Late night rants and I can’t put Poppy down.

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Ronan. Fucking, fuck, fuck, fuck. I’m venting on here tonight and I don’t even care. I have been spending all of my nights, writing about this nightmare for this book and going back to re read my blog, which I’ve NEVER done, to reference some things.

This is beyond torture. I knew this was going to be hard, but SHITBALLS! This is beyond sick. I would give anything to be tucking you into bed instead.

So, the little time at night that I sleep, I have been having horrific nightmares. Last night, Poppy had cancer and went from being my healthy, chubby baby girl, to wilting away in my arms as I watched her die. Are you FUCKING KIDDING ME?! Can’t I catch a break around here?! I mean, I wake up to a nightmare everyday, which is not having you here, and I can’t even go to sleep without being tortured as well. Where are my puppies, unicorns and rainbows when I need them? Oh, I remember. I stopped subscribing to those a long time ago. Lucky me. Whatever. It is impossible for me to have gone through something like this and just stick my head in the sand and pretend like nothing happened. I’m so sick of hearing from the idiots of the world that now that I have Poppy, I should just move on and leave all of this behind. Well, nobody has ever told this to my face, but as always, I hear the whispers and they are whispers of BULLSHIT from sad souls who are obviously so self absorbed that they think that going through something like this, then having a baby makes everything disappear. That is so very untrue and so very ignorant.

Leave all of this behind?! Are you kidding me? Never. I will never sell my soul to the devil that way. I will never sell out and “move on” from Ronan. Yesterday, I woke up to 7 kids dying of cancer. 7!!!!  And that is only in the United States! Where are the riots on the street for that?!? Unbelievable.

I am not going anywhere, ever. I will stay here and continue to fight for you, Ronan and for all of these other kids until the day I die. I am not going “back” to my life of happy. I am a tortured soul and I can live with that. If anybody that is close to me has a problem with that, then please feel free to exit. The whispers are getting beyond fucking annoying.

Ronan. I started that rant a while ago. I think I was in the middle of being consumed by my writing at night and obviously I needed a break. My break came at the perfect timing as my childhood best friend, invited us down to stay with her over the weekend in Hood River, Oregon. It’s taken me a while to be able to say yes to something like this. I know Amy has been wanting to see me for a while now, but it’s honestly taken me this long to get back to that place where I feel I can see people again. Coming to your Nana and Papa’s is wonderful in so many ways, but I do tend to turn into a little of a hermit here. Meaning I don’t go out and do a lot of things. I prefer to stay home and only venture out for little adventures, here and there. Thankfully, they have enough acres and space to make us feel like we are in a different world, off doing a million adventures, without having to leave or drive anywhere to do so. When Amy asked to see us, I hesitated a little bit but ended up telling her we would come to her. We needed a change of scenery and I very much needed a break from my writing. Plus, I really have missed my dear friend.

We headed out on Friday for a weekend full of all thing amazing and beautiful that the Pacific Northwest has to offer this time of year. Mountain biking up some wicked trails, running through sprinklers, blueberry picking, ice cream, watching the boys play and splash on the beach, an amazing hike, all in a 48 hour period. Your brothers had such fun with her boys that they didn’t want to leave. I handled the weekend pretty well and tried not to let the wind get knocked out of me every time Amy’s very spicy 3-year-old, did something naughty. Oh, how he reminded me of you. He even has that same color of copper hair. Seeing your brothers with him and watching them giggle whenever he did something he was not supposed to do, broke my heart over and over again. But I survived the weekend much like the way I survive this life, by being surrounded by really amazing people and letting myself get lost in the smiles from your brothers and cuddles from your sister.

At one point Amy said to me, “You know you can put Poppy down, right?” Apparently I had been walking around pretty much the entire weekend, without setting her down except for when I had to change her diaper, but I hadn’t noticed this. I just looked at Amy and said, “Put her down? I never put her down. I can’t.” Errrrrr… I might be turning into an obsessive psycho maniac over your sister, but we all know there is a good reason behind this. Besides the fact that she is just too adorable to ever stop staring at.

Our weekend was wonderful and I’m back to the grind of trying to juggle 50 things at once. Yesterday, I felt so beat down that I almost cracked. It’s times like these that your Nana can sense it all and looks at me and says, “Give me Poppy and go for a run to blow off some steam.” That’s precisely what I did. It’s going to be hard to leave this place to go back to the realities of Arizona. It is still really hard for me to be there, but I will stick it out until something comes along to take us elsewhere. A change is in the air I think but I’m just not sure what that looks like as of now.

I have some other not so fun things to vent about, but I’m not going to do that now as I have to get back to the hours I need to put in with your book. All will come in due time. I also have some really amazing things to share as well as the sad/beautiful seem to live hand in hand.

I miss you so much, Ronan. I miss you. I love you. I hope you are safe. Sweet dreams, baby doll.

xoxo

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Cancer is a whore. My friend, Robyn, told me so.

 

Ronan. I am tired. Living this life without you is exhausting. I hardly remember the days when I used to think you wore me out due to your never-ending energy. I used to think taking care of you was a lot of work. Well, let me assure you, taking care of a dead child is 100 times more exhausting. It is 100 times more exhausting than the temper tantrums, throwing up, crying, teaching, arguing, potty training, bathing, feeding, reading, singing, playing, snotty noses, laughing, loving, and all the other beautiful things that come with raising a child. Taking care of a dead child is 24 hours of pure and non-stop torture that on days like today, leaves me feeling more exhausted than running a fucking marathon.

We are still in Washington. I do well here. It’s no secret. My heart is not in AZ. I won’t live there forever. There will come a day when I will leave. Your daddy knows this. He is on board with this. He will go wherever we decide to go, as a family. I’ve already thrown out a few places as options. It’s a decision we have both made. My heart does not belong in that state. It never has. I have only a couple of things keeping me there, as of now. But those couple of things mean too much to me to leave. As long as they are there, I will stay there. I’m not saying what or who they are, but I know you know. Because you’ve always known. Right now, we are there because it is where we need to be. Because right now it is what is best for Liam and Quinn. I can put myself aside for the sake of the two of them for the time being. I can sacrifice myself for those boys’ no questions asked. But Phoenix leaves me feeling restless and chaotic. The only peace I get is when I am hiking up a mountain in 110 degree weather. That tells me right there, that there is a problem. I know what my main problem is… that being not having you anymore. But Phoenix only seems to add fuel to the fire. I can make due for now. I can be thankful that we have your Nana’s house to come to so that I can have a little peace and quiet. I can be thankful for things like rainy summer days, scratches from sticker bushes, muddy feet from exploring the never-ending rivers/streams/ponds that surround us… I can be thankful that your brothers have this place to come to, to experience childhood the way it should be. Simple, calm, and beautiful. You don’t get much more beautiful than this state. I have always thought so. It makes the 8 months of rain, totally worth it. But I am also a big fan of the rain so I may be biased. I am an even bigger fan now because I feel like my body and soul are in a constant state of rain due to all of my tears. It’s nice to not wake up to the blinding freaking sun every single day. The mornings here are damp and foggy. The air is clean. The sun comes out just in time to kiss my lips for a few hours and then it goes back to sleep. My heaven.

I’ve been doing a lot of playing with your brothers. So much playing that we are all 3 falling into bed and we hardly have the energy to say goodnight to one another and you, before it’s lights out. That never happens in AZ. It’s been a constant stream of baseball, board games, swinging, basketball, and Papa time. That Papa time is my favorite time of all. Your papa and I took Liam and Quinn to Mount St. Helen’s yesterday. The world that I watch Liam and Quinn slip into around him is magical. It’s one of my favorite places to be. The laugher and adventures are endless. He is the youngest 72-year-old that I have ever known. It’s like I’m watching 3 kids play whenever I am with him. He was one of your best friends and vise versa. He misses you so much. Yesterday, when we stopped to explore a little bit, we were throwing some rocks into the water. There were a ton of sticks and wood pieces floating around. The kind that you used to make your papa load the back of his truck up with. “More papa, more!” you used to yell to him. We would always bring home 10-20 pieces of wood and sticks for you. Your papa found a really good one yesterday and said, “I’d better get this one, for Ronie.” “Ronie, Ronie, Macaroni!” he would often sing to you. I just looked at him and said thank you. What I really meant was thank you for being the best step-dad ever. For being the best papa ever. For being the best friend to my 3 boys. For never forgetting you, Ronie, and for never being afraid to talk about you, sometimes like you are still here. I know how hard this has been for him. He loves you so much. He would have traded places with you, in a heartbeat. I know he is constantly asking himself why you and not him. We all are baby boy; we all are.

I think about you all the time. I told your Sparkly that I swore I think about you, 24 hours a day. He said he knew. I know he knows this because he thinks of you everyday too. He misses you. I have been thinking about a lot of things lately, trying to give myself some peace of mind which won’t ever happen, but I need just a sliver of it, to get me through this. For me to say that I 100% know where you are, who you are with, and what you are doing is something I am not willing to eat up on a plate of bullshit. Hello! Am I the only crazy one out there, who will admit this?!! NOBODY REALLY KNOWS where you are, Ro baby. WTF! I can fully respect what people believe… but I am so tired of hearing, “Oh, hello… I am 100% sure of where Ronan is. He is safe and happy and he is where he should be. ” Fuck off people. That is not the right way to approach me. Why don’t you just be honest and say, “Oh, hello… I don’t 100% know where Ronan is, but this is what I believe.” Thank you. I can deal with the “I believe part.” I don’t have a problem with the “I believe part.” I won’t even tell you to fuck off. I will politely smile and tell you thank you, instead. I just want some freaking honesty. Is that too much to ask? I don’t think so. Unless you are officially hanging out in heaven, with Ronan, dancing on clouds and then you get to come back here and tell me about it, and put it on a DVD for me to watch…. I am not going to 100% be sure of anything. That’s honest. That’s real. It fucking sucks but I am not willing to sugar coat the life and death of my child just because it makes other people comfortable.

I know what I think I believe. I know what I think I don’t believe. I know that I am still learning and growing, but no matter how angry I get, I still have a shred of faith that I hold on to. It’s dear to me no matter how different or how out of the norm it is. I don’t like normal. I grew up with a dad who used to mediate on top of compost piles. Is that weird? Maybe to some. It wasn’t weird to me. It was his way of teaching me to love nature and the world around us, but mostly to connect to ourselves, our hearts and our spirituality. I know that my beliefs are ever-changing and ever-growing. What I believe today, may not be the same, tomorrow. I find that fascinating and it makes me proud that I have the strength to question everything out there when I could easily just believe in it all, instead. If I want to question if the sky is blue and the grass is green, that is my business. Nobody has the right to try to take that away from me. Not even God himself.

I found a picture of you today, Ronie. I don’t know if I’ve ever called you, Ronie, on here, P.S. Which is weird… because I used to call you that all of the time. Anyway, it was your preschool picture. The one where I can vividly recall the day so well which is unusual for me due to not having much of a memory anymore. You are so beautiful. I put you in one of your favorite orange shirts. Your hair almost matched it in the picture as the color of your hair was so unusual. A copper color almost. Blonder in the summer, but copper was the true color of that mop of hair of yours. I stared at that picture for a long time, before tears sprang to my eyes. I sent a couple of text messages to Dr. JoRo and to my new friend, Robyn. I haven’t really talked about Robyn yet because it just hasn’t been the right time. It’s only been within the last few weeks that we have started to get to know each other. Even though we have more in common than I would like. We both have dead babies thanks to that fuckwad, Neuroblastoma. We met at the NB conference in Austin, Texas. We went out afterwords as a group and I quietly sat back and watched this girl who continued to crack up the entire table with her witty comebacks, smart mouth and silent gun shooting laughter (because she says no sound comes out when she laughs so she shoots guns with her hands instead) Ummmm… who is this girl and can I please be her friend? I got to know her story a bit. I later learned that she not only has one dead child, but two as she had twins after her son, Ezra, and one of them, Price, died due to complications from a very early delivery. It took me a while to wrap my head around this. Wait, two dead babies? Her? Not possible. Not this drop dead gorgeous, funny, young thing sitting right in front of me. Not this gorgeous creature who looks like she is about 19, but has the pain in her eyes of someone who is 3 times her age. But she looks happy. And she can laugh and be carefree and funny! All of the voices in my head were saying, “Whoa. What’s wrong with you? This girl is alright. This girl can function in the normal world. And she has 2 dead babies! Why can’t you?” I left Texas being totally intrigued by this Little Miss Robyn thing. Our friendship has now developed over a series of Instagram/Twitter/Facebook/Texting love. I told her that it had to be the two of you, you and Ezra, who are the one’s making our friendship blossom. Because you know we can help each other, through this. I truly think this is the case. Now that I’ve gotten to know Robyn a little better, I can see that she still hurts so badly from losing her babies. That I know she thinks about them as much as I do you. That will never change. Things will never be alright or better. They are just different. And somedays, different can be o.k. and you can still smile and laugh, but the pain never fades away. As she puts it, it moves from your skin to your bones. It never goes away. I sent Robyn that text below tonight. She called cancer, a whore! I told you we were meant to be friends!

I think we are going to make a good team, me, you, your daddy, Robyn, Ezra and her husband, Kyle. I kind of think that Neuroblastoma, doesn’t really stand a chance. I am sorry that any of us have to know this life. I wish it wasn’t this way. Robyn says to tell you, “Hey,” though. Thank both you and Ezra, for helping us find each other. Please be sure to get into some trouble together. I’ll bet you are the best of friends.

I’m ending this novel here tonight, Ro baby. Much to say still but my eyes are red, blurry and sleepy. I miss you. I love you. I hope you are safe. I am always so sorry. Sweet dreams, baby boy. And of course it is now pouring down rain with a side of extra angry, thunder and lightening. Thank you. I hate being apart from you, just as much as you do.

xoxo

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Leaving on a Jet Plane… without you.

Ronan. I’m leaving on a jet plane. Don’t know when I’ll be back again… Kidding, kidding. I am leaving on a jet plane, and I do know when I’ll be back again. I’m going to your favorite place in the world, besides our house. I’m taking your brothers to Nana and Papa’s, for the trip we’ve been taking since they were 6 months old. I don’t know how I feel about it. I never know how I am going to do going to places anymore. All that matters is THEY are so excited. All that matters is how THEY feel. I can put myself on hold. I feel nothing except numb. Your daddy asked me this week if I was excited to go. I just looked at him with my, “Really?” look. He then said, “O.k. excited is not the right word.” I told him all that mattered is that Liam and Quinn were excited. I think I will be good once I get there. The Pacific Northwest is good for my soul. And I do miss my parents. It will be nice to spend some time with them. It’s good for all of our souls as it warms my heart to watch your brothers playing the way I used to play when I was little. Lots of simple things. Everything outdoors. Mud. Rain. Picking berries. Splashing in rivers. Forest nature walks. Clean air. It’s calm, peaceful and quiet. All things I miss so very much. I like sleeping in my old bedroom where I grew up and not much has changed. I will miss you my little snuggle bug so very much though. You loved to cuddle up with me and we would always sleep with the windows open and fall asleep listening to the frogs, grasshoppers while the cool, crisp air lulled us to sleep. It’s fucking bullshit that you are now sleeping forever. Please hold on while I go and throw up. There has been a lot of that going on again, lately.

What has gone on this week? A blur of things. I remember a lot of conversations. Your daddy told me something while I was sleeping last night about someone’s son dying of an overdose of pills. Some celeb’s son. I don’t remember who. But I do remember asking your daddy what kind of pills they took. I remember him being mad/annoyed at my question, but I fell back into a deep sleep. Without my Ambien. Good girl, me. It’s been a week of tears. Bits of insanity in a totally sane world as sometimes I feel as if I am so alone that I am truly insane while everyone else gets to live in a sane world with all of their kids, safe and sound. I miss that safe/sane/happy/no REAL problems exist because everything can be fixed when you don’t live in a dead kid or my kid has cancer, world.

The conversations float through my mind that happened the past couple of days. Words that are always filled with pain. I got told that I looked peaceful. I tried not to cry. I smiled instead. “Well, I don’t feel peaceful, except for in this moment because I am around you and you make me feel that way.” I soaked up the peacefulness like someone who has not seen sunshine in months. I got asked why I was wearing my glasses. “Because they hide my tears better. Because after crying all day long, my contacts can only take so much. I like the world better when I can hide my eyes.” I got told you were missed. I said I knew and it hurt my heart. It breaks my heart over and over again. Not just for me, but for the others around you who loved you so much. I’ve decided that there is no totally fixing my broken heart. The second pieces of it start to get put back together, it just falls to the floor again to be shattered over and over again. I have come to find out that I think it will always just be this way. I often wonder if one day, my heart will just stop beating from all of this pain.

 

This is all for tonight, little one. I have to get up super early for a 6:45 a.m. flight where your brothers and I will leave your Daddy behind. I hate this so much. I’m so sorry you cannot come with us. I love you. I miss you. I hope you are safe. Sweet dreams, baby doll. xoxo

One of my favorite Washington pictures of you, you spicy little monkey. You were so mad at me for putting your brothers 4 wheeler in 1st gear, to go slower rather than 2nd gear, to go faster. You knew the difference at only 2 years old. Your little foot could hardly reach the gas as this was meant to be driven by 5 year olds, not a Baby Danger 2 year old. You drove this thing, all summer long. I miss you so much.

Don’t stop believing

Ro baby. I looked for you all day. I was so sure you were going to wake me up this morning, as you have done every morning for the past almost 4 years. I woke up with a big, strange person in our bed. It was your daddy. I kept waiting for you to pop out in between us, but you never came. I got up, showered, and got dressed. I waited for you to come in and ask for me to put on some of my sparkly lip gloss that you liked to cover your face in. I waited for you to ask what it was that I was putting on my eyes as I applied my mascara. I waited for you to ask me to give your star wars guys a bath and for me to give you my hairdryer so you could blow dry them. You never came.

Quinn needed a haircut today. I got in the car and drove him to the barber. I looked for you in my rear view mirror, sitting back in your carseat. You weren’t there. Somehow, I got Quinny safely to get his haircut. I’m not sure I should have been driving today as everything is really foggy. My friend, Melissa came and sat with me. I told her how I needed to go to Nordstrom to return some of your Paul Frank underwear that came in the mail and to get Quinn and Liam some shoes for your service on Sunday. She came with me. She helped me get the sizes for your brothers shoes as my mind would not focus today. Everything is a mess. Everything except me. I’m o.k. Remember how a couple of days ago, I was hovering over you and I was crying?? You looked at me and said, “Mom, stop being sad.” You would be proud of me. I’m not sad yet. I’m trying so hard to make you proud. I am scared for the day when all of this hits me and I realize you are really gone. As of now, this all just feels like make believe. I still feel like this is just a trick or a nightmare that I cannot wake up from. Your daddy has been crying a lot. I wonder if something is wrong with me as I am not grieving yet. I’m numb to everything around me.

After I dropped Quinn off at home, I went to my hair appointment. I sat in the chair and was quiet for the most part. Katrina, who shaved your little head, gave me a big hug. She let me sit and just be with my own thoughts but we talked about you for a little bit. I got teary eyed, but did not cry. After my hair appointment, I went to see Dr. Maze. I brought him a coffee in your honor; but it was from A.J.’s and not Starbucks like we usually used to bring to him. We sat in his office for a long time. He has a picture of you up in the middle of his bulletin board. He misses you. I didn’t cry when I sat with him either. I never seem to, as you know he always has given me strength. He has become one of my best friends. Even though he is just a really old man 😉 We laugh about the day that I will push him around in his wheelchair. He told me his mum will look after you now. I had a dream about him saying this to me. That his mom would look after you now. I had asked him this in real life in a text message and he didn’t answer me back. But I dreamt he did and that is what he told me. I asked him today if I dreamed that or if he really had said it. He said that I had dreamed it, but that he knew she would be looking after you. That gave me peace because he loves her so much. I know she will take good care of you until I see you again.

After I left Dr. Maze’s office, I came home and helped your brothers get ready for their baseball game. They played so well and it was such a beautiful night. I kept looking for you on the playground, but I couldn’t find you. Then I remembered, you are gone. Since you’ve been gone something funny has happened everyday. That song by Journey, “Don’t stop believing,” has been playing in the background each day. Tonight, I heard it at the ballpark and it stopped me dead in my tracks. 3 days in a row I’ve heard that song. So weird. I know it’s you. It’s one of your little signs. I will never stop believing in you. At the ballpark, your brothers played an amazing game. They are happy, but they miss you a lot. Quinn was having trouble hitting the ball at one point and I asked for you to help him. I said, “Come on, Ro. Help your brother out.” You did. He hit it out of the park. Your dad and I stood together and talked about you and how you were always so proud and always held your chin up high. You achieved a lifetime of dignity in your 4 years of life that most people never achieve. Even when you died, your chin was held high. You are such an amazing little boy, Ronan. I am so honored I am your mama. I’ll never forget some of your last words to me. “Mama.” Me: “Yes, baby.” You: “I love you.” Me: ” I love you more, Ro.”

Tonight, we rode our bikes over to Uncle Jay’s house so Liam and Quinn could go swimming. I looked for you on your little bike next to me, but you weren’t there. Liam and Quinn swam in the pool and played basketball. I heard them laugh and looked up at the moon to tell you that I love you to the moon and back. I wish you could have been with us. Quinn took big fall on his bike on our way home. His little foot was so bloody and scraped up. We got him home and I thought of you and how brave you have always been. I tried to channel some of your braveness into Quinn. We got home and I did my first load of laundry since you’ve been gone. It was so weird. I still cannot go into your bedroom. I’m saving it for that special time when I know I am ready to fully succumb to this nightmare. I will use your room as the place where I can fully breakdown; when it is my time.

I’ll never forget how you looked hours before you passed. I could have sworn I saw your little eyes trying to form tears. I know it was because you were so sad to leave us. I hate thinking of you sad. I’m trying my hardest to block this memory out and think of you at your happiest times. The times that you were with us and such a carefree, healthy little boy. These memories will keep my heart warm for the rest of my life, baby.

I have to go now. Fernanda and Stacy are here and we are going to go over the way we are honoring you on Sunday. Even though we will honor you for the rest of our lives, baby. I love you, Ro. See you in my 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

I wish Neuroblastoma was an April Fools’ Joke

Last night, I left Sloan beyond beat due to our traumatic day. Woody came and met me and we swapped places so I could sleep at the RMH and spend a little time with Quinn. As soon as Quinn and I stepped outside, we were hit by all the rain. I wasn’t prepared at all… ballet flats on, no coat, no umbrella, etc….so the two of us held hands and we ran as fast as we could back “home.” We splashed in every puddle along the way, laughing the entire time. It was some much-needed simple fun. As soon as we arrived back to the RMH, we ran into my new friend who lives there, Doriet and her little girl, Ester. Doriet got a big kick out of how soaked we were and hurried us up to our room to get warm. I am just starting to get to know her and LOVE her. When I told her a few days ago that Ronan’s bone marrow was positive again she looked at me and goes, “So what. That doesn’t mean anything.” She is full of tough love which works for me. Seems that I respond well to her kick ass attitude and she is the pillar of strength. An amazing woman, mama, and wife to say the least.

Quinn and I warmed up and snuggled in bed together and slept peacefully all night as we listened to the rain outside. I didn’t wake up until my phone went off at 10 a.m. EST with a text from my Mr. Sparkly Eyes telling me he hoped today was a better day. I thought to myself… It HAS to be. I don’t think I could handle two yesterdays in a row. On our way to Sloan, we stopped at Delizia’s so Quinny could get a slice of pizza. He must have told me he loved me and thanked me a half a dozen times while we were there. Such a little love bug. I’m going to have a hard time when he leaves on Sunday. Once we arrived at the hospital, I found a sleepy Ronan and Daddy cuddled in bed together. I quietly woke Woody up to let him know he could leave, but he ended up staying for a few hours and working from the hospital. Quinn stayed in the playroom on 9 by himself and then met us on 2 so he could see Ronan at Radiation. It was the highlight of my day; watching my two boys laugh and play for the 20 minutes that we were waiting. Lots of laughs and giggles from them both. After RT, Woody and Quinn left and I stayed at Sloan. Ronan’s mood is so much better today. We have been playing a ton and he even let me hogtie him up while we played Cowboys and Indians. He is now quietly laying down and watching a movie. I think I wore him out! We are waiting for Woody and Quinn to get here and I asked the nurse if she could block off the playroom for us so Quinn could play with Ronan for a bit and we could have dinner as a family. She agreed to do so. Very nice of her as it’s the only way Quinn can be on the floor with Ronan for an hour or so. Better than nothing.

This weekend will be spent here, inpatient. Dr. Kushner came to see us today and said Ronan’s counts probably won’t come up until Monday or Tuesday. Yowzer. I am trying to make best of this and luckily, this hospital is really good about keeping the kids entertained. Lots of arts and crafts, funny clowns, the Candy Cart, etc….. I am just thankful that Ronan looks a million times better and he finally has his giggle back. It’s really hard to go a day without it. He is happy for the most part, although he asks me all the time when he can go back to Phoenix and says it’s not fair and he misses his home. This kills me. I just keep telling him that we will go home as soon as we get him better and that we have to be strong, keep fighting, and never give up.

Today, I was showing him his little lunch box with his name embroidered on it and I was spelling out the letters of his name for him. He looked at me and goes, ” I like it, but why doesn’t it say Rockstar Ronan on it?? I burst out laughing. Cutest thing ever. He spent the majority of the day playing April Fools jokes on me. He would tell me things like he had to go to the bathroom, and I would get him up to go and then we would yell out, “April Fools!” He must have done this a dozen times today. So glad my little prankster is up to his old tricks.

Ronan and I just got back to our room from our Friday Night Pizza Party. Woody and Quinn brought us pizza and we sat in the playroom and ate together as a family. Ronan was in a very playful mood and he is now tucked into bed watching the new “Clone Wars.” I’m going to cuddle up to him as he is getting sleepy. I am planning on slipping out soon and Woody will stay the night again. So thankful for that… I sleep horribly at the hospital and I really want to spend as much time as I can with Quinn before he leaves. I hope you all have a lovely weekend. Thanks for checking in!

xoxo

The worst of times are the best of times

Last night my very sweet friend, Ed, hooked our family up with 5 tickets to the New York Knicks game and floor passes. It was our intention to take Ronan, but with him inpatient at Sloan, there was no chance of that happening. Mimi and Papa offered to come and sit with Ronan so Liam, Quinn, Woody and I could all go to the game. I felt a little guilty leaving Ronan behind, but I knew how important it was for Liam and Quinn to spend some time with us. The four of us hopped on the Subway and headed downtown to the game. On our walk there, I caught myself getting really upset about not having Ronan healthy and happy and with us. It seemed so weird it just being the four of us. That was not how our family was meant to be. Woody could tell I was getting upset as I was being really quiet as I tend to do when something is bothering me. He kept looking back and asking if I was o.k. I put on my best face and told him I was. I gave myself a little pep talk about how important this was to Liam and Quinn and how I needed to try to enjoy the night as much as possible.

Once we arrived to the game, someone met us and we were taken down on the floor to watch the Knicks warm up. It was beyond awesome. We sat for a good hour and watched the teams practice and then went up to the suite where we were sitting. Before I knew it, I was having the best time. Quinn and Liam were so into the game and it was a great second half. It went into over time and the Knicks ended up winning. To my friend, Ed, who set this all up…. thank you from the bottom of my heart. You have no idea how much the 4 of us needed this time together as a family. It has been a long time since we have done something like that together. It was a great few hours of enjoying each other and something we will never forget. You have created diehard Knicks fans in both myself and Quinn.

Woody slept at the hospital last night and I stayed at RMH with Quinn. Liam went back and stayed with Mimi and Papa. The 3 of them left this afternoon back to Phoenix. Sad to see them go as we will miss them very much. Quinn is still here and has been hanging out with Woody all day while he works. I hate that he cannot be at the hospital with us and I am hoping Ronan will be discharged this week. Dr. Kushner came to see us this afternoon and was very pleased with how well Ronan is moving around. He is using his little arm more and more so that is a very good sign. We talked about the “plan” and as of now we are planning on doing scans again around April 11th. Depending on what they show, we may do another round of this chemo or go on to the NK-Cell trial. The most important thing that matters to me right now is keeping Ronan out of pain. It seems as if the radiation and chemo are doing the trick as far as keeping that under control. I find myself being able to breathe a little easier everyday as his pain becomes less and less.

This week we are focusing on getting Ronan out of here (come on ANC counts!) and spending time with Quinn. He played in the playroom of the RMH house all day while Woody worked. They had some volunteers doing mad science stuff and he had a blast. I am going to be so sad when he leaves to go back to Phoenix with Woody. A part of me really wants him to just stay here. I can’t wait for school to be out so we can have both of the boys’ coming out here more often and for a longer amount of time. It is so good for Ronan’s spirits. He completely lights up when they are around.

I am sleeping at the hospital tonight and Woody and Quinn are off at some movie. Ronan has been playing away with his Star Wars guys and I finally got him to eat tonight. Victory! He ate an entire Peanut Butter and Jelly sandwich and some Mandarin Oranges. His little appetite has been poor for a good week now. I can tell he is feeling better than he has in a while tonight due to the giggles and feistiness he has been displaying. I called him feisty tonight and he looked at me and goes, “Stop calling me spicy! I’m not spicy!” His little voice cracks me up. I spent the rest of tonight telling him stories and singing him songs. We talked a lot about all the people who are going to visit him in New York. I named off everyone under the sun and he kept saying, “Who else, mom?” I love my little conversations with my almost 4-year-old. I love you to the moon and back my little man!!!! That boy will never understand how much happiness he brings me with something as simple as his smile. It’s the most beautiful thing in the world.

My mom is taking the Red-Eye here on Sunday because Woody and Quinn are leaving. I know I am going to be a mess when Wood leaves. He is my rock and I already miss him. I love having him here with us so much. I mentioned before that we do really well in this city together. Not sure why, but we do. Maybe it’s because we are fully focused on Ronan together, without having many distractions. Makes me feel like we can do anything together… including getting our son well. My mom will stay until Friday….. I think. Tricia is also flying in next Wednesday-Sunday. Can’t wait for them both to be here with me. Ronan is very excited as well. My mom has never been to New York so I am hoping to get her and Tricia tickets to a Broadway show so she can experience something New York. I know the only thing she cares about is spending time with us, but I would like to let her enjoy New York and what it’s all about, even if it’s just for a few hours.

That is the update for tonight. I’m a little homesick but trying not to think about all the things I miss in Phoenix. It’s not things… it’s once again just my old life that I crave and yearn for. The only thing that is of importance which is being at home with Woody and my 3 healthy boys. I want that so badly that I can taste it. That’s why I have to keep pushing forward through all of this; so I can get us back there someday. For good. I can see it, I just can’t touch it yet….but I know it’s there just waiting for us. I will never give up on this baby boy of ours and he is never going to give up on me. He promised me tonight that he will stay with me forever. I refuse to let him break that promise to me. I will hold him to that until the day I die.

Miss you all very much. Thank you to everyone who has been checking in on us and all of your offers to help. If any of you that are reading this and are in New York and you want to help us out in any way, I thought of an amazing way to do so. You can donate blood or platelets to Ronan. All the information is down below and it would mean so much to us. And to all of you who aren’t in New York but wherever else you live, if you get the chance, please donate. These two things have saved my son’s life countless times. It is pretty easy to do, fast, and painless. Every time Ronan gets a bag of blood or platelets, I kiss the bag as I like to think I’m kissing the person who donated it. What an amazing thing to be able to do in this day and age and it helps so many people. Think of Ronan when you are doing it and think of all the other lives you are saving. Such a selfless act, and so simple and easy.

Sweetest dreams to all of my lovelies out there. Thank you for your outpouring support and love. Hugs and Kisses from NYC. G’nite!

xoxoxo

pastedGraphic.pdf RONAN THOMPSON Needs Blood & Platelets

Ronan is currently a patient at Memorial Sloan-Kettering Cancer Center in New York City. His treatment for Neuroblastoma requires regular blood and platelet transfusions.

Ronan would deeply appreciate your donation of blood and/or platelets and requests you ask others you know to donate. Donations not used by Ronan will be released for use by other patients many of whom are children.

To benefit Ronan Thompson all designated donations must be made in the Blood Donor Room of Memorial Sloan-Kettering Cancer Center

Please visit www.mskcc.org/blooddonations for complete information about donor eligibility and the donation process for blood or platelets.

For answers to questions and to schedule an appointment that is convenient for you please Contact:

Joe Licata – 212-639-8177

Manager, Blood Donor Program

licataj@mskcc.org

Blood Donor Room – 212-639-7648

1250 First Avenue (between 67th/68th Streets) NYC – Schwartz Building lobby

Open Every Day

Fri Sat Sun Mon 8:30am – 3:00pm

Tues Wed Th 8:30am – 7:00pm

The process for donating whole blood takes approximately1hour

The process for donating platelets takes about 2 ½ hours.

Appointments are necessary- All blood types are acceptable

FREE Donor Parking –

-Somerset Parking Garage, 1365 York Avenue –entrance on NW corner of 72nd Street

Hello New York. We’ve missed you….

I don’t have days where I don’t feel like writing very often. If I miss a few days here and there, it’s usually because I am too busy, too tired, or just taking a little break. Today is honestly the first day where I don’t feel like writing; yet as I sit on this airplane while Ronan sleeps, I have too many thoughts filling my head and my mind refuses to be quiet. So, I’ll share. Today, is the first time that I feel like it may be too much but I started this blog and one of the promises I made to myself was to always be honest, no matter how painful it might be. Today stings. Today was a blur. Today does not seem real.

My morning started off with Ronan crying about his arm because he is in so much pain. He was actually up off and on all night and his pain medicine seemed to only help just a little. That led me to sending Dr. Maze a text telling him what was going on and asking him if he thought it was a good idea to call Dr. Eshun this morning to ask if we could bring Ro by the clinic to give him a dose of morphine before we got on the plane. He responded with a yes. I called the clinic, but it was too early and nobody was there yet so I was told to call back at 8:00 a.m. A few minutes later, Dr. Maze responded that he had called one of Ronan’s main nurses, “A” and that she would be calling me soon. He didn’t have to do that for me, but he did because he loves Ro and that is just the type of person he is. One who goes above and beyond. I was beyond a mess but was trying so hard to hold it together and waiting for the clinic to open up so I could speak to someone was more than I could handle. “A” called me about 15 minutes later and I had a lengthy conversation with her. We talked about what was going on, what she could do for me, and how we could go about getting it done to work with us leaving on a flight at 3. She wrote out a new, stronger pain medicine prescription for Ronan and my dear sweet friend, Melissa, drove down to PCH to pick it up for me, got it filled at the pharmacy and dropped it off to my house. “A” also decided that I should bring Ronan down to the clinic at noon so they could give him a dose of morphine to make him a little more comfortable for the flight. This all sounded like a good plan to me and it was one of the reasons I made it through today. Knowing Ronan is in so much pain is intolerable and if I have to numb him until we start this chemo, bring it on. I can’t stand seeing him hurt the way he is.

Tricia stopped by on her way to work for a very quick goodbye. As soon as she walked in the door, we embraced and both started bawling. We held each other for a few minutes and she gave me her best New York pep talk, but it didn’t really work. I felt as both of our hearts were smashed on the floor below us in a million pieces. Our goodbye was fast as that is the only way we could both handle it; anymore time spent together would have been too much for us and way too disastrous.

After Trish left, I was scrambling to get last minute things done. Fernanda came over to help me and cooked up a huge breakfast for the boys. I was in such a daze and she could tell as she kept trying to tell me things and I couldn’t hold a thought for a second. I tore through the last of the mail, finished packing our things, and made a few phone calls. Fernanda scattered around, cleaned up the kitchen, and helped keep Liam, Quinn, and Ronan occupied. Bethany stopped by next and brought her little Madden with her along with her to play with Ronan. She came with her arms full of groceries for me as I told her this morning, my fridge was empty and my poor boys were living off of the junk in the cupboards. I told her I needed fruit, veggies, meat and all things healthy or else I was going to lose my mind. She couldn’t have been happier to help and I am so thankful. Ronan was so excited to play with Madden and we all sat and watched the 4 boys run around, chasing each other with Nerf Guns and laughing away. I watched the look in both Bethany and Fernanda’s eyes today as we watched Ronan trying his best to keep up, all while keeping his right arm down at his side as he was trying not to use it. The look in their eyes alone was enough to kill someone. I tried my best to keep them both busy with tasks as well as myself because I knew if I didn’t we were all going to crumble to the floor and end up in a wet pile of tears. My dear Niki stopped by with her two little ones in the middle of all the chaos to say goodbye. Stacy stopped by as well. Soon I had a house full of friends, kids, and it was so beautiful…. for being so ugly. I kept thinking to myself, my house should not be full of kids running about, laughing, and my dear friends because Ronan has cancer and we are leaving for New York. It should have been because it was a gorgeous Spring Break day and nothing more. Fucking cancer.

Everyone left except Fernanda who held the fort down as I hopped in the shower and got ready to go. Danielle came over right as we were walking out the door to leave. I was so glad I as able to give her a hug and say goodbye. Mimi and Papa came over to stay with Liam and Quinn and Fernanda took Ronan and myself to the clinic to get his morphine. I knew once I got there it was game over. I took one look at “A” and the tears started and wouldn’t stop. Dr. Adams came over as well to say goodbye and gave me a couple big hugs and said some sweet words. Sharon also came over and held Ronan and told him she loved him. She hugged me to and told me everything was going to be alright and she loved me too. I left there still crying, holding on to Ronan’s hand as he looked up at me and told me he was sad too. I know he is sad and it is not just because I am… he knows what is going on and what is killing him the most is the same thing that is hurting the most for me; leaving his brothers behind. He has been crying on and off about it all day long and has been saying, “But, I’m never going to see my brothers.” He says these words over and over and it cuts like a knife. I just put on my bravest face, lie to him, and tell him of course he will, they will be coming to New York in a few days. Not true at all, but I think Ronan is young enough he is not sure how much time passes between seeing Liam and Quinn. He doesn’t fully understand the concept of a few days or a few months as it all seems the same to him. I hope anyway.

We finished up earlier than expected at the clinic so we ran over to American’s Taco Shop for some lunch. Fernanda hadn’t been there before and as little of a thing as it was, I felt good giving her something like taking her to my favorite spot to eat Mexican food. Now she can share it with her family and knowing that I introduced it to her, felt so good to me. So little and silly, but little and silly makes such a difference in my life now. We hurried and ate our food and headed to the airport. Woody met us there with Mimi, Papa, Liam and Quinn. Liam seemed alright with us going, it was Quinn who I watched be worried. He gave me his biggest, nervous smile and hugged and kissed me. The worst part was watching Ronan grab on to Quinn’s thigh and kiss it goodbye as it was the last thing he was clinging to. I turned around just in time to see there last embrace before we headed off to the plane. We checked our bags and got to the gate quickly and here we sit. Ronan is sitting in the middle of us and is sleeping soundly. So soundly that I was able to take one of his Oxycodone, break it in half, and slip it into his mouth. Ah, the joys of being able to medicate your child so he can’t feel his pain and it is a victory that he didn’t wake up to fight me on taking it. These are the things that I get to be thankful for now.

Woody. My Woody. My Woody who is so worried about Ronan’s arm that he was feeling it on the plane and is convinced that he can feel the cancer in it. My Woody who looked at me and told me he felt like dying. He then said to me, “Why don’t you?” My reply was, “I do.” I watched him push the tears away and then he grabbed my hand. We stayed that way for a while and he then too fell asleep. I just sat, stared at both of them, and cried. Today has been way too much for me. Sometime I am amazed at all of the tears I am able to cry as they seem to never end. I wonder if someday, I will have cried so many tears that my body will dry up like a cactus and there will be no more. I wonder these stupid things in my head all of the time because I now believe anything is possible because of what we are going through. The thing that I had never giving a second thought about because I thought it was impossible and we as a family, were invincible. Things like this don’t happen to good people like us, right.??? Wrong. So very, very, wrong.

Time to get this New York thing going. Time to get Ronan on the path he was meant to go on. Time to make the very best of New York and all that it has to offer. Time for this city to heal my heart again as it has done it before and it can do it again. Time to get him well so we can be one step closer to being back home for good where we belong. I know we can do this…. he can do this; he will beat this. I have no doubt that New York is the answer we have been looking for. I’ve always wanted to live here… so I will take this and make this as positive as an experience as possible. I’m tired of fighting this new life; I have no choice but to embrace it as much as possible. I will take all the sadness and find the happiness in it; even if that means finding happiness is in a run in Central Park or seeing my twins’ faces on Skype. I’m not going to let this break me, ruin me, ruin my family. I may keep getting pushed down, knees scraped and bloody…. but I will never stop getting back up no matter how bloody and bruised I get.

Thank you to all of my family and friends who have helped out so much. You all have no idea how much you mean to us. My words could never be enough to tell you how thankful we are. I feel like we have a little army of ants, whom just keep working away, never stopping, until they see us through to the end of this storm. When Ronan is cured of this awful disease, I hope you know that you will all be a part of the reason that he survived. Your love and support keeps me from digging a hole somewhere and never coming out; right Trish?? I love you all to the moon and back. Kisses from New York to all of you…. we will never forget how blessed we are to have the people surrounding us that do. Only the best of the best, and the truest of the true.

xoxo

The knot

The knot in the pit of my stomach is back and stronger than ever. So bad, that I am convinced I have an ulcer. I spent most of the day trying to get things done, while begin doubled up in pain. I also had to hang up the phone with my mom because I couldn’t even finish our phone conversation due to having to throw up. You see, it’s not enough that my child has cancer. At least before now, he was acting like it was not affecting him at all. It is now. I watch him as he favors the left side of his body more than his right, as he winces as I pick him up and tells me not to hurt him, as he keeps his little right arm stiff by his side because it hurts to use it. It’s not an effect from the chemo…. it is pain related to the Neuroblastoma eating away at his body. The MIBG scan showed a lot of activity in his right shoulder still. I’m convinced this is why he is now in a lot of pain. He won’t tell me though. I’ve asked him 50 times today and he refuses to tell me he is hurting. That is how stubborn and strong he is. This is why he will beat this fucking disease. No matter how hard it’s going to be; he is not going to give into the pain.

Try watching your 3-year-old suffer this way while feeling helpless as FUCK. Try to go on while acting as normal as possible, like every second of your day is not filled with excruciating pain. I cannot even go into the details of tonight but I will just tell you as I was sitting on the bathroom floor with my husband I just wanted to crumble up and die. He is hurting as badly as I am, even though he is trying so hard to be strong. I’m tired of being strong and I’m tired of watching him try to be strong. Nobody is strong enough for this shit. Don’t get me wrong, we can both put on a good show but at the root of all of this is pain beyond belief. I don’t even know how I made it through today. I was a zombie and ended up at my Tricia Boo’s house pretty much broken beyond repair. I sat with my friend and she watched and listened as I tried to put my feelings into words and she tried to fix the things that I told her were wrong. Nobody can fix this. The truth of it is, the damage is beyond repair at this point. Unless somebody were to magically heal Ronan overnight, I will live with this pain for the rest of my life. I don’t know how much more I can take. Somebody throw me a freaking bone already and give us some good news. I cannot stand to watch Ronan hurt while knowing I can’t fix it. I am sick to my stomach thinking about all the active cancer cells in his body just eating away at him and causing him pain. How can something so evil be going on in his sweet little body? I will never understand this. It is so cruel horrific. This isn’t a freaking ear infection or a broken arm. Oh, what I wouldn’t give for that.

We got home late last night. I feel like I’ve been run over by a truck. Ronan is happy, in spite of his pain. Nothing makes him happier than being at home. We have to go back to New York sooner than expected. We have to be back by March 17th. I need more time. Time with my twins, time at home, time to wrap things up before we go away for god knows how long. We have to get Ronan back to New York asap to start the high dose chemo as well as the NK Cell trial.

I’ve got to get in the right mind frame for New York. I know once I get there, I will take it by storm. But it is going to be hard to leave here. Mostly leaving my twins behind. My heart is literally ripped into shreds. I know they are in the best hands in the world, but that does not make this any easier. But we have no choice. We have to get Ronan better and New York is are only chance. I cannot believe New York Miss Macy is not there anymore. I am beyond sad about that. Tricia told me I had to find a clone of her that lives there. I’ll be accepting applications via email. Yeah right. Impossible. There is only ONE New York Miss Macy in this entire world. My little ray of sunshine is gone and I wonder how I will survive.

Time for bed my peeps. Tomorrow will be better. Tomorrow Ronan will wake up and not be in pain. Please. Please. Please. I can deal with him having cancer as long as I don’t have to watch him act like he does. I can’t take the physical signs…. it is more than I can stand.

Sweet dreams, my lovelies.

xoxo