Dear Grief/Pregancy, You will NOT kill my soul.

 

 

Ronan. This staying in bed and waiting to die, because I’m pregnant and tired, is bullshit. Hello, who the fuck does this life/grief/pregnancy/death fuckwad, think they are dealing with? This is the girl who went skydiving, just because. This is the girl, who ran a marathon, without training for it, just because. This is the girl, who is fighting with every single thing that I have, because I don’t have a choice, unless I want to curl up and die, while letting cancer take EVERYTHING away from me.  I am tired of being tired and I’m going to fight through this as hard as I can. Staying in bed, in NOT good for my mental well being. I decide to start today with, enough is enough. Just because I am tired and sick does not mean I have to roll over and totally give into that, right?? I am allowing myself to have about an hour a day in bed, not the entire freaking day. I can’t do that to myself, no matter how awful I am feeling. Am I pushing things a bit? Maybe, but it’s the only way I feel like I can survive. Hopefully in the next month or so, I’ll have some of my energy back, but until then, I WILL power through this.

I spent the day with a friend of mine. We were invited to a lunch that at a house that lasted much of the day. I went, not knowing what to expect and it was a total adventure. It felt good to be out and about, doing something a little out of my comfort zone. Actually a lot out of my comfort zone. I was in a world that I normally don’t live in anymore. A world of shiny, happy people. I don’t fit well into that world anymore, but I love our hostess so for her, I was totally game. Plus she says the word, “Fuck,” a lot which you know I appreciate. I also got to see a good friend of mine, Kristi, and it is always fun to spend some time with her. It felt good just to be out with my friend. Our conversations area always easy and honest. No need for bullshit or pretending. I don’t function well in a bullshit and pretending world. I never have and never will. We left our lunch feeling as if we had just come off of another planet, but were both so thankful for the adventure. I needed a break from MY reality today which is exactly what I got. Thanks, J- for the break, amazing lunch and your dazzling smile. It was nice to be among the living for a few hours.

Last night, Ronan, I had the most vivid dream. I was in the hospital and I had this baby of ours. It was a boy. He was so tiny and frail. I was holding him and our Mr. Sparkly Eyes came into the room. This is such a pattern, him in my dreams, always when I am dreaming about you in whatever way that I am. He came in beaming and so happy. I handed him the baby to hold and I was begging him to help me name this baby boy, as I could not think of a name. The next thing I knew, this baby started talking and saying, “Ronan, Ronan, Ronan,” over and over again. I remember being really sad because this I so wanted this baby to be you, but it was not. I woke up soon after that, totally freaked out by the baby in my dream, talking. I was aching to see your little face so badly that I wanted to throw up. I almost felt mad at the baby boy, in my dream, for not being you. I don’t know what this dream meant. If we do have a boy, we have already decided his middle name will be Ronan, of course. We have about one idea for a first name. I am kind of all out of ideas for boy first names, but we know it of course has to be Irish.

I had a nice thing happen to me today. A nice email that once again, came again at the most perfect timing. Just when I have been struggling on a little side project the past few days. It’s almost as if you are still around so much that you know when I am struggling, and you send someone into help me out or give me a big fucking sign that everything will work out. I have a lot of dreams. This one has been in the works for a while but it is nothing I have been pursuing seriously. You know how I am about just letting things, happen when they are supposed to. I am such a true believer in this, especially in the world I live in now. I might just fall asleep with a smile on my face tonight and I might just be going out to New York City in a few weeks. Our Fairy RoMo said to pack our umbrella. Gladly. Happily. Best news ever. I am sick and tired of this blinding sun. Stay tuned:) I miss our city, so very much and now I might just have a great excuse to get my pregnant ass back out there, puking and all. I am dying to see our Fairy RoMo, as well.

This is all for tonight my most beautiful boy. I miss you. I love you. I hope you are safe. Sweet dreams, baby doll.

xoxo

“Just you and me, Mom.”

I am trying my hardest to pretend this weekend is normal when all I really want to do is run away. Ro woke up bright and early as well as the twins as they had their baseball game to get ready for. Woody headed out early with them and Ronan and I waited for Tricia and Macy to pick us up to head over to the game. Macy’s eyes were full of tears as soon as she saw us and I tried my best to look away. It hurt so bad. Tricia drove my car, Macy sat in front and I sat in the back with Ro. We headed out to watch the twins play in their baseball game. It was hard for me to be there today, as I know everyone knows whats going on and I could feel the sadness in the air. I held on to Macy and Tricia’s hands, kissed my husband and cheered on my twins. I put on my sweetest smile, tucked Ronan away in his stroller and said hello to a few lovely team moms. We got to watch my boys play their game for about 20 minutes as that is all Ronan could handle. He is in pain and just wanted to go home. I left there with Tricia, Macy and Ronan in tow and talked Ronan into getting a shaved ice from our favorite place. He even went inside to pick out his flavors for him and his brothers. Macy had her first shaved ice today too. So proud I was the one to break her in. After our shaved ice, we headed to Have Java for coffees and Ronan then decided he wanted to go to Target. At this point, his wish is our command. We stopped by our house to drop off Liam and Quinn’s treats and Quinn hopped in the car with us to go to Target. It was the first time I have seen Ronan smile since we’ve been home. We went to town on getting him some new Star Wars guys and a Nerf Gun. After Target, we came back home and my mom had just arrived. Ronan was overwhelmed by the few people in our house as it was a little chaotic for him. Tricia and Macy said they were leaving and I begged them not to. I feel so strong with the two of them around. Tricia was only trying to be helpful and said I needed time with my family but I pleaded with her that she and Macy are our family. As soon as they left, I started bawling. I told them I just needed them at my house even if that meant they were picking weeds in my backyard. They both decided to respect the space that they think we need. I get it, I understand, but I am not my rational self these days. I sent Tricia a text telling her I was mad at her and as she had abandoned me. I know this is not the case at all, but not getting my way when I think I know best, is something I have a hard time with. I know that Tricia was right in leaving today. Nobody knows their place and it is a hard thing to watch. All I want is my house full of the people who I love most. Full of laugher, fun, and friends. But this is not what Ronan wants and I have to respect that.

After the Tricia fiasco, I went into straight psychotic mode and knew I was going to end up huddled in a corner somewhere bawling my eyes out. I didn’t want to freak out Liam and Quinn, so I decided I needed to take my anger out elsewhere. I ran my ass up Camelback Mountain as fast as I could and cried almost the entire way. I think Marisa called in the middle of my hike and I remember babbling to her about everyone abandoning me. She tried to calm me down, but there was no calming me today. I kicked that mountains ass and it felt good. I got to the top, prayed once again, and zoomed down as fast as I could. Tricia called me as I was halfway down the mountain begging to come and find me. I told her no, that I would be down soon. She in Macy trecked up as far as they could in their flip flops. As soon as Trish saw me she grabbed me and held me tight and we both cried. She told me how sorry she was, and how she would never leave me. I was the one who was sorry as I was a big, fat, jerk. Nothing in my mind makes sense anymore and the littlest things upset me. I know my best friend would never leave my side. I was being overly dramatic. I about peed my pants laughing when I saw what Macy was wearing while trying to climb up the mountain. Only a true friend would hike up Camelback in a red skirt and sandals, flashing everyone in sight due to the wind. As she said, “Thank god I wore underwear today.” I’m still laughing about that one.

I had them leave me at the bottom, so I could run home. It was there that I was greeted by my mom and Quinn who was riding his bike looking for me. So sweet. I was so happy to see him. He was so proud to come and find me. I am such a lucky mama; my boys love me so much.

I’m sick to death about Ronan. I feel like his body is giving out, but the worst part is his spirit and soul seem to be going as well. He is tired, grumpy, and just lays around. This is so hard for us to watch. It was only a few weeks ago that he was running around as if nothing was wrong. This is all happening way too fast. He just wants to be held and loved so that is what we are doing. I am still praying for a miracle and won’t ever stop. I keep picturing in my mind, him just getting better by himself because of all of our love. I’m hoping that months will go by and he will slowly come back to us. I dream of taking him in again for scans and hearing the words, “It’s amazing, his cancer has stopped spreading and is going away.” I dream of this a dozen times a day.

We have not had the talk with the twins yet, although I know they know something is going on. I’m trying to think of the perfect way to do it. There is no perfect way or perfect timing but as of now, I’m imagining Woody and I taking them on a walk to just let them know as little as possible. No talk about death, but explaining to them that the medicine is not working so we just need to love Ronan as much as we can. We will answer their questions as best we can, but have to try to make this as positive as possible. They do not need to know everything at this point. He is still here with us, he is still fighting but my baby is getting tired. I can see it in his eyes.

I’m scared to sleep now. What if I miss something. What if he takes his last breath and I miss it? I will never forgive myself. I’ve stopped taking my Ambien…. I’m obsessed with listening to his every heartbeat and watching him all night long. I sit and think about where he is going to go next…. somewhere with no more pain, but how can he not be in pain because I know his heart is going to be broken because he won’t be with us. This is going to be worse than any pain that he has been through at this point. He was meant to be with us forever. Not such a short amount of time as we had so many plans.

I’m restless and scared at what is going to come out of my mouth if I keep rambling on tonight. I love all of my family and friends so much. I love my Mr. Sparkly Eyes whom is always there to pick me up, especially when I’m at my lowest point. He is the only one who makes me smile now and who gives me such amazing advice. I love him for that. I love my husband for trying to be so brave, but he is so sad and I don’t know what to do except for try to be strong for him when he needs to break down. I sat on his lap tonight outside for a long time and tried to be the voice of reason and tried to reassure him that none of this is his fault like he is insisting that it is. He keeps saying it’s because of his bad genes. I told him that was bullshit and had nothing to do with this. It was just bad luck. Look at our beautiful perfect twins we have. My heart breaks for my husband and all I can do is love him, talk to him, and try to be strong for him as I did today, anytime he was around. I love him so much, that beautiful man of mine.

I’m ending tonight on that note. I love you all so much. Sweetest dreams to you all. I will never stop thanking you for your love and support.

xoxo

A winking kind of weekend

After a whirlwind of a weekend… it’s now just Ronan and myself snug in our bed. I don’t even know what went on this weekend except it was lovely. And a blur. We had a weekend full of non stop fun, laughing, eating, walking, crying, and fighting (3 boys, it happens). In other words, it was a weekend full of complete and utter chaos. Just the way it should be when you are the parents to 3 little men. We enjoyed our time together as a family and with Macy. The boys’ are over the moon for her and she was a godsend. She helped me out so much and has an infectious way of making everything better. Thank you, Mace. For everything. You have no idea how much it meant to have you here with me and my family. I love you so much.

Today was a little hard. Having everybody leave at the same time was sad. My Liam, who I tend to think deals better with all of this than Quinn, had a hard time leaving today. I may be wrong about him dealing with all of this better. He is more mature than Quinn, but all of this is still really hard on him. Macy, Woody and the boys were all upstairs in our room and we were getting ready to go downstairs as their car was waiting. I looked over to see tears pouring down Liam’s cheeks and he was saying he didn’t want to leave. This in turn made me cry, Macy tear up, and Ronan as well. I held Liam tight and promised him that he would be back soon. I tried to give him a pep talk about all the fun things at school that he was getting to go back to. How great it would be to get back to baseball, his friends, etc. I tried my hardest to be super encouraging and excited for him but all I was thinking in my head that was this was all bullshit. Bullshit that I have to be separated from my family, bullshit that we are going through this, bullshit that we can’t all be back in Phoenix together. Fucking bullshit and there is nothing I can do about it. So I lied through my teeth today and told my first-born how excited I was for him to get back to Phoenix, and how great everything was going to be. I wanted nothing more than to hop on that plane with everyone. But I have learned that getting what I want nowadays is not so simple. Everything I want, I cannot have. This is a hard pill to swallow when you are used to having it all.

After the boys left, I held on to Ronan tight as he cried. He kept saying that he couldn’t believe Liam and Quinn had to go back to Phoenix and that it wasn’t fair. I played with him and tried to distract him from the obvious. After a couple of hours, the two of us cuddled up in our bed and fell into a deep sleep for a few hours. I woke up first to my phone ringing and it was Woody saying they were waiting to get on the plane. I could hear Liam and Quinn in the background and I told Woody how sad we were. He said he was sad too, and it gets harder and harder to leave us. We said our goodbyes and I cuddled back up with Ronan. He woke up about 20 minutes later, full on sobbing about wanting his brothers. I talked him through it and gave him a really long bath to try to make him feel better. After his bath he looked at me and said in his squeaky little voice, “You make me happy.” My heart fell to the floor. He always knows the perfect words to say to me when I need it most. We spent the rest of the night playing in our room. We made a quick run to the store to pick up some food. Ronan has been eating non-stop which of course, makes me very happy.

This weekend I heard Ronan say at least 20 times that this was the best day of his life. It was beautiful and heartbreaking all at the same time. Ronan also learned how to wink and practiced the entire weekend on Macy. It is the CUTEST thing alive. To see my little boy, with a grin on his face, winking non-stop on a pretty girl. OMG. No girl stands a chance against Ronan at the age of 3…. let alone during his teenaged years. Macy got a big kick out of this as she cannot wink herself. It kept us all laughing and Ronan was so proud of himself. He told me tonight that it was a winking weekend. He is such a big flirt.

As much as I enjoyed our weekend together, I was also filled with a ton of anxiety. Scans coming up, my family leaving, etc…. As much as I tried to let go; I felt like the weight of the world was on my shoulders. Last night around 7:30 I told Woody I was going out for a run. He was happy to watch the boys for me and I was so thankful. I hadn’t run in over a week which causes me major anxiety alone. I headed out in the rain to do my usual 8.4 loop. Being from the Pacific Northwest, I wasn’t going to let a little rain stop me as running in it is one of my favorite things in the world. A little rain turned into a full on storm but I refused to turn around. It was raining sideways and Central Park was empty except for me, the crazy mama whose son has cancer. I thought to myself, “If I see another person running out here, their child must have cancer too, because nobody in their right mind would do what I am doing now.” That’s exactly how I felt. My anger pushed me through and even the rain slapping me in my face good. I’ve realized that I now crave any kind of physical pain. It makes me feel good to feel something besides the own pain that eats at my soul 24 hours a day. A break from the emotional pain of all this is something that I crave. It is my only escape. After I made it back from my run (slayer free, little M) I am not kidding you when I say I returned back to our room and had to wring my clothes dry as they were more than soaked. I looked like I had just jumped into a pool fully clothed and had about an inch of water in my shoes. But after all of that, I felt a release that I really needed. Even though I think my body went into shock after my run. It was a hard run at a fast pace and because my workouts are no longer consistent, my body knows it. After a hot shower and a lot of water later, I felt better. My sweet husband offered to run out at 9:30 at night in the same pouring rain to get me some things at Target. He took Liam with him and they grabbed a cab and off they went. They came back with new sheets, a duvet, a duvet cover, and a few other things for me. I looked at him, as he was drenched, sitting on the bed as I helped him get out the sheets so I could wash them, and I thought to myself, “What a good man. What other man in the world would run out in the rain at 9:30 at night to try to get me some things to make our place feel a little more like home?” Not one. Woody is seriously one of a kind. I’ve known this about him since our first date. It’s not often that someone ends up begin everything you could have ever dreamed of and more. I am thankful everyday of my life for that man.

Our place at the RMH leaves little to the imagination. We have spruced it up as much as we can, but it is a far cry from my home sweet home in Phoenix. I am still grateful though. I don’t know what we would do without this place. We are making the best of it and have done little things here and there. We pushed the little twin beds together and turned them into a king sized bed. The things like the Star Wars decals that a family sent us now decorate one of the walls. I’ve also turned on of the walls into “Ronan’s fan wall,” and have started to put up drawings and pictures that people have sent. This led me to an idea….. I know so many of you read this blog, and often times I wonder what your beautiful faces look like. I wanted to ask if you would take the time to send us a picture of yourselves so I can put it up on Ro’s wall. It brings such a smile to my face to know I have all of you cheering us on and I would love to be able to see what you all look like. I thought it could be a fun little project that Ronan could look forward to. He loves to talk about all of you, even though he doesn’t really get all of this in the grand scheme of things. I often just tell him how he has people all over the world, who love him and who are helping to get him better. He loves to hear this.

Alright my lovelies. We are finally getting somewhat sleepy around here. I hope you all had a beautiful weekend. Scans are on Wednesday and Thursday so keep our little guy in your prayers. He needs them and so do we. Sweet dreams.

xoxo

You must have been a beautiful baby

Ronan’s counts are still rising. He had a great day. I came to the hospital this afternoon with Liam and Quinn. The 9th floor blocked off the playroom for us so Ronan could play with his brothers. We stayed in there for about 3 hours and the boys played their little hearts out. The twins then left with Woody to go back to the RMH so Woody could shower and get some work done. I stayed with Ro for the rest of the day and evening. We played out of our room most of the day, and walked the halls shooting people and playing in the playroom. Ronan took a red marker today and colored all of his arms and said it was blood from his battles. Pretty much anything goes in the hospital as far as I’m concerned as long as he is having fun. I gave him a good bath afterwords in a little tub of water on the floor. He’s all clean now and just fell asleep as he didn’t nap today. Woody is on his way back here to stay the night so I can have some time with L and Q.

We have some scans set for Friday and Ronan will be discharged after that. They keep changing the set of scans we are having but as of now, I believe it’s the CT and Bone Marrow on Friday and the MIBG next week. That is the last I heard from one of the doctors earlier today, but that could always change. I asked New York Miss Macy if she could take Liam and Quinn for a few hours on Friday so they don’t have to sit in the hospital with us and wait. She happily agreed and I know the boys are going to over the moon about spending some time with her. It will be so helpful to us to have them off somewhere having fun, rather than sitting in a hospital.

So anybody that knows me, knows that I have been obsessed with taking pictures my entire life. Just a hobby that brings me much happiness and always has. Taking pictures of my kids is definitely my favorite subject. I have over 11,000 pics on my iphoto… so to say I’m obsessed is an understatement. All of my pictures on my iphoto are now defined to me as, this was our life before Ronan had cancer and this is now our life after. Sad but true.  Going back and looking at pictures before all of this is painful to me and makes me break down in tears. Every picture of Ronan before all of this makes me sick to my stomach as I would have never in my life have imagined this happening to him. He was such a gorgeous baby…. how can he now have cancer???  I sit and look at all of our pictures before all of this and we were such a happy family. We have so many beautiful memories and we were so blessed. I get so angry that all of that has been taken away and we have to work so hard to now find our happiness in the hardest of times. Today, as I was pushing Ronan’s asspole around the halls as well as trying to carry his gun, Star Wars guys, and his Crayola markers that he called his “Missles,” I was overwhelmed with anger. I caught a glimpse of him walking down the hall as I followed behind and he almost tripped over all of his lines. He looked back and goes, “Mom, I can’t carry my tubies and my guns.” I wanted to punch a freaking wall. It makes me sick that my 3-year-old has to worry about tripping over his lines. I am also pissed because Ronan has his 4th Birthday coming up and all I wanted was for him to be home. Instead, we will have to celebrate it in the hospital. All he wants to do is go back to Phoenix and he tells me at least once a day that he is never going to get to go back home and be with his brothers. I tell him that is not true, but no matter how much convincing I try to do, he argues with me and does not believe me. In his head, he thinks we are going to stay in New York forever and he thinks he is never going home. So much for a little boy to try to understand. Too much for a little boy to try to understand. As happy as he is, I also know that he is worried and sad and there is nothing I can do to take that away no matter how hard I try. That is my venting for the evening. I feel a little better now. Not really, but I am trying to convince my self otherwise.

I left the hospital late tonight and came back to RMH with Liam and Quinn. We went down to the common area and worked on some of their homework that their wonderful teacher, Mrs. Martin sent with them. I cannot tell you how good it felt to sit and help my boys with their homework, like a normal mom. After we worked on homework for about 30 minutes, we played the board game Operation. I have not played that game since I was a little girl. We had so much fun playing it together tonight. We are now all snug in bed and Liam and Quinn are watching CSI. A bit mature for them, but they both say they love it. My 7 year olds are now going on 30….. They are growing up way too fast:( Makes me sad.

Tomorrow is a new day. One more day closer to getting Ronan out of the hospital. Cannot wait to see Miss Macy tomorrow. Cannot wait until Friday, when we can bust Ro out of there and all be together outside of Sloan. Sweet dreams, my friends. Thank you for checking in with us. Have a beautiful day tomorrow.

xoxo

Ladies and Gentleman….. we have an ANC!

Finally! Ronan’s little immune system is coming back. It was only at 200 today, but it if finally making an appearance. I was starting to get really worried and frustrated. This can only mean good things to come… it means Ronan will more than likely be able to get out of this hospital soon and enjoy some freedom. They are not giving me a discharge date yet… but I am pushing for tomorrow. I have not heard what time his scans will be tomorrow and am waiting to speak with one of the doctors. I am trying not to get too nervous… but these scans have to show us good news so we can figure out what our next step is as far as Ronan’s treatment goes.

We have played non-stop today. It was a big arts and crafts day in our room. I went on a hunt and found us everything I could find to let us make a mess and have some fun in our room. We got messy with glue, paints, markers, stickers. We have been up and about a lot and I even got our nurse to unhook Ronan from his “asspole,” for about 20 minutes so we could run around crazy in the halls. He was so excited to be unhooked and kept telling me it was the best day ever. He is going to be so happy when we finally get out of here.

Liam, Quinn, and Woody are on a plane as we speak. They are landing around 8:00 tonight. It will be so nice to have them here and to all be together. The plan is for them to come to the hospital, sneak in a quick visit with Ronan, and I will take the boys back to the RMH and Woody will stay the night here. I am thinking this is a good idea as I have not been out of the hospital in 48 hours and I am starting the freak out a bit. I need fresh air, I need a shower, I need a full night of sleep. It will be good to spend some time with the twins too. It kills me how much I miss them.

I am waiting to talk to one of the doctors on the floor. I asked our nurse about the scans and she said that they had changed them until next week. 5.4.3.2.1- Remain calm. I told asked her to please get a doctor in here as we were not  told about these changes. I also explained to her that Woody was flying in tonight just so he could be here on scan week, which we were told would be tomorrow and Wednesday. After speaking with the on call doctor, she told me that “The Team,” met tonight and decided that they wanted Ronan’s counts to come up some more before doing the scans. Especially since they are doing a bone marrow test. They want his bone marrow to recover more before they go in and test it. I understand fully, but it still is frustrating. But it’s not in our hands so we once again will just have to roll with it. If his counts keep coming up we will do the scans at the end of the week. If not, next week will have to do. It will be fine either way. Woody and the boys are leaving on Sunday but Fernanda will be here Monday-Friday so she can be with me. So thankful for the amazing friends surrounding me and helping me through this. I can’t wait to see her and cannot believe she is leaving her 5 kids to be with me. The thought alone is enough to make me burst into tears. So.Very.Blessed.

Woody and the boys arrived safe and sound. They came directly to Sloan and Ronan and I sat in the lobby and waited for them in front of the elevators. He was so excited to see his brothers and Daddy. It was a quick reunion, as Liam and Quinn are not allowed on the floor. I grabbed my things, kissed Woo and Ro goodnight, and headed out for some much-needed fresh air and time with my favorite twins. We dropped our bags off at the RMH and then I took them to get something to eat. I was worried that Delizia’s was going to be closed, as it was already 11 p.m. I was happy to find out they stay open until 1 a.m. My kind of place. I sat with my two boys and listened as they chatted away. They had so much to say tonight and I was in heaven. I had my usual soup and they both chowed down on pizza. While we were in the middle of dinner, I had remembered that I forget to leave Woody saline solution for his contact lenses. I texted him to ask if he needed his things and he said he did and that he was hungry as well. I told him that I would bring him his things and pizza. The boys and I gathered up our things and went back down to Sloan to drop everything off to Woody and Ro. We had such a good time on our rainy and windy walk there. No complaints at all from my little men who were beyond tired; they were just happy to be with me. I so felt the love tonight. I love my Liam and Quinn so much. I miss them so much when I am away for so long. This is going to be a good week. Quinn was so excited talking all about New York Miss Macy coming into town. Liam goes, “Who’s Macy?” Quinn’s response was adorable. He goes, “You don’t know who Macy is?! I can’t believe you don’t know who Macy is. She’s one of mom’s funnest friends.” I was dying at his response. It’s like Macy is a celebrity in his eyes and everyone should know her. Beyond adorable. I can’t wait to spend some time with her this weekend with my boys. Wooddawg is excited too. Spirit Hoods will reunite!!

I’m all tapped out tonight and I’ve got Quinn in bed sound asleep beside me. Liam is in the bed next to us passed out as well. It’s pouring down rain here and that is my favorite thing in the world to fall asleep to. Hoping for some peaceful dreams tonight and to get a full nights sleep. We shall see. Sweetest dreams to you all. Have a beautiful day tomorrow. Love you. Go Ronan’s ANC!!!!

xoxo

Super Ro to the Rescue!

Lazy Sunday. Ronan and I did not wake up until 10:30 here…. still on AZ time. We had both been up late the night before, enjoying the freedom of not having a roommate in our hospital room. Knock on wood. Still no roommate. We woke up, played and Trish came by with some food for me and to sit with Ronan so I could go and shower. I got out for a few hours and just caught up on some things, organized our room, packed my bags, and showered to get ready to return to the hospital. I had to pack up more than normal, as I won’t be leaving the hospital until Woody and the boys get in Tuesday night. Hoping my sanity stays in check without the little breaks I’ve been getting. I’ve got to stay strong for Ronan and it is only a couple of days. I am hoping the walls of “The Stanley Hotel,” do not start to cave in with visions of Jack Nicholson saying to me, “Heeere’s Johnny!” I don’t need any Johnny sightings.

What a busy day! After Trish left, which was awful but I held it together. I sat with Ronan and ended up bawling. I wasn’t intending on the waterfall of tears today but they came and I let them. Ronan sat quietly and watched me cry. He asked why I was sad and I told him because I was going to miss Tricia. He said he was too. After I pulled it together…. I don’t even know where the time went today. We did our normal routine of his bath and his Star Wars guys bath. We played everything I could possibly think of. We colored, brushed our teeth for a long time, did some laundry at the hospital, and waited for Ronan’s sweet nurse, Jenn to arrive. Ronan LOVES her. She is so so so so good with him. So thankful. It’s hard enough to be away from home but we are starting to form our little bonds here. Slowly but surely. Ronan is very careful about who he let’s into his little world. Jenn has passed the test with flying colors. She thinks Ro is the funniest, cutest kid on the floor. I couldn’t agree more 🙂 He is always messing around with her and playing jokes. He just may end up being a comedian when he grows up. The things that come out of his mouth are a riot.

We did our laps tonight around the hall for about an hour. We dressed up like superheros, took our guns and shot everyone in sight. Ronan was very animated and our entire mission was very detailed. He had very specific instructions on what exactly I was to do, and I was told I had to follow his lead in everything. I was more than happy to agree. After our laps, we came back to our room and did facetime on our phone with Woody, Liam and Quinn. It was so good to see my family and talk to my boys. I miss them so much. Tuesday cannot get here soon enough, for both Ronan and myself.

Our week is a busy one so hopefully it will go by fast and hopefully Ronan’s counts will start to rise and we can get the heck out of here! The big boys arrive Tuesday night, we have scans Wednesday/Thursday, and New York Miss Macy arrives Thursday evening as well. She is so excited that Woody and the twins will be here. I told Quinn tonight that his girlfriend was going to be in town and he just started giggling. I think he may have a little crush 🙂 My friend, Ellen and her daughter, Phoebe, are going to be at Sloan tomorrow for a check up so we will be seeing them as well. I cannot wait to give Phoebe a big hug. I haven’t seen her since December after she had finished her 17th round of chemo and she was finally discharged to go home. I just hope little morning grumpy pants decides to be in a better mood so we can have a nice visit with them.

Party room time is over. We are just now getting roommates. The privacy was fun while it lasted. We took full advantage of it. Ronan is still awake and it is after midnight. He is quietly playing Star Wars in his bed. I wonder if we will ever adjust to the 3 hour time difference. Makes no difference… it’s not like we really have a schedule.

Alright my friends. I’m going to try to get my little monkey to bed. I hope you all had a great weekend full of lovely things. Thank you for checking in on us. Thank you for loving our Ro. Sweet dreams!

xoxo

Just another hospital night, yo! I don’t miss my bed at all!

 

Tonight, my heart is peaceful and content. My mind is quiet; which doesn’t happen often anymore. Tonight, I am once again filled with a peacefulness that everything is going to turn out o.k. I’m not sure why. I haven’t felt this way in a long time. I’ve been so caught up with my worrying and trapped in a dangerous place where the darkness tries so hard to take over. It consumes me most nights… especially hospital nights. Not tonight. Maybe it was the fact that I had a much-needed day out of the hospital today and these little breaks seem to help me. Maybe it’s the fact that Dr. Kushner and Dr. Modak came to see Ronan and could not believe how well he looked for having a 0 ANC. Maybe it’s the fact that I got to listen to Woody tell me how well Liam and Quinn did at baseball tonight. How when Liam got up to bat, one of the coaches told him to hit this one for his brother and he cranked the ball out of the park. Or maybe it’s the fact that I just spent the last hour walking the halls of the hospital with Ronan while we both carried our toy guns and shot every person that came in sight. Maybe it’s a combination of all of the things above. Whatever it is, it doesn’t matter. All that matters is it’s moments like this that keep me going, pushing forward, with my head held high. These little moments will carry me though to the other side of this awful mess. With Ronan in my arms the entire way.

Last night was rough. Rough as in I got very little sleep due to our stupid “pole” or “asspole” as I’ve decided to name it, going off every 20 minutes. BEEPBEEP!!!! BEEPBEEP!!!!BEEPBEEP!!!!! So. Freaking. Annoying. Every time this happens, I have to push our little red button and say, “We’re beeping!” The nurse either comes in right away, or it takes 15 minutes. Not fun for anyone. Our poor roommates included. The nurse also had to wake Ronan up twice last night to give him his oral morphine since they took off his Fentanyl patch a couple of days ago. They are slowly trying to wean him off all of his pain medication and he is now down to a really low dose of morphine. Try getting a 3-year-old to cooperate taking a medicine he doesn’t like, while waking him up from a dead sleep. Needless to say, there was a lot of screaming and fit throwing in the middle of the night. Brutal. Rough night indeed but we survived; once again.

Today, we had Ronan’s last day of RT on his arm. It’s nice to be done with that. It seems like it has really helped his pain and I am thankful. My mom came to the hospital, armed with a bag full of toys. For a small town mama, she is sure doing well getting around this big city. Proud of her 😉 I was able to leave the hospital and Ronan with my mom with promises of my return with new Star Wars guys. I went back to the RMH, showered, and got ready to meet my friend, Ellen for lunch. Ellen is the mom of Phoebe, our last roommate at Sloan. They live about an hour outside the city and she emailed me yesterday to say her parents were going to watch the girls for the day so she wanted to know if she rode the train in, if I could come and meet her. I jumped at the chance and we had a lovely day catching up. I loved hearing all about Phoebe and how she is doing. She is such an inspiration. They will both be at Sloan on Monday so considering Ronan is up for it, we will make sure we get over to the hospital to see them. Such a nice family who so does not deserve any of this and it sucks we are getting to know each other because both of our kids are dealing with cancer. Why can’t cancer pick on the real jerks in the world…. Hello rapists, child molesters, child abusers, murderers?? Cancer does not discriminate but it should. Leave us nice people and our kids alone. A-hole cancer.

After my day with Ellen, I walked the entire city in search of a couple of new Star Wars toys for Ro. He would have had my head if I had come back to the hospital empty-handed. Mission accomplished. He was very happy with my findings. I returned to find a very sweet boy waiting ever so patiently for me. Best thing in the world to come back to this dreary hospital life to. He melts my heart like butter. I also came back to find some beautiful mystery New Yorker had dropped off some goodies for us and I think, donated blood, as they left a little key chain that Sloan gives you for doing so. They also left the sweetest hand written card and only signed it, “A New York Friend.” Dear New York Friend…. who are you, you lovely person, you??? Would love to meet you and tell you thank you in person. Your gifts were so thoughtful and sweet. I had just run out of my stash of Coconut Water too. Thank you, my mystery NYC friend. You made this mama smile today.

Ronan has been so occupied tonight by watching things on YouTube. Mainly Star Wars things and we have been cracking up. I’m going to put a couple of his favorite findings on my blog. Hope you all enjoy them. Thank you, once again for your love and support. Thank you for keeping our family close to your hearts. It is such a gift to us. G’nite my sweet friends. Love you all!

xoxo

Empire State of Mind

 

I just spent the last 48 hours with Quinn and it was blissful. We woke up yesterday and I asked him what he wanted to do, as we had the whole day to spend together. He chose to go to The Empire State Building so we got ready for our adventure of the day. We stopped by Sloan before  as we went to say hello to my childhood friend, Jennifer, who came by to donate her platelets to Ronan. It was so nice to see her and introduce her to Quinn. We stayed for a little over an hour until she was ready to get started. We then headed out and grabbed a Taxi. It was a super busy Saturday there, as expected, but Quinn did so well and waited patiently to get to the top of the building. Once we were at the top, he was a little scared to go outside. It is so high up…. even made me a little nervous. I coaxed him into going outside and it was absolutely breathtaking. We stayed for a good hour and enjoyed the sights. Once we were safely back on the ground we hailed a cab and went and walked about SoHo and had dinner together. It was a perfect day with a perfect little boy. I bought him a journal at the Paul Frank store and he was so excited. He sat at dinner and wrote all about our day. It was adorable. After we finished dinner, we headed back to the RMH and then to the hospital to see Woody and Ronan. They opened up the playroom for us again so we could all hang out together. We stayed for about an hour and then Quinn and I returned home while Woody stayed at the hospital another night. I am so thankful that he spent so much time with Ronan while I had some one on one time with Quinn. The break from the hospital was nice as well.

This afternoon Quinn and I went to Delizia’s for his pizza (surprise, surprise) We ordered some to go for Woody and Ronan so we could bring it to them and let Quinn see Ronan before he and Woody got on their plane to go back to Phoenix. We spent some time in the playroom together and soon it was time for Wood and Quinn to leave. I tried to not cry but it was impossible with seeing how sad Ronan was. His little lip quivered and he buried his head in his knees. We said our goodbyes and I walked back with Ronan to his room. I sat and held him and quietly explained how Quinn and Dad would be back soon. My words didn’t matter or stop his little tears from falling. I let him cry and told him it was o.k. to be sad but it was my job to make him feel better. After he settled down, I talked him into taking a sponge bath. I filled up a tub of water and he ended up putting all of his Star Wars guys in it to bathe them before he took his bath. This occupied him for a good hour. We spent all the afternoon doing silly things like that and he finally laid down to take a little rest. He seems to be feeling better but his ANC is still at 0. Boo.

While Ronan was napping, my phone rang with a number I did not know, but I picked it up anyway. So happy I did. It was my sweet Charisma calling all the way from Australia where she is working. I was so surprised to hear her voice and so happy she called. She hasn’t been able to read my blog in a few days and just wanted an update and to see how we were doing. I updated her on some things and vise versa. She asked what our plan was and I told her that as of now, it was impossible to have one. We will have more of a plan once the results of Ronan’s scans on the 13 and 14th of April, come back. We will then decide what direction to move forward with all of this. Until then, we will just sit and wait and take things day by day. We will make the best out of each day that we have and take all the positives that we can get. It was good to talk to my friend and I told her to try to get some work in NYC so she could come and visit us. I miss her dearly.

My mom is taking the Red-Eye out tonight and arrives at 6 a.m. EST. I told her to just go to the RMH, get some rest, and we would call her when we got up so she can head over to the hospital. We can’t wait to see her and it will be so nice to have her here and her help. Now, if we could just get out of this hospital. I think we’ve been here for almost 2 weeks now…. without counting our 24 hours of freedom we had. Praying for his ANC to come up, very, very, soon. This hospital life is getting old for everybody… especially my little man.

For everyone who has been asking where you can mail things to I will give you the address to the RMH. It is

405 East 73rd Street, New York, NY 10021

Just address it to Woody, Maya or Ronan Thompson. You all are the sweetest friends/little rockstar fans/family. Thank you for all the well wishes, cards, and surprises you have sent us. Brings many smiles to our faces. I hope you had a lovely weekend. I’m going to cuddle up with my little bug now and try to get some sleep with him. Love to you all!!

xoxo

Magic Medicine…. Day 3, Round 7

Ronan and I started off the morning bright and early. He was up around 7 and was asking to go to breakfast. I needed an excuse to go and get him his Slurpee anyway to mix his chemo in, so we left the house and went over to one of my favorite breakfast spots, Taylor’s, for some grub. I ordered oatmeal, and Ronan asked for pancakes and scrambled eggs. He ate almost all of his breakfast, along with half of my oatmeal. He was so happy to be out and about and was loving how windy and stormy it was today. After breakfast we stopped at 7-11 and then went home. Woody and the big boys’ had already left for baseball and I spent the next hour getting us ready for our hospital stay. Sharon called around 10 and said they were ready for Ronan so to bring him in. Ronan was not happy about having to pack up and leave and kept saying how much he was going to miss his brothers. I told him it was only for a couple of nights and we would be back home before he knew it. Once we arrived to PCH he was in a much better mood and was so excited to hear Sharon was in the hospital working today. We only really ever get to see her at the clinic so having her on the 2nd floor today was a treat. As soon as he got off the elevator, Sharon was walking down the hall and saw us coming. Ronan ran up to her and she scooped him up in his arms and gave lots of kisses to her “boyfriend” as she calls him. He was tickled to death. Arica was also working today so it was a double surprise for Ro! He was in heaven and was in an extra happy and silly mood.

Woody came by to bring us lunch and soon after that we finally got the chemo started. It only took a few hours and then our nurse was able to unhook Ronan from his tubes so he could run free for the rest of the evening. With this chemo they only give him 2 hours of hydration afterwords so he doesn’t have to be attached to the pole 24/7. It really makes such a difference in his spirits if he is “hooked up” as he calls it, or not. We had lots of visitors today. My friend, Lisa, whom I have not seen in forever came by for about an hour. Ronan fell asleep while she was here and we sat and talked quietly. She tried to get me to take a nap with him but my mind wouldn’t let me relax even though I am mentally beat. Niki came by to give me a much-needed hug and Ronan let her stay for about 20 minutes before he kicked her out. Hey, it was better than nothing. Jen and Olivia came by late this evening and Ronan was still wide awake. He cracked them up with his little voice and bossy words. “Gilllllyyy….” “Sorry.” LOL. So funny. He was totally showing off for them with his sassiness. The girls stayed for about 45 minutes and then Mr. Boss man said it was time for them to go. He wanted me all to himself and I think his exact words were something like, “Just you and me, mom.” He was being adorably funny tonight. After the girls left, he insisted that we go down to the cafeteria because he was hungry. Off he went running out the door to our room and out to the elevator. He kept saying he was going to beat me because he is so fast. Geez! That kid had a ton of energy tonight and ran all the way to the new cafeteria. We were laughing the entire way. The hospital was really empty and quiet, but I’m pretty sure everyone could hear our giggles. Ronan has such a way of making the worst situations, beautiful and fun. As long as he is happy, and as long as we are together, you could put us anywhere and we would have a good time. I loved watching my child running around and being care free. This has been one of the best hospital nights that we have ever had.

The doctor on call said that we can go home tomorrow after Ro finishes his chemo and then just do the last day in the clinic on Monday. Yay for that! Only one night in the hospital!! Ronan is going to be so excited to be able to see Liam and Quinn tomorrow. The amount of love he has for those boys’ amazes me everyday.

Today, I had so many people send me pictures of all the amazing rainbows we had in Phoenix. It meant so much to me as Ronan and I watched the rain from the inside of our hospital room. Thank you all for the beautiful pics and for thinking of us. And Bethany, I too have such a peaceful feeling; glad you are feeling the same. I love you.

G’night all of you. Sweetest dreams and we hope you are having a lovely weekend.

xoxo

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