord only knows what could really be going on in that little body of his. It’s just a feeling I have and that in turn has a lot to do with my happiness. He just looks SO great. So much like his old self. I cannot get over how strong of a little boy he is. His strength amazes me more and more everyday. I certainly do feed off of him and the way he is feeling. He is happy right now so I am happy. It is very simple.

I’m also basing a lot of this happiness on just being in New York. Don’t get me wrong, I miss my twins, my hubby, my home, and my friends, so much. But if I have to be anywhere else in the world; this is where I want to be. I feed off this city. All of the running I have done has really been helping me too. It is so therapeutic to me. There is just something about pounding the pavement and getting out all of my aggression in a way is a healthy outlet for me. Many times while I am running and if a hill becomes too hard or I get a cramp, I make myself push right though it. I like to picture Ronan as a teenager running beside me and me trying to keep up with him. I envision these things a lot. I also think about all the pain he has gone through and if I start to feel tired or sore, I know it is nothing compared to what he has gone through, so I just keep going. He is so inspiring to me and I refuse to give up on life, on running, on my relationships, on myself. I will keep pushing forward for him. Woody is very surprised at how well I am sounding lately. I told him not to hold his breath, as I know it can change in an instant… but for now I am just doing the best I can in this very moment and nothing more. A good day is cherished more so than it has ever been in my life before all of this.

Trish came over today and stayed with Ronan for the day. I went back to the RMH, crashed in bed for a while due to the 3 hours of sleep I had gotten the night before. I then got up, showered, and ran down to Starbucks with my laptop to catch up on some things. I ordered my coffee…. the place was packed with nowhere to sit so I went to the nearby neighborhood pub. They have WiFi so I sat in there and drank my coffee. My friend Barbara called me and said she was on her way home and I should stop by. She has an apartment right across the street from the RMH. I told her I’d be right up. When I arrived, she wasn’t home yet and I was greeted by her lovely husband, Stewart and their adorable little dog, Uno. I plopped on the couch and was surprised at how at home I felt. I talked with Stewart for a while and a few minutes later Barbara came busting in the door as excited as could be. She had just taken a family to buy a new stroller for their 3-year-old little girl who is staying at the RMH house. Super sweet family and their daughter Brooke was absolutely darling. She has Neuroblastoma as well. They are here to have Dr. La Quaglia do her surgery on Monday. I told them they were as close to God as they could get with that man caring for their daughter. He is the next best thing. They soon left and I sat on Barb’s couch and talked with her for a bit. I did not want to leave and totally could have stayed there forever. It was so cozy and comfortable. I am so glad she is right across the street from us. Makes me feel a lot less lonely here. She is so welcoming and warm. A true New Yorker with a heart of gold.

It’s people in the world like Barb that make me feel like I am going to be o.k. in this city. I will find my way, meet new faces, and build my new little world of helpers here. It will take time but I’m on my way. There are so many nice people in this city. I’m not scared, intimidated, or overwhelmed. It just feels right. It just feels like my second home.

Tricia is leaving tomorrow. Let the tears begin. I wish I could keep her with me here forever. It is so good to be together. She will be back though and I know all I have to do is say the word. Woody is flying in on Tuesday and I called him today to see if her could please bring the boys’ with him. We talked to their teacher and she said it was fine. Ronan misses them so much. I miss them so much. We need to see them. They will come out with Wood Tuesday night until Sunday. It’s is going to be so wonderful to all be together. I’m going to turn my little Liam into a New Yorker after all:) The scan days are going to be hard with them here, as those days are always very intense but we will make it work.

Getting sleepy now and Ronan is passed out cold. He played hard today. Sweet baby boy. I hope you are all having a wonderful weekend. Thank you for checking in on us. G’nite dear friends!! We love you!!

xoxo

The worst of times are the best of times

Last night my very sweet friend, Ed, hooked our family up with 5 tickets to the New York Knicks game and floor passes. It was our intention to take Ronan, but with him inpatient at Sloan, there was no chance of that happening. Mimi and Papa offered to come and sit with Ronan so Liam, Quinn, Woody and I could all go to the game. I felt a little guilty leaving Ronan behind, but I knew how important it was for Liam and Quinn to spend some time with us. The four of us hopped on the Subway and headed downtown to the game. On our walk there, I caught myself getting really upset about not having Ronan healthy and happy and with us. It seemed so weird it just being the four of us. That was not how our family was meant to be. Woody could tell I was getting upset as I was being really quiet as I tend to do when something is bothering me. He kept looking back and asking if I was o.k. I put on my best face and told him I was. I gave myself a little pep talk about how important this was to Liam and Quinn and how I needed to try to enjoy the night as much as possible.

Once we arrived to the game, someone met us and we were taken down on the floor to watch the Knicks warm up. It was beyond awesome. We sat for a good hour and watched the teams practice and then went up to the suite where we were sitting. Before I knew it, I was having the best time. Quinn and Liam were so into the game and it was a great second half. It went into over time and the Knicks ended up winning. To my friend, Ed, who set this all up…. thank you from the bottom of my heart. You have no idea how much the 4 of us needed this time together as a family. It has been a long time since we have done something like that together. It was a great few hours of enjoying each other and something we will never forget. You have created diehard Knicks fans in both myself and Quinn.

Woody slept at the hospital last night and I stayed at RMH with Quinn. Liam went back and stayed with Mimi and Papa. The 3 of them left this afternoon back to Phoenix. Sad to see them go as we will miss them very much. Quinn is still here and has been hanging out with Woody all day while he works. I hate that he cannot be at the hospital with us and I am hoping Ronan will be discharged this week. Dr. Kushner came to see us this afternoon and was very pleased with how well Ronan is moving around. He is using his little arm more and more so that is a very good sign. We talked about the “plan” and as of now we are planning on doing scans again around April 11th. Depending on what they show, we may do another round of this chemo or go on to the NK-Cell trial. The most important thing that matters to me right now is keeping Ronan out of pain. It seems as if the radiation and chemo are doing the trick as far as keeping that under control. I find myself being able to breathe a little easier everyday as his pain becomes less and less.

This week we are focusing on getting Ronan out of here (come on ANC counts!) and spending time with Quinn. He played in the playroom of the RMH house all day while Woody worked. They had some volunteers doing mad science stuff and he had a blast. I am going to be so sad when he leaves to go back to Phoenix with Woody. A part of me really wants him to just stay here. I can’t wait for school to be out so we can have both of the boys’ coming out here more often and for a longer amount of time. It is so good for Ronan’s spirits. He completely lights up when they are around.

I am sleeping at the hospital tonight and Woody and Quinn are off at some movie. Ronan has been playing away with his Star Wars guys and I finally got him to eat tonight. Victory! He ate an entire Peanut Butter and Jelly sandwich and some Mandarin Oranges. His little appetite has been poor for a good week now. I can tell he is feeling better than he has in a while tonight due to the giggles and feistiness he has been displaying. I called him feisty tonight and he looked at me and goes, “Stop calling me spicy! I’m not spicy!” His little voice cracks me up. I spent the rest of tonight telling him stories and singing him songs. We talked a lot about all the people who are going to visit him in New York. I named off everyone under the sun and he kept saying, “Who else, mom?” I love my little conversations with my almost 4-year-old. I love you to the moon and back my little man!!!! That boy will never understand how much happiness he brings me with something as simple as his smile. It’s the most beautiful thing in the world.

My mom is taking the Red-Eye here on Sunday because Woody and Quinn are leaving. I know I am going to be a mess when Wood leaves. He is my rock and I already miss him. I love having him here with us so much. I mentioned before that we do really well in this city together. Not sure why, but we do. Maybe it’s because we are fully focused on Ronan together, without having many distractions. Makes me feel like we can do anything together… including getting our son well. My mom will stay until Friday….. I think. Tricia is also flying in next Wednesday-Sunday. Can’t wait for them both to be here with me. Ronan is very excited as well. My mom has never been to New York so I am hoping to get her and Tricia tickets to a Broadway show so she can experience something New York. I know the only thing she cares about is spending time with us, but I would like to let her enjoy New York and what it’s all about, even if it’s just for a few hours.

That is the update for tonight. I’m a little homesick but trying not to think about all the things I miss in Phoenix. It’s not things… it’s once again just my old life that I crave and yearn for. The only thing that is of importance which is being at home with Woody and my 3 healthy boys. I want that so badly that I can taste it. That’s why I have to keep pushing forward through all of this; so I can get us back there someday. For good. I can see it, I just can’t touch it yet….but I know it’s there just waiting for us. I will never give up on this baby boy of ours and he is never going to give up on me. He promised me tonight that he will stay with me forever. I refuse to let him break that promise to me. I will hold him to that until the day I die.

Miss you all very much. Thank you to everyone who has been checking in on us and all of your offers to help. If any of you that are reading this and are in New York and you want to help us out in any way, I thought of an amazing way to do so. You can donate blood or platelets to Ronan. All the information is down below and it would mean so much to us. And to all of you who aren’t in New York but wherever else you live, if you get the chance, please donate. These two things have saved my son’s life countless times. It is pretty easy to do, fast, and painless. Every time Ronan gets a bag of blood or platelets, I kiss the bag as I like to think I’m kissing the person who donated it. What an amazing thing to be able to do in this day and age and it helps so many people. Think of Ronan when you are doing it and think of all the other lives you are saving. Such a selfless act, and so simple and easy.

Sweetest dreams to all of my lovelies out there. Thank you for your outpouring support and love. Hugs and Kisses from NYC. G’nite!

xoxoxo

pastedGraphic.pdf RONAN THOMPSON Needs Blood & Platelets

Ronan is currently a patient at Memorial Sloan-Kettering Cancer Center in New York City. His treatment for Neuroblastoma requires regular blood and platelet transfusions.

Ronan would deeply appreciate your donation of blood and/or platelets and requests you ask others you know to donate. Donations not used by Ronan will be released for use by other patients many of whom are children.

To benefit Ronan Thompson all designated donations must be made in the Blood Donor Room of Memorial Sloan-Kettering Cancer Center

Please visit www.mskcc.org/blooddonations for complete information about donor eligibility and the donation process for blood or platelets.

For answers to questions and to schedule an appointment that is convenient for you please Contact:

Joe Licata – 212-639-8177

Manager, Blood Donor Program

licataj@mskcc.org

Blood Donor Room – 212-639-7648

1250 First Avenue (between 67th/68th Streets) NYC – Schwartz Building lobby

Open Every Day

Fri Sat Sun Mon 8:30am – 3:00pm

Tues Wed Th 8:30am – 7:00pm

The process for donating whole blood takes approximately1hour

The process for donating platelets takes about 2 ½ hours.

Appointments are necessary- All blood types are acceptable

FREE Donor Parking –

-Somerset Parking Garage, 1365 York Avenue –entrance on NW corner of 72nd Street

Magic Medicine…. Day 1, Round 6

I feel like I don’t have a lot to say tonight. Ronan hasn’t gotten out of bed, except to use the bathroom, since we got here on Sunday. He says his legs are hurting and does not want to walk around, go to the playroom, or anything. I tried all day to get him out of bed. I’m sure a lot of this is due to all of the pain he is in from his surgery and just feeling crummy that he is in the hospital. He has been playing with his Star Wars guys, on my iPad, watching Mickey Mouse, and we have been reading a lot of books. I did get him to giggle tonight which I really needed. I downloaded a book for him on my iPad that has Grover in it and he thought it was hilarious. He has been really sweet, but really quiet which is not my little guy. The chemo finally started this evening. It took a few hours to get him hydrated before so it was around 5:00 p.m. before it got started. He is sleeping now and I am praying that he continues to sleep without getting sick to his stomach.

Sarah came to the hospital for a few hours this morning so I could run home and shower and do a little bit of laundry. Ronan was happy to see her and didn’t even put up a fuss when I left. She is so good with him and he loves her. It was nice to get out of the hospital for a few hours just to be at home. Felt a little sad and empty though. I try not to remember my old life too much anymore because it hurts so much. I am mostly just numb to everything and going through the motions. It’s all I can do right now. I am trying to come up with a way to make this whole isolation thing easier on everybody. I worry about Liam and Quinn a lot. I am thinking I can set up Skype and do things like help with them with their homework, etc…. I miss doing normal things like that with them and I worry that they are going to suffer. They are at an age where they are going to remember this time in their life and I am trying to figure out how we can make this into something that makes them stronger little men. Woody took Liam and Quinn to the Suns basketball game tonight with their entire basketball team. They called me when it was over and they were on their way home. I heard Quinn tell Woody it was one of the best nights of his life. I am so glad they had such a good time, but hearing him say that felt like I had just been slapped in the face. Bittersweet. It was one of the best nights of his life, and I wasn’t there. Makes me sad. All the time.

My girlfriends keep telling me they are going to kidnap me soon to take me out for an unbirthday celebration. I love them all so much, but I honestly feel like burying myself in a hole and never coming out. Hospital depression maybe? Or maybe just sad because my baby has cancer. I know things with Ronan could not be going better, but I am the one who has to watch everyday as he suffers and goes through what he is going through. It is the hardest thing to see and watch; and all day long I push my fear and sadness away to be happy and strong for him. Nights get me, when he is asleep and I have nothing to do but sit with my thoughts and watch him sleep, praying that every little whimper he makes is not due to any pain he is feeling. I will have to watch him closely tonight. This round of chemo is nasty stuff. I’ve gotten so good at the “cancer lingo,” and knowing what exactly the side effects are. Words like, Vincristine, Doxorubicin, and Cyclophosphamide, roll off of my tongue with such ease as if I’ve known them entire life. They are now words that I will never forget, no matter how hard I try.

Alright, that is all for tonight. I am going to get out my own head before it’s too late and I can’t get my thoughts under control. G’nite, sweetest dreams to all of you.

xoxo

Have you ever looked fear in the face and said I just don’t care?

Ro is still in the hospital due to a low ANC count. His numbers jumped up today, which tells us he is on the up and up, but they still need to get up higher before we can come home. He is in a lot of pain due to developing Mucositis which is a side effect of the chemotherapy. It is kind of like ulcers in the mouth. Although we cannot see it inside his mouth, I can tell they are more along the lines of down his throat. He has not been wanting to eat anything so he is getting nutrition from his broviac line. We won’t be able to go home until he starts eating and everything is healing. It will take his ANC levels to come up to heal the sores. It has been a rough couple of days at the hospital and I needed a break. I called in Auntie Karen tonight so I could sneak out and Woody and Quinn came and relieved her after the ASU game. They are sleeping there tonight. I came home and caught up on laundry and straightening up the house. It feels good to have all of that done. I will have to be back at the hospital early so Woody can run home and meet with a client. It’s one big shuffle, but I am grateful for the break and quiet tonight. Hopefully, Ronan will be feeling better tomorrow and we can bring him home in the next few days. Thanks for keeping him in your thoughts and prayers. It’s hard to see your baby in pain when there is nothing you can do about it.

So, my last little post caused quite a stir in regards to a comment. I don’t want to touch too much on that but I just do want to say that all opinions are welcome here, good and bad. Everyone is entitled to their opinions but nobody is entitled to judge me. Yes, I may get on here and rant and rave about things that I am upset about and how I am feeling, but the reason I do this is because when I am living my new life, I am strong and brave and most of the time nobody even knows when I am breaking down. I only choose to let a few close friends see this side of me. Somedays I have really hard days and yes, Ronan and my twins see me cry, but I am not the kind of mom who is going to hide my feelings from my kids. I grew up in a family that feelings were not really talked about and everything was always “fine.” I hope my boys will grow up knowing that we are a family who shares all of our fears, feelings, and opinions. I don’t want them to ever think it’s not o.k. to express how we are feeling. As far as my “personal relationships” suffering… I really disagree with this. If anything they have gotten stronger. I am working on making them stronger. The people that have bailed out on me and our situation, were never real friends anyway. I have been nothing but honest in the way I am feeling and if they can’t handle it, then they are not meant to be in my life. The people who have had their feelings hurt, know that they can talk to me and we can work it out because they are the people who truly love me. To walk away from me and all of this…. well, I think that speaks for itself.

On a happier note…. I have made some new beautiful friends on this journey. We are in a club all our own and I feel so LUCKY to be part of this club. The fucking cancer sucks club has some of the most beautiful souls I’ve ever met in my life. These people know who they are, and they are family now. I am very thankful to have their shoulders to lean on. And I know they know I am there for them too. To my Laurie tonight. I love you. I love your tears, your honesty, your smile, your Jack, and the friendship that we will have for the rest of our lives. You are the light of my life and one of the brightest stars in the sky<3<3

Pink: If God is a D.J.

I’ve been the girl with her skirt pulled high
Been the outcast never running with mascara eyes
Now I see the world as a candy store
With a cigarette smile, saying things you can’t ignore
Like mummy I love you
Daddy I hate you
Brother I need you
Lover hey, “Fuck you”
I can see everything here with my third eye
Like the blue in the sky

If God is a DJ
Life is a dance floor
Love is the rhythm
You are the music
If God is a DJ
Life is a dance floor
You get what you’re given
It’s all how you use it…

I’ve been the girl with her middle finger in the air
Unaffected by rumors, the truth: i don’t care
So open your mouth and stick out your tongue
You might as well let go you can’t take back what you’ve done
So find a new lifestyle
A reason to smile
Look for Nirvana
Under the strobe lights
Sequins and sex dreams
You whisper to me
There’s no reason to cry…

You take what you get and you get what you give
I say don’t run from yourself, man, that’s no way to live
I’ve got a record in my bag you should give it a spin
Lift your hands in the air so that life can begin

If God is a DJ…If God… say If God is a DJ, Then life is a dance floor so
Get your ass on the dance floor now

Clinic Day

Ronan and I went off to the clinic this morning to do his usual Monday checks of his blood and platelet levels. Poor little guy is having bad tummy aches from the chemo last week. A lot of diarrhea and him saying his tummy hurts. I talked to “A” about this and she said it is a normal side effect from the chemo and to just watch him. She expects it to last most of the week. If it goes into next week, then we will have to do something about it. As for now, we just have to make sure he is staying hydrated. His counts are dropping, but still look o.k. We will expect them to continue to bottom out until the end of the week, then hopefully they will start to come back up. After the clinic, we went upstairs to meet with Dr. Jan who is one of the psychiatrists at the hospital. We only got to meet with her for about 10 minutes due to Ronan’s tummy hurting and him not wanting to be there. She is trying to help me work on some boundaries with Ronan.

We are still waiting to hear the finalized dates for New York. We should know in the next couple of days. It is going to be here before we know it. I am trying to mentally prepare for everything. As long as I have all my ducks in a row here, I should be fine.

Today, I spoke with Lin Sue Cooney from Channel 12 news. She has been playing phone tag with Woody since last week. They want to do a story on Ronan and our family and asked if they could come to our house to shoot tomorrow early evening. It was very last minute, but I am not going to turn down that opportunity. I will let you all know when it is going to air when I find out. I am assuming they will have to edit, etc…. Either way, I am honored. Channel 12 is the only local news channel I watch. Watch out world, this is just the beginning! Little Ronan is going to bring so much light and hope to this disease…. he will be the poster child for it. We have to find a cure. Everyday I hear of more and more babies not surviving. It is gut wrenching to read about and rips me to pieces. I try to stay away from stories like that, but it’s like a bad car accident…. sometimes you just have to look. As much as I try not to, it is a horrific reality check for me and keeps me focused on what we need to do to keep Ronan kicking cancer’s ass.

Tonight we played a lot of baseball outside. Ro has been running around like mad. There is no stopping my little guy. He runs circles around his 7-year-old brothers. I’ve never in my life seen a child like him before. He is so strong willed and determined. I dream about the day that he can just be carefree and happy and not have to live the life of going back and fourth to and from the hospital.

My sweet friend, Jules, brought over dinner tonight and it is always a treat to see her. We tried to catch up for a bit but it was busy around here with homework being done and Ronan wanting attention. We sat and ate dinner as a family, watched a little football, and Ronan fell asleep around 8:30. He didn’t nap today so he was tired tonight. After he fell asleep, I ran to the grocery store so I actually have food in my house. Ronan has been quite upset that there has been a lack of string cheese around here. We are all stocked up for a while. It’s amazing how much food 3 little guys go through. I seriously need to buy stock in Gatorade.

My friend, Gay, is coming over tomorrow to help me get ready for our channel 12 news story. She is going to help me put away all of our Halloween decorations and things like that. That women is a force to be reckoned with. I am SO lucky to have her as a friend. I hope someday after all of this is over to take a big trip with my very special girls to celebrate them and all they have done for me. A girls trip will definitely be in order and way overdue. We have so many plans for when we are done and over with this bullshit. So much of it is just going to consist of being together as much as possible and enjoying every little second of being healthy and free. Our lives will forever be changed, but we are going to change them for the better. This won’t get the best of our family<3 Nobody can take that away from us.

Last Friday night I went down to my beautiful friend and neighbor, Niki’s for a few cocktails and girl time. Tricia and Jen joined us too and I cannot tell you how good it felt to just be with them. We sat, talked, laughed, cried, and laughed some more. I swear this is the first time I have really laughed in months.  And I mean, laughed so hard that you can’t breathe and your stomach aches and hurts. It felt so good to feel something other than pain. I know I am surrounded by amazing friends when they can get me to feel that way and to just let everything go, even if it is just for a few hours. To my Niki, Tricia,and Jen…. thank you for being the beautiful souls that you are and the sisters I was meant to have. You have no idea how much that night meant to me. The only thing missing was our Lindsey and Marisa. <3 <3 I thought about them the whole night though and it felt like they were there in spirit. I love you all.

To all of you keeping up with Ronan and this blog, I think about you everyday and I am so thankful that you are touched by his story. It is going to be a long journey but it is going to be worth the ride. Sweet dreams, friends. Be thankful for what you have, who you are, and all the blessings you have in your life. You never know when something could take it all away<3<3 I pray that none of you ever have to experience what we are going through… we will walk this walk for you and hope you take the lessons along the way.