“The voice of beauty speaks softly; it creeps only into the most fully awakened souls” ― Friedrich Nietzsche

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http://blog.tattoosales.com/2013/09/09/september-is-childhood-cancer-awareness-month/

 

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Secret Dimples and Butterflies

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Ronan. You know what got me through today? That little secret dimple you gave Poppy. The exact same one you had hidden on your little right lower cheek. The one that only came out when you smile or pouted.

The picture below is you at around a year. This was Poppy yesterday. That secret little dimple is such a gift that every time I see it, I get butterflies in my stomach. You are beyond amazing for doing this and this is absolute proof that you played such a huge role in all things Poppy.

Thank you, Ro.

xoxo

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26 months without you

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Ronan. Today being 26 months without you, made me want to hide in my bed all day long. Your baby sister woke me up this morning at exactly 3:23 a.m., just minutes before you died, to eat. How does she already know everything at just 12 weeks old? How did she know at that moment, I needed a reminder that even though you are gone, you are still with us at all times? She is already so wise beyond her years.

I wanted to hide in bed all day and do nothing but sleep, sleep, sleep. I didn’t. I played with your brothers, instead. I went for a hike with your Papa Jim, your brothers, Poppy and Jady girl. I decorated some trees with your bracelets like I always do when I am hiking or out and about at places I know you would love to be with us.

I’m sorry I haven’t been writing to you on this blog. It makes me so sad that I have so much going on, that it seems to take away time from my quiet time, writing to you. Days are filled with me making sure your brothers are enjoying their summer as much as possible and bonding with your Poppy sister by making her smile and laugh as much as I can. The quiet time I have to myself which is really late at night after everyone is asleep has been spent working on this book. I have been having a war inside my head with myself about it. I swear I am my own worst enemy. I’m constantly doing the second guessing, the what if it’s not good enough, what if I don’t make him proud. A wise little editors words haunt my  head… “Remember, besides having kids, this is going to be the most permanent thing you do in life.” No pressure at all. The hardest part has been figuring out where to start, but I did it. It’s kind of like jumping off of a cliff. Sometimes you just have to close your eyes, follow your heart and take a huge leap of faith. I seem to be finding my words easily and so far, I have not had to go back to reference my blog at all. I’m sure there will come a point when I have to do that, but for now I seem to be doing just fine without having to reread my painful words. I know the inspiration I am finding all comes from you, so thank you once again, little man.

I’m going to keep this short and sweet tonight as I need to get some writing done for a few hours before my eyes fall too heavy to see the computer screen. I hate 26 months without you. I’m so sorry. I miss you so much that it makes me sick. I am doing my best even though I still have days where I just want to close my eyes and go to sleep for a very long time. I can’t do that to you though. We have too many things to get done here.

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

xoxo

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Bye Bye Little Sad House! We Have a New Home!

Ronan. Guess what? I had a good day. Another one of those crazy, good days where something so big happens, that I have seriously been jumping up and down all day long. Thanks to all of the amazing people you are just throwing my way, thanks to this blog, and thanks to the most kind hearted, generous people in the world, I now have a new home. As in The Ronan Thompson Foundation has an office! You know how important it is to me, not to spend the money that people are donating on administration stuff. This is why, I have been doing everything from our house. Our sad little house where I often work from our dining room table, our kitchen table, and even my bed. Our sad little house that leaves makes my skin crawl during the day because I miss you so much. I did not want to use our money, to rent an office space so I did the best with what we had, which was our house or one of the 5 Starbucks that I troll on a regular basis.That Starbucks music was about to make me slit my wrists. But now we have an office! And the people that work in this building, could not be lovelier! They are giving me access to all of their conference rooms, space, and my very own office with a door and all. They even have a COKE machine! Holla! (but don’t tell Poppy. We are almost totally off caffeine) It is the most beautiful building and it even has a basketball court which your brothers are so excited for! They just handed me over a key, and voila! Welcome to our new home! I took Becca and Stacy there today. They both cannot believe this. Carolyn called me and left me a message that said something like, “This is the yellow brick road and you are Dorothy!” That make me smile so big. It just tells me, once again, what we are doing, is so right. If it was not, things like this would not just continue to happen over and over again. Thank you, Amy for hooking this up. Thank you, V and K. For being so kind and generous today. I can not wait to have an actual place to go to where I will be a thousand times more productive. And maybe a little less sad. Watch out childhood cancer! I’m really going to kick your ass now! I promise to be the best little tenant ever.

I have been reading all of your comments today. I had forgotten about that story that happened while Woody and I were in a Nordstrom Rack in San Diego. The one where I was watching that little girl play in all the clothes racks. I was mesmerized by her. I had just lost you. I heard her mom call out her name. “Ireland!” I almost fell over. I went up to the mom. “What is your daughters’ name?” She just looked at me and said, “Ireland.” I smiled and said, “It’s beautiful.” That has been our girl name, for about 10 years. I wonder if that was a sign of what’s to come. I have a few more weeks before I will find out. Ireland Ronan. I think you would have loved that name. We shall see, right Ro baby. If this baby is a girl, I will fall over. I never thought I would have a girl, but have always felt like I was meant to have one. I will be just as happy if this is a boy, too. But oh, how much fun would a little baby girl be. My due date is April. I have a ways to go. I think I am starting to feel a little better and pie is still my best friend. Meat is still my enemy. So much so that I am wondering if I’ll become a vegetarian after this. The thought of this made me laugh due to Dr. Jo. She is a hard core vegetarian and has been so for over 20 years. I often give her crap about this. She would fall over if I became a vegetarian. I used to love my meat, but now I think I know how she feels. I don’t my hatred with meat will last, but as of now the thought of it makes me ill. Pie. I’ll just stick with pie for now.

Your brothers have a basketball game tomorrow. They are at practice now. We are going to go to dinner when they get home. We don’t have many plans for the weekend. Most of our weekends are low key. A lot of time at home, which is still hard for me. Our house still to me feels so empty and sad, without you here. I don’t understand how even watching your daddy and brothers, watch football is normal now. As in, this is exactly what they would be doing if you were here but you are not here, so how are we doing the exact same things? The exact same things feel so wrong and are so hard for me. I wonder if this will ever get easier. I often feel like after you died, we should have just up and moved to freaking Australia or somewhere crazy. So we would be doing all different things. I know that running away would not have solved my sadness, but living in the same house, without you is hard for me. It’s comforting to your daddy and brothers so this is why I stay here. I sacrifice myself, for them. Having my own office, is going to help so much. Having my own space without your little empty bedroom 10 feet away from where I am working is going to save me. Once again, I am so grateful and humbled by the kindness of strangers.

It’s late now. We went to dinner. I ended up throwing up in the bathroom. Quinn was eating a piece of steak beside me. I couldn’t take it. I tried my best. We are home now. I’m begging your daddy to go and get me a pie from the store. Because he is the best daddy ever, he will. I’m tired. It’s been a long and busy day. I missed you tonight, when we were riding in our old jeep to the restaurant. Oh, how you loved that thing. Kind of broke my heart, to be in it, without you. Ronan, do you want to know the one question I get asked, all the time? It’s so funny. It’s the “Who is Mr. Sparkly Eyes.” A lot of you, ask that in my comments. How do I even put into words, who he is? I could describe him in a thousand different ways. But the most important thing is he is someone who loved you so much, Ronan. He is someone you loved so much. You two had a bond and almost a secret language. I know he is connected to your soul and you are to his. He is doing such a good job, of watching over me for you. He is quite simply probably one of the few reasons that I am still alive. He has saved my life and for that, I have you to thank. Thank you for him. I thank you for him, every single day. Some things I like to keep private, like people’s real names. Same with our Fairy RoMo. I have to have some things I keep to myself. Those two, will always go by their nicknames.

I love you, my little seal. Ah, for those of you who have also been asking… the logo for Ronan’s Foundation is a little seal, because that is what his name means Irish and Gaelic. I love that so much. A little seal with the biggest eyes. So sweet. Goodnight baby doll. I miss you. I love you. I hope you are safe.

xoxo

Seriously, Taylor Swift. I could not love you more.

 

 

Your daddy said it best tonight, Ronan after watching this. You would be so proud. You were always so proud. I am so proud of you and everything you stand for. I promise to try my hardest to do such good things in this world. Thank you, Taylor, for seeing the beauty in my child and falling in love with him so much so, that you wrote him a song. You are simply amazing. I know he is so proud of you and your heart.

http://youtu.be/gXYVulAXbKI

Ro baby takes San Francisco

We are leaving this evening for San Francisco. Praying for a safe flight of course but most of all praying for a little bit of clarity. I hope by looking into Dr. Matthay’s eyes, that I will have a better feeling about everything. I am hoping she can give us some answers and guidance. I am hoping that Woody and I will walk away from this trip feeling a little more prepared for what we are up against. As of now, all we can do is gather all of the data possible and let our intuition guide us. I hope to get a feeling of what San Francisco can offer us.

Today, I met with my friend, Mr. Sparkly eyes. I put on my bravest face but he knew just by looking at me that I was a wreck. We sat for about 20 minutes and had it out. He asked me why I was second guessing myself… told me to knock it off and just to continue to do what we are doing. He is right, I have never been one to second guess my choices in life and I cannot start now. I listened as he pounded into my head once again, how strong I am, how strong Ronan is and how when the decision is made, it will be the right one. It was just the little pep talk I needed. I felt stronger after having left him and I know he is right in everything he is saying. I met Fernanda for a bite to eat at Chelsea’s but it was really just another little pow wow session that I needed to have. I am so lucky to be surround with such bright and beautiful people. I wish I could put Fernanda in my back pocket and take her with us. We sat and talked about everything from Ro’s path, which is uncertain as of now, to how we are going to get Oprah to listen to us and do a show on Childhood Cancer. Fernanda has been emailing Oprah every single day and has made it her personal mission to make Oprah listen. Could you imagine the good things that would come of this if she did?? The awareness that would be raised?? I don’t think it’s asking too much of her to change an episode of her show for something so important. I just pray that she hears all of the people asking this of her and chooses to do the right thing. She has the power to make this happen, if she would only listen. Her voice could change childhood cancer forever. Does she realize this?? I am not giving up on this Oprah thing, and if anyone can make it happen, it’s Fernanda. Thank you, F…. for lunch today and for the spirit of the person you embody. I swear to god you have wings. I have meaning to throw this quote in for a while. My friend, Melissa DiFilippo, who’s little girl is in Liam and Quinn’s first grade class sent me a message the other day on FB. It said, “When I grow up I want to be Fernanda.” It makes me laugh out loud and brings a smile to my face every time I think about it. I couldn’t agree more.

Alright world…. here we go. Off to San Fran and it’s time to take care of business. See you sooooooon New York Miss Macy!!!

xoxo

Why hello beautiful boy

Today was actually a wonderful day. Wonderful as in we only had to go to the clinic for the standard blood tests and to have Ronan’s broviac dressing changed. We got to see our favorite nurse, Sharon, which is always a treat. Ronan told me today that she is his favorite person to see at the clinic. So sweet he is. This morning he woke me up at 7 a.m. on the dot demanding scrambled eggs, pronto! I tried my best to put him off as I was so cozy in bed but he wasn’t having it. I got up, made him his eggs, and got Quinn ready for school. Liam is still at Mimi and Papa’s due to not feeling well. After Quinny got off to school, I spent the rest of the morning cooking for Ronan and making him food about every half an hour. He is constantly hungry which is a very good thing, but leaves me exhausted and I don’t get much else done around the house. We headed out to PCH and had a chance to talk to Dr. Eshun about Ronan’s scans. He overall seemed pleased with everything but does not want to give us any concrete statistics until we get the MIBG scan done. This will be the most telling of all of the scans. Thursday cannot get here soon enough. After the clinic visit, Ronan was begging me to take him to Chelsea’s Kitchen for lunch. We met Woody there and watched as Ronan chowed down some of Woody’s French Dip, french fries, and his Grilled Cheese Sandwich. I had my favorite, the Ahi Tuna Tacos. Most amazing things ever. I could never get tired of that place. Ronan was happy to be out with his mom and dad and it was a gorgeous day spent with a gorgeous boy who is feeling wonderful. You have no idea what it does to my heart to see him so happy and carefree. Forget the fact that his life has been overtaken by cancer; today none of that mattered. Quinn came home from school and cousin Luke came over for a couple hours to play. The boys played baseball outside and ran around like crazy. I felt like a normal mom for a minute… making them after school snacks, helping with homework, doing laundry, and getting to hear all about Quinn and Luke’s day at school. It’s days like today that the cancer cloud that hangs over my head disappears for just a short amount of time. It is the most wonderful feeling in the world. I made the boys’ dinner and as soon as Woody got home, I headed out to my gym to get in a quick workout. I’d better try to get in as much exercise as possible before transplant starts because I know once that starts, all of my workouts are going to be gone for awhile. Not looking forward to that but I will just have to suck it up and keep telling myself that this isn’t forever. Soon we will have Ronan back and our lives will return to being somewhat the same; but with much more appreciation for anything and everything that comes our way. After going through something like this, the little things are going to seem so less in our life and we have learned what truly matters. I am grateful in a way for this lesson and I have all the faith in the world that Ronan was put here on this earth to teach us these things and to help us change the world. He has such a special journey planned for all of us and we are going to follow his lead. I have learned to just go with my gut feeling with most everything in my life and it always turns out right. I will follow Ronan to the end of the earth and back and feel so lucky to do so. He is the most amazing little boy. Never in my life have I known someone so strong, brave and beautiful and he is all of this at only the age of 3. Just imagine what he is going to be like as an adult. I cannot wait to see what life has in store for him.

I have learned that my days now are filled with both sadness and beauty. I am o.k. with that because I try so hard to make sure the beauty outweighs the sadness. Maybe Ronan was born such a beautiful boy for this purpose… because this has always been what his journey in life was meant to be and being so beautiful, would help me get through this?? Never has a more beautiful boy existed and I am not just saying this because I am his mother. I am not biased, this is the truth and I now know it was for a very special reason. All I have to do when I am feeling too sad or scared is look into his big blue eyes and my fears melt away. The look in his eyes tells me over and over that he is going to be fine. I truly believe that with every part of my mind, body, and soul. Everyday, I am finding things I am thankful for and it reminds me how precious life on this earth is. Ronan is a gift and I am so happy I get to share him all with you.

That is all for tonight. I am going to hot yoga with Stacy at 5:30 a.m. in the morning. Told you I’m taking full advantage of my freedom and what better way to start my morning than drenched in sweat and tears. Love you all my dear friends. Sweet dreams of peace and happiness.

xoxo

Love my name
Love left dry
Frost or flame
Skeleton me
Fall asleep
Spin the sky
Skeleton me
Love, don’t cry
Love, don’t cry
Love, don’t cry
Skeleton me
Skeleton me

Soon comes rain
Dry your eyes
Frost or flame
Skeleton me
Fall asleep
Spin the sky
Skeleton me
Love, don’t cry
Love, don’t cry
Love, don’t cry
Skeleton me
Skeleton me

Skeleton me

Goodnight moon

Home. After over a month of being in and out of hospitals, between Sloan and PCH… we are home again. So sweet. Yesterday, Ronan’s ANC was only at 80… today it jumped up to 240! That is very high for just one day. Ronan’s little body is fighting so hard to come back after being beaten down so badly. After Arica, our amazing friend/nurse, told us the great news about Ronan’s ANC.. she still wasn’t sure if we could go home or not. She said she didn’t want to get our hopes up because we were scheduled for scans as an inpatient for tomorrow, so that may mean they may just make us stay the night again. My sweet friend, Fernanda, came to sit with Ronan so I could run home and shower. She texted me about a half an hour after I left to tell me the doctor came in and told her that after Ronan received a transfusion of platelets, we could be on our merry way. I was so thrilled to hear this news as I was not expecting it:)

When I returned to PCH, Ronan was sleeping and when I walked into his room I had to laugh at the snow cone tent/stand that Fernanda bought for Ronan, along with his very own snow cone maker so they could sell snow cones to the nurses. Can you even stand the cuteness of this right now?? I can’t. It was the most adorable thing ever. What an amazing heart and imagination she has. Arica was telling me that when they were making snow cones, all of the nurses were like, “What is that all that noise?” Arica said she was laughing and told them, “Oh, don’t worry.. it’s just Ro making snow cones with his snow cone machine.” Only Ronan with the help of Fernanda would pull something off like that while stuck in the hospital. The thought of the two of them doing this together makes me so happy. Thanks, Fernanda, for everything. For all your help with Ronan these past couple of weeks and hauling all of our things to my car for me today. I don’t know how I would have managed without you, my dear:)

As we were getting ready to leave PCH, we were waiting for one of our doctors, “A” to come and talk to us about the weeks upcoming events. She arrived from the clinic all flustered, panicked and excited. She was jumping up and down about Ronan’s ANC and said how amazing he was that it spiked so high in one night. Talk about being passionate about her job. I love seeing that in someone who is caring for my child. A lack of passion in life is fatal. I have always felt this way and seeing “A” as often as we do, she is one of the most passionate people I have ever come across. Makes me love her even more. She told us that one of the scans Ronan was supposed to have this week, the MIBG scan had to be delayed due to the iodine not being able to get here from Canada due to the big storm. I told her not a big deal at all, as I know the situation is not in her hands. She was also trying to figure out a way to squeeze in one of Ronan’s bone scans tomorrow with all of his other scans, so we could limit the amount of times that he has to be put under anesthesia in the next two weeks. The only problem was Dr. Maze had a certain time blocked out for Ronan’s anesthesia, and throwing another scan in cut into something else he had scheduled. His office didn’t think he would be able to do it so they were going to have to get somebody else.  Just as she was telling me this, she looked down at her phone and started jumping up and down saying, “Yes, yes, yes! Thank you!!!” She then told me, “Nevermind, Aubrey moved whatever he had and will be there to do all of the scans.” She was smiling and saying how she was going to have to bake him cookies now for this one. What a good friend and a good man he is to us. He knows how important it is to us to have him do Ronan’s anesthesia. Thank you, Aubrey…I have decided that you are first a good man, and than a good doctor 😉

Ronan had his EKG and Echo Heart scan done today just to make sure everything is working properly. He was of course a great little trooper about having yet another thing done to him. I did have to bribe him into leaving his room to go for these scans by letting him take the 5 pounds of candy that Macy sent him from New York. Thanks Mace! Nothing like a little candy straight from Dylan’s Candy Shop to get the morning started! You spoil my child rotten and he loves you all the more for it! I love you for making me laugh the entire day with your ridiculously funny 4 minute long voicemail. You have no idea how much I needed that one today:)

Home today has been heaven on earth. To have all of my boys’ under the same roof is a dream come true. I did spend most of the night unpacking our 20 bags and doing laundry. I couldn’t stand the thought of having to wake up to them in the morning and then having to come home from a long day at the hospital tomorrow to them staring me in the face. The boys helped as much as they could and Woody cooked dinner. It was a nice, normal, happy night. It feels really good to all be together again.

Ronan knows the drill for tomorrow. I have been preparing him for it all day as far as having to get up early to go back to the hospital so Dr. Maze can give him his sleepy medicine. I find if I prepare him for things, he is less likely to throw a fit. He told me tonight it’s o.k. to go back to the hospital, as long as he doesn’t have to be “hooked up” as he calls it, to his pole. I told him he would not have to be hooked up, he was just going to get his sleepy medicine for pictures and we would go home after. He is being very cooperative with all that is being thrown his way. I am so lucky to have such an amazing little boy. He never ceases to amaze me.

Tomorrow is a big day for Ro. Please keep him in your thoughts and prayers. He will have his audiology test first thing, his bone marrow scan, and then his bone scan. We know from the scans in New York, that the Neuroblastoma was not detected in his bone marrow, but we will have them rechecked at PCH and have the bone test done as well. When Ronan was first diagnosed, he had Neuroblastoma in everyone of his bones and 5-10% in his bone marrow. We know that it is now gone from his marrow, but his actual bones may be a different story. We will hope and pray that it has drastically decreased. It cannot be any other way.

Tonight, I am happy to sleep in my own bed with my little bug curled up beside me. I was able to tuck in Liam and Quinn which means the world to me now. Who would have ever thought something so little would mean so much in the grand scheme of things. Tucking in my little boys’ is the happiest place on earth for me. I am very thankful for the nights that I am able to do this and will cherish them for the rest of my life.

G’nite to all of you beautiful souls out there. Thank you for all the love, thoughts, and peace you are sending our way. Nobody said this was going to be easy, but it is going to be worth it. The love that surrounds our family is something we are so thankful for. Sweetest dreams to you all.

xoxo

I never understood before
I never knew what love was for
My heart was broke, my head was sore
What a feeling

Tied up in ancient history
I didnt believe in destiny
I look up you’re standing next to me
What a feeling

What a feeling in my soul
Love burns brighter than sunshine
Brighter than sunshine
Let the rain fall, i don’t care
I’m yours and suddenly you’re mine
Suddenly you’re mine
And it’s brighter than sunshine

I never saw it happening
I’d given up and given in
I just couldn’t take the hurt again
What a feeling

I didn’t have the strength to fight
Suddenly you seemed so right
Me and you
What a feeling

What a feeling in my soul
Love burns brighter than sunshine
It’s brighter than sunshine
Let the rain fall, I don’t care
I’m yours and suddenly you’re mine
Suddenly you’re mine

It’s brighter than the sun
It’s brighter than the sun
It’s brighter than the sun, sun, shine.

Love will remain a mystery
But give me your hand and you will see
Your heart is keeping time with me

What a feeling in my soul
Love burns brighter than sunshine
It’s brighter than sunshine
Let the rain fall, I don’t care
I’m yours and suddenly you’re mine
Suddenly you’re mine

Do you know if this hotel is pager friendly?? I’m not getting a sig’ on my beeper.

It’s days like today that make me really angry at cancer. I pretty much sat and held Ronan the entire day. We snuggled in bed and on the couch and watched movies. He won’t let me leave his side; not that I would want to. We watched “The Fantastic Mr. Fox,” and the ever so appropriate, ” The Hangover.” (hence the title of my post tonight) I seriously think that is one of the funniest movies ever and I don’t think I could ever get tired of it. Ronan laughed a lot during the movie in spite of his pain. I’m not censoring much these days from him, especially if it makes him laugh. He is feeling awful and has been fighting a low grade fever most of the day. I’m pretty sure he’s developing Mucositis, just like he did with Round 4 of his chemo. He’s telling me his throat hurts, he’s not talking much, he doesn’t want to eat. He’s in pain and just wants to be held. I’m pretty sure we will end up at the hospital if I can’t get his fever to go away. I am positive his ANC counts are at 0. That means no immune system at all. Poor baby. I would give anything to take his pain away.

Our Saturday should have been spent at the twins’ basketball game and at our dear friends son’s 2nd Birthday party. I was so sad to miss both of those things today but I am glad Woody was able to go and take the boys. As my Niki said tonight… next year we will all be together to celebrate her little one turning 3. Thanks my friend, for checking on me the entire day even though you were in the middle of your son’s birthday. You are so amazing to me. Woody and the boys’ had a blast and came home so tired. They are now all snuggled up in bed while I sit here and will stay up as long as I can to watch Ro and his fever. I spoke to the on call doctor tonight and she said as long as his temp does not go above 100.4; we don’t have to come in. Hoping we make it through the night.

I still hate the nights. The nights where if and when I fall asleep, my dreams are filled with such vivid nightmares that I toss and turn all night long. The nights where I no longer get to sleep with my husband because Ronan refuses to share our bed with anyone but me. My poor Woo… what kind of a man would allow a child to kick him out of his own bed? Only the kind of man who has a heart of gold and who would give up anything and everything for his son. I feel awful. I miss Woody and our precious time we used to have together staying up late and laughing at silly things that we would talk about at night or watch on T.V. while the boys’ slept. I feel like the rug has been pulled out from underneath me in so many ways. I’m tired and we still have such a long road ahead. Will this nightmare ever end???? Will I ever get my normal life back??? Everything is forever changed; and it better be with a very sweet outcome. All of our blood, sweat, and tears will save our baby. I swear to god on my life. Fucking cancer.

That is all for tonight. Going to try to unwind while watching my sweet lil’ man sleep. G’nite, sweet dreams my loves.

xoxo