Of course your Nana didn’t leave your name off of the treehouse.

Ronan. I have to live the rest of my life without the touch of your little hand, without hearing your sweet giggles, without getting lost in your piercing blue eyes. Somedays this makes me extremely sad. Somedays this makes me super bitter. Today, I found myself not crying, but looking at all the people around me and going why do you get to live and he doesn’t? He would have been such a good person. He would have made this world so much more beautiful. Who lives and who dies and who decides??? And why??? I’ll never have the answers to these questions. These thoughts fill my head at the most random moments. Today it was while walking through the local Walmart to pick up some water. I was thinking these thoughts then I get the other little voice in my head that says, “You are a bad person for thinking that your son deserved to live, yet this jack off who is yelling at his 8 kids, should die.” I quickly tell that little voice to fuck off, because I am just being honest and any mother would feel this way. If I can’t be honest in my head, than I can’t be honest anywhere. Thoughts like this leave me feeling restless and I often feel trapped in my own head or like a hamster that is running around on that freaking spinning wheel, going nowhere and never knowing when to stop. Love that never-ending cycle of grief/shame/resentment/guilt/sadness that I cannot seem to escape.

Today, I tried to get lost in the world of your brothers. I think I faked it really well. I played baseball with them for a few hours today. I pretended not to be looking for you everywhere, waiting to see you up next to bat. I took them to lunch. We went to see the new, “Ice Age,” move which you know destroyed me. That was one of your favorites. You loved that Scrat character so much. After the movie, we came home and played more baseball. I headed out to meet our Bri Bri for a quick run around the lake. It felt good to get out there and run. I haven’t been running much in AZ due to not being motivated to do so in the brutal heat. I’d rather hike instead. I’ve been saving my running for this Washington trip. It’s one of my favorite places to run from everything in my head that I cannot seem to escape. I didn’t escape anything today, but I got to spend a little time with my sissy which is always a treat. I miss her. I know you do, too.

I heard another story today about a maybe cancer faker in this very real and sad cancer world that I know all too well. I cannot even get upset about it tonight because anybody that would do such a thing… well, they are trapped in a hell of their own that I cannot even fathom. My normal self would be swearing up and down in my head, my blood would be boiling… but I don’t even have words tonight for somebody that would do such a thing. I am in a peaceful place and for once, I refuse to give into to the evil of the world around me and let it ruin the quietness that I am feeling tonight. Tonight, I don’t feel spicy or angry or like swearing like a truck driver. I am calm, tired, and listening to your brothers sleeping soundly is giving me comfort that I need to listen to for once.

I don’t have a lot to say tonight. I left my Ambien back in Phoenix. I don’t miss it. I slept well last night as I always seems to do here. The fresh air is good for me. I had a moment of panic yesterday when I went down to your treehouse with your brothers. Someone (I think your Nana) had painted little individual signs with all of your names on them to attach to the front of the treehouse wall. The door to the tree house was open as I was examining the names that hung above. My stomach dropped and I yelled to your brothers, “Why isn’t Ronan’s name up there?!” I almost started to cry. Liam yelled down to me, “It is mom. It’s on the front of the door, see.” There it was. In purple of course. I felt bad. Of course your Nana would not leave your name off of the tree house. Of course your Nana would not, not include you, just because you are not here. This is the same Nana, that had presents wrapped and underneath the Christmas Tree for you this year. She would NEVER leave you out just because you are not here. I cannot believe even for a second, that I thought she would. She includes you in everything that she does, every single day. She would never sweep you under the rug and pretend that you didn’t exist. She would never take you out of the equation. All she has to do is look at me and I know she is thinking about you. It’s painful to see but I am so thankful to know.

I have a lot more to tell you tonight all of a sudden. But I am too tired to continue on. It’s late little bug. I’m going to cuddle up to your brothers now. They both refuse to sleep in their room here and are tucked away in bed, with me. I don’t mind; I only wish you were crammed in between us. I love you. I miss you. I hope you are safe. Sweet dreams, Ro baby.

xoxo

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Scrambled Eggies and a Fucking AIMS Test

 

 

Ronan. The weekend is over. I guess it was busy. It’s late now but I actually just got home. This weekend went a little something like this… A baseball game. Dropped your brothers off for a sleep over at a friends. Your daddy looks at me as to say now what? Because another date night of me staring across a table at him, sobbing so hard that I cannot eat and I will blow my fucking brains out. Luckily, we had made some kind of sort of let’s do something with Danielle and Dave, plans. We went to dinner. We caught up. We went bowling. I may have sucked really bad the first game. I may have gotten the high score the second game and redeemed myself. I may have smiled. I still felt sad, but it’s good to be with friends like Danielle and Dave. They are easy. They both love you. Sunday, your daddy went into the office. I picked up your brothers. We all then went to this place called Mike’s Big Breakfast for lunch. Oh, how you would have loved it. This was all I could think of the entire time we were there. I think Liam ate 10 pieces of bacon. And pancakes. We sat at the bar. Everyone smiled at us. It felt weird to me. I wanted to scream out, “Hey! No smiling allowed! We are not the happy family that we may look like! Don’t you know our Ronan is missing? Don’t you know our Ronan is gone? I just want him back! Why isn’t anyone bringing him back?!! But this food is really fucking good.” And I don’t even really like food anymore, so that’s saying a lot. Unless it comes in the form of Airhead Extremes Candy. Or Coke. I will love those two things, forever. Your brothers went over to a friends’ house later Sunday for another play date. It’s good for them and helps out over here so much. I can use the break and so can your daddy from the constant parenting that we are always doing. Parenting that is so exhausting when you are constantly dealing with this pain and grief. Your daddy asked what I wanted to do. It was so sunshiny and nice out. Shiny mother fucking people everywhere. Put me in a dark room please and let’s watch “The Girl with the Dragon Tattoo.” That’s what we did. I had already seen it. Your daddy had not and I knew it was right up his alley. It was while watching this movie, that I found out about our little friend, Jaiel. The 16-year-old girl that I had told Rita about around a month or two ago, who was fighting Neuroblastoma. The girl that was the reason that we decided to go to the anti bullying press conference that Nicole Stanton had because Jai had posted something about how it was nice to know that people who you thought were your friends, really were not because they were all just waiting for you to die. Her post ripped my heart out. She is 16 and she is dealing with real life in the most horrific way. She does not have normal you are so fucking lucky to only have a boyfriend breaking up with you problem, to cry about. This girl was fighting for her life. Something that  so many people, take for granted.

Somebody posted something on Facebook saying she had passed away yesterday. Impossible, I thought to myself. I had just been messaging back and forth with her a week or so ago. She had just had another surgery, so she could continue to fight. I thought she was doing o.k. I should have known better. Because I know first hand, how evil and unpredictable this disease can be. I sat in my bed, in shock. Your brothers came home soon after that. I had to keep it together for the sake of them. Your daddy asked if I wanted to play outside with them. “No,” I quietly said. I would not. I played catch out in the parking lot today of Matt’s Big Breakfast. That’s enough for today. That’s all I can do, for today. Unless Ronan is there too. Then I would like to play. You were not. So I left. I went for a very dangerous, night hike instead. But before my little hike, this is what I did. I parked. I sat in the car and sobbed. I sobbed for Jai. I remember thinking to myself poor Jai. And her parents. I cannot imagine what they are feeling. I cannot imagine what it feels like, to be them. Then I had visions of your little face, your little voice, your little lips and how lucky I was to be able to have all of those things. But then I remembered that you are dead. I had forgotten. My head started spinning and I thought I am never going to see him, again. At least not in this life. How is that even possible? How can this even be real? I bolted out of my car. Luckily, I had decided to wear my FUCK YOU YOU FUCKING FUCK tee-shirt while hiking up the mountain today. I do not think my fellow hikers appreciated it very much. The amount of dirty looks I got was actually quite humorous. Quite a few people gave me dirty looks. I gave them dirty looks back while the black tears poured down my cheeks. I’m pretty sure I looked mad. Like in a Mom’s Gone Mad sort of way. I’m pretty sure I didn’t really fucking care today. I am glad nobody said anything out loud to me because I might have punched them. Maybe not punched, because I don’t do physical violence, but I totally would have assaulted them with my middle finger instead.

I came home and your daddy just looked at me. I had snuck out of the house without him seeing what tee-shirt I was wearing. Score 1 for secret operation ninja Maya plan. Score 0 for OH MY GOD NO YOU DID NOT WEAR THAT Woody. I did. And I’m not sorry. Cancer can be sorry, for killing my child. And this is how I feel about cancer, so I’m wearing it. Plus Jai died. And all of these babes are dying, so yeah, fuckyouyoufuckingfuck, was appropriate. I don’t care who says otherwise.

This is what Quinn said to me about 10 times today. “Mom. We have an AIMS test tomorrow. Can you cook us a really good breakfast??”

“Ummm…. of course I can, Quinny.I will cook it and you will do awesome on your test.”

He asked me this, about 5 more times tonight.

I thought to myself, don’t I always cook a good breakfast before school? Then I remembered that no. No I do not. I used to. I used to ALWAYS cook a good breakfast for all of you. Your eggies. Your scrambled eggies. Bacon. Sasauge. The works. I would feed you all, scoop you up in your P.J.’s and throw you in the car. We would drop your brothers off at school and come back home to play for the rest of the day. Now eggies only really happen, on the weekends. During the week, it’s every man for himself here is some cereal and shove some yogurt down your throat if we have time. Eggies pretty much kill me, without having you to feed them too. Tomorrow, I will cook eggies on about the 4 hours of sleep I am going to get tonight. Tomorrow, I will get up extra early to cook the eggies without you. I already hate tomorrow.

This is the other conversation that has gone on for months now. May. May consists of telling your daddy, I think we need to go away.  I do not think it would be a good idea for us to be here, in May. Your daddy wants to know, where I want to go. China. Thailand. Vietnam. Australia. I think it may be a little late for those places. I don’t think I can plan a trip like that. I cannot make a decision to save my life. Why can’t I plan a freaking trip? What is wrong with me? This is easy! Turns out, it’s not so easy. I think I am having major mental block out May issues. If you block out May, it won’t come. It’s coming. I cannot be in Arizona for it. East Coast. I think it’s going to be an East Coast trip. I told your daddy this tonight. Maine? Boston? All of it? “Whatever you want,” was his reply. Just please plan it. Fuck. A plan? How can I plan this let’s get the fuck out of here, because Ronan’s 1 year of everything is coming up??? Because if I do not, I know what will happen. And it is not good.

I tucked your sweet brothers in tonight and sent Rita a text. “Hey. Do you have HBO? I do not. And “Girls,” is premiring on HBO.” It’s our fairy RoMo’s good friends show. I don’t watch T.V. but I did tonight due to Rita’s response  that she did indeed have HBO and she lives close by. We sat and watched, laughed, and LOVED it. I stayed over there late. We talked about May. She has been trying to help me make a decision for weeks now. I’ve been ignoring her. I thought she was going to fly off the couch with happiness when I said, “I’m thinking East Coast…” She seemed to think that was great idea. Maybe tomorrow will be the day that I can make your daddy proud, by figuring this shit out. Maybe tomorrow is already here and it looks bleak. We shall see.

Eggies to cook in the morning, Ro. I love you. I miss you. I hope you are safe. Sweet dreams, baby doll.

xoxo

A painfully gracefully clumsily beautiful existence

Ronan. I had a rough sleep last night. I think there was a lot of tossing/turning/punching pillows involved. It was 1:45 a.m. when I pretty much said FUCKTHISSHIT and popped an Ambien. Hate it. But sometimes the silence of nothingness is needed. More so than not lately. Nights have been more brutal than they normally are lately. Nights are when the cries from you to me and me to you, scream the loudest. Nights are never quiet.

I got up today, running on the little sleep I had gotten, but I had a lot to do. Too much to do so I went into tunnel vision to get everything done. Foundation things. I had a meeting at Phoenix Children’s Hospital that I needed to prep for too. Prepping came with basically giving myself a pep talk and telling myself how I would be brave today and talk about you, without sobbing like a baby. Prepping for today came with a lot of,”You can do this. For him. He would love this.” Rita met me down at PCH. I was waiting in the lobby for her, busying myself with doing things like cleaning out my purse. Busying myself with a lot of things to distract myself from crying. I don’t have a problem with being at PCH. I’m down there a lot still. I had a problem with the reason I was down there today. I didn’t want to be there, without you, asking for permission to do something for your birthday, and you are not even here to celebrate it. I wanted to be down there, with you holding my hand, doing something for your birthday and celebrating the fact that you were here and we together, wanting to do something nice at PCH because we were so lucky to still have you. I fought back my tears today and bravely did this without you. I sat in a conference room with Rita and clumsily/gracefully talked about your upcoming birthday and what it is, we would like to do, to honor you. I am used to hearing the word no a lot now. I am used to getting met by skeptical glances and it usually involves a… “Well if you want to do this, you have to check off this box and this box and this box, to have it done.” I am used to having to work/fight for everything in life. Today, none of that existed. I was met with a big fat, “We love this idea! We love everything about it. We will do whatever it is, you like. How can we help/what can we do/how would you like to see this idea, happen all the time in Ronan’s honor!” I was quite simply shocked. I think Rita almost fell over in her chair. This was not what either of us, was expecting. We left there stunned but smiling. We went for tacos afterwords and talked where we talked about your birthday and how we are going to execute the ideas that we have. We are going to make it a very special day for a lot of kids. I know it would make you smile and so happy.

After I left Rita, I drove to your brothers baseball game. I was feeling alright. I arrived to the game and just as I was sitting there, thinking about an email I was supposed to send today, in regards to an event I am trying to pull off for you in September, a little text message popped up on my phone. A little text message from the person I was going to email, but did not. I read it, sat with it, and the tears started pouring. I don’t want to go into details about what the text message said as it’s not important. I’ll sum it up with a little Taylor Swift lyric instead…one of my favorites. “Don’t you worry your pretty little mind, people throw rocks at things that shine.” I was crying for about 10 different reasons during that moment. 1) Because baseball games are hard in general. 2) Because I miss you. 3) Because this little text messaging person, blows my mind 4) Because I am so thankful that truly good people in the world, like her, exist 5) Because the stars are aligning, right before my very eyes 6) Because just when I start to doubt myself, this person always seems to know it and reminds me that she believes in me and you 7) Because I am so about letting things just come about/not push them and this was a huge reminder/sign to me to continue to do things, this way. There are a few more reasons for my tears, but I don’t want to go into them. Mostly it was just a huge fat thank you, Ronan. For reminding me that you are still here, working away during the times when I feel the most defeated. Or tired. I told your Sparkly eyes that I was just freaking tired of everything. I was quickly met with a, “So what? That’s bullshit. You’re tired? That means nothing.” He is one of the few people who I allow to slap me in the face and I don’t become defensive or feel offended. I am able to step back, assess the situation and say, “You are right. I am acting like an asshole and I need to knock this shit off.” I am learning to let myself take little breaks here and there, but I will never give up on you. I will work as hard as I can, to make some things in this mad world, right.

You know what else you are doing for me? Or should I say, this grief is doing for me? It’s making my heart bigger than ever. I did not know that was even possible, but it is. There are things now that I just cannot look away from. I want to save/help everybody. It’s helping others, that is saving me. Dr. JoRo told me this after a few times of seeing her. She talked about how my heart, would eventually start to turn outward again. I remember being in a fog, listening to her words, but not really understanding what she was saying. My heart would turn outward and grow bigger? Not possible. It is black, broken and shattered into a million pieces. I am starting to understand what she has told me, from the beginning. I’ve always believed her, but I think until now, I wasn’t truly ready to hear what it is, she was telling me. She is so freaking humble. I talked to her today. She is still on her trip and just found out she is getting some huge/really big deal award for being what I think should be called, “The Most Amazing Woman Alive on the Planet Award.” I listened to her talk about it like it was not really a big deal, even though it is. She would never come out and say that because that is just how she rolls. I tried to tell her it was a big deal, that she deserves this for everything she is doing. I was met with a, “Maya. That’s the thing. I’m not really doing anything except just being with you. Just holding your hand as you do this. All I am doing is sitting with you while you feel this, while you go through this, while you find your way.” I wiped the tears off of my cheeks. I told her that what she was doing, was walking through this with me in a way that nobody had done before. By truly listening. By speaking for me when I cannot, even if it’s not saying anything at all. By NEVER judging. By NEVER pushing. By NEVER expecting. By NEVER telling me I am doing this wrong. By NEVER lessening my pain. By never trying to numb my pain by shoving 10 different pills down my throat. By never saying, “Oh, I lost a child too, so I TOTALLY get it. By never telling me it’s time to get over this/move on. By never comparing her pain to mine. By NEVER using the words, “Well at least you have these things/people to get you through this. By never using the words, “You should be grateful for the things you do have.” By never telling me this gets easier. By never giving me false hope. By being brutally honest about how fucking awful this all is and she cannot fix it. She cannot fix it, but she will forever be here to watch me as I do, as I am the only one that can. And finally, by believing and me and trusting me, even when I do not believe or trust in myself. She always does. I know she always will too. She is one of my biggest reasons for continuing to fight as hard as I do. When I grow up, I want to be just like her;) She is beyond inspiring, Ronan. She reminds me a lot of you. She reminds me a lot of me, too. So much some days that I can see my pain, in her eyes. But the thing with her is it never hurts to look at her eyes, full of all of my pain. When I look into her eyes, I see a quiet strength that makes me feel the most at ease. It’s like I can breathe for a bit.

Guess what I did tonight? I did not get to hike today due to my busy day of getting shit done. I was quietly panicking in my head about it. I took Liam out tonight to grab a bag of ice for your daddy. It was dark. It was late. I drove the two of us, to our mountain. “Liam. I didn’t get to hike today, buddy. You want to go with me really fast?” I was met with an, “Ok mom. But I don’t have shoes.” I quickly told him no problem, that we could just go barefoot. He was so excited. “Good thing I have tough feet, mom.” Tears sprung to my eyes. “Yeah buddy. Good thing. I do too, so we will be alright.” We hiked, barefoot, in the dark together. He talked the entire time. We didn’t go to the top but that was not the point. We went as far as we could with bare feet/no flashlight like we didn’t have a care in the world. We bonded. We laughed. We missed you. It was a very sweet hike with a very sweet boy. I bawled like a baby over it and the fact that we were simply doing that crazy thing, because you are dead. If you were here, I would have never been on a mountain, holding Liam’s hand with bare feet and a broken heart. But I was. And I am. And I will continue to be for the rest of my life. This is just the way it is now. This is just the way it will always be. This grief/pain will never leave. I can’t have you anymore so this is what I am left with. A beautifully, painful life. I am noticing that the amount of beauty that I see in the world is endless but so is the amount of pain. They both seem to go hand in hand, everywhere I look. They are never without each other. It is as if they are best friends/worst enemies. You cannot have one, without the other. I wonder if other people notice this or if it is just a bereaved parent thing. I think my friend Rita sees it all the time, as well. Maybe this is one of the reasons I like her so much. That and she is funny as a mo fo. I cannot contain laugher/her snarky ways when I am around her, kill me. Like in an I almost pee my pants kind of way. Laughter truly is the best medicine. I need a lot of it. She is good at providing it. Plus, sometimes she makes me feel like I am being funny and making her laugh, too. So sometimes I feel like it’s just not a one way street;) YAY ME! I can still be kind of funny, when it comes out naturally. I only do this with the people I feel most comfortable around. It’s a weird introvert characteristic of mine.

Alright babydoll. Turing in for the night. Ambien I hate you but I have to sleep is here. G’nite baby doll. G’nite sweet friends. I miss you, Ro. I hope you are safe. I love you.

xoxo

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“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 run and some Sookie Sookie time

Today was a lovely day indeed. My mom woke up super early (5 a.m. PST) to get down to Sloan to donate her platelets to Ronan. It took a couple of hours and it was so nice of her to do. She showed up at the hospital around 10:30… close to the same time as Trish who came armed with Starbucks for me. We sat and played with Ronan for some time and then I left for my daily “shower,” among other things. Trish and I returned to the RMH and put on our running clothes to do my Central Park run. It was a gloomy, cold, and absolutely perfect running weather kind of day. At least for me. I love nothing more than running on a cold day. We were about 4 miles in and I was in the middle of texting Niki to let her know we were close by her place. She bundled up the kids, put them in the stroller and met us on 81st. We walked down into Central Park and let the kids run around and play in some big piles of dirt. They were in heaven. I was in kiddie heaven just being with them and my 2 good friends. Little Wesley even took my hand and held it as we were walking down the sidewalk. It meant so much to me walking and holding hands with my little friend. I was just sad that Ronan wasn’t there to see this. He would have loved everything about today. We still have some time to play with our friends if he gets discharged this weekend. Praying to those ANC gods. I am going to be shocked if he does not have an ANC by tomorrow. He looks so good and is acting like the Ronan I knew before he had cancer. So loving, funny, sassy, and a little wild.

After Trish and I did our little pit stop to see our friends, we headed off to continue our run. I was on fire today…. it was the best run I’ve had in a couple of weeks. I felt as if I could have run forever. We finished at 8 miles and it felt amazing. I love having my running buddy here with me; we used to run together all the time. Just add it to my list of the things I miss the most. Check.

I had just enough time before I had to return to the hospital to take Trish to my Sookie Sookie Shady Massage Parlor. We parted ways at the curtains and she chirped out, “See you later!” even though we were right next to each other separated by a curtain. She about died when I showed her what the place looked like from the outside but I told her to trust me as she was about to die and go to heaven. For the next hour, that is precisely what we did. What a perfect day with my beautiful friend. So good for my soul. We ran back to RMH and I showered quickly and packed up my overnight bag. I left Trish there and went to say goodbye to my mama and hello to my Ronan. It was hard to have my mom leave today. As we were hugging I looked over at Ronan who was watching us and he was all teary eyed. He has already told me a dozen times tonight he misses his Nana. Poor little monkey.

He has been in a great mood all of today and tonight. We played our usual Star Wars/Walk the halls and shoot the nurses games. We actually had to switch rooms tonight due to us getting a girl roommate who was a little older. The only room they had available for her was ours, or another one with a 14-year-old boy in it. They like to keep boys together if they can and I understand that it would be awkward for a boy and girl who are older and around the same age to share a room. We happily switched and moved rooms. Not a big deal but I cannot even go into details about the things that have gone on in our room tonight. It’s too sad, too intrusive, and once again, totally unfair.

Ronan has been happy though and that is all that matters. We snuggled up and watched one of our favorite movies together, “Ponyo.” I don’t think I could ever get tired of that movie and Ronan absolutely loves it. It is very sweet with a good message. So today was not only the perfect day, but the perfect night as well. I had to make it this way tonight… I had to work extra hard not to break down about missing my twins’ baseball game. I held it together, I pushed though my feelings of sadness and replaced them with focusing on the here and now and telling myself that there will be a hundred other baseball games of theirs that I can watch. I just sometimes get overwhelmed with thinking I have a lot of making up to them to do. I just hope they understand and I think they will, but it still worries me. I don’t ever want them to think I love them any less than Ronan. I hope they understand the sacrifices I have to make because I don’t have a choice and I have to be the one here with Ronan so we can get him better. They are smart, compassionate little boys. I am pretty sure they will be o.k. They know how much I love them.

This is all the writing I can do tonight. Beyond tired from a restless night last night and a long day today. Huge thanks to my mom for coming out here to help me. She was a huge help and I think she had a good time. I hope so… she loves her time with Ronan so much. I love you, mom. I hope you all have a wonderful weekend and enjoy your families to the fullest. Everyday with a healthy child is such a gift. Don’t ever forget that. The little problems in life that seem so big, really are not. It took my child getting cancer for me to realize that. I will never forget this again. Lesson learned, I just wish it was game over and Ro was back in PHX, healthy and with his brothers, where he belongs. Soon my little man, I promise.
G’nite, sweet dreams, love you all.

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

You belong among the wildflowers

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

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

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

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

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

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

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

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

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

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

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

xoxo

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

There’s no place like home

The morning started off early and Stacy offered to bring me coffee; which I really needed. She then ever so sweetly offered to stay with Ro so I could run home and shower. So thankful for her because just being able to go home and shower makes such a difference in my day. Ronan was so great with her and he is now getting used to my friends who are coming in and out to help me. His ANC counts have come up to 56…. slowly they are jumping up. Hoping for better counts tomorrow. He has been a little grumpy today but I finally got him out of his room and into the playroom for about a half an hour. That seemed to help his spirits even though he was insisting that he wanted to go back to his room. I told him that we were getting out of that stinky room for awhile and going to do something fun. We ended up painting and picking out some Mickey Mouse movies to bring back to his room. We have been playing on one of my friends’ iPad as it has a ton of games on it that we’ve never played before. She dropped it off at my house this a.m. and it has been keeping us busy for a couple of hours now. Thanks, darling:) Ronan and I also disinfected his entire side of his room tonight. My skin was crawling thinking about the germs everywhere… we tided up his entire room and wiped down everything from his Star Wars guys to the freaking floor. GROSS. Do not get me started on the cleanliness of hospitals. It freaks me out. I have taken it upon myself to wipe everything down, everyday. Makes me feel better in a way. Weird and silly but it’s a feeling of control that I need right now.

Liam and Quinn’s 1st grade teacher called me yesterday and offered to sit with Ronan tonight so I could run home and see Woody, Liam and Quinn. BEST TEACHER EVER:) Thank you, Cindy<3 She is on her way now and I cannot wait to get home to my big boys for a couple of hours. I may stay the night at home tonight and let Woody stay at the hospital. It would be so nice to spend a little time with Liam and Quinny Q.

Home sweet home now. Got to see Woody and catch up on some things. It was beyond nice to spend an hour with him before he went to PCH to spend the night with Ronan. It feels so good to be home and so good to be with Liam and Quinn. I miss them so much. We spent the night playing “Little Big Planet,” and they both helped me with chores around the house. They are the sweetest boys’ in the world. I can’t believe how tall they have gotten! I swear they have grown a few inches since I’ve seen them last! Quinn has sprouted up and is a couple inches taller than Liam now. Woody said tonight he bets Quinn is going to be 6’8 or 6’9. My 7 year olds are going to be taller than me soon. So scary! The boys’ had 2 basketball games today and sign ups for baseball. We are trying to keep them as active as possible and everything as normal as possible for them still. From what Woody said, they both did amazing at their games today. They were both very excited to tell me about them. I loved hearing the excitement in their voices; my little superstars. Team Thompson rules;) I am so proud of them.

Time to try to get some shut eye now, I’ve got to be back to PCH early so Woody can go into the office for a few hours and get caught up on some work. Hope you all are having a beautiful weekend. Sweet dreams<3

xoxo