A barefoot hike and a spicy little dragon

Ronan. Every single morning I wake up, the first thing I do is miss you. I will never be the mama that wakes up with a fresh set of eyes. My eyes are always sad, mostly bloodshot and my heart is always heavy. Every single morning, I have to make a choice to get out of bed. It’s a choice because a lot of days, I do not want to wake up at all. After a very heavily induced Ambien coma sleep last night (yeah, I totally went there), I woke up this morning saying all kinds of shit in my head. You HAVE to get up today. You HAVE to make 2 decisions today. You HAVE to check 2 things off of your list. You have to start making some decisions about Ronan’s death day/birthday that is approaching. I get up. I make my way to your brothers room the same way I do every morning. I walk past your room. My stomach drops that you are not in there. Your bed is neatly made. I go into Liam and Quinn’s bedroom. I open their blinds. “Good morning, boys! Rise and shine!” I turn on their shower. I text back and forth with Rita. We make some plans for tonight, as a family. YAY! I get to see her little dragon! I pack your brothers lunches and drop them off at school. “Bye boys! Have the best day! Try your hardest! Be nice! Be kind! Help others! But don’t take anyone’s crap! I love you!”

I decide to make a run to Target for a couple of things and one of them includes a couple of little trucks for my little dragon friend of mine. I get so excited about seeing him. I love his little raspy voice, the way he says my name over and over, just to say it, and the way I get to hear him call out to Rita, “Mama,” because that is what he calls her. I am a sucker for that mama word. I am a sucker for the way he sometimes talks about himself in 3rd person. I am a sucker for this little dragon friend of mine who makes me want another baby/child so freaking badly. I would actually just like to take him home, but I don’t his two totally amazeballs parents, would be o.k. this. I’ll just continue to take him in the doses I get him in, which totally makes my day.

It’s while browsing through the toy aisle at Target that I of course, walk past the Star Wars toys. I can’t resist. My heart flip-flops back and forth. New guys! New helmet guys that Ronan did not have, but totally would have wanted. I pick them up. I put them back. I almost walk away. I can’t. I turn around and grab the new guys and throw them in my cart. I’m buying them for Ronan. I don’t care if he is not here to play with them. I run home, look at my get two fucking things done list, I sit down and do them. Good job, you. I look around at our house. It’s so freaking clean. Everything is put away. There is not even laundry to do or windows to clean from your little pudgy, dirty hands smearing stuff everywhere. This is FUCKING BULLSHIT. I throw on my workout clothes. Well, since there is no maybe baby, I guess I can go beat myself up a bit. I drive to our mountain.

I listen to Dr. JoRo’s voice in my head telling me, no headphones… just try to be quiet. To be mindful. I run up our mountain. Except instead of taking our usual route when I get to the top, I turn the corner instead. I slip off my shoes and continue up, down, around, and around the unfamiliar trails. It’s hot. Nobody is around at all. My heaven. Inferno hiking season is almost back. My feet don’t really feel any pain. I run for a long time, barefoot. I stop after about an hour and a half of hiking up, up and up. I find a nice spot, throw my things down, sit down on a big, black rock. I close my eyes for a long time and think about you. I snap a picture to send to Rita. She responds back that the cactus I’m sitting in front of, looks like it flipping off cancer. I laugh. It totally does.

I head back down the mountain, keeping my shoes off for half of the way. I stop to put them on and start to cry. A few ideas trickle into my head about what it is, that I would like to ask people to do for your death day. I’ve decided that’s what I’m calling it. Not your passing day (that sounds too sweet) not your anniversary (i hate that too) I guess I could call it your Fuckiversary. That has a nice ring to it as well. You deathday/fucking bullshit Fuckiversary it is. I know a lot of people will want to do something. I’m creating a little list in my head of what it is, I would like to see done. Up until today, I have not been able to even think about it without getting physically ill and drawing a total blank. It was only today, during my hike of numb pain, that ideas started to spin around. I’ll write about them later, not tonight. I’m tired and I want to be able to let this all come about, naturally, and I don’t feel like I’ve gotten it all figured out yet.

My little hike lasted 3 hours. It was nice to be outside, connecting with nature in a physical way. I get in a funk when I don’t do things like that. I always feel close to you and I tend to feel the closest to you, on that little mountain of ours. I left your bracelets all over the same tree below, like I do every single time I am there. I always wonder who finds them. I always wonder if they will google your name and learn about the most beautiful little boy who ever lived. I hope they do.

I went to your favorite restaurant tonight, Chelsea’s Kitchen, with that little Dragon friend of mine, his parents, your daddy and brothers. I felt like you were there with us. Especially as I watched Little Dragon, jump into the water fountain outside of the restaurant with his shoes, socks and pants on. If you were there, you totally would have done it with him and I would have laughed. I laughed and I almost heard your giggles in the distance. I laughed even harder when that Little Dragon, grabbed someone’s shoe that was just sitting near a rock by the patio (seriously who takes their shoes off, at a restaurant?? if you ask me, they were just begging to be thrown into the water by a very curious 4/maybe 5 year old) and threw it in the fountain/pond. Such a little rebel Ronan move. Your brothers thought it was hilarious. Rita, apologized profusely, but secretly /not so secretly to me, thought it was funny. I looked up at the sky and blew you a kiss. It was a great ending to an almost good day.

I love you to the moon and back my very spicy, little monkey boy. I’m so sorry for all of this. I miss you. I love you. I hope you are safe.

xoxo

Fight Like a Rockstar

Ronan. Hi baby. I’m missing you so much tonight. But what’s new. The missing part of you is constant and is something that never goes away. The weekend is almost over. Thankfully. It was fine. O.k. Alright. I did my best. I had a lot of busy work to tend to. Busy work that I keep telling myself is going to get us somewhere. Busy work that I keep telling myself, is going to make a difference. Busy work that I know you would be proud of. If I didn’t have this busy work, I would be sitting around, pulling my hair out. I would be in the corner, curled up in a ball, in my bedroom not wanting to come out. Not just some days, but every single day.

Sunday Funday. Right? No. Sundays that I hate. Sundays that are filled with an eerie stillness that I detest. I stayed in bed until 1 p.m. Yup. You heard me. I could not fall asleep last night. I tried. I wrestled with my sadness/anger/tears, until 4 a.m. I almost punched your Daddy just because I was so annoyed that he was sleeping so peacefully next to me. I don’t know how I pass the never-ending time that exists during the night. If I am going to be a Vampire/Zombie, I am going to have to start coming up with some productive things to do, besides listening to the screaming inside of my head. I need a crazy, productive hobby. I think I need to make a “Go To,” list for the nights that I am so restless of things that I can do. You know how I LOVE a list.

I made myself get up out of bed today. I took Quinn and we ran some errands. We went to Target. Your favorite place. As soon as we were walking in, there was a lady who was in front of us who was getting her cart. She was bald. I took off my “F U Cancer,” bracelet and simply said, “I have something for you.” I gave your bracelet to her. I don’t think she even read what it said as she quickly just gave me a thank you. I needed nothing more. I hope your bracelet makes her even more mad at cancer and it makes her work harder, to fight harder, like a Rockstar. Like you always did. Like I will continue to do, for you.

Strolling through the aisles of Target today…..ugh. I cannot concentrate enough to navigate my way through that store anymore. Everything in it reminds me of you. Happy, lovely Target. Full of your Paul Frank Monkey friend, Julius. Full of your Star Wars guys. Full of your Burt’s Bee’s Coconut Soap that I used to wash you with. Full of the Slurpies that I would always have to buy you, just to get you to sit in the cart. But you never did. You would have hung on the side of the cart instead. You would have tried to ride one of the display bicycles. You would have hidden from me in the racks of clothes. Your giggles would have filled the entire store and made my heart skip a beat. They always did. Today, I took Quinn there instead. Quinn my little helper who takes on the responsibility of pushing the cart, trying to pick up the case of water for me, and who helps me remember the list of things I needed, because I left my physical list, at home. If it would not have been for Quinn today, I would come home without the little list of things we needed. I would have abandoned our cart to cry in the car instead. Thank you, for him.

After we left Target, I told Quinn we needed to go to Smart and Final. He was annoyed and wanted to know why we had to go there and why we couldn’t get all of our drinks, at Target. I told him that Smart and Final is the best place to buy Liam’s Gatorade and that they are the only place I can find my Mango/Peach Coconut Water. He tried to talk me out of going, but I didn’t listen. Oh, how very happy I am that I insisted on going to Smart and Final today. It made my miserable Sunday, absolutely amazing. We got into the store and of course we got the cart that just didn’t work right. Quinn was laughing at me because I insisted that we would just make the best of it and use the cart that only wanted to turn right. I came up with some amazing there is a lesson in everything, kind of metaphor for him. Something along the lines of working through a tough situation and making the best of it. I made him laugh when I crashed into the Gatorade aisle. I told him I was not giving up on our crazy cart, to trade it in for a new one. I don’t know what I was trying to accomplish with this at the time as it would have been so easy to just go and get a new cart. There is a lesson in everything, right? At least that is what I was trying to explain to your already too worldly/knowledgable about life, 8-year-old little brother today.

As we were checking out, I noticed the side of the counter was lined with little flyers that read, “Kids 4 Hope.” Hmmmm….. I thought as I went to read the fine print. I thought to myself, I’m sure it has something to do with anything but Pediatric Cancer. I almost passed out when I saw that each dollar donated, was in fact donated to funds for Pediatric Cancer. I asked the girl who was scanning my items, what exactly this was for. She told me you could purchase a flyer in someone’s name, for a dollar, for Childhood Cancer. I had to take a minute to absorb the amazingness of this. After a few seconds, I said, “Can I buy 50?” She looked stunned. She replied back, “50? Really? You want to buy 50 of these?” “Absolutely,” I told her. Quinn sat back, quietly observing. The girl counted out 50 little flyers and I than told her that you, my son, had passed away from Childhood Cancer. She got quiet, handed me the 50 flyers, a pink Sharpie, and some tape. She asked how old you were. I told her 3. She told me she has a 3-year-old, and could not imagine.

After I paid for our items, I moved over to the other counter where Quinn and I stood and wrote your name on all the donation flyers. I looked over and the girl who had helped me, and she was ringing up her other customers as the store was super busy. She was bawling. That in turn, made me start to cry, and your poor brother Quinn….. he did not know what to do. I did not know what to do, so I just continued to cry and fill out your name. I tried not to get angry at all the customers who said they would NOT like to donate a dollar to Childhood Cancer. It took everything I had not to pull up your picture, shove it in their faces, and ask what was wrong with them! It was only a dollar! You were worth so much than a dollar! And it’s for kids! Who in the world says no to that?!?! As I witnessed today, a lot of people. It just goes to show you how much the lack of awareness for Childhood Cancer, truly does effect the outcome. People won’t even give up a dollar. Standing in that Smart and Final today, I vowed to myself, once again, to make this change.

I went over and talked to the sweet girl that rang up my groceries today. I asked what her name was. She told me it was Ida. I told her how beautiful it was. I gave her one of your bracelets. I asked to speak to her manager because I wanted to ask him how much he knew about where this money was actually going. He came out, I introduced myself, and he didn’t know much. He went back to get the print out that the store was given for this Kids 4 Hope. I told him I was amazed that they were doing this in their store, for the ENTIRE month of October as this is unheard of due to Susan G. Komen. Everything for the month of October, goes towards Breast Cancer research. I thanked him and practically skipped out of that store today with our wobbly cart. I told Ida I would see her soon.

I came home and googled the handout I was given. It’s legit. You can read about the boys who started this, below.

Troy and Jake Paul are two Los Angeles natives who combined their passion for basketball and their desire to help other kids when they formed their charity, Kids 4 Hope.

When their mother Renee was diagnosed with cancer a few years ago, Troy, now 13, began collecting bottles from local businesses and neighbors in order to raise money for his mother’s newly started charity,Racing For Hope, which benefits City of Hope. “We recycled the bottles and made $1,200,” Troy says, “and we gave the money to our parents’ charity.” But from that point on, Troy says, “we realized we wanted to be able to raise more money, and wanted to branch out and start our own charity.”

The desire to help children suffering from cancer came when the boys saw what their mother went through as she battled the disease. Jake, now 16, says they saw “how hard [battling cancer] can be for an adult, but trying to grasp a young kid going through that–I couldn’t even imagine what that would be like.”

This led the Paul brothers to start Kids 4 Hope, which, according to its website, “is dedicated to raising funds to support City of Hope’s research, treatment and special programs for all of the children battling cancer.”

In order to raise money, the boys turned to their biggest passion–basketball–and decided to create an event that would be both fun and charitable. “We wanted a way to put our own personal touch on the charity, rather than just raise money with a regular fundraiser,” Jake says, “so we incorporated something we both like, which is basketball, and made it a fun way for kids to help other kids.”

Jake and Troy Paul hope both Kids 4 Hope and its events will inspire other kids to take up causes they can enjoy also. “Of course we would love to raise money through this charity,” Troy says, “but hopefully kids can see what we do and take something they love and incorporate that into a way to help people.”

Their advice for kids looking to start charities of their own or looking to get involved in a good cause? “Find something that you’re passionate about, because it’s great to help kids, but it’s easier if you are doing something you love,” Jake advises. “The main idea is any way a person can help is positive. You are helping someone else, so do something that makes it seem like more fun than work.”

Can I kiss these two boys, please? I would like to kiss Smart and Final while I’m at it. Look at how these two young boys, took something that they believed in, and made it into something so beautiful.Well, I believe in something, Ronan. I believe in YOU. I believe that you truly are going to change the face of this disease so that someday, there will be a cure. I really needed to be reminded of this today, Ronan. That anything is possible. Well, almost anything, Ro. You know what I mean by that, baby.

Alright my lovie. I have to try to shut off this mushy brain of mine for the night. I’ve got an early running call in the a.m. I love you to the moon and back. I hope you are safe. G’nite my Babydoll.

xoxo

I wish cancer got cancer and died

Ronan. Night is setting in. Another day gone without you here. It was as good of a day as I could have possibly made it. It’s just me here with your brothers. No breaks, no running, no time to sit in a corner and cry about missing you. The show must go on. We all slept in. I had a hard time getting to sleep last night, even with my Ambien. My mind was racing with thoughts of you and I felt as though I couldn’t breathe. I felt as if I was going to have a full fledged panic attack right here in my bed. I stayed as calm as I possibly could and talked myself down from the ledge. I actually just started counting in my head. Counting until everything went black and I fell into my dreamless, medicated, state of sleep. I woke up to the sound of your brothers. I got up as soon as I heard them as I knew that this was not a day to hide in my bed because I am the adult here. I am the only one around to take care of them. I went straight into mommy mode. Late breakfast made, dishes and laundry done, had them do some work in their workbooks, packed up our beach bag and headed outside with them. We played football for about an hour in the sand. I broke up the fights and arguing over plays. At one point, Liam told me I cheated at the game. I laughed at this and told him it was impossible to cheat at a game you were playing, when you didn’t know the rules. All this football talk had my head spinning and I was penalized for a play that I had no idea about. I was a good sport, but geez! That brother of yours, Liam, is a competitive little kid. He was so serious about the game. Quinn did his usual laughing at everything and Liam ended up tackling him to the ground and proceeded to throw sand in his face. That was the end of the football game.

Quinn wanted to swim in the pool but Liam did not. I took Quinn up to swim as I watched Liam from the pool, digging in the sand all by himself. It made me sad. He didn’t stay at the beach long and soon came to join us at the pool. I swam and played Marco Polo with them, I let them both get on my shoulders as we splashed around in the water. I got out after a while to warm up. That’s when I saw him. The little boy who looked like a carbon copy of you, except with dark hair. He had your same piercing blue eyes and delicate features. He was in the little pool, that you swam in just 2 years ago and he was about your same age then. I almost threw up as I watched him do the same things you did in that pool. He jumped off the edge, into the water, completely fearless just as you were. He threw a toy my way and I bent down to get it for him as the Nanny apologized in Spanish. The dad sat on the sidelines, working away on his laptop. I started to cry and it took everything I had not to walk up to that dad and ask him to please just open his eyes and to play with his little boy. Not out of judgement, but out of the sheer innocence and beauty of watching his baby boy play so carefree and innocently. It was such a painful gift for me to see today. I swore as if I was staring at you. This was me, 2 years ago, in that pool, playing with you. I sat there and watched the little boy for a good 15 minutes and then decided that I couldn’t take anymore. I gathered up your brothers and we headed upstairs to the condo. I took a shower, told them to get dressed so we could go out to dinner. They didn’t want to go, but I had to get off of this island for a bit.

We ended up at a pizza restaurant and Quinn said he had remembered being there with you last year. He was right. His memory amazes me. I sat with your brothers and we talked about a lot of things. About life, about you, about the importance of things. I asked them what the most important things in life to them are. They both said you. I said yes, they were right. I also told them about the importance of helping others and the importance of always taking care of each other. I told them how lucky they were to have one another. It was a nice dinner with them.

After dinner, I took them to Target to spend their money that they have saved up from their birthday. We decided to get some movies to watch tonight. As we were leaving Target, your brothers were smiling and so full of giggles. They both told me thank you and Liam stood up on his tippy toes to give me a kiss on the lips. I was instantly taken aback by the happiness I saw in his eyes. He has missed me. I have missed him. I tried to let myself get caught up in the moment but I just couldn’t let go of the pain. I’m constantly fighting with the pain that refuses to leave my side, even with the beautiful Target moment that happened tonight.

Once we got back home, we popped in a movie. “Little Fockers.” All 3 of us thought it was funny and you know what a sucker I am for that Robert De Niro guy. I told your brothers all about him and how they could watch one of my favorite movies, “Casino,” when they turned 15. They wanted to know what they couldn’t watch it now. I told them because it wasn’t appropriate for their little eyes or ears. They have plenty of time to learn about the amazingness of Robert De Niro. All in due time, my little one.

All is quiet here except for the screaming inside of my head. Everything I did today took so much energy and effort on my part. Trying to nurture two little boys, when you have absolutely nothing to give, is hard. I mean really hard. I gave it my all today. I gave them everything I had which seemed to be more than enough. I made sure they both had a good day and put myself on hold. I don’t have a choice right now. For this week, while your daddy is gone and I am alone with the boys, I have to put myself on hold. I cannot stay in bed all day, I cannot scream, cry, or break dishes. Thank god that I am a calm person by nature. I never knew how much that would really pay off for me in life. It certainly has now. If I didn’t have my calmness, I would be totally screwed. Speaking of calm and screwed.

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!FUCK YOU,CANCER!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Yeah. I’ve kind of been holding that in all day. I haven’t be able to run in a couple of days so that needed to come out. It almost made me feel better, but not really. I’m still on this Neuroblastoma website that is kind of like a support group for parents. I get emailed with things during the day as the questions go to everyone who is in the group. Sometimes parents are  asking for advice on treatments, hospitals, doctors, sometimes new children are asking to be prayed for, sometimes prayers are asked for kids like you, Ro, when you were close to death. I cannot seem to unsubscribe to this server list and as much as I’ve tried not to…. I may be borderline obsessed with it. When I see a kid on there, same as you, Stage 4, I’ll go over all the details and protocols that they are doing than I’ll usually end up screaming at your daddy, “Why didn’t we do this?” I know this is not healthy, but I’m like a freaking crack addict except my drug of choice is Neuroblastoma. A mom called me from this list and has asked me advice for her son, who I sat across from at Sloan. Her little boy, Jaxon is not doing well. I told her to get contact Dr. Gisele Sholler to get him started on the Nifurtimox trial asap. His disease is progressing rapidly and he is having a hard time walking. Sounds so much like you. She also asked me about the radiation to help his pain. I told her to start that ASAP. We have all learned that time is the last thing on your fucking side with this disease. I also told her about Dr. Mosse at Chop. Because she is a GODDESS and Neuroblastoma should be scared to death of that woman. I have a feeling about her and the way she is going to revolutionize the treatment for this disease. I hope that woman gets everything and more in her life that she has ever wanted. I know you will be watching out for her, Ro. I’ll never forget the look in her eyes when she had to tell us you couldn’t do the treatment because your MIBG activity was too active and because of how full your bone marrow was again. She locked eyes with mine and wouldn’t let go all while having to deliver the most awful news. I’ll never forget anything about that day. The rain that started for a few minutes after she told us. Daddy’s tears. Me, who could do nothing. I couldn’t cry because Daddy was crying and I had to hold it together for him. It was only later, after I left the room to talk to Dr. Mosse about some other questions that I had that I allowed myself to cry a little. FUCK. That quality of life word kept coming up. What the fuck does that even mean?? I had just gotten so used to all the cancer lingo and now this new word was being thrown in my face over and over again. It seemed like a nice little term, all wrapped up in a pretty package, and then you go to unwrap the bow, and “POP!!” That big “quality of life,” word is basically a nice way of saying “You’re FUCKED.” Well, that’s my interpretation of it at least. I’m not here to sugar coat anything, people. I’m not here to tippy toe around the fact that everyone knew we were fucked, but you know you can’t give up on that whole “HOPE,” thing. Even I couldn’t give up on it until that Mother’s Day when I knew your little body was failing you, Ro. It was too late to get you to San Diego. Our time had run out. FUCKFUCKFUCKFUCKFUCK. I am so sorry. You know I would have taken you to Switzerland if I could have. We would have taken you anywhere. But your little body couldn’t take it anymore. I know your soul wanted to fight on, but we had to listen and respect what your body wanted us to do. And it was tired. And you were tired. And it was time for you to just go to sleep; just like I asked.

I don’t remember how I even got started rambling on and on about the above things. I’m waiting for the day that all of you lovelies just up and disappear because 1) You’re going to get tired of hearing me talk about the same things over and over 2) because you just want to go on with your happy lives or 3) because this story is just too sad and dark, or I use too many swear words. If number 3) applies to you, then peace the fuck out. Somebody sent me a super rude email a few days ago. I’m going have to start a file for “The Haters.” It said things like…..” You are embarrassing yourself and your friends aren’t telling you the truth. You need to stop writing and write in a journal, because everyone I know has stopped reading what you are writing. And the people who are reading, are not moms. It is a joke that they are telling you how amazing you are.” I took the time to tell her, obviously she didn’t know any of my true friends, because that was bullshit and to also tell her that I’m glad she stopped reading this as well as her friends because this was not the right blog for them. They need to go seek out a blog about Unicorns, Butterfly’s, and Puppies. Then go blow it out their asses. You don’t like this reality? You don’t like these swear words? You don’t like my truth? The truth that anyone in my situation would be thinking in their heads, but are too scared to put it out there. Ohhhhh…. my bad. I’m so sorry to have offended you with all this reality. A reality, sometimes a death sentence that is handed out every year in the form of 12,500 babies, toddler, kids, teenagers. Yes, Yes, I agree. Let’s choose to ignore this and go back on living inside of our little bubble. I totally get what kind of people you are and I want NOTHING to do with you.

Through all of my pain, sadness, ranting, raving, anger, and swear words, will come something beautiful… I promise. Right now, I am thinking about the Butterfly Life Cycle. I feel as if now, I am in my little egg. In hideout… but plotting a plan. I will soon move into the Catepillar stage…. becoming somebody stronger and new….. I will then go into the Pupa Stage, where I will build my protective shield and completely transform. I will then burst with color while becoming the beautiful butterfly that I know exists inside of me. This beautiful butterfly will revile herself when the time is right and the perfect plan is in place to do some major ass kicking to cancers ass. This beautiful butterfly will still say the word, “FUCK,” when she feels like it though. Deal with it or go away. You have no idea how hard it is to go though what we are going through, even as you read this blog and think you do. If you don’t like what I’m writing, stop being offended and stop reading. Then go volunteer at a hospital in the Oncology Unit for a month and I will be waiting with open arms as you run back and tell me how sorry you are. Or go volunteer and feel nothing. No judgement there at all. But my arms will no longer be open to you. Go home and live your little sheltered life and forget about these beautiful children who have cancer or have died from it. Forget about Ronan. I dare you .

Also, the reason I don’t write in a journal and I choose to share all of this with all of you 1,248million and something people….. I started this as a way to keep everyone updated on Ronan. It started off that way for a while, but then this force kind of came in and took over. This blog pretty much took on a life of its own and being honest and open about everything felt good to me. It was therapeutic and I feel like I have such beautiful story to tell with Ronan; for as ugly as it may be…. just writing out his name for you all to read is beautiful enough to me. I want you to feel my pain, his pain, I want you to be inspired, sad, mad, offended, thankful, scared, educated,….. I want you to live this through me because I know Ronan will make you all better people, better moms, more appreciative, he will teach you the true meaning of life. If, you want his lessons that is. Free will here. Nobody is forcing anything. My ultimate goal is to have you all on our side when we raise awareness for Ronan and Neuroblastoma. Anyway you can help, whatever little thing you can do, even if it just means wearing his bracelet, commenting on my blog, or spreading his story around. That is such a beautiful gift to me. The power of people can be very persuasive. I believe we can make something amazing come from Ronan’s death, make him so proud and celebrate the way we did after we finished “Round 5,” of his chemo. It was just the two of us at home, celebrating. He ran out to the garage to the refrigerator where we keep our Gatorade, sodas, and beers. He came running back in, so excited with 2 cold Coors Lights in his hands. He goes, “Here mama!” “Cheers!” I was so shocked but it was so innocent and cute and he was so excited. I took those 2 Coors Lights in the middle of the day and opened them for us. We both took a couple of sips and then went on with our Star Wars Game. I’ll never forget that day. He seriously was so much older than 3. That boy always loved his beer. So much that Woody would have to hide it from him. Little devil.

I know Ronan. I know you were here for such a short time to teach me some things. Because I have learned so much in such a short amount of time from you. I’m just getting started. I can’t wait to see what journey you have planned out now for me. It is all in your hands. Everything that happens from here on out is due to you. You loved me too much to just walk away, to just leave me behind. We were one. We are one. I’ll follow you into the dark. I’ll follow you to China if that’s where we need to go. I’d much prefer Thailand though….. can you throw me some signs to get me there:) Let’s do this baby boy. Together forever. Your little body was just a shell, it was the most beautiful shell that ever lived on this earth but you know what is even more amazing? The soul that lives outside of that shell. So light, so free, so happy because you get to take care of all of us. You always wanted to be the boss and we pretty much let you. I promise to make you proud, Ronan. I know you would have not been offended by my potty mouth. Words are words. If anything we should turn the world CANCER into a swear word. That is the most offensive word that exists.

OK BABY. This may have turned into a little crazy night for you with all my blabbing about this and that. And no wonder they say you should never operate a car on this Ambien shit! You should not even be allowed to write on a blog on it! Whatever. Power to the Peeps of The Rockstar Ronan Fan Club. Whomever chooses to stick about, they are your truest fans. I’m not going to stop fighting until some drastic improvements come about and someday a cure is found. This is my promise to you RO. For you and all the other kids fighting for their lives. After this summer, it’s time to get our plan in place. Soccer mom by day. Maya’s Mafia by night.

I love you, Ro. My little “not spicy,” monkey blue eyed  brad pitt baby boy who would melt you with one of his infamous winks. Sweet dreams angel. I hope you are safe. You are forever loved.

  • Childhood cancers are the #1 disease killer of children – more than asthma, cystic fibrosis, diabetes, and pediatric AIDS combined.
  • Childhood cancer is not a single disease, but rather many different types that fall into 12 major categories. Common adult cancers are extremely rare in children, yet many cancers are almost exclusively found in children.
  • Childhood Cancers are cancers that primarily affect children, teens, and young adults. When cancer strikes children and young adults it affects them differently than it would an adult.
  • Attempts to detect childhood cancers at an earlier stage, when the disease would react more favorably to treatment, have largely failed. Young patients often have a more advanced stage of cancer when first diagnosed. (Approximately 20% of adults with cancer show evidence the disease has spread, yet almost 80% of children show that the cancer has spread to distant sites at the time of diagnosis).
  • Cancer in childhood occurs regularly, randomly, and spares no ethnic group, socioeconomic class, or geographic region.
  • The cause of most childhood cancers are unknown and at present, cannot be prevented. (Most adult cancers result from lifestyle factors such as smoking, diet, occupation, and other exposure to cancer-causing agents).
  • One in every 330 Americans will develop cancer by the age of 20. On the average, 12,500 children and adolescents in the U.S. are diagnosed with cancer each year.
  • On the average, 1 in every 4 elementary school has a child with cancer. The average high school has two students who are a current or former cancer patient. In the U.S., about 46 children and adolescents are diagnosed with cancer every weekday.
  • While the cancer death rate has dropped more dramatically for children than for any other age group, 2,300 children and teenagers will die each year from cancer.
  • Childhood leukemia (making up the largest group of childhood cancers) was once a certain death sentence, but now can be cured almost 80% of the time.
  • Today, up to 75% of the children with cancer can be cured, yet, some forms of childhood cancers have proven so resistant to treatment that, in spite of research, a cure is illusive.
  • Several childhood cancers continue to have a very poor prognosis, including: brain stem tumors, metastatic sarcomas, relapsed acute lymphoblastic leukemia, and relapsed non-Hodgkin’s lymphoma.

Happy 4th Birthday Ronan Sean Thompson

Ronan. Happy 4th Birthday baby boy. It was the fastest 4 years of my life. It flew by in the blink of any eye; but now that you are gone, the days and nights drag on forever. Time seems to be standing still. I woke up at 6 a.m. and hiked Camelback by myself. I have decided to make this a tradition and do this on your birthday every year. I put about 20 of your purple F U Cancer bracelets in my backpack and when I got to the top of the mountain, I decorated one of the trees with all of your bracelets. I hope a bunch of new people are wearing your little purple bracelets around and I hope they know your story now. I’m so motivated on spreading the word that I will do whatever it takes. I looked for you at the top of the mountain today, but I didn’t see you. I miss your beautiful face so very much.

After my hike, I came home and got ready for your day. It was a hard day and all I really wanted to do was hide in my bed. I didn’t but I honestly don’t know how I survived. I had to write out your obituary today. On your birthday of all days. Your daddy wanted it done. It really only took a few minutes and I am surprised how quickly all of the words came to me. I guess you were helping me along because it was very effortless. Who would have thought that I would be writing out the words to be printed in the paper about your death, on the day you were born. It really is the cruelest joke ever. And nobody is laughing.

Your dad, Nana, and I took Liam and Quinn to Chelsea’s Kitchen for lunch; your favorite spot. Quinn ordered a Shirley Temple and they brought him his drink with lots of extra cherries and I didn’t even have to ask. It was just the way you would have liked it, Ro. I ate the Ahi Tuna Tacos just for you because I have not eaten in about 3 days. I was not hungry, but I forced myself to eat for the sake of your birthday. After lunch, we took Liam and Quinn to Target to pick out a gift from you to them for your birthday. Liam got the new Lego Pirates of the Caribbean PS3 game. Quinny got a new Lego Wii Controller. It was hard to walk through Target without you as that used to be our special thing to do. It felt very eerie and sad.

We came back home and tried to fill the rest of the day with as much happiness as possible. It was exhausting and we all had a hard day, trying to make something so sad, somewhat happy. We didn’t pretend not to be sad though. We talked about it instead. I told Quinn how he and Liam may need to go talk to someone about all of this. He just responded, “Why mom? I can just talk to you.” I told him of course he could, but sometimes it was good to talk to someone on the outside because I am hurting so badly as well. I told him I would go with him and tried to explain to him how this was the worst thing that could happen to a family and how important it is to embrace all of our feelings and not keep them bottled up inside. He seemed to understand what I was saying for the most part but I know at 8 years old he cannot grasp the magnitude of what has happened. At 33, I have yet to grasp it myself. Shock and numbness are still all I feel.

Later in the evening, our house started to fill up with some of the girls whom shall remain nameless. You know who they all are; the one’s who have held me up this whole time.  The one’s that love you so much, that they seem almost just as sad as me. The one’s whom I would not be standing here if it were not for them. They all wanted to celebrate you, Ro. They swooped me off for a few hours and we celebrated you in the most beautiful way possible. 11 of us got tattoos in your honor. Almost all purple stars, some tiny, some big. There were a lot of tears tonight with the girls, but the amount of love was something like I have never experienced before in a room full of all women. At one point, I looked at Fernanda and said, “I feel like there is so much love here, that it is going to bring him back.” I am serious when I say that. I felt like the heavens above would open up and drop you back down into my arms where you belong. That is the only place you belong and I will never stop believing that it is going to happen someday. But Ronan, if it doesn’t happen, I will try my hardest to be o.k. I have the best man taking care of me, the best twin boys, and friends that are so unbelievably beautiful that they seem almost not real. I don’t know how I got so lucky to have all of them; but I know that I am so ridiculously thankful that it makes my head spin.

Once we finished up our little tribute to you, we went outside with a bunch of purple balloons. I held a purple star one for you. All of us gathered around in the parking lot and sang “Happy Birthday,” to you baby. We then let the balloons go. We all cried, held on to each other and watched the balloons float into the dark air. It was beautiful for being so sad. We all came back to our house and broke out your birthday cake. Quinn and Liam were dying to have some. Gathered with a bunch of our friends, I lit 4 candles for you and we all sang “Happy Birthday,” again. My eyes stayed totally locked on your daddy’s eyes because I knew if I looked elsewhere, I was going to lose it. I had to stay strong in front of Liam and Quinn. I put on my best mama boots and sucked it up. I wished for you baby. Just like I’ll do everyday for the rest of my painfully long life. Being without you is like being a trapped wild animal. I will never escape this cage and I wonder if this feeling of restlessness will last forever. It  makes me want to crawl out of my skin, this feeling of being without you. How long before I completely crack?? I can slowly feel the numbness wearing off and I am so scared of what is to come. Just the tiniest taste of knowing what life is really like without you is so physically painful that I am almost positive that I won’t survive this. If the pain of a broken heart could really kill someone, I would be dead by now.

I’m sorry, Ro. For being so sad tonight. I hope it makes you feel better to see how we ended your day. I know you saw us outside, playing basketball in the dark with your brothers. I could almost hear your whispers in the cool air of the night. I know you know how much we all love you and miss you so much. So many people let balloons go today for your birthday. People we don’t even know, Ro. You are the most loved little boy up in the sky. I love you to the moon and back. It was the best worst birthday ever and we will never stop celebrating your life. G’nite sweet baby boy. I love you so much.

xoxo

A winking kind of weekend

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

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

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

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

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

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

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

xoxo

Knock on wood

Today is day 8. Every time Ronan starts his chemo treatments, his blood levels are supposed to drop after 7-14 days. Which means, less energy, his immune system is low, etc…. Nothing yet. I took him to the clinic yesterday and his blood levels were still good. He has been full of energy and has been running around non-stop. Let’s hope this continues. Woody and I can’t get over him and how great he looks, for being so sick. None of this makes sense at all. I am just taking this as another great sign that Ronan is going to beat this and pray we continue to sail right through this. For dealing with something so difficult, he has been a champion…. not acting like a sick kid at all.

We have been taking advantage of being at home and doing normal things. The boys’ have been playing together non-stop. The love my 3 boys have for one another is so powerful and moving. It’s helping us win this battle. Last night Ronan cuddled up in Quinn’s bed and fell asleep with him. I left him there all night and only got up a few times to check on him. He slept peacefully the whole night through and woke Quinn up around 6:30 this morning to play. Ronan was upset that the boys had to leave for school this morning but I kept him busy. We ran some errands and I even took him into Target. Shhhhh! Don’t tell Woody;) I took him in to grab a few things, the store was empty, and I didn’t let him sit in a shopping cart. Poor kid has been begging me to take him for weeks now. We were very careful and I sanitized his hands about every 5 minutes. It made his day. He just wants to do normal things, like we used to do. So we did<3 And we will continue to do things as “normal” as possible. I am getting used to the looks of pity when we go out into public and Ronan doesn’t want to wear his hat. It doesn’t seem to bother me as much anymore. Heck Ronan doesn’t even care or notice, so why should I??

As of now, Ronan’s surgery is scheduled for the end December. I have a nice little story about the exact date of his surgery. I was telling my new friend, Pam, who has the little girl, Victoria, who is a cancer survivor, when it is going to be. As soon as I told her, she got a little quiet and goes, “Oh my god. That is the date that Victoria’s surgery was.” Same surgeon, Dr. La Qualia and everything. Another one of those good signs that I’ve been seeing during through this entire journey. We both got goosebumps and I got teary eyed. So Christmas in New York it will be:) Just wish it were under different circumstances but we are going to make it the best Christmas ever. As my dear Karen keeps saying, it’s one step closer to Ronan’s wellness.

Our next round of Magic Medicine does not start until November 1st. Until then, if all goes well, we will just be making visits to the clinic twice a week and we will be home the rest of the time. There truly is no place like home. Tonight, we went for a walk down to the our neighbors house. Ronan ran the entire way, only turning back to catch the football we were throwing. We had a great walk with our friends and enjoyed the cooler weather. It was the perfect evening and I was so happy that we were all together as a family.

I fell asleep early tonight, cuddled up to Ronan. Only wish I could sleep the whole night through…. ended up waking up in a panic and now my mind will not be still. Too many unknowns and worries keep me up. How do you sleep when the baby right next to you has cancer?? I woke him up to tell him I love him a few minutes ago. I tell him that 100 times a day. None of this has gotten any easier, but it has become our new way of life. This is not a life I would wish on anyone, but it is our life now and we will make it as happy and beautiful as possible. To be any other way would not be fair to Ronan or the twins. I know how important consistency and security is in a childhood. Especially in little guys who are 7. They will remember most of what we are going through so we have to make sure we make this as positive of an experience as possible.

Woody came home tonight with his hair buzzed super short. So sweet and cute of him to do. Ronan loved it and kept wanting to feel the top of his head. His long eyelashes are starting to go, as well as his eyebrows. His eyelashes are still there, but they are not as thick as they used to be. It just makes him that much more beautiful. Every feature on that child is beyond perfection.

So, if you don’t hear from me this week it’s only because I am taking full advantage of my healthy baby and being home. This week has been spent playing catch up on all the things I am behind on from being at the hospital all last week. It is amazing how far behind I can get on things around here.

Sweet dreams, friends. <3

A long week ahead

Our weekend was a great one. Ronan is still refusing to act or look sick which makes this whole thing so much easier on us. I can tell his beautiful eyebrows are starting to go, but his full eyelashes are still hanging on. He looks so beautiful. On Friday we had family game night and just played at home. Ronan was of course thrilled to be spend the night with this big brothers. On Saturday Liam and Quinn had their basketball game. We were brave and let Ronan go. He was in heaven. His BFF Winston came to watch as well. It was their first mini reunion. They were both shy at first and wouldn’t even look at each other. Ronan stayed right on my lap. By the second half of the game, Ronan went to sit by his big brothers on the court and Winston soon followed. They sat by each other, talked, played, and laughed. I had to fight back the tears. It was hard to see but also beautiful to watch. Ronan took off his hat during the game and I could see other parents staring at him… also hard for me to see. I am fully aware of how sad our situation is but being out in public with him, seeing the look in other people’s eyes makes it so much more sad and real. I am so happy we took him out though, I think Woody is starting to realize that it is o.k. as long as we are making sure he washes his hands a lot and we don’t have him around people who are sick. We won’t be going to the grocery store or anything like that with him, but I think it is important for his well-being to get to do some of the same things he used to be able to do.

Saturday night we had Kay, Charlie, and Uncle Ron over to watch the ASU game. The Devils won, so it was a good night here. Liam and Quinn went home with Mimi and Papa because they had to get up early on Sunday to leave for the airport. They left for Colorado for the week for their Fall Break. Ronan was very upset about that, he was crying really hard as they got into the car. We finally got him settled down, but he is still talking about them and saying he wants them to come home. It’s better that they are gone and off doing something fun. Ronan and I have a very long week ahead of us. Last night Auntie Karen and Olivia came over to watch Ronan so Woody and I could go out for a bit. We were both tired but agreed we should take advantage of sneaking out for a bit. We didn’t do much… went for a drive and then stopped at Target. When we came home, Ronan was asleep so we hung out for a while and listened to Wood’s 45 record collection together. It was a very sweet date night. Simple but sweet.

Today, Ronan and I will head over to PCH around 1:00 to get checked in. We will be there for the entire week for Round 3 of his magic medicine. I am trying to have a positive attitude about it as far as staying the entire week in the hospital goes. It sucks that we can’t be at home… I know how much better Ronan does here. I will just have to keep his spirits up by bringing lots of things to read and we will have to go for a lot of walks. I don’t want his little legs to get weak again by sitting in a hospital bed all week.

Woody will be flying out to NYC on Thursday to meet with the doctors at Sloan Kettering. I am excited for him to get out there, talk to the doctors, and then I can be sure that the path we are choosing for Ronan, is the right path to take. New York is my absolute favorite city and I’m trying not to be sad about the reason Woody is going out there. It has always been our favorite place to visit together. Someday we will go back, as a family, and celebrate Ronan being healthy and cancer free.


Yesterday was the Susan G. Koman breast cancer walk in Phoenix. SO MUCH PINK! AMAZING! Pediatric Cancer awareness was last month. Did you see the sea of Yellow anywhere? Take a minute to think about that. Pediatric Cancer is the #1 killer of children of all childhood illnesses combined!