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

Ro baby takes Philidelphia and New York City

I am so happy to tell you tonight that I haven’t updated things in a few days due to a very busy, but fun weekend. It’s the first time that I can remember since before Ronan was diagnosed with cancer, that things around here felt very normal. We spent the weekend hanging out at home, enjoying family time. Woody and I snuck out for a date on Saturday night while Auntie Karen and Olivia watched the boys.’ We had an amazing dinner at Tarbell’s even though I ended up crying a bit in the middle of a conversation between Woody and myself. I tried my hardest to just be a normal couple on a Saturday night…. but the harder I try, the harder things become. We will never be that normal couple again. It’s just not in the cards for us anymore. Everything has changed; nothing is the same.  Not even a Saturday night date will be like the old days. Maybe it is for the better…. because I am so much more aware of the reality of the world around me. But it still stings. I now sit in restaurants and watch the people around me and wonder if they have the sadness in their lives that I do, but in a different form. Or maybe they are lucky enough to be blissfully happy. I know that the world is full of sadness, but as I sat at dinner with Woody, the feeling of complete aloneness washed over me. I sat and thought things like, I bet their baby doesn’t have cancer, or I bet their Grandbabies are totally healthy….Then the guilt washes over me for having these thoughts…. I wouldn’t wish this on my worst enemy. I was once blissfully happy but also blinded by ignorance. Now, I truly know the meaning of ignorance is bliss. What a bullshit way to find that out.

On Sunday I met Fernanda at Hava Java for some coffee. I love that when I was on the phone with Tricia right before Fernanda picked me up and I told Trish how I was going for coffee, Trish goes, “What part of the world is Fernanda saving today?” So adorable. I told her she was saving me:) We sat and had our coffee and she helped me write down all of my questions for the doctors at Chop. We talked about my upcoming week, but the thing I enjoyed most was listening to my new friend talk about the things in her world. Her kids, her funny family stories, the things she’s done in her life. One of the biggest gifts of all of this has been getting to know this beautiful woman. Through this crises, comes the gift of her. I will be thankful for the rest of my life for all the beauty that has shown it’s colors during the darkest time. Fernanda is one of the most colorful things that I have ever seen in my life. I so need color now. This black and white stuff is getting a bit dull and scary. Life is not black and white, Ronan is not black and white, and I wish the doctors in this world would start thinking this way too. I’m about to take all the crayons out of Ronan’s Crayola box and scribble up and down all of their stupid papers and statistics. They do not know my Ro baby.

Woody and I also spent the weekend figuring out our plan for the week. Since Ronan’s ANC counts don’t seem to be dropping and he looks great, we decided to take him out to Philadelphia to Chop. Ro and I are flying out tomorrow morning on a Corporate Angels flight. Woody has a court appearance he cannot miss, so he will be flying out tomorrow late afternoon. We are meeting Dr. Mosse on Wednesday to go over our list of questions with her and to just get another opinion and feel for the place. We decided since we were going to be in Philly, that on Wednesday we would take the train to New York and meet with Dr. Kusher at Sloan Kettering on Thursday. We will fly home Thursday night. It’s going to be a whirlwind of a trip, but one that we both feel is necessary. We have to be prepared as much as possible for what we have ahead of us. Arming ourselves with as much knowledge as possible will only help us decide on what path to take for Ronan. I think we both know in our hearts; but we are keeping our minds as open as possible.

Today, Ronan and I headed to the clinic to have his levels checked. Dr. Eshun thought he looked great and saw no need to transfuse him. Ronan was so excited about not having to get blood, he practically skipped out of the clinic office and to our car. We went home and played out in our backyard and got everything ready for our trip. Liam and Quinn came home soon after and their cousins, Luke and Lily came over to play for a couple of hours. It’s always a treat to have them spend time with us. Ronan especially loves it. It was a good way to get him ready for his upcoming travels. He is a little sad about having to leave Liam and Quinn behind once again. He’s not the only one. I wish they could come on these trips with us but I understand how important stability is in their lives right now. I also understand how important it is to be able to just focus on Ronan, the doctors and get the job done. I cannot wait to get back home to them already though. So glad we will have the weekend together. Ronan is set to start his 8th cycle of Chemo March 14th. Hopefully we will stay hospital free until then. It would be so nice to continue to be at home. There is no place he would rather be.

Woody said to me tonight, “Aren’t these supposed to be the happiest times of our lives?” How do you even respond to that?? I just nodded my head and gave him the best smile I could, which wasn’t much. Fucking cancer. Thanks for robbing all of us of this precious time in life. I HATE YOU.

Hope you all have been well. Wishing you a night full of sweet dreams. Happy Birthday to my Little M today too. I hope you go my message and are having a wonderful time in NYC. I miss you so much and can’t wait to celebrate you when we both get back from our trip and things settle down as much as possible. I love you, Marisa <3

Safe travels for us tomorrow! It’s going to be a very busy next few days!! G’nite friends!!

xoxo


A warning sign
I missed the good part then I realized
I started looking and the bubble burst
I started looking for excuses

Come on in
I’ve gotta tell you what a state I’m in
I’ve gotta tell you in my loudest tones
I started looking for a warning sign

When the truth is, I miss you
Yeah the truth is, that I miss you, so

A warning sign
You came back to haunt me and I realized
That you were an island and I passed you by
And you were an island to discover

Come on in
I’ve gotta tell you what a state I’m in
I’ve gotta tell you in my loudest tones
That I started looking for a warning sign

When the truth is, I miss you
Yeah the truth is, that I miss you so
And I’m tired I should not have let you go

Ooooooooooooooooo

So I crawl back into your open arms
Yes I crawl back into your open arms
And I crawl back into your open arms
Yes I crawl back into your open arms

Deep breaths, Patience and Xanax

Fork em' Devils!

What a long day. We don’t know anything yet but should know the results by tomorrow afternoon/evening. Now Dr. Eshun will meet with a team of doctors to go over the results of all the scans combined, with a fine tooth comb. Waiting is the hardest part. Sleep is going to be extra difficult tonight. UGH. I hate these nights.

Today, we started out at the clinic just doing Ronan’s normal labs. He needed to get blood, but we did not have enough time to do it before we had his MIBG scan. We will go back tomorrow for a transfusion as his counts were a little low. We did have some time to kill in between the clinic and our scan time so we went to the car wash and ran home for about 15 minutes. We then headed back to PCH to get ready for Ro’s scan. He was in a pleasant mood today and was excited as always to see Dr. Maze. We brought him a coffee and Ronan introduced Dr. Maze to his favorite show that he was watching on his iPad, Max and Ruby. Dr. Maze and our favorite of his helpers, Angela, were eating Ro up like always. We had some fun play time with them before it was time for Ronan to get his “sleepy medicine.” We did the usual, I held him, and Dr. Maze injected him. Ronan cried out his usual, “Mama, Mama, Mama!” I put on my brave face and gave Dr. Maze the look he knows so well now, which is, take the best care of my baby ever. I don’t even have to say the words anymore. He knows and he does. So thankful.

I walked myself out to the waiting room where Auntie Karen and Fernanda sat waiting for me. I am so glad they were there to keep me company today. They kept my mind occupied and I am so happy the two of them finally were able to meet. I am so used to going to PCH alone and by myself and I never realized how much work it is for me. Today, after Ro came out of anesthesia, Fernanda went and got my car for me so I didn’t have to walk all the way to the parking garage while carrying my bags and Ronan as I usually do. Today was easy and I am going to try to make myself take the help from my friends more often. It makes all the difference in the world. They kept my mind busy and my spirits happy. Thank you both for today…. I know I tell you all the time, but I love you so much. Ronan woke up a little grumpy and just wanted to get out of there asap. That is precisely what we did.

We came home to Mimi and Papa helping Liam and Quinn with their homework. Ronan was starving so I made him his favorite scrambled eggs and he scarfed them down. Woody came home soon after and we snuck out just the two of us for dinner. It’s been so long since just the two of us have gone out alone. It was nice to just sit with my husband and try to be as normal as possible. I caught myself laughing easily at his funny stories and we got caught up on our plans for the weekend. It was a very nice, much needed night together. My mom comes into town tomorrow until Monday and I am so very excited to see her. It should be a busy, fun, weekend <3

Fernanda sent me a text tonight that melted my heart. She said one of her little boys’, Brando, who is four, was at school today and a little boy asked him where his mommy was. Brando told the little boy that his mommy was at the hospital helping a little boy grow back his hair. That is one of the cutest things I have ever heard and filled my heart with so much joy. Fernanda is doing so much more than that; she is teaching me what it truly means in life to be an amazing person to the core. What it means to live a life full of passion, laughter, and love with just the right about sass to go with it. Fernanda is the kind of women who can light up a room with her quick wit and bright eyes. I told you she has the same sparkle in her eyes as Ronan and I find so much comfort in that. Even though what we are going through, sucks balls, I am so thankful for the beautiful souls that I am surround by. If not for this, I would be missing out on all the loveliness that has surrounded me for so long, but I just didn’t know how beautiful it truly was until now. Everyday is a combination of heaven and hell…. it’s a beautiful, tragic love story to the fullest.

Deep breaths tonight. Hot Yoga at 5:30 a.m. Yes, please. I will be there and I will be focusing all of my energy into my Ronan baby like I always do. We need some good news tomorrow. Please.

G’nite and sweetest dreams to you all. Love you for checking in on us and loving our little Ro so much.

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.

A Margarita, Sangria, or George Clooney??

I talked to Dr. Wood this morning and Ronan’s ANC counts came up from 0 to 25. This still doesn’t mean we will be getting out of here anytime soon as they have to be up to 200 and rising for Dr. Eshun to discharge us. Dr. Wood said he expected us to be here until next week. Our little monkey is getting restless and tired of being here. How in the world am I going to entertain him until next week? We will just have to make due. My friend, Fernanda, came and sat with Ronan for 4 hours today so I could run home, shower, do some laundry, and run some errands. I got a chance to catch up on the phone with my Susie and Bethany. Both of those phone conversations were long overdue and it was so good to hear both of their voices and catch them up on things. I miss them both so much. Thank you, Fernanda, for taking such great care of Ronan for me. He LOVED having you here and is still talking about the things you two did. I am so lucky and blessed to have the amazing friends I do. I am thankful every second of the day for all of you. <3<3

I am really, really, really, excited for a few things that some amazing people are stepping up and doing for us. Not going to go into too many details but so many people have been coming out of the woodwork and wanting to help change PCH and the way things are done around here. They know who they are and they are just as passionate and excited as I am. All they needed was Ronan and his story to fuel the fire for making the world of Pediatric Cancer, a better place. I am so excited to be involved in this process with the vision and help of great friends. Ronan is changing the world already at the small age of 3… I can't wait to see what amazing things come of this. Thank you, my dear friends who shall remain nameless due to them being the kinds of people that don't want recognition, who just want to do amazing things when nobody is watching. I can't tell you how much I love this. There are not many people in the world who just do things without the whole world needing to know about it. I am going to have to come up with a nickname for this new friend of mine…. you know who you are<3 I will think of something after I get to know you a little bit better:) Maybe Mrs. Margarita due to your email tonight;) Love you, your passion, and your heart. Thank you, sweet girl.

The rest of today was spent playing with Ronan. We had a new nurse today that we haven’t ever had before. Imagine that! I thought we knew everyone on this floor. Her name is Holly and she was a delight. Ronan adores her and she was very sweet to us. We hope to have her again and also love the fact that she too is a former Sundevil:) The ASU baseball team came to visit the kids on the floor and I coaxed Ronan out of his room to go to the playroom to see them. I am so glad he agreed to go because he was able to meet some very special people and also get a couple of baseballs signed. Thanks Margaret for being extra sweet to Ronan. It was so nice to meet you today:) He was a little overwhelmed and a little shy but was very excited about the baseballs when we returned to his room.

I wasn’t going to ask to switch to a window room view while we were on the second floor….. because I thought we were going to be out of here by Saturday; but I did. If we are going to be here until next week; I will not survive without one. I feel like the biggest pain in the butt… as Dr. Maze said to me today, “What are we doing, playing musical rooms?” Made me laugh but that’s how it feels. What can I say, I’m a girl who knows how happy the little things make me and I’m not shy about asking for it. One of Ronan’s favorite things to do at night is to look out the window at the pretty neon lights that flash at the top of the new PCH hospital. He loves to say the colors out loud and we count the stars and say Goodnight to the moon.

Ronan is really missing his house and brothers tonight. He must have told me a dozen times how much he misses Liam and Quinn. It KILLS me to hear him say those words to me. I hate that he can’t be with them. He called tonight and talked to the boys’ for a while. I sat and while Quinn was on speaker phone and the boys’ went back and fourth telling each other how much they missed one another. It was heartbreaking and sweet all at the same time. After the phone call, Ronan and I spent the evening playing “lets throw the stuffed monkeys back and fourth to each other but not let them hit the ground due to the hot lava, game.” We played for a solid hour and he was laughing the entire time. We then went on a hut for our favorite nurse, Arica, and found her but she was in a room with a patient. She blew Ro kisses and came to visit us later tonight. Ronan was almost asleep but woke up as Arica was giving him kisses and loves, just so he could give her a smile and a giggle. I love that girl<3

Woody has been so busy this week that he hasn't been able to stop by the hospital to see us. Between his law firm and coaching the twins' two basketball leagues, he hasn't got a free second. Our catch ups have been consisting our our 3 minute phone conversations about 10 times a day. I HATE THIS. I miss my husband, my twins, my house, my old normal everyday life. I am tired of falling asleep listening to the screams and cries of our roommates and their parents. I'm tired of the lack of privacy and this sharing room bullshit. It's bad enough that my child has cancer, but it's even worse the lack of privacy that comes with it. I know, I know… the new hospital will have it's private rooms. That does me no good as of now. I'm burnt out, I'm discouraged by all the sadness that surrounds me everyday. Listening to the screams at night haunts me and is another huge reason to why I never sleep well. I know Transplant is going to be hard, but at least we get our own room. Trying so hard to find the positive in anything and everything I can.

That's all for tonight. I hear some Coconut Water and a movie calling my name. I could really use a Margarita and some freaking chips and salsa. What I wouldn’t give for that. I need to get lost in something tonight, otherwise I’m going to lose my freaking mind. Ahh… spoke too soon. My friend Stacy just texted me to ask if she could bring me anything. My reply was, 1) A margarita, 2) Some Sangria or 3) George Clooney. Can you guess what she is showing up with?!?! Either way, I win!! YAY FOR GOOD FRIENDS!!!! G’nite dear darlings. Sleep well.

xoxo

Kathryn~ Thank you for the Star Wars picture you sent for Ronan that Annie Leibovitz shot and signed for him. He is going to freak out over the picture; I am freaking out over the fact that such an amazing, talented soul, took the time to do such a sweet thing for Ronan! Made my day!! Tell her thank you as well:)