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

tumblr_msvum2eFQA1qfpb1ao1_500

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

 

photo

Secret Dimples and Butterflies

tumblr_mp564w34Dd1rojbm4o1_500

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

334_34485346666_1349_nphoto 5

26 months without you

1373061038482954_tall

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

This slideshow requires JavaScript.

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

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

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

Scans are done… now we wait

We are home finally from our long evening of scans. Ronan started at 4:30 this evening and was not finished until about 8:00 tonight. Dr. Maze was there, as always, to give Ronan his anesthesia. He stayed the entire time, even though I was told that he would more than likely not be there when Ronan woke up. He was, and that meant the world to us. He is truly a doctor that goes above and beyond. The world would be such a better place with more people like him in it. He takes the time to go over everything with us… to make sure we are being taken care of, listens to our question and concerns and to give us advice. We will forever be grateful for him. He has made a huge difference in this experience for us. Ronan trusts him and truly loves him. He is only really like this with Dr. Maze and our wonderful nurse, Sharon. Those are the two people Ronan trusts the most… and those are the two people I trust the most. It makes a big difference when you can look into the eyes of the person who is taking care of your child and see that they truly have a passion and love for what they are doing. I see it every time I look into the eyes of the both of them. It brings me a lot of comfort and somehow makes me feel like everything is going to be alright.

Ronan woke up really grumpy from the anesthesia. He got a little sick to his stomach and slept the entire ride home. He is asleep now and I am hoping he stays that way for the rest of the night. Poor baby. He had a hard day and spent the better part of it being upset that we were at the hospital and not at home. It’s days like today that I feel so heartbroken for him. I just want him better and healthy so he can go back to his life before all of this. I did my best and was strong for him all day long… I spent the entire time at the hospital talking him through everything and trying to distract him. He just wanted to be home with his brothers. I don’t blame him; I did too.

I got to spend some time with Tricia and Marisa tonight. They both came to the hospital so I wouldn’t have to wait alone. It was nice to sit and laugh with them. They know when I need a good distraction and waiting for Ro to come out of anesthesia is always hard for me. Thanks girls for sitting with me tonight and thanks Marisa for checking my blood sugar levels;)

This weekend we are going to lay low and enjoy our family time together. Ronan will start round 3 of his “Magic Medicine” on Monday and I just found out that we will have to be admitted into the hospital for his treatment. The dose is stronger so they will need to monitor him all week. Not excited about that but like always, we will make the best of the situation.

We should hear back about Ronan’s scans some time tomorrow. Praying for good news and praying hard. Sweet dreams my friends.