I was never going to be ready for today.

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

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

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

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

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

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

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

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

xoxo

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

 

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

Love and the Locket

Ronan. It’s days like today that give me just a sliver of hope that I am going to be o.k. That being without you, won’t kill me. I know this because today….. I felt something that I haven’t don’t feel very often anymore. Almost happy.

The morning started off as usual. We woke up around 9 and Quinn had asked to have a day at the beach. We texted Auntie Karen to see if Olivia could meet us. She sent her over and we headed out to enjoy the San Diego sun. We went down to the beach and spent a couple of hours there, being lazy and then we swam in the ocean for a while. We headed up to the pool after we got tired of the sand and the flies that seemed to be everywhere. We spent the next couple of hours at the pool and Quinn and Olivia played their little hearts out. Auntie Karen joined us for a bit and we sat and talked about you. She misses you so much. It felt nice to talk about you with her though. She told me how you will always be with her. I know this. You are part of her and always will be. She will forever be your favorite crazy “old lady.” We still giggle all the time about how you would call her this.

After our pool time, we got ready for the evening. Susie drove over from Mission Beach to see us. Macy, Quinn, Susie, Olivia, Liz and I all walked into town to have dinner. All I have to say is your New York Miss Macy is like chicken noodle soup for my soul. She makes me laugh like no other. Somehow, when we were with Liz a few nights ago, Macy started talking in her fake British accent. It caused Liz and I to crack up because it came out of nowhere and it was so awful. We have been teasing her about this for days now and it has turned into a huge joke. Tonight, we spent most of the evening being loud and laughing, while we all talked in our fake British accents. It was an evening full of taking silly pictures, British accents, laughing until our sides hurt and just having wonderful, innocent, fun. Quinn was in heaven and joined in and soaked up everything that we were saying and doing.

After dinner, Susie had to head out and the rest of us headed down to watch the sunset at the beach together. As we were setting our things down, I took off the locket that Macy bought me last week. She found it at a shop in North Park while we were waiting for our table at a restaurant and fell in love with it. She bought one for herself and one for me. It’s gold, long, heavy and we talked about how we would put a beautiful picture of you in it. It is so gorgeous and has become one of my favorite pieces of jewelry. Just knowing that you are close to my heart and inside of it, brings me such a feeling of peace. I took the locket off tonight and set it in one of my shoes. I ran off and forgot about it as we spent the next couple of hours playing on the beach, doing hand stands and silly things.

As it started to get dark we decided to head up to the Hotel Del to get ice cream. As we got there, Quinn asked to go into the toy store instead. We all agreed as the line for the ice cream was really long and it was hot and stuffy in there. We played in the toy store with him for the next 30 minutes all while still talking in our very loud British accents. We were getting ready to leave and I noticed my locket was not on my neck. I immediately went to my purse to see if I had put it in there. No dice. I panicked and told the girls that I had a slight emergency as I remembered I had set the locket in my shoe at the beach. Macy and Liz stayed with Quinn and I grabbed Olivia to come with me. We rushed back to the beach and tried to retrace our steps as best we could. Luckily, we sat and played by a very big hole in the sand which is how I got us back to the spot to where we were sitting. Turns out, this hole was not as helpful as I had thought because we did set our things down kind of far away from it. I knew was at least a starting point and it was better than nothing. We started searching for my locket and I could feel myself starting to panic. It was pitch black and the beach just looked so big; like it could have swallowed us whole. That is how I felt and right as I could feel the tears to begin to pour down my cheeks, Olivia yelled, ” I found it!” I could not believe my ears. The locket was half buried in the sand, it was dark, but somehow Olivia found it. A wave of happiness washed over me. I hugged Olivia and told her thank you. That sweet girl saved me today. It was such a good day and if she would not have found my necklace, the day for me would have completely been ruined. I know it is only a material thing, but the fact that Macy bought it for the both of us, to keep you closer to our hearts means so much to me. Thank you too, Ro. For helping Olivia tonight. I know that was you. I know you wanted me to have a good day today as you know how much I need that every once in a while.

We all came back up to the condo and I headed out for a quick run. It was late, so I didn’t do my usual route of 6 miles. I did a fast 4 instead. Macy wouldn’t have it any other way because of the fact that it was so late but she knows how I am if I don’t get my run in. She let me go but not before I gave her an exact time of when I would be back. I’ve given her the name of “wife,” now. She is my surrogate Woody. I am going to be so sad when she has to leave tomorrow. I know Quinn will too. He loves her so much. We will see her next week though as she has to be in Newport for a work trip.

This morning Papa Jim sent me a picture. It was of Liam and his first Salmon that he caught. They went out fishing on Papa’s boat early this morning. What a great way to start off my day. He looked so happy and proud of his fish. I was sad that I wasn’t there to see it, but I am so thankful for the happiness that I saw in his eyes today in that picture. He will remember that for the rest of his life.

O.K. baby. I’m going to try to get some sleep. I didn’t fall asleep until 4 a.m. last night and I promised Macy I would try to get to sleep earlier tonight. Quinn is snuggled up tightly in between the two of us. I will kiss him goodnight for you. I miss you so much. Thank you for the love and laughter today. Thank you for Macy. I would have never found her if it wasn’t for you. Your little gifts are everywhere. Sweet dreams my gorgeous boy. I hope you are safe. I love you, Ronan.

xoxo

Therapy in the form of Britney Spears

 

 

Ronan. Hi baby doll. I miss you. I fell asleep last night thinking of you and I didn’t even take my Ambien. I was so exhausted from crying, that I pretty much passed out as soon as my head hit the pillow. I was hoping to dream about you and I did in a way. The dreams I have now, that I remember, are pretty much the same theme;  just with different people involved. It’s always me talking about how you died and the people in my dream are always comforting me. I have yet to see you….. it’s always me talking about you. Last night, I had a dream I was at Dr. Campbell’s House and we were talking about you and your death. Everything in her house was white and there were animals everywhere and I remember she had really funky art everywhere. It was a very vivid dream and I remember every detail. The only thing missing in it was getting to see you. Maybe tonight you will visit me. I woke up feeling extremely hung over. I am sure this had to do with the 6 hours I spent crying over you pretty much non-stop last night. It was a release I very much needed. I didn’t want to get out of bed this morning, but I had too much to do, so I didn’t have a choice. The day went by pretty fast and I stopped by our house once to pick some things up. I went in, said hi to you, and gave you a kiss. I then returned back to the hotel where I am staying and was able to relax a little before my silly night out.

I did something tonight for the first time in a very long time. I had fun. And I didn’t feel guilty about it. I went over to Auntie Karen’s house and picked up our love, Liz, to go and do something very special to us. Something that will always be our sisterly connection and bond. Something that is a tradition to us. We went to the Britney Spears concert. We talked about you the entire ride out there. She still can’t wrap her 21-year-old mind around you being gone. I told her I know because I feel the same way. We both talked about how it feels like you weren’t even real. You were just too beautiful, too powerful, too strong, too wise, and we both said how you were unlike anyone that we had ever known on this earth. It felt good to talk to Liz about you and to listen to her talk about you to me. She loves you so much and you were crazy about her.

Once we arrived to the Jobbing Arena, we sat in the car for a while and watched all the people in their crazy outfits walk by. It was such entertainment and I finally found myself relaxing. I had mixed feelings about going tonight, but I am so glad I did. Dancing my butt off to Britney Spears’  “I’m a slave for you,” while Liz’s arm was intertwined with mine, is exactly what the doctor ordered. We danced, laughed, talked, sang, and it all felt good. I needed this tonight to remind myself that I am still alive. I’m not dead like I have felt for the longest time. Feeling alive for those 3 hours that we were there was so therapeutic. I told Liz how much you used to love Britney and how we used to dance to all of her songs together when we were doing chores around the house. She loved hearing that. After the concert was over, a huge thing of sparkly confetti was shot off into the air. It was all purple and Liz and I were covered in it and hysterical with laughter. We squeezed each other when we saw what color it was. Your favorite color, Ro. All for you:)

I’m going to get some sleep now as it is late. Thank you for showing me that it is o.k. to be happy even though I am so sad. Thank you for showing me that happiness will exist in my life once again. I can feel you pushing me with little signs here and there to make me smile. To make me feel something other than pain. I know you don’t want me hurting for the rest of my life, 24 hours a day. Thank you for the break tonight from this pain. I love you to the moon and back, baby. Sweet dreams. I hope you are safe.

xoxo

You belong among the wildflowers

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

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

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

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

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

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

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

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

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

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

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

xoxo

Never looking back

Hi my friends. I’ve missed you. It’s been a whirlwind of a week to say the least. We did our duty as parents to get all the opinions possible as far as Ronan goes. We have met with the best doctors, visited the best hospitals, talked to everyone we could get our hands on, strategized, analyzed, over analyzed, asked hundreds of questions only to come up with the one answer that I knew was there all along. I said this in my blog in December. I’ve known it in my heart for months now. New York is going to be the place to heal my baby. New York is where we were meant to be. I was very impressed with Dr. Mosse at Chop. That woman is amazing and I believe in what she is doing. She basically recommend MIBG therapy for Ronan to get us back on track for his Stem Cell Transplant, Radiation, and Antibodies. It is a good plan and the data is there to back it up; but the one thing we couldn’t get past was what if the MIBG therapy to get Ronan to minimal disease didn’t work. Then what? We are not going to send him into Transplant and we would have ended up at Sloan anyway, but with fewer options. Chop follows the standard COG protocol for treatment and through all of this, I have learned that Ronan is so unique, that he is not meant to follow the “standard route” of treatment. Dr. Kushner can offer us everything Chop has offered us and more. More options, more choices, more freedom. This man is not looking at my child as data. This man is looking at my child as an individual and will do whatever it takes to cure him of this awful disease. Ronan is not a number and Dr. Kushner truly will do whatever it takes to save his life. His hands are not tied by anyone. He can do whatever he wants and will. I’ll admit, this makes me a little nervous as I feel like he’s a bit of a wildcard. But that is a good thing. This disease is so aggressive that we have to give it all we can. I’ve nicknamed Dr. Kushner  my maverick Cowboy. Not to mention he defines brilliance. He is so unbelievably smart and is so dedicated to what he is doing. He believes he has revolutionized the treatment for this disease in a less toxic way. I am all about that. The less toxicities Ronan has to suffer, the better. The bottom line is, Woody and I both trust this man completely. He is the BEST. He is our best shot at getting rid of Neuroblastoma for the rest of Ronan’s life. He has no hidden agenda, he’s not worried about bringing in money, this is not a business to him. It is his passion, his life, and he is going to save our son. We are going this route and never looking back. New York is our future, New York is going to bring our baby back to us. There is no other option. So, the plan is in place and this gives me much peace of mind. Ronan has a long way to go as far as treatment goes but we will make this work. I will go in to detail later about what exactly we are doing but now, I am much too tired. We got home last night at 11:00 and I have been up since 7 this morning and am emotionally beat.

I texted my Mr. Sparkly Eyes tonight and told him that I will never understand why bad things happen to good people and that nothing in my life makes sense anymore. He called me back but I didn’t get to talk to him due to walking into a movie with my girlfriends. He is the best at calming me down with his words of wisdom. He brings me back to my center which I so need in my life right now. Today was a shitty day. Beyond awful but out of respect for others, I’m not going to go into details. I will just say that nothing in life makes sense and it is fucking beyond cruel. If one more bad thing happens this year, I may seriously strangle someone. Is it too much to ask for someone to throw a little happiness my way?? I cannot take having my heart broken all over again. It’s going to be hard enough having to uproot my life when someone whom I love so very much, needs me more than ever. And guess what? I can’t be here because some asshole named cancer has taken over my life, the life of my son and everyone around me. Good things better start happening and happening fast. Life should not be this hard, this painful, this sad. Tonight, my heart is broken and it’s nothing I can fix. My heart breaks for the most beautiful soul on this planet and all I want to do is take her away from all of this bullshit called life. Is anything in this life even true anymore? Because it all seems like a sick joke to me. I’m watching things happening left and right to people I know and they are not good things. We are all good people and it just does not make any sense. I guess the saying “You can’t make sense out of nonsense,” is really true. Well, I’ve had it with this nonsense and I am ready for a break from Phoenix. It’s time to get the show on the road and get Ronan better. Phoenix is not going to be the place to make this happen. We are ready for our new journey in New York to start and are welcoming it with open arms. So Ro baby, hold on tight…. you are about to turn that city upside down!

Ronan has felt great, looks amazing and is ready to take this on. Nothing can stop this kid. He was such a little trooper our entire trip and made every single nurse, doctor, and random stranger who worked in the cheese steak shop in Philly, (HI HELEN!) fall in love with him. I can’t tell you how many times people told me how he was the most beautiful child they had ever seen. He has such a light about him that attracts everyone because they can just tell by looking at him that he is going to do something very special with his life. He already is. I thank god everyday that he is mine. The look of determination in his eyes never goes away. He knows what he is up against and he is not scared. He is so brave, beautiful, and inspiring. Some days, I just sit back and watch how happy he is. He has no idea how awful his cancer is, he is just another happy kid who gets to take a lot of trips and have a lot of fun adventures. Everyday in Ronan’s life is an adventure and he is living everyday to the fullest while teaching us the true meaning of the things we surround ourselves with and how we choose to live our lives. We as a family feel so lucky to learn these things from him. Our little mini master yoga🙂

We have a busy weekend full of the twins’ sports which I am so excited for. We get to go and watch them play baseball and basketball tomorrow. Cannot wait for that. Ronan and I have to fly out to NYC next week for a couple of days to get the ball rolling on some things so I’ve got to get working on that as well. It’s non-stop and most days, I feel like I don’t even have time to breathe. I keep telling myself this is not the time to breathe, this is the time to run this bitch of a marathon and not stop until we are on the other side. I can do this thanks to the amazing support of my hubby, family, and friends. I won’t let you all down and most importantly, I won’t let Ronan down. We will get him through this. That I PROMISE.

Ice-age heat wave, can’t complain.
If the world’s at large, why should I remain?
Walked away to another plan.
Gonna find another place, maybe one I can stand.
I move on to another day,
to a whole new town with a whole new way.
Went to the porch to have a thought.
Got to the door and again, I couldn’t stop.
You don’t know where and you don’t know when.
But you still got your words and you got your friends.
Walk along to another day.
Work a little harder, work another way.

Well uh-uh baby I ain’t got no plan.
We’ll float on maybe would you understand?
Gonna float on maybe would you understand?
Well float on maybe would you understand?

The days get shorter and the nights get cold.
I like the autumn but this place is getting old.
I pack up my belongings and I head for the coast.
It might not be a lot but I feel like I’m making the most.
The days get longer and the nights smell green.
I guess it’s not surprising but it’s spring and I should leave.

I like songs about drifters – books about the same.
They both seem to make me feel a little less insane.
Walked on off to another spot.
I still haven’t gotten anywhere that I want.
Did I want love? Did I need to know?
Why does it always feel like I’m caught in an undertow?

The moths beat themselves to death against the lights.
Adding their breeze to the summer nights.
Outside, water like air was great.
I didn’t know what I had that day.
Walk a little farther to another plan.
You said that you did, but you didn’t understand.

I know that starting over is not what life’s about.
But my thoughts were so loud I couldn’t hear my mouth.
My thoughts were so loud I couldn’t hear my mouth.
My thoughts were so loud

Just FYI… This is what I feel like screaming tonight and I know a bunch of my closest friends would agree with me hands down. I am so lucky to have the circle of friends I do. We are so amazingly close that I consider them sisters and we would do anything for each other. Thank you girls, for rallying when one of us needs it the most and for the fact that we will all come out of this stronger, wiser, and even more beautiful. I love you all so much. You especially my sweet soul sister. You have held my hand from the beginning of all of this and have never let go. We can get through anything together.

G’nite to all of you beautiful people out there. Thank you for all the praying and loving you are doing for us. I thought of all of you while making this big decision. You were a huge factor in us choosing this route and I truly believe it was a decision that was met with such ease because of all of the positive energy you were sending our way. Sweet dreams!!!!!

xoxo

The most wonderful time of the year

Christmas in New York truly is magical, even under our circumstances. Today, we spent the morning hanging out at the Ronald McDonald House, just enjoying the activities that they had going on. Around one, I skipped out, hailed a cab, and went over to pick up Liz so we could do a little holiday shopping. I had yet to get Wood a thing and talk about waiting until the last minute. Today really was the only free day I’ve had alone to do his shopping. Liz and I walked the streets of New York for 5 hours straight. It was busy, chaotic, and so much fun. We had the best time together and I feel so lucky to have her in my life. She is such an amazing young lady and truly is like a sister to me. The streets and shops were full of people everywhere and I could practically feel the city buzzing with the excitement of the holidays. I loved every second of being right in the middle of it. Today, I enjoyed a day of escaping our reality for a few hours…. even though Liz and I talked about Ronan a lot, we spent most of our day just enjoying our surroundings. It was a wonderful Christmas Eve day. Tonight, everyone came over to the Ronald McDonald House and we hung out. Ronan had a couple of meltdowns… he’s tired tonight; but happy. Liam and Quinn have been great and we have really been enjoying them. They love staying here with us. RMH does such an amazing job of having fun activities for the kids to do and everyday there is something going on. We feel so blessed to be staying here for such a long amount of time. It is a very safe, fun, positive, environment. I just know Quinn and Liam are going to look back at this Christmas and remember it as being a fun time, full of lots of laughter and love.

I wonder what you are all up to. I wonder if Christmas means more to you this year? It does to me. All I want for Christmas is for my family to be healed, my friendships to be stronger, and to have Ronan healthy. It was so hard for me to see his tumor on the scan yesterday. It made everything so real and seeing the very first scan, when the tumor was everywhere, took my breath away. It was so huge before. I just don’t know how that thing was growing in my baby and we had no idea. His stomach did not protrude at all…. he acted and felt fine. The doctors could not even feel it when they pressed on his stomach, yet it was everywhere. Such a scary thing. It it wouldn’t have been for his little left eye, we would have never known what was going on. I am thankful every single day that it metastasized up into the orbit of his eye… otherwise whose knows when or if we would have caught this.

Tonight, Karen, Olivia, and Liz went to church here at 11 p.m. I wanted to go with them, but felt like I needed to be with my boys. Karen said she was going to pray extra hard for Ronan, for me. What a beautiful gift they have given me this Christmas. I couldn’t ask for more. The thought of all 3 of those beautiful souls, sitting in a church in NYC, praying for us brings tears to my eyes. It’s one of the best gifts I’ve ever been given. I know he is going to be healed, I know he is going to grow up and be the most amazing man, there are too many people thinking and praying for it to go any other way. Too much love surrounds this little boy of ours.

This Christmas, I would like to say thank you to all of you and leave you with a little toast. To all of my family, friends, strangers, near and far…… thank you for thinking of Ronan and following his journey and believing in him. A toast to all of you. Cheers!

To Nearest

To Dearest

To The Truest

To The One’s Who’ve Been There

To The One’s Who Who’ll Be There

To Dropping Everything

To Honesty

To NO Judgements

To No Doubts

To Loyalty

To Trust

To Humbleness

To Knowing What Matters Most

To Having Our Back

To Asking For Nothing In Return

To Accepting

To Loving

To Kindness

To Living Your LIfe Full of Being Selfless

To All Of You, Who Know This Is True, And Know It Is Your Soul We See Shining Through.

Happiest Holidays!!!!!!