Fucking Hot Lava

Ronan. The days without you are so long. It feels like you’ve been gone forever. I didn’t sleep well last night, despite the help of my Ambien. I fell asleep around 1:30 and awoke bright-eyed and bushy-tailed at 6 a.m. I didn’t have anything of importance to do and everyone else was asleep. I showered and headed out the door 2 hours early for my therapist appointment. I wasn’t sure how I was going to kill the time, but I was restless. There was a little light on in my car that said something about one of light needing to be fixed. Normally, I would have put off this annoying errand for a month. Today, I couldn’t get to the dealership fast enough. I dropped off my car and was told to wait inside. Once inside, I headed for the Starbucks coffee line. The barista was having trouble today as her credit card machine was not working. I sat and patiently waited as she complained about this for 5 minutes and huffed and puffed about how it was the worst day ever. I wanted to reach across the counter and strangle her. If she only knew. I left a few of your Rockstar Ronan cards on her table so maybe she would see them and out of curiosity, she would Google you. Then maybe, just maybe, baby; you could teach her what the worst day of your life really looks like.

My car was soon ready and I pounced out the door to head over to see my therapist Sarah. We had a really good session. She is so sad. She reads this blog so she knows the connection you and I have. I feel like she knows you. She gets it so it is very easy for me to talk to her. We talked about you the entire time. How you were such an old soul. How you had taught me so much in such a short amount of time. We talked about your afterlife and if I ever thought I would see you again. I cried a bit, but told her I am mostly just numb. I told her how I am just waiting for my breakdown to happen as it hasn’t yet. I told her I feel like as I’ve grieved for 8 months now and now that it is over; I’m not sure what to do as I am most definitely in shock. I cried when I told her how I hoped you were not scared at all right before you left. That’s one of the things that kills me most; to think of you being scared. I promised I would take care of you forever and I hope you never stopped believing that.

After my session, I met my friend Pam so she could help me get your brothers their outfits for your service. I found what I was looking for and Pam laughed at the thought of dressing your brother, Liam, up in all white as his nickname is “Pigpen,” from Charlie Brown. Liam tends to get a little messy no matter what he is doing and making him wear white on Sunday should be interesting. We got him some Khaki pants instead.

Once I returned home, I came to find your restless brothers. They were begging for their new best friend, Luca, to come over. That is Fernanda’s little boy. They have been spending a lot of time with him. You would love him, baby. He is such a sweet soul. As we were waiting for Luca to arrive, I was in my room and walked out to find you. I asked your brothers where you were. My heart instantly dropped because I remembered that you are gone. I started panicking and it is very hard to be at home, in our house, without you. It all feels so wrong. I knew I had to get out of our house so I told the boys’ we could walk to Uncle Jay’s to go swimming. Fernanda brought Luca over and I took all three boys swimming. I jumped off the diving board for you and pictured you laughing at me. I saw a lot of you playing in the pool with us and thought about how different it would have been with you there. I miss you so much.

After we went swimming, we came back home and played outside. Heidi brought Luke over and pretty soon our house was filled with friendly people. It was good for me as I need the distraction when I am here. Your brothers and their friends played basketball with your Daddy and Uncle Jay. I sat with Fernanda, Heidi, and Tiffany and we talked about a lot of things. Soon, I became restless and jetted out the door just to get out of the house. Gay called me as soon as I was in my car and we decided to meet for a pedicure. I was nervous about it, as all the girls in the salon know you; but I decided to hold my chin up high and go in for you. You would have been proud. Just before I was trying to get up the courage to go in; Mr. Sparkly Eyes called. You must have told him I was having a hard time. I ended up sobbing on the phone to him and he did his usual listening and tried to give me his best pep talk. He asked where I was and I told him I was trying to go inside of my pedicure place. He told me in his sternest voice, to basically get my ass out of the car and get inside. I listened. I am glad I did. The girls greeted me inside with lots of hugs. It was hard; but nice. I then sat with Gay and we laughed a little and talked about you. She has not told her 3 sons yet about you being gone. They are going to be devastated.

I came home to your Nana, Daddy, and brothers. Danielle was here to to bring me Fro Yo and go over some things about your service with me. I was having her help me with the music and pictures. You cannot deny the feeling of emptiness in our house. Tricia stopped by and I went back into the laundry room to do something. Your Nana was in your room and I as I was walking down the hall, she asked me to come in and look at something. I took 3 steps in your room and SHIT. I turned around as fast as I could. Fucking Hot lava. Remember the game we used to play, baby? The hot lava game at the hospital and we could only step on certain parts of the floor, otherwise we would die in the hot lava. Well, your room to me is hot lava and I forget tonight. I am not ready to go in there yet. I screamed something and ran into my room and locked myself in my bathroom. I held myself and sobbed for a few minutes. Your daddy came chasing after me, begging me to open the door; but I would not listen. After some time, I opened the door and ran out into the living room and screamed something at everyone out there about how I didn’t want to look at Uncle Shawn’s stupid shirt that he is wearing for your service because I was not supposed to go into your room. I then ran back to my room and only remember your daddy putting me in my bed and sitting quietly next to me. He spoke about you and how much he misses you. I cried about how I just wanted you back. All I want is you back. More than anything in the world.

You daddy drew me a bath. It was extra hot tonight. I thought about how you would have wanted to get in with me, but it would have burned your skin, baby. It was a mama’s only bath tonight. I sat and looked for you. I look for you all the time. I saw you tonight. You were in the reflection of my white curtains that I had closed in front of my bathtub. I’ve taken a bath in that tub hundreds of times; and never in my life have I seen the light that flickered on the curtains in front of my tub. They have never been there. Tonight, they danced about and I reached out to touch you. We held hands for a long time. I told you how much I love you. I asked if you were o.k. You teased me with your dancing about and I could just hear your little giggle and see those bright eyes of yours. I stayed with you this way for a good 20 minutes. I then told you, “Sweet dreams, baby.”

I am now sitting on the patio with Quinny. It is so nice out tonight and the air is so crisp. I blew a kiss to the moon and told you I love you to the moon and back; because I do. A million times over. It is your birthday soon, baby. We will celebrate you tomorrow. We will celebrate you in the best way we know how. Whatever that means now. It all seems so very strange and very dream-like. Everything is still foggy. Quinny is cold so we are going to go inside in a few minutes. He is taking very good care of your “Gigi,” for you. It still smells like you. I love you, Ronan. I will see you in my dreams. G’nite my love.

xoxo

Dear Friends,

I know a lot of you have been asking about Ronan’s services this weekend. We have decided to do something very small and private for Ronan as we want to keep things as we know how he would have wanted them. Ronan never liked to be the center of attention. We also had to consider our twins in this decision as everything is very overwhelming to them. We have invited only the people that Ronan knew intimately, especially over this past year. You will be contacted via phone call, email, or text if you are invited.

I hope you know how much it means to us to feel the impact our little guy has had in our community and all over the world. We want to include you all in honoring him so we have thought of a way that you can do so. We will be releasing all different colors of balloons at his service at 7:15 p.m. on Sunday. We ask that you all join us, and release balloons as well. Lets fill the sky with love for our Ro baby. We know he will be smiling down from above at all of your beautiful faces. It would mean so much to us and I hope it means just as much to all of you. Again, thank you all for you love and support, especially during this very difficult time. One day, I hope to meet each and every one of you and give you the hug that you deserve.

Sweet dreams, my lovely friends.

xoxo

MRI, CT, and Pet scan results…. kind of

After what seemed like the longest day ever; we returned home around 7:30 tonight. Ronan insisted we stop at CPK for pizza so we met Woody for dinner. I ate my one meal of the day, Ronan didn’t eat a thing and ended up just making me hold him while I ate. As  soon as we got in the car I was almost instantly sick to my stomach. I told you I don’t do well with food anymore…. we got home and I threw up my entire dinner. Awesome. Ronan is so used to seeing me do this now he just looked at me and said, “I sorry Mama. Do you want your toothbrush?”  It was the sweetest, saddest thing ever. He then asked to be put in my bed and for me to go to sleep with him. That is precisely what I did. I curled up beside him and 5 minutes later we were both sound asleep. I feel like I’ve been hit by a bus and am physically  and mentally beat. Ronan woke up around 9:30 tonight asking for some pizza, carrots, apples, and whipped cream. Nice combo. What Ronan wants, Ronan gets. He ate all of the food that I got him and went back to sleep. We have another early day tomorrow at PCH trying to finish up his Audiology test and then going to the clinic for a possible platelet transfusion. When they drew his labs today, his platelet count was low. “A” wants them checked again tomorrow and told me he will more than likely need to get them.

After Dr. Maze came to get me when he was done with Ronan I returned to a very sleepy little boy. I sat quietly and let Ronan wake up on his own and Aubrey tracked down Dr. Wood for me so he would come down and go over the MRI,CT, and Pet scan results. The results are all preliminary results, but I’ll take them. Dr. Wood told me that the Neuroblastoma is still showing up in a few areas, which he expected. Ronan’s shoulder bones, his upper thighs, and his spine all seem to have some Neuroblastoma left in them. The activity has decreased immensely and he said for as much cancer as Ronan had in his body, in no way shape or form, did he expect it to be gone entirely. This is what the Stem Cell transplant/radiation/antibodies will do. Remember, Ronan had Neuroblastoma in every bone in his body; even his pinky fingers.  I asked Dr. Wood if he saw anything he was concerned with and he said not all, that Ronan is making great progress. I wish I could say a huge sigh of relief came over me today, but I am still left with a feeling of numbness and sadness. Ronan’s results are amazing and I am elated that his cancer is responding so well; but the bottom line is my beautiful baby boy has cancer and I just want it gone. Now. I know, I know…..this is not a sprint it is a marathon. We will get him there but for some reason today was a hard day for me. Harder than yesterday. As I said before, all of these results are preliminary and we will know much more next week after he does the MIBG scan. That is on February 10th. As of now, we are moving forward and preparing to go ahead with transplant.

I have not spoken to anyone on the phone tonight except my dear Fernanda. We talked about Ronan’s results and I listened to her as she told me how she took the time today to research what exactly needs to be done for isolation and she made out a list for me that she got from the internet of other Neuroblastoma moms. I mean really, Fernanda. Never in my life will I be able to thank you enough for all the things you are doing for me without me even having to ask. I am so thankful for you every second of the day. Fernanda’s list includes everything from scrubbing down our isolation room with a toothbrush (not even kidding), to making sure every item of clothing is bleached and sealed in a bag before it goes into the room. She told me to stop doing my laundry for the next two weeks and to leave it at my door so she can pick it up and I won’t have to waste time on that bullshit so I can fully be focused on Liam, Quinn, and Woody. I said to her, “Well what if I like doing laundry?” She then told me that the only reason I like doing laundry is because it gives me a sense of normalcy and nothing in my life is normal at the moment so to knock it off. I had to laugh as this is so true. Laundry makes me happy because it is the one thing that I freaking have control over in my life and it is something that will always be consistent and never change. It’s true; I absolutely love laundry:)

I am trying to wrap my head around giving up complete control of my life once this isolation thing starts. Just the thought of this gives me such anxiety. I think I need to make a list of the things I can control, just to make myself feel a little bit better. I have no idea what that even will consist of because my “normal” life is pretty much going to be gone. All I have to say to this right now is HOLY FUCKING SHIT. I still cannot believe any of this is real. Shouldn’t this be a movie that I am watching in the theaters or something?? This cannot be real life, this cannot be my life or Ronan’s life. I will never stop shaking my head and the tears will never stop. This is all too much. What I wouldn’t give to complain about the things I used to complain about like having to take Ronan to the grocery store because he would NEVER sit in the cart and would insist on running up and down the aisles which would drive me crazy. Or how I would feel so overwhelmed with my daily “to do” lists….. what a joke. Nothing in my old life was anything to ever complain about.  I would give anything to have my worries of the day consist of what I was going to make for dinner and how I was going to squeeze in Ronan’s nap for the day because of all of the “things” we had to do. My past life all seems make believe, like it was never really real and it was all just a dream. I could sit and cry just thinking of all the things I was ungrateful for and how much I miss what we used to have. That won’t do me any good tonight though. Tonight I am not going to sit and cry myself to sleep because today was a day full of good news. I have to remind myself that on days like today, I am not allowed to be sad. Ronan is working too hard so I will take tonight to be thankful for the progress he is making and be proud of what a strong little boy he is. He is the bravest soul that has ever existed.

Tonight, while we were waiting for my car from the valet, I caught a glimpse of myself holding Ronan in the doors to the clinic. It was another one of my out of body experiences as I looked at my refection and almost didn’t recognize who this person was with her baby boy draped over her body. It was me but I felt as though it wasn’t. It took my breath away for a second and I almost felt like I was going to faint. Had nothing to do with the fact that I had not eaten all day I’m sure;) It had everything to do with the fact that I will never get used to the fact that I am now a mom to a child with cancer. I will never accept this and I will never come to terms with it. This is just a moment in time, a sick and twisted way of Ronan having to prove how much he deserves to be on this earth. It’s my way of proving how much I love my son by fighting as hard as I can fight to keep him here and surround him with every ounce of love I have in my body.

God, am I even making sense tonight? I feel delirious and all fired up at the same time. One day at a time, one step closer to Ronan’s wellness, right Auntie Karen:):) She always tells me this…. love and miss you so much. Hope you are having fun in Cali:) Thinking of you there makes me smile because I can picture all of the laughing and fun you are having. That makes me happy and gives me peace tonight. You know what else gives me peace?? All of you. When I get pissed at the world, I think of all of you beautiful souls out there who love Ronan so much and who have faith that his journey is meant for a very special reason. Having you all believe in him and love him so much means everything to me. So thank you a million times over. You all give me strength when I need it most.

Ahhh….. my New York Miss Macy is calling me right now. Perfect timing as she gives me the giggles like no other and I can’t think of a better way to end the night. I am beyond blessed to have the most amazing friends. Love you all! Sweet dreams!!

xoxo

This picture says everything tonight. My favorite animal is a Giraffe. Ronan’s is a Zebra. Keep on holding on baby. We will get you through this.

Because I’m still in love with you

Clarity. It’s what I’ve found tonight. It came in many different forms. A long talk with Mr. Sparkly eyes, an email from my Mrs. Darling(P.S., SB… that’s your new name) , an honest talk with my husband, and the music that blares on my headphones from a mixed C.D. that my New York Miss Macy made me. Clarity tonight is mine and I’m not letting it go. It’s as if my eyes have been blurred with a film of fog for months now, and the fog has finally been lifted. I have fought so many things, trying so hard to push away all the good and beautiful things I have in my life because I feel as if I don’t deserve them. Because I feel if Ronan is in so much pain, that I deserve to feel nothing but pain as well. I know that the pain that I feel most of the time is not going anywhere anytime soon… but I do deserve to have beautiful moments in my life such as tonight. I deserve these things because I am a good, true person who says what she feels and feels what she says. I am ready to feel again, something besides sadness and numbness. I am ready to feel these things because although sometimes I get caught up in the scariness and ugliness of our situation; I know what the outcome is going to be. Ronan is going to be fine. He is going to make it thought this and I have to remember to hold on to my grace and dignity. ( Thank you, CC for saving my life the other night;) Grace and dignity because after all of this is said and done; I don’t want to have any regrets. I want to look back at this journey and know that I would not have changed a thing about the way I handled all of this. Is my honesty a fault? I don’t think so, although others may say differently. This is me, this is my life, and you all get to watch the way it plays out in the way I handle things. I am not afraid to put all of this out there as I have nothing to hide. My truth is empowering to me and everyday I am learning something new about myself and the world around me.

My husband, has fought for months to get me back because he has watched the way I’ve pushed everything and everyone away. He hasn’t ever given up on me and tonight I was finally able to tell him everything I have been feeling and thinking. He knew all of it already and told me the story of how he never wanted to get married. He never thought he would marry because he didn’t think anyone was special enough to share his life with. That was until he met me. I was the one who changed his mind, I was and am the only one for him. He asked me tonight if I was sure if I still wanted to be with him. I told him I had never been more sure of anything in my life. I have been numb for months now, but ever since New York I have slowly been making my way back to Woody. I love that man with every bone in my body and I know I was meant to drift away from him so I could come back stronger than ever. So we could come back stronger together. I know this because I knew on our first date when I was just 21 years old, that I was going to marry Woody. I may have drifted, but I didn’t go far, and a lot has to do with the fact that he refused to give up on me. Not only has Woody been fighting for the life of our child, but he has been fighting for me as well. Until you go though something as devastating and hard as this, you have no idea how easy it is to just give up on everything. I can’t do this anymore. I can’t do this without my husband and I can’t do this by myself. I need him more than ever. He needs me just as much and I have to go back to being a wife to him. Yes, Ronan is my number one focus…. but the neglect that my husband has felt is not o.k. He deserves so much better. Being with Woody feels so good to me, but it also hurts so much. Looking into his eyes is like looking into a reflection of my own eyes which are filled with so much pain and sadness. But at least I have him to share this with and someone who knows what I am feeling and understands. He is the only one in my life who truly gets it and I cannot push him away any longer. It just makes everything so much more difficult. He is my best friend, he is the one who is going to fight this battle with me. We can do this together; we have no choice because I am tired of trying to be the strong one and do this on my own. Woody wants me to let him in again; and I am ready to let him in. I want my husband back; I have missed him so much.

I don’t often speak of the things that go on with Woody and I but tonight I am getting personal. Everybody should know what a toll this takes on a marriage. I am just thankful that our foundation and marriage was so strong before all of this which in turn will help us get though this. We are going to look back a year from now and know that we just survived Hell, and that we did it together. How many people can say that?? Not many. We have 3 gorgeous sons that need their parents and two parents who are crazy about each other. Yes, Woody… I will grow old with you and it will be the happiest day of my life. Thank you for fighting for me and for us. I am here and cancer can Fuck off because it is not going to destroy my marriage. We are way too strong for that.

I have met some of the most amazing people through out all of this. Tonight, I owe everything to Mr. Sparkly Eyes.. for never judging, always being honest, and for loving me and my family. Also, to Mrs. Darling, I too have the most insane intuition which is one of the reasons I feel such a strong connection to you…. having you tell me tonight about what you are feeling meant the world to me, because I feel the exact same way. I do not think you are a kook in any way. You are such a blessing to me. New York Miss Macy… for being my ears tonight and making me great music to help escape the dark hospital nights. Great music makes everything all better. And to my Wooddawg. For being the most amazing husband alive and for knowing that I am worth fighting for and for bringing me back to you. I’ve missed you so much.

Ronan’s ANC was at 80 today…. his little bone marrow is trying so hard to come back. We will find out tomorrow if they have come up even more. Hoping, but it does not look like we will be getting out of here anytime soon. Thank you to Sarah and Stacy for helping me today so I could get out of the hospital for most of the day and actually pick my twins up from school. They were so happy to see me:) You girls have no idea how much your help means to me. Thank you so much. Love you both.

Woody often tells me songs remind him of me. This says everything perfectly tonight. I love you, Wooddawg. I will love you forever too.

Coldplay : Green eyes

Honey you are a rock

Upon which I stand
And I come here to talk
I hope you understand

That green eyes, yeah the spotlight, shines upon you
And how could, anybody, deny you

I came here with a load
And it feels so much lighter, now I’ve met you
And honey you should know, that I could never go on without you

Green eyes

Honey you are the sea
Upon which I float
And I came here to talk
I think you should know

That green eyes, you’re the one that I wanted to find
And anyone who, tried to deny you must be out of their mind

Cause I came here with a load
And it feels so much lighter, since I met you
Honey you should know, that I could never go on without you

Green eyes
Green eyes

Ohohohohooooo
Ohohohohooooo

Ohohohohooooo
Ohohohohooooo

Honey you are a rock
Upon which I stand

P.S. After 12 years of being with Woody, he still to this day, ALWAYS, opens the door for me.

G’nite beautiful souls out there. Sweetest dreams. I hope you all have someone in your life that makes you feel just as special as Woody does me. Love and health are the two most important things in life. <3<3 If you have them both, you are the luckiest people alive.

The silence scares me because it screams the truth

A week. It’s been a week of sharing a room. Hospital beds. Hospital clothes. Hospital T.V. Hospital seconds/minutes/days/nights. Hospital tears. Hospital depression. Being home last night for the entire night with my twins felt so good that it hurt. I took them to breakfast this morning and we looked just like the perfect little family. Just another mom with her sons’ on a gorgeous Sunday morning, happy, smiling, laughing. Nobody in the restaurant knew the reality of my life. They didn’t know that soon my horse-drawn carriage was about to turn into a pumpkin. They didn’t know about the 3-year-old that I have with cancer who was waiting in his hospital bed for his mom to return. That’s my reality everyday and nobody knows the pain and sadness that comes with it. It hits me hard during times like this… when I get a second of my sweet life back and then have it ripped away from me once again. I fucking hate hospitals. I fucking hate RSV season. I fucking hate cancer and all the time it is stealing away from my family life. How lovely that I was able to go home last night and spend 30 minutes with my husband and try to act normal the way a husband and a wife do, but then that turns into him saying to me while looking at an old picture of our 3 boys… “I just keep thinking, did he have cancer then? Fuck. How long has he had this?” That in turn makes me cry and I get to sit and stare into my husbands eyes as he watches me cry because some days are harder than others. Today is one of those days. Do you know why my little 7-year-old who was exhausted from the days events stayed up until midnight  with me last night insisting we finish watching “Talladega Nights?”  He told me he didn’t want to go to sleep because he didn’t want the time with me to end. I couldn’t agree more and he is so right in the way he is feeling. Just pile that on top of the things that are ripping my heart out at the moment and smashing it on the floor.

Today, I couldn’t pull my shit together and had to have my friend, Gay, come and sit with Ronan so I could get out of the hospital for an hour and cry my freaking eyes out. The tears wouldn’t stop pouring and I thought getting out of the hospital would help; but it didn’t. It’s was one of those day. Bloody, bloody, Sunday.  Sarah the Saint stayed with Liam and Quinn all day today so I could come back to the hospital and Woody could go to the office and work for the entire day. Ronan has been a handful with a lot of energy, but is still not wanting to leave his room. He keeps talking about going home and wants to know why he can’t because he says he is all better. I try my hardest to explain things to him as simply as possible but he doesn’t get it. None of this makes sense to him and it shouldn’t.

We still have our baby roommate, with no parents in sight. The nurses have been working non-stop tending to him. The second they try to put him in his crib, he starts to cry and will not stop. Poor thing. All he wants is to be held. Makes me sick to my stomach. Reminds me to be thankful. Thankful. Thankful. Thankful. Things could be so much worse. Ronan’s counts were still around 50 today. The same as yesterday. They have got to be higher tomorrow… I don’t expect a major jump, but in the low 100’s would be nice. We just want to go home. We have isolation coming up soon and this is cutting into our time with Liam, Quinn, and Woody.

I’m being rotten tonight and I know it. Time for a positive attitude adjustment. I feel better after my day of tears. Guess I just needed to clear my head and let some things out. I’m going to snuggle up with Ro now and do my favorite nighttime activity which is to watch him sleep and wonder what that sweet little soul is dreaming about. I hope only beautiful things. G’nite dear angels out there. Thank you Sarah and Gay for your help today. I don’t know what I would do without you two. Love you.

xoxo

Living is easy with your eyes closed

I have no idea what day it is even…. Wednesday I think? The days and nights are so blurry here and it is so easy to lose track of the time, days, and nights as they all seem to blend together. I do know that today is my dear birthday bunny, Jen’s birthday. Happy Birthday my sweet friend. Thank you for being a rock for me these past 5 months. I love you dearly<3 I hope you had a beautiful day.

My morning started off great with my friend Melissa bringing by coffee and her gorgeous smile for me. Ronan wasn’t up for visitors, kicked her out of the room, so we went into the hallway and caught up for a bit. Ronan would scream for me every so often so I would come and and tell him I was looking for Dr. Wood. He seemed satisfied with that answer so I was able to go back into the hallway and finish my conversation with Melissa. After she left, I was able to get out of the hospital today for most of the day. It was much needed and Mimi Kay and Papa Charlie came and sat with Ronan for me. So thankful. I can feel myself going a little stir crazy. It was nice to be out and about today. I returned around 5 to a happy Ronan and our 3-year-old roommate, Angel, who had been left alone almost the entire day. He sat and told me that his parents were never coming back. These are the same parents who left him alone last night for about an hour and when I went to ask Angel where they went he replied, “They went to smoke.” OMG. I spent the next 2 hours tonight tending to him and sharing Ronan’s popsicles and toys. I felt bad for the little boy. A 3 year old should not be left alone, EVER! He started throwing things at Ronan which in turn, made Ronan upset and the two of them were screaming back and forth at each other. Ronan ended up in tears because the roommate said to him, “You’re a bad boy!” Ronan looked at me and said, “I not a bad boy, mama!” I told him of course he was not but that didn’t stop the little tears from sliding down his cheeks. He is so tough but really got his feelings hurt tonight. There was not a nurse in sight up on 3 to handle this, so I did best I could. That floor 3 is a little coo-coo. Dr. Eshun gave us the green light to move to the 2nd floor tonight, thank god! We moved down here after the Angel incident and his parents had still not returned. We are just happy to be out of that room and down to our fun floor with the BEST nurses in the world. They were all so excited to see Ronan and he was just as happy to see them. The 2nd floor is like our second home now… it was weird to be here, but not with our “family.”  Somebody even wrote, “Rockstar Ronan,” on the whiteboard where all the nurses/patients info goes…. so cute that they know his nickname:) We are happy campers to be back down here and Ro baby is sound asleep. His ANC was still at 0 as of this morning. UGH. Please let it come up tomorrow. We are itching to get out of here and be back home.

Somebody sent some goodies tonight and I have no idea they  came from, as there was not a card. It was a bag full of some Star Wars toys, some fun books, Coffees for me…. Any takers??!?! Please let me know who you are… I would like to give you a proper thank you. It made our night! Ronan has been having a blast with his coloring books and little light saber racing car. THANK YOU!!!!!

I’m getting anxious and homesick tonight. Hoping I can unwind with a movie or something. I could seriously use some yoga in my life right about now. I feel like I have a lot to say, but my mind/body/soul is shutting down. Hospital exhaustion is kicking in. I am so thankful for my thoughtful husband and the Bose Headphones he bought me for Christmas. Music is saving my life through all of this…. thanks Wooddawg for being so thoughtful all of the time. You are the best gift giver in the entire world. Hope you all have a beautiful, blessed night. Sweetest dreams!

Extra special dreams tonight to my dear Charisma. I told you all the stars would end up aligning for you. More good things to come your way my dear. I can feel it!!

xoxo

What am I doing?? Not sleeping.

UGH. I should be sleeping. I can feel myself getting tired. I tried to sleep. I really did. I cuddled up with Ronan and he was sooooo snuggly. He soon fell asleep. I did not. As soon as I started to drift off, the nurses started coming in and out. Checking his fluids, blood pressure, giving him his anti-nausea meds, and they finally started the chemo around 1:00 a.m. This means we will be here until Saturday now. I’m not complaining. I’m not going to have a breakdown like last time. I am seriously thankful that we are moving ahead. I am thankful that he is strong enough to start round 5. One more round after this, which we will do in New York City, and Ronan will be finished with all of his chemo. I think it is going to be bittersweet. I have learned to depend on the chemo just for the fact that I know it is killing his cancer. Being off of it seems a bit scary to me. All of the unknown of all of this is scary. I just have to remember deep breaths and one day at a time. This baby is so precious to me. I guess I have such a strong bond with him because he is my last baby. Even though I would have 10 more if Woody would let me;) Kidding, but I do love being a mommy and having babies. I think it is the greatest gift on earth and I am so proud to be the mommy to 3 amazing boys.

I am a little freaked out by something. Maybe not freaked out, but I don’t know how to explain it…. So I’ll just tell you. Every summer, when I am in Washington I take my journals home with me and write my heart out. I write about things we are doing, funny things the boys have said or done, what I am feeling, etc….. I take my time in Washington and just purify my soul. It is very slow paced there, very peaceful, very quiet and I have a lot of time to reflect on things. A few weeks ago, I remembered something I had written in one of my journals while I was in Washington and I couldn’t remember if it was real or not. I went and dug it out and sure enough, in my writing, there it was. I remember waking up in the middle of the night, grabbing my journal, and scribbling down, “This is going to be the hardest year of your life. If you can make it through this, you can make it through anything.” I’ve been thinking about this non-stop now, since I went and re-read it. It is freaking me out. How in the world did I have such a strong feeling about something that it caused me to wake up in the middle of the night and write it down. I don’t know what possessed me to write such a thing, but it was written in early August. Ronan was diagnosed August 12. I never thought this would be what I was up against. But it is… and I’m not sure what this all means; but somehow I knew it was fucking coming. And I know I have to fight my hardest and pour everything I have into Ronan, Woody, Liam and Quinn. Ronan will beat this, we will survive this as a family, and we will win. We will have a positive story to tell after all of this is said and done. Ronan is the strongest little boy out there, and I know if anyone can beat this, it is him. He is fighting everyday and will never stop. I, as his mommy, will never stop. The outcome of this will be beautiful and life changing. It just has to be.

2 a.m. O.K. Really going to try to get some rest. Thanks for listening to me, thank you for being my outlet. G’nite, again<3

TGIF!

It’s the weekend! So excited to spend it with my little family. Today was a typical day for us. Big boys went to school and Woo went to work. That left Ro and I home alone. We spent the day enjoying playing outside, carved a pumpkin, and I took him to the drive through car wash that he loves to go to. He was really giggling and laughing when we were getting our car washed. He loves to watch the colored soap spray all over the windows. It was cheap entertainment and a nice little break from being stuck at home. He took a nap and I worked on some things for his website. It’s been fun doing the research on it and figuring out what I want it to look like. It’s been a good distraction for me to say the least. I talked to my friend Laurie today for a bit to get caught up on Baby Jack… the little boy who is a few months ahead of Ronan with his treatment for Neuroblastoma. She sounded so great and Jackers is doing amazing. I am always amazed at her strength and positivity. She is a good role model for me and Jack is such an inspiration. They are an amazing family and so deserve all the good things that are coming their way.

Liam and Quinn came home with their “report cards” from school today and they were so excited to show me. They both ripped them open and we went over what they said. I could not have been more proud of them. They are becoming such little men. We played outside and waited for Woody to come home. Woody and Uncle Jay came home around 4:00 with pizzas and beer. They stopped at A.J.’s and brought home a bunch of things for “Game Night” at the Thompsons. They started a game of  Risk with Liam and Quinn about 3 hours ago. I kept Ronan busy so they could play and it is still going on. Ronan had a nosebleed tonight so I tended to him and after about 20 minutes, it finally stopped. I was praying that we wouldn’t have to go to the hospital. Hoping it won’t start up again in the middle of the night. I know his platelets are starting to dip down but I think if I can keep him sleeping, he should be fine. He had a rowdy day.. lots of running and playing.

Not sure what else this weekend has in store. Liam and Quinn have a basketball game tomorrow but we won’t be taking Ronan. Now that it is turning into that time of year when the flu hits, etc…. we won’t be taking him out at all. Time to put him back in his bubble. I am going to have to get very creative as far as keeping him busy at home. Thinking some paint supplies and lots of arts and crafts are in our very near future. We have been working a lot on his school stuff and he is still fighting me on it a little bit; but I know he is learning. I hear him repeating things when he is playing and he thinks I am not listening. Stubborn little boy.

I’m going to have to say that my husband has been extra amazing lately. If that is even possible. I have no idea how he does all he does. I am so impressed by the way he is handling everything. Keeping his law firm going, being such an amazing daddy, and doting on me 24/7. If anyone is carrying the weight of the world on their shoulders, it is him. I am so thankful to be married to such a strong man who can take care of his family. There is nobody in the world who I respect and love more then him. After all that we are going through, he has kept the best attitude and positivity. He really is one of a kind and I will forever stay madly in love with him. I am thankful that my 3 boys have such a strong male role model in their lives. I know how important that is in forming what type of men they will grow up to be. Thanks Daddy Woo<3

Throughout this journey I have come to see things in such a different light. Life will never be the same again for us, but I honestly think it can be better. I have such a new appreciation for the littlest things. It is a life full of nothing but pureness and simplicity. It’s like we have been given a new chance to soak up all the things we do have and enjoy them to the fullest. Life is too short to be unhappy or worry about petty things. We are making the most of what we have, right now, in this very moment. There is no point in worrying about the future because it is the here and now that matters most. A hard lesson to learn, but a beautiful lesson indeed.

I am going to leave you with a quote that I came across today when I was doing my website research for Ronan. <3<3<3 LoveLoveLove<3<3<3

Be who you are and say what you feel, because those who mind don’t matter and those who matter don’t mind.  ~Dr. Seuss