4 Months feels like 4 Years. Thanks, Cancer. You’re AWESOME.

Ro. I can write tonight. I need to write tonight. It’s been a couple of days I think. I don’t know that I’ll be able to sleep tonight. It’s creeping up. The 9th of every month date. 3:30 a.m. will be here soon. I’ve been dreading it all week. Consumed by it. 4 months is almost here. What was I doing at this time, 4 months ago? Laying with you, while Fernanda sat and watched you so we could get some sleep together. I was cuddled up beside you, which was always my favorite place to be. I’ll bet you Fernanda was rubbing you, trying to sing, “Twinkle Twinkle Little Star,” but she didn’t know the words, so she had to Google them on her phone. I love that story. She watched you because she knew that I needed the rest and I wouldn’t sleep if someone wasn’t keeping their eye on you.  She knew when it was her time to go and I think she left around 2:30 a.m. She kissed us goodbye and left the two of us in the room, alone together. She knew that it was time for you to go. She knew that we needed to be alone. She knows so much. I remember watching you. Your little breaths got so shallow. I remember The Ryan House nurse standing over us and how fast my heart was beating. I looked up at her and asked if you were gone. She told me not yet, but it was going to be soon. I remember thinking how unfair it was that my heart was rapidly beating, yet yours was getting ready to stop. I kissed you all over. I told you I loved you and whispered to you, “Come on baby. Come with me. Let’s get out of this place.” I asked her to go and get your Daddy. You waited for him to come in and kiss you goodbye. Then your little heart just stopped. Just like that. I go over this night in my head, at least 10 times a day. I pray that you know how much I love you, I pray that you were not scared as I worry about that so much. I still can’t believe you are gone and that I am still here, living this life, without you.
I had a mini freak out today. Panic took over after I dropped your brothers off at school. I knew I could not go home to an empty house. I went to Starbucks and sat with my computer and went through emails and paid bills. I emailed somebody at www.spirithoods.com and told them about you and asked them if they had ever thought about donating their amazing “hoods,” to kids with Cancer. I told them how much you loved yours and how many cancer kids would comment on it, but probably couldn’t afford to buy one. I asked them to consider donating some. I actually got a response pretty quickly and I was very impressed. I’m working on them and I have a feeling they won’t let me down. Could you imagine how many smiles their Spirit Hoods would bring to the faces of kids everywhere. Hospitals are notorious for being cold. Remember how much we loved wearing ours together. You looked so cute in yours. I could have gobbled you up and am sure I tried. I miss your little face so much.

One of our favorites met me for a bit today. I was a wreck, but tried my best to remain calm. I don’t think I put on a very good show. It’s fine. I have never been one to pretend with our lovie. No reason to. I talked about how this date is hard for me every month. I tried not to cry and just listened to the words that came my way. I tried to keep an open mind and to not be angry at the fact that you are not here. Our lovie sat and told me that you are not really gone, that you are everywhere. That you will never be gone. I know this deep down, but it does not take away the pain of your physical self not being here. It does not take away the pain of not being able to hear your squeaky voice or look at your beautiful face. Our lovie asked for a smile. I refused as my smile seemed nowhere to be found today. I’ll bet you I went the whole freaking day without smiling. And I always smile for our lovie. That’s how you know it was a really, really, bad day. I know you know. I know it’s on my really bad days, that you find some way to make me feel a little happy. I found that today when I went to visit my new friend, Katie, at her boutique. Her kind heart and kick ass music playlist made me feel good. I joked with her that she must secretly have access to my iPod because I swear she always has my favorite songs playing while I am in her store. Tom Petty’s “Last Dance with Mary Jane,” was on when I was telling her that. Oh, Tom Petty…. how I love thee. And Miss Katy…. this new gorgeous girl you have put in my life, Ro. Thank you. I can tell she is going to be a big part of this new, strange, life without you. Another one of your little gifts. Thanks baby.

The rest of the day was spent in therapy. Therapy with your Daddy and than I went off to therapy alone with Sarah. I felt like my head was spinning most of the day. Than I decided that it should feel that way, as I have many hats that I am wearing right now. I am not sure if this is a good or bad thing; but it is where I’m at. You want to hear all of the hats I’m wearing? I’ll tell you.

The Maya Hat- Trying to take care of me. Whatever that means.

The Ronan Hat- Trying to connect and still trying to take care of you. It’s all I want to do.

The Mama Hat- Trying to be a good Mama to your brothers. I’m naturally a good mom, so this is not hard. But it still takes a lot more effort than it used to.

The Wife Hat- Trying to be a wife to your Daddy. Failing.

The Therapy Hat- Sarah, Dr. Rachel, Dr. Joanne, and Dr. Beth with Liam and Quinn. FUCK. That is a lot of therapy, but so necessary.

The Friend Hat- Trying. Failing. I miss my friends.

The Foundation Hat- My busy work. Trying to get everything figured out. I like this hat. It gives me HOPE that I am keeping  you alive; even though you are gone.

The Not Slitting my Wrists Hat- Want to. Everyday. Everyday I survive without doing this is a fucking miracle.

The Grieving Hat- I’m doing this. In my way, alone. Or in the presence of therapists. I’m working hard to do this. I don’t want to stuff away any pain because it will all come back to haunt me later if I do.

So baby. What do you think about all of that? That’s A LOT of stuff. Remember back in the day, when all we had to worry about was naps and grocery shopping? That life does not even seem real anymore. I feel like I’ve been living this life now, forever. What a stupid, spoiled brat I was. I’ve got a lot of making up to do for being such an ignorant human being. I’ve got a lot of work ahead of me. It’s fine, baby. I’m not scared. I know you are going to help me, therefore, I can do anything. Fuck You, Cancer. Right, Ro?

My new friend, Heather, also stopped by for a visit. She is the Queen of random, surprise drive-by’s. I just happened to be home and was so glad to see her face. We sat in the kitchen today and talked for awhile. She is another one of those peeps with such an amazing heart. She always seems to appear when I need  a bit of cheering up. When I need a little kick in the ass to remind me of how strong I am. She told me that she tells someone, at least once a day, that I am going to do for Childhood Cancer, what Lance Armstrong has done for Cancer in general. WOW. What a compliment. Talk about picking a girl up, when she is down. I took a minute to think about what she told me. I started to get overwhelmed, but a calmness washed over me. I think she is right. I think she is right because I have you to fight for and the strength you give me will help me change things, in a drastic way. Everything I used to be scared of, Ro…. no longer exists. I am here, on this earth, to change things for you. Because you know that you did not deserve to die, nor does any other child suffering from Cancer. Somebody has got to take this fucker down. Super Ro to the rescue!!!!! I know we can do this, little man. Heather, knows we can do this. She lit up like a little Christmas Tree when she was telling me this today. It was so stinking adorable. It was so beautiful. It was so you.

Oh, Ro. Nice song pick tonight as I was just getting to end this post. Seriously! That just got you the BIGGEST SMILE! I love you to the moon and back, baby. I hope you are safe. You are so right, this is absolutely not the end.

THE BRAVERY

Tell me
Come on tell me what you can
Even as you wait for death your wiser than I am
Tell me what does it mean to exist
I am not a scientist I must believe there’s more than this
And I can not accept
That everything that’s real
Is only what our eyes can see
And our hands can feel

[chorus]
Not even earth can hold us
Not even life controls us
Not even the ground can keep us down
The memories in my head
Are just as real as the time we spent
You’ll always be close to me
My friend
This is not the end

I see
I can see you’re still afraid
Weathered like the silver moon, on you even fear looks good
I wish, I wish I had some words to give
But all that I can think to say
Is I’ll be with you everyday

[chorus]
Not even earth can hold us
Not even life controls us
Not even the ground can keep us down
The memories in my head
I just realized the time we spent
You’ll always be close to me
My friend
This is not the end

La la la la la
This is not the end
La la la l al la
This is not the end

I don’t care
I don’t care what you believe
As long as you are in my heart
You’re just as real as me
Maybe
Maybe even more
Someone who’s touched so many lives
can never, ever die

[chorus]
Not even earth can hold us
Not even life controls us
Not even the ground can keep us down
The memories in my head
I just realized the time we spent
You always be close to me
My friend
This is not the end

A little seal and a hummingbird

Ronan. It’s only been a week since you left. How can that possibly be? It feels like you left such a long time ago. I think about you all the time. You are never not in my thoughts. I got through another day without you. I don’t know how; but I did. I took Liam and Quinn back to school today. We went in late and I was nervous for them to go back. As we walked in, I explained how some of the kids might ask about you, and I tried to prep them on what to say. I wanted to prepare them as much as possible. They both seemed o.k. I could tell Quinn was more nervous than Liam. Once we got to the classroom, they both seemed fine and their friends were happy to have them back. I left them there feeling like it was their first day of school; my heart was sad but I know normalcy is important for them now. We have such little of that in our life with you being gone. I have to slowly start picking up the pieces and I feel like getting them back to school for the time that they have left will be a good thing. They are such strong little boys. I know you are so proud of them.

After I dropped off Liam and Quinn, I ran some errands with your Nana. It felt weird to be out but I constantly feel the need to be busy. At one point we were at the cash register somewhere and I said out loud,  “I can’t believe he is gone.” I talk to myself all the time now. My hands shake all of the time. I talk to you out loud a lot too. We all tell you goodnight every night. I still feel like you can hear us. I took your Nana to get her tattoo today. She got 3 stars on her foot for you, Liam, and Quinn. It turned out so beautiful. Afterwords, we went to lunch. We were supposed to meet Tricia and Marisa at Wildflower, but I ended up going to the wrong location. My head is still not on straight. Fernanda called while we were sitting in a booth together. I stepped outside to talk to her for a few minutes. I ended up bawling my head off and I kept saying to her that I didn’t understand how your little heart could have just stopped, just like that. I mean it makes no sense at all; but I don’t even understand medically how it happens. How is it possible that you and your little life just stopped? You were so full of life and I will never understand how it was taken away so quickly. Just like that, in a blink of an eye. I’ll never forget when you were first diagnosed and your Daddy and I sat in a little room together and how scared he was. I remember grabbing him and saying, “Woody. If anyone can beat this, it’s him.” I had no doubt in my mind that you would grow up to be a healthy boy. I never in my wildest dreams thought this would have been the outcome. I don’t think anybody really did.

Once I returned home, I kept myself busy with stupid chores. I am putting together a hard core plan about how I am going to clean our already spotless house. How maybe if I scrub hard enough, it will pass the time more quickly. I’ve decided I will tackle the closet tomorrow. I know what this process is all about. I have already decided I am going clean every inch of this house until the only thing left to do is your room. The room that I walk past as little as possible during the days but I let me eyes drift over to your toys as I am expecting to see you in there playing. I am so scared of your room. But I know I have to go in there eventually. I will, after everything else is perfectly in place. Until then, I just simply cannot. My stomach instantly gets sick just thinking about it. I just need more time.

After Liam and Quinn came home from school, we had Luke and Lily over. We walked down to Uncle Jays and went swimming. Wesley and Laely came too. It was good for me to be around them today. I thought it was going to be hard, but there sweet souls soothed me. Well, maybe not soothed me as I don’t think there is anything that can do that right now. But it didn’t feel awful for me to be around them. Baby steps, baby. Baby steps.

Everyone around me is stumbling. I wish I could be blind to it but I’m not. Watching Liam, Quinn, and your Daddy is the hardest for me to see. Last night, after your service we were all walking out of The Desert Botanical Gardens together. There was a wishing fountain right before the parking lot. We all stopped and Liam threw in a coin. He said he wished for you to come back. I honestly thought I was going to crumble on the spot but Quinn distracted me by trying to steal the money out of the fountain. I gave him a quick talking to about how he couldn’t take the money out of the fountain because it was other people’s wishes. He then made some snarky comment about how wishes don’t come true. Fuck. I dug deep down and told him, that they indeed do come true, but I didn’t have the energy to finish the bullshit pep talk. How do you try to convince a 7-year-old who just sat though his baby brothers memorial service that by throwing a fucking penny in a fountain that what they wish for will come true. The truth is, you don’t. And if you do, you’re a better person than me. Or maybe just a better bullshitter:)

Your daddy asked me tonight when I was going to break. Or if I was just going to hold this all in until I finally explode. We are not in sync with our grieving process at all. I wonder, if this is normal? Am I holding it all together so he can grieve and I can be strong for him? Then when it is my turn, he will be able to be strong for me? Part of me thinks so. If we were both dealing with this, the same way, at the same time….. I don’t know how we would go on for Liam and Quinn. Don’t get me wrong. I have my moments when I sob like a baby. But I try my hardest to do this when I’m not around anyone else. I save it for the moments that I know you are closest to me and when I look to you for comfort. You are so good at comforting me, Ro. You still give me so much strength.

I have two pictures I am posting tonight. One, was taken by the insanely talented Emily Carroll. She came to capture some images from Ronan’s service last night. This hummingbird kept appearing in her camera. Do you know what they say about hummingbirds? I do. My dad taught me about he importance of Hummingbirds. They are special and the fact that this little guy was fluttering about during Ronan’s service.. well that speaks volumes in itself. Thanks for letting me know you were there, Ronan. And that you are o.k. Thank you for capturing this moment, Emily.

It is not commonly known that the fluttering wings of the hummingbird move in the pattern of an infinity symbol – further solidifying their symbolism of eternity, continuity, and infinity.

By observing the Hummingbird, we see they are seemingly tireless. Always actively seeking the sweetest nectar, they remind us to forever seek out the good in life and the beauty in each day.

Amazing migrators, some Hummingbirds are known to wing their way as far as 2000 miles to reach their destination. This quality reminds us to be persistent in the persuit of our dreams, and adopt the tenacity of the Hummingbird in our lives.

The Hummingbird animal totem is a messenger of hope and jubilation.

Hummingbird Animal Totems offer attributes like:

  • energy
  • vitality
  • joy
  • renewal
  • sincerity
  • healing
  • persistence
  • peace
  • infinity
  • agility
  • playfulness
  • loyalty
  • affection
 Need I say more? I don’t think so. The little signs are everywhere.
The last picture I am going to leave you with is one I took on my iPhone today while my mom was getting her tattoo done. I’m not crazy…. well at least not yet. Take a look at the white image where my mom is getting her ink done. I swear to god it looks like a little seal. The nose pointed to one of her stars, the flippers closer to her toes. Does anybody else see that??!!
I seriously think it was little Ronan’s spirit sitting with us today. After seeing this tonight on my camera, I am sure of it. I talked to him the entire day in my head. He never leaves my side. Thank you Ronan, for guiding me today. I know you know I am struggling with some things and how I am trying to figure out the path I am meant to take. You gave me a lot of answers today. I am going to follow your lead and listen to my heart and you. We are going to change the world baby. We are going to save others lives by finding a cure for this. I know it is our destiny. It was what we were meant to do in life. To help others, inspire others, teach others about what is REALLY important in life. Just to be better people in general. Let’s make this world a better place…. let’s find a cure for this Neuroblastoma bullshit by educating people and getting funding in place. I’m so going to be all over Yoplait soon. I am thinking they are my first target. If they can do pink ribbons for all of October on the top on their lids, the why the fuck can’t they do yellow for all of September. Mama’s mad. Mama’s on a mission. Somebody emailed me today and said they were ready to stand behind, “Maya’s Mafia.” That made me laugh out loud. I love it. I hope you are all game for this. If you stick behind my son and what we are about to do…. be ready for the most fulfilling journey of your life. Ronan had it all figured out by the almost the age of 4. I took very careful notes so I know all of his secrets, all of his tricks, and I now know what he was meant to do in this world. Just because he was so sickly robbed of his little life does not mean he cannot fulfill his dreams. I being his mama, his biggest fan, will get these things done for him. I’ll get by with a little help from my friends and all of his Rockstar Fans. I promise you. Amazing things are to come. Ronan was my gift that I am sharing with all of you and I am so thankful to do so. I know how much you all believe in him and know that he was meant to change the world. Start by helping me out anyway you can. Just getting his story out is the first step. This is going to take some time, but I want everyone to know about the most beautiful, bravest little boy, who could melt you with just one of his famous winks. FUCK YOU CANCER. You fucked up big time and you owe it to me that something good come out of this. We will start by raising awareness for your stupid ass disease that I had never in my life had heard of because I was uneducated and cocky. I’m sorry that ONLY 800 kids a year are diagnosed with this. 800 kids a year is more than plenty to fight for. So fuck you Neuroblastoma and your lack of education. I am about to blow your shit out of the water. You took my baby; so I’m not going to stop until somebody finally takes you, mother fucker.
Sooooooooo…… I think I got a little off track. Um yeah. It’s been way too long since I’ve said Fuck on my blog so I had to get a few of those out. And Ronan, you’re such a little badass now that you don’t even need earmuffs anymore buddy! I think you’ve earned your right to hear those words. I love you Ronan. We all love you so much. I told Quinn to dream about you tonight. I hope you visit him and you two play your little hearts out. Sweet dreams Ro baby. Sweet dreams my lovely friends. Hope your day tomorrow is full of all the little things my Ronan has left behind.
xoxo

Not a kissing day

I sat here at The Ryan House all day with Ronan, rubbing his little leg that is hurting him so badly. We had a lot of visitors in and out. Ronan slept most of the day while I had the chance to sit in our room and see a lot of friends and family. I was hardly awake when Niki came by. She sat by me on my bed and held me while I sobbed in her arms as I knew I would the minute I saw here. She brings out the raw emotion in me for some reason. I held on to her and stroked her insanely gorgeous red, wavy hair that I am so in love with. After I let go, she sat by me and rubbed my back and I think I fell asleep again. Her visit was so peaceful. I had lots of other visitors…. Melissa, Patty, Sarah, Auntie Karen, my Aunt Sheri, my sweet cousin, Shannon, my mom, Jim, Liz, Olivia, Luke, Heidi, Stacy, Fernanda, Tricia, Tiffany, Dr. Maze, Katie, Addison, Lane, and I think a few more of the cousins. It was busy here but Ronan didn’t seem to mind.

I spent a lot of the day, curled up with Ronan, thinking, thinking, thinking. It’s not a fun place to be right now. Woody and I met with a doctor today about getting Ronan in over at St. Joe’s tomorrow to do radiation on his legs. It will be  a one time treatment, and we are hoping it will subside his pain. The pain medication he is on is just not cutting it. Woody and I both decided he can handle it as we know how strong he is on the inside. It will be fast and painless and we are praying it will give him a little relief. The pain is swallowing him whole as he cannot even move out of bed and even me carrying him to the bathroom is torture to my little guy. I cannot just stand back and do nothing if there is a chance this may help him.

Woody has also been in contact with Dr. Sholler from Vermont. She has a trial that has opened up and I am not going to say much as of now; but if we can get Ronan comfortable enough with his pain, we are talking about making the trip out to San Diego to start this 5 day treatment. We have sat all day and weighed our options. I get that my first priority is keeping Ronan comfortable, peaceful, and happy. But as of now, he is none of those things. I am not foolish and I am not unrealistic. My child is dying right before my very eyes. I do believe in the power of miracles, but our miracle is not going to come in the form of him, lying in this bed, while I sit back and do nothing. I know that God is not going to open up the heavens above and heal my baby. This cancer is going to eat his little body alive and as of now, I am just sitting back and watching that happen. That to me, is not acceptable. I am loving him with everything I have; but if someone out there is willing to take a chance on Ronan, I believe I have to take it. His miracle is going to come in the form of medicine combined with the power of prayers. But prayers alone are not going to save Ronan.

Woody and I have not made any decisions as of yet. Obviously we have to weigh the pros and cons very carefully. But as I said in the beginning, I am not going down without a fight and neither is Ronan. It is just not in our nature. By sitting here and doing nothing, I feel like we are not fighting if there is even the smallest chance that this treatment could help Ronan in any way possible. If this doctor ends up telling us no, than we will accept the time left we have with Ronan. If I know in my heart that Ronan is ready to give up, then I will not push him. I know he is not there yet… I know the soul and spirit of my child and he is not ready to go down so easily. How can I possibly give up on that if there is the slightest ray of hope? It is eating me alive just sitting here, and doing nothing. Loving him is not enough if I can still be fighting for him and his life. I cannot let him go yet. I still feel in my heart that it is not his time.

So, the word inhumane has come up a couple times tonight. I’ve decided it’s a word that should not be associated with parents who are fighting for the life of their child with all they have. I believe to do otherwise is inhumane. We only want what is best for our son and we are struggling to figure it out. We as parents do know that we have to know in our hearts that we have done everything possible for Ronan. Even if the outcome turns out the same. So, as parents we will take the next few days, to watch Ronan carefully and make the decision that we feel is best for our family. If we do decide that enough is enough, it will be because Ronan has led us to that decision. This is still his journey, his life, and we will respect that. But it will not be without exhausting every possibility. We do not want to put him though anymore, but how do you give up when there still may be a chance???? I don’t think that you do. I know my child better than anyone, and today when I tried to kiss him and he yelled at me that “It’s not kissing day!” I knew right then and there that his little feisty spirit still exists. It’s my job as a mom and as the adult to help Ronan fight for I know what is in his soul. He does not want to leave us; he does not want to be anywhere else. We deserve our son, Liam and Quinn deserve their brother, and I am not throwing in the towel. I know this disease well enough now to know that things can change in an instant. I just pray that they change in an instant for the better and not for the worse for us.

We will start off tomorrow of a CT scan of Ronan’s little body, that is so badly beaten up and bruised. We will then do his RT without his anesthesia. I talked to him about it tonight and he said he will do it and make Dr. Maze proud and not need any sleepy medicine. The only thing I worry about is keeping him comfortable enough. I know he can do it, he will push through the pain if he has to. This is something no child should ever have to go through and I am beyond sick about it. Looking at Ronan’s banged up body makes me shutter. Listening to the sounds of his screams from the pain is something I will never be able to get out of my head. I swear to god on my life I will fucking live long enough to see a cure for this awful disease. I swear to god I will do whatever I can to help find a cure so no child has to suffer the way I have had to watch my son suffer. No child deserves this pain and no parent deserves this heartbreak.

That’s all for tonight my peeps. Sweet dreams to you all. G’nite my Fernanda. I miss you so much already.

xoxo

Music to my ears

I’m feeling peaceful tonight. Today, was a very good day in terms of victories for Ronan. It started off with his little words this morning, “Mom, I have to poop.” Praise the freaking lord. It’s been 5 days of him not pooping and we have been giving him Miralax around the clock. I full on had a pooping party dance after my little man did his job. Victory! He was up most of the day, although still in a lot of pain. This morning, our sweet, “A,” from the clinic came by. She sat with us for a while and Ronan normally kicks everyone out, but he was so calm while she was here. He connects with her. Playroom Kathy from PCH also came by with so many Star Wars toys and the most beautiful Star Wars quilt which I am assuming she made. Kathy, it is so gorgeous. Ronan has been playing with his Star Wars guys on it all day. Love you so much. Thank you for sharing your smile with me today. I’m only sorry Ro missed it due to him sleeping. My sweet friend, Kristen, Kati, and Olivia came by as well. It was good to see them all. The usual peeps were here too. My mom, Jim, Luke, Heidi, Liam, Mimi, Papa, Auntie Karen, Trish, Stacy, Fernanda, Gay, and Pam. Christy and Heidi stopped by too with a ton of food. I’m feeling a little braver about seeing people so I ventured outside of our room. Ronan is so loved. I’ve never seen so much love for one little boy in my entire life. It makes me feel so happy.

We have been talking to Dr. Sholler about some other treatment options. I told you we are exhausting anything possible. We are talking about doing radiation on his leg. I’m not giving up yet if there is even the smallest amount of hope. I won’t travel far with him, but if this doctor is willing to see us in San Diego, we are talking about making the trip. We may start radiation tomorrow on his leg. Anything to help him with his pain. We are not committing to anything yet, as we know what the odds are. But we are not willing to close the door just yet. Ronan wants to be here with us and we are going to continue to fight hard for him until he lets us know otherwise. I will know, as his mama, when it is time to let go. It’s not time yet.

I got out for a bit tonight. I was nervous about it but Woody insisted it was fine. I had the chance to call back a couple of people. My angel, Charisma, is flying in this weekend for a quick visit even though she is bombarded with auditions. YAY FOR THAT!!!! Both her coming, and the auditions that are coming her way. I cannot wait to see her and am so grateful that she knows how much it means to me to see her. I called back my other dear friend, Susie, who lives in Colorado. All I had to do was say the words and she is now coming in for a quick visit this weekend as well. I don’t know how much time we have left with Ronan. Could be days, weeks, months….. praying for forever. Regardless, it means a lot to me to have those two see him. It will be good for me as well. It felt good to be out, tonight, breathing in the fresh air, as I sat outside with my dear friend who brings me much peace and comfort. I even managed to eat a taco for him.

I came back to the Ryan house and Ronan has just finished his platelet transfusion. Luke and Quinn were in the room with him and we all sat around together while Luke played music from my iPad for Ronan. Luke was being his normal, very animated self, and was singing and dancing out loud. I could not believe my ears when I heard giggles coming from Ronan. He has not laughed in at least a week. It was all thanks to Luke. I about started bawling. My baby boy is still in there. As much as he is hurting, he so badly wants to come back to us. I heard it in his laugh tonight. I will never forget that moment. Luke has been such a gift to us during this time. He brings our family so much happiness, especially Ronan. He is sleeping over at The Ryan House tonight, as well as the twins. We all need to be together as much as possible.

I’m tired tonight and as I said, I’m feeling somewhat peaceful. I’m going to try to get a little bit of sleep before Dr. Maze and everyone else kicks my ass. I’m not taking my sleeping medicine anymore, but tonight I feel like I can maybe sleep without them.

Somebody posted me this comment on my blog tonight. Loved it and wanted to share. Thank you, friend whom I do not know.

I read your latest blog “the next person that tells me…” I just want to say Sorry for those of us that are inconsiderate with our words and try to say things to make us feel better before we think of how they may affect you. I share your blogs on my facebook and ask my friends to pray for you. I wear a bracelet daily so when I see it I remember to pray for you often. My heart aches for you. My sister recently lost her granddaughter and posted this comment about people speaking, I thought you would appreciate it. She added your comment to her previous post to reiterate the impact of commenting before we think about it.

Before you speak…
by Connie Phelan Iddings on Tuesday, May 3, 2011 at 12:00pm
“Everything happens for a reason.You were given this because you were strong enough to handle this. God has a greater plan for your child. Your child wants to go home, where he belongs in Heaven, so just let him go. At least you had as long as you did with her and you have other grandchildren, at least you can be grateful for that. You’ll be a better, stronger person because of all of this. ”

These are comments given to a Mother whose child is battling for his life and to other Mother’s and Grandmother’s who have lost their babies.

Think about it. Seriously. Stop and think about it. To a Mom and to a Grandma, there simply does not exist any justifiable “reason” for our babies to suffer and die.

I am sure that God is taking care of our babes, but when you say God had a better plan, what exactly are you implying? That we somehow didn’t deserve our children-our parenting plan didn’t suffice while millions of others did? That God handpicked our babies to pluck out of our arms because he had a better plan? God is not cruel. His plan is to bless and not to harm us. (Jeremiah 29:11) I’m pretty sure it had very little to do with “God’s perfect plan.” I like how William P. Young author of The Shack puts it,

“Just because I work incredible good out of unspeakable tragedies doesn’t mean I orchestrate the tragedies. Don’t
ever assume that my using something means I caused it or that I need it to accomplish my purposes. That will only lead you to false notions about me. Grace doesn’t depend on suffering to exist, but where there is suffering you will find grace in many facets and colors.”

Never tell a parent their child is better off or tell a mother that her child wanted to leave her even to go to heaven, it’s like sticking a knife in her already broken heart. We don’t want our children to suffer. No good mother does. But, to add guilt to her grief by suggesting she is being selfish for going to any and every length to help her child survive and for wanting to hold onto her child as long as absolutely possible is unforgivable.

Don’t think for one moment that we aren’t eternally grateful for every millisecond of time we were given. Whether it is a few moments, or decades it matter not, our baby is now gone. We are grateful for all the yesterdays but we still want the tomorrow’s. We want our children with us today, right now and would give absolutely anything to have them.

Don’t get us wrong, we love and are grateful for all our children and grandchildren that are still with us, as we’ll also be for those we’ll be blessed with in the future, but that does not diminish our love or desire for those lost.

Please never, ever tell a grieving Parent or Grandparent that they will be stronger, better people because of the death of their child. No one wants to benefit from the death of a child. We know you mean well, but it plants thoughts in our mind like, “What if I was a stronger and better person to begin with? Would my baby have been spared?” Is that your intention? I highly doubt it.

Before you speak, pause to hug us and think. Tell us you are sorry. Let us cry and talk as much and as often about our baby without being made to feel guilty that you feel uncomfortable. Please don’t tell us that you think it is time we move on, leave that to the well-trained therapists. Our grief may remind you that we live in a world where children die before they are suppose to; a fact you may want to forget, but we don’t want anyone to forget our babies. We also don’t want anyone else to suffer needlessly if there is anything we can do about it. Therefore, we will keep talking about our children and about their death if we think it will help someone. It is important for everyone that we do.

We know it is difficult. Believe me, we know! We understand most people have no idea what to say or that some things are far more hurtful to say than they ever realized. I tell you now so that you will know. I, myself most likely said these very statements in an attempt to comfort others in their grief and offer answers for questions we all have, that there are simply no answers to-at least for now.

I close with a statement from a grieving Mother, “I love you all as always, as long as you don’t say any of those idiotic things…to me. Even if you think them, please don’t say them. They don’t give me strength at all.”

Strength is what we need and what we need more than all is your unconditional love. Before you speak, pause and just give us your love.

God Bless, my prayers are with you continually

G’nite to you all. Ronan and I love you to the moon and back.

xoxo

I’m kinda liking this Philly place

First of all, the RMH here blows New Yorks out of the water. It is straight out of the movie “Benjamin Button.” Old, Victorian, and beautiful. The people who work here are so friendly, helpful and nice. Our room is not hospital sterile at all. It is very cozy and has two of the most comfortable queen sized beds. Holla for that!! No more sharing a tiny twin with Ro. I know we are going to get some good sleep tonight. Ronan has been in a really good mood. He took a bath and played with his Star Wars guys. I unpacked everything and thought to myself how easy it is to make anywhere we stay, a home, as long as we have a few essentials and each other. My friend, Stacy, seriously packed all of my stuff and Ronan’s as well. Wow. She should be a professional packer. She did a better job than I could have done. I told her I didn’t care what I took, and that less was better. I learned my lesson after the New York fiasco. Not making that mistake again. Woody went out and got the essentials. My coconut water, some regular water, Gatorade, and his contact lens stuff. I unpacked all of his things and set up all of his cords for his electronic devices. Felt good to do this for him tonight. He often gets lost in the shuffle and does so not deserve to be. It makes me happy when I can do the simplest things like unpack his bags. He always is so appreciative.

I sent my Mr. Sparkly Eyes a text tonight and just told him that I wasn’t scared yet because I know Ro can do this. His response was, “He will with your love.” I’ve thought this all along. I have such a bond and love for this child that I can get him through this hurdle and back to the other side. I just know it in my heart.

I was bombarded with so many emails today but I wanted to share my favorite one. It’s from my friend, Diane, Ed’s wife. They are the most amazing family. Her email brought me to tears. Thanks Di; you are such a wonderful woman.

Dear Maya – The Strongest Mom in the World!,

I think of you and Ronan every moment of the day.   From your writing and seeing you and Ronan together it is obvious you share a love that is so strong that only the two of you will ever know forever in your hearts.  As I read your posts I feel, and uniquely understand, your pain towards the path and people you are forced to encounter to preserve your special love – mother & son.   Along with all of your family and friends I wish that I could ease that pain, but I also know that will be impossible until Ronan is safe.

I believe that Fate, Faith, and Love are amazing guides.   Fate brings you to places that you never thought you could possible handle, and faith brings you back again from the edge.   Through fate and the unbelievable journey of life – I believe, you encounter the most amazing people, and live through the most difficult of disappointments.   I am so sorry that your MSK experience broke your spirit (however so briefly) and challenged Ronan’s path.  I do believe that it is all a part of each step to make Ronan happy and well.  What I have found from our own journey, is that Doctors are mere humans with many faults, and once in a while bigger brains.   Science and the human body fails us everyday, but we are sometimes shaken more by the failure of people and their inability to understand and empathize.   Dr. K – a scared coward – yes, but believe me…. not worth your energy, time and anger.   When you read back to your posts about your experience in NYC I trust and pray that someday it will be a memory forever etched in your mind as an adventure.  I can only hope you will forget about the doctors, and remember the sanctuary of the RMH, food, Dylan’s candy, FAO, basketball, friends and the comfort you felt in the city.   It is those memories that make NYC a place of peace for Ed & I.  Jack’s treatment and science failed us at MSK, but I left there knowing I would, and could do anything to fight for him.   You have done that!!!!  You are moving onto CHOP, maybe DC, VT, and always home to PCH and your family… but you have proven to yourself and Ronan that you have the ability too endure anything for love!!!

I always felt as if Jack was a gift given just to me.   His amazing life set my path and gave me forever strength.   He showed me what love was really all about.  He made me a better mother to Aidan & TJ, a fearless cancer patient, a devoted wife, a more understanding friend, a grateful daughter, a thankful sibling and I hope in some way a better person.     I know in my heart, you both will win!  You have already won by finding the strength to fight for each other.    You will continue to win as each path, hospital, doctor, nurse, treatment, setback, victory, adventure, gift, and smile, will lead you to an answer, life, happiness and peace.   My angel is watching over your angel on earth!!!!

All my love and respect,

Dianne

I’m super tired tonight and we are going to CHOP at 11 so it’s time to get some rest. Despite all of this travel and being away from home, Ronan is in a great mood. Tonight he said to me, “Mom, you’re so cute. I love you.” I always know when he says this to me it’s because he is happy. At this point, that is the most important thing to me. Him being happy will get us through this. I am going to work my ass off to keep him this way through this next part of his journey. Happy and pain free are my 2 biggest goals right now. I cannot look any further ahead than that.
G’nite all of you sweet people. Thank you for all of your supportive and kind words. You are all the best family/friends/fans we could have ever asked for. I wouldn’t be in such a good place right now if it weren’t for all of you. Please never forget that. As much as you all wish you could help more, you are helping me in ways that you will never understand. You make this road easier to travel. That is one of the hugest gifts I could ever ask for. Thank you for loving us so much.

Sweetest dreams!

xoxo

I’m sorry my baby boy

 

Not a lot to report today. The day was spent with Ronan waking up bright and early in pain; therefore, he was pissed at the world. We spent the majority of the day playing in his bed and testing out what the correct dosage of morphine for him is as they decreased it last night due to his little falling asleep quickly incident. We did his second day of chemo, and third day of radiation and are still inpatient at Sloan. They are thinking we will be able to be discharged tomorrow and just do the rest of his chemo outpatient. I’m not sure how they will have us handle his pain issue though, as he is getting morphine through one of his broviac lines. We’ll discuss that tomorrow with Dr. Modak. Radiation was a little trickier today because Ronan was in the middle of sleeping when they came to take us down to the second floor. He was mad that he was woken up and crying when it was time for his radiation to start. I got him to settle down and our new friend, Con, who has been doing Ronan’s radiation since day one, started the procedure. It only took a few minutes again and soon we were back up in our room. Ronan fell asleep on our wheelchair ride up to our room and I transferred him into his bed.

While he was sleeping, I snuck out to go back to the RMH to shower, change, clean up our room, and re pack our bags. I had the chance to talk to Tricia on my walk back to Sloan. That felt good. I told her the highlight of my day was getting to shave my legs. Ahhh…. the little things now. They sure do mean a lot. Ro hadn’t napped long while I was gone and fell back asleep right before I returned. He woke up a little while ago and was in a lot of pain again. I called the nurse in and asked her to see if we could get his dose of morphine back up to what it was yesterday which was .3. The on call doctor came in to find a very unhappy boy, so she said that was fine. He is back asleep again and I am hoping he continues to sleep painlessly though the night.

I am beyond tired and am glad that tomorrow is Monday. I love having Woody here with me, but I think he needs a distraction from all that is going on. I’m so used to this hospital life; he really isn’t. Tomorrow will be good for him as he has a lot of work to catch up on. I’m kicking him out of here so he can go back to RMH to work. I will tackle Ronan and all that we have going on. I know that if I really need Woody, that he is only a few minutes away.

I am missing my friends and family back home a lot, but the time here with just the three of us has been good. It has given me some time with Woody that I have needed. We do really well in this city together. It is a special place for us; it is where he brought me for my 30th birthday and we had the best time. Lots of good memories together in this city. I know we are going to make more though all of this… once we get Ronan back on track we will take full advantage of being here and enjoying it with Ronan. We just need to get this pain under control. It’s the worst seeing him this way as I’m sure I’ve told you all a thousand times before. Just like I’ve told Ronan a thousand times since his diagnoses, how sorry I am. I found myself saying this over and over today as he cried about his little arm. I’m so sorry, Ro baby. I wish this were me and not you. I wish I could feel the pain in my arm, and not you. I feel it in my heart, every second of the day though. I am never without your pain and I wouldn’t have it any other way. I will hurt every second of the day with you until you are better.

That’s all for tonight my lovely friends. Thanks for checking in on us. Sweetest dreams.

xoxo

Not following the yellow brick road

HAPPY VALENTINE’S DAY! RO, MAMA, AND NANA WENT FOR PEDICURES!!!!

I wish I could tell you all that I have not updated my blog for a few days because I have been so busy soaking up all of my precious time with my amazing family. That we have had such a fun filled, fantastic weekend full of no worries whatsoever. But, that is not the case. The weekend started out that way. We left PCH on Friday happy as clams, ready for transplant and for a great weekend. We took Ronan on Saturday to the twins’ basketball game and had a wonderful time. Afterwords, I came home with Ro and my mom and we were playing outside in the backyard enjoying the sunshine and warmth of the day. 30 minutes later Woody arrived, came storming outside, demanding that he needed to have a serious conversation with me and needed to have it now. My stomach instantly dropped, my heart fell to the floor and I knew something was wrong. He said he had just gotten off a lengthy phone call with Dr. Eshun and they had done the randomization for one stem cell transplant or two. We were randomized for one. I knew this before Woody even told me. Woody had asked me 3 days prior to this if I thought we were getting one transplant or two. I looked him dead in the eye and said, “One.” He goes, “How do you know?” I told him I just had a feeling. This is not the news we were hoping for. My head started spinning and it was as if we were right back to where we started, at day one of Ronan’s diagnoses. Although Ronan has made great progress, Woody and I have done enough research to know that not enough of his disease is gone for us to go ahead with just one transplant. This cancer is too strong. I spent all of Saturday crying my eyes out, trying to wrap my head around all of this, and Woody went straight into Woody mode and armed himself with as much information as possible as far as other alternatives. He figured out who we needed to call today to get answers from. He has spoken with several doctors from New York, San Francisco, Chicago, and Atlanta. Time is not on our side and time is not our friend.

The one thing that every doctor that Woody has talked to, cannot figure out is why is Ronan’s Bone scan is negative, his Bone Marrow clean, his VMA (urine test) is negative, yet he has so many spots left on the MIBG scan. Dr. Kusher believes that the Neuroblastoma, is still in Ronan’s bone marrow, not his bones. We are at a crossroads with what to do and are looking at basically two different options. As of now, we are deciding between an MIBG therapy in San Francisco or heading to Sloan Kettering to start 3F8. As soon as we heard that  Ronan had only been randomized for one stem cell transplant, we pulled him off the COG study we have had him on. There is no point in following their rules anymore. Although Ronan’s path is not clear, I have no doubt that we will find our way through this maze. I keep telling myself that Ronan is so unique and such a special little boy, that he was not meant to follow the yellow brick road on this journey. He was meant to make his own road full of yellow, purple, red, green and every other color you can possibly think of. Maybe this is a blessing in disguise because Ronan was not meant to have a transplant at all as it wasn’t the right answer. I have felt uneasy about his whole transplant thing from the beginning. I know what my heart and gut are telling me what the right answer is… but I think it is going to be a day or two until the answer is 100% clear. Woody and I are doing everything possible, with the help of my dear Fernanda who has been a godsend, to find out what all of our options are. We are still meeting with our transplant doctor tomorrow, Dr. Adams, but we will not be starting transplant on Thursday like we had originally planned. Just goes to show you how tricky this disease is and you really can’t ever prepare for anything. Talk about having the rug pulled out from underneath you. I told you Ronan was a rule breaker…. I really believe he was not meant to follow this protocol…. he is going to make his own.

I was a mess this weekend but tried to go on with some normal things we had planned. On Saturday night, Woody and I went over to Tricia and Max’s house with our friends, Danielle and Jay. We had fun, but I told Trish the next day, you know your in a bad place when not even Danielle’s toxic margaritas can mask your pain. We came home from Tricia’s around 1 a.m. and I tossed and turned the entire night. On Sunday, I had a dinner planned with some of my girlfriends and I refused to cancel. I joined Jen, Stacy, Jocelyn, Fernanda, Gay, Heidi, Bethany, Shelby, and Melissa, for a very special dinner that was supposed to be my “sending off” into isolation, but turned out to be, o.k…..here is the new news and what we are facing…now what the fuck are we supposed to do??  I tried my best to enjoy myself and when you are surround by the most beautiful women in the world, it is impossible to not enjoy yourself. I had to let go just a little bit and I have to trust in this new plan that is going to present itself. I texted my Mr. Sparkly eyes today and told him that decisions are begin made for us and we just have to trust. He believes this too, there is something bigger than us guiding us in the direction we need to go. I truly believe this with all of my heart.

What I am asking from all of you is just your continued prayers and love and your belief that we will make the right decision for our baby boy. Whatever path we choose, or whatever path chooses us, there is no looking back. We refuse to second guess anything we have done or are going to do. To live like that is foolish and we are very aware of that.

Hopefully by tomorrow, we will have a clearer vision of what we are doing as we need to get Ronan started on his next treatment as soon as possible. As far as Ronan goes, he could not be happier. He has been loving being at home with his brothers and playing outside. He looks amazing and his spirits could not be better. I am reminded everyday by looking at him what a gift he is as well as Liam, Quinn, and Woody. I am such a blessed mama and wife.

Please, no tears for us yet. Trust me, I’ve done enough crying the past few days for each and every one of you. This is a blessing in disguise. It HAS to be.

Bone scans results…. kind of.

We started off this morning with Ronan’s Audiology test. It went alright… but we were not able to complete the test due to Ronan’s lack of cooperation. He was able to get through some of it in which the Doctor played high frequency sounds and Ronan would put a dinosaur into a bucket when he heard the sound. He did pretty well, but the Doctor is suspecting Ronan has a bit of high-pitched hearing loss. He is not confirming anything as of now. We are supposed to go back Friday to see if we can finish up the test. I refuse to believe Ronan has hearing loss… I don’t know why because it is very common side effect after going through so much chemo. Actually, I do know why. It’s because Ronan is different and is going to overcome any obstacle that comes his way. So what if he didn’t put the dinosaur in the bucket the second the high-pitched sound came on. He’s tired, mad, and sick of people testing, poking, and prodding at him. I wouldn’t corporate either.

After the Audiology test, we headed over to check in for Ronan’s scans. While waiting, I noticed a little girl who looked familiar to me in the waiting room. I have heard about her since Ronan was diagnosed, but have never met her. I’ve been on her website though so I knew the little girl was Ava. I went up to her mom, Chrisie, and asked if she was Ava’s mom and she said she was. I introduced myself and she knew who I was because I had emailed her awhile back. I thanked her for helping me out with my questions and we were able to update each other on both of our kids. I met Ava’s Grandmother and her Dad as well. They look like the nicest family in the world. What Ava is going through is beyond heartbreaking but she seems like a very strong little girl. All of Ava’s treatments are done at Sloan Kettering, even though they live here. Ava was here for scans today so please keep her in your prayers as well. Here is her website if you would like to visit it: www.caringbridge.org/visit/avaholder. Ava’s Neuroblastoma has relapsed twice, but she is still here and still fighting hard. I will scream and very loud, “FUCK YOU CANCER!!!!!!” for Ava. Makes me so angry. I just wanted to wrap my arms around her entire family while they were waiting for Ava to come out of Anesthesia. I am so happy I had the pleasure of meeting them today. What are the odds really? They are never at PCH and just happened to be on the same day I was there with Ro. It was meant to be. I feel so blessed to have finally met them and sweet little Ava. She is a little spitfire just like Ro 🙂

As we waited for Dr. Maze to come and get us for Ronan’s Anesthesia, he fell asleep in my arms. I sat and watched him sleep so peacefully. I took that time to think about what a long way he has come since first being diagnosed. I found myself in a comfortable state of mind full of peace and quiet. I sat with him in the dark and prayed for his scans to come back with the results we are hoping to see. I felt a wave of warmth in my heart wash over me because I felt, once again, that Ronan is going to be o.k. He is going to beat this and go on to live a normal, happy, long life.

Dr. Maze arrived and we were taken back to the room where they were getting ready to do the bone marrow procedure. He let me hold Ronan as he always does while he gave him the Propofol to go to sleep. I held him and watched him get sleepy and listened to him cry out, “Mama, mama, mama,” for me. He doesn’t like the way the sleepy medicine makes him feel. I told him I loved him and would see him soon and set him down on the bed. I gathered up my things, took one look back at my baby, and Dr. Maze yelled at me to go and eat something. I had to laugh to myself because at the beginning of all of this, Dr. Maze was so proper and reassuring. Now he knows me so well and knows that  I am so used to all of this that he is comfortable barking orders at me to eat something. Gave me just the chuckle I needed to get out of there without even tearing up like I normally do.  Woody met me at the cafeteria and I managed to eat a little salad, but pretty much just sucked down a giant Coke instead. An appetite is something that I am still having a hard time with, especially on scan days.

After Woody left, I sat in the waiting room and waited for Dr. Maze to come and get me. I tore through the piles of bills that I needed to get paid and the next thing I knew, it was time to get Ro. He woke up groggy and grumpy like he always does. Dr. Maze went back and looked at the scans for me and came back telling me as much as he could. Our Doctor, Dr. Eshun, is in New York City and will not be back to read the results for us until next week. Dr. Wood, who has followed Ronan since the beginning is here and I sent Dr. Maze a text asking him to please have Dr. Wood call us to go over the scans because next week is way too long to wait. I got a phone call from “A” tonight instead. It was hard for me to talk to her, as I had Ronan screaming in the background and had to run outside to even hear her talk. She said she could go over the results from the bone marrow and bone scan for me in a very limited way. As she put it, in her medical terms…. she told me that there was “No focal discreet abnormalities in the bones anymore.” Um… what?? She may as well have been speaking another language. I couldn’t think of what questions to ask, as I was distracted by Ronan and my nerves were a wreck. I said to her, “I have no idea what that means, but is that a good thing?” She said indeed it was a very good thing and that is just what they would want to see. She told me Dr. Wood would call us tomorrow or Friday to go over what exactly this means and to discuss things further in detail after they do the MRI, CT, Pet Scan tomorrow. Those scans will tell us in more detail what is going on now. All I know is “A” was not alarmed about anything and that alone will help me to sleep a little bit better tonight. I will let you all know the “formal” results when we get them, but as of now, there is nothing to be alarmed about. The treatment we are doing is working and that in itself is a huge victory in its own right.

We are all exhausted tonight and Ronan has another big day of scans tomorrow so I am going to try to get some sleep. Please continue to send your strength and love his way. His diagnoses has been beyond devastating to us, but the way he continues to beat all of the odds is beyond inspiring. He fills me with such hope and love every second of the day and it is the love that I have for him that will get all of us through this.

G’nite and sweetest dreams to all of you.

xoxo

An old soul

Ronan had his clinic visit this morning. His levels have dropped just as we were expecting. We are so used to this chemo thing now that we know where his counts will be. What I didn’t expect wash his platelet counts to be so low. They were 10,000 today. WHAT?!?! 10,000 and not a bloody nose in sight? How is that possible? Since we started this chemo journey, anytime Ronan’s platelets drop lower than 20,000-30,000 we are guaranteed that he has the dreaded bloody noses that we cannot control. I told “A” today that maybe it’s due to having the tumor out of Ro. She smiled and I know she doesn’t think there is any correlation between the two, but I am going with what I have been saying all along…. He really is a brand new boy. He was so sweet as we were waiting at the clinic today. He sat and talked to me about all of the nurses who take care of him. As “A” walked by, he goes, “She’s so nice, Mom.” The he told me how much he loved Sharon and Kristin. He is so full of love today and is just so grateful, even though he is feeling so crummy. His ANC is at 60… which means his immune system is almost wiped out. I’m expecting it to hit 0 tomorrow. We will have to keep a close eye on him…knock on wood no fevers or bloody noses. It would be so nice to stay out of the hospital until Transplant time.

I spoke with Erin from Transplant today; she is basically Dr. Adams go to girl as far as scheduling and preparing us goes. She told me to expect to start Transplant on February 15 or 16th. Assuming all of Ronan’s tests come back with the results we are wanting to see. She didn’t see any reason why they wouldn’t, but he has to have everything from his heart, liver, and kidney checked to make sure they are functioning properly before we can get the green light. He has those tests scheduled for February 9th. So far, every time he has had his organs checked, everything has looked great. It is amazing how much the human body can take. After we get the green light for transplant, we will then be randomized to see if Ronan will have two transplants or one. You know we are hoping for two…. even though I am scared shitless at what this is going to do to my little guys body. Woody keeps saying we’ve got to throw the kitchen sink at Ronan’s cancer… and two transplants is definitely throwing the kitchen sink at it. If Ronan’s cancer comes back, it will be because we didn’t kill all of the cancer cells the first time around. Two transplants we feel, will increase the chances of killing all of his cancer.

I am trying to mentally prepare for Transplant/Isolation. I am wracking my brain for everything that I can possibly think of to keep myself and Ronan happy during his stay. I’ve been trying to think of it more like… If I were stranded on a desert island rather than… if I were trapped in a solitary confinement… what would I need?? Something tells me George Clooney may not be realistic. So far, I’ve come up with easy things such as: my computer(duh) my camera, movies, books, my coconut water (have I mentioned that I am OBSESSED with the stuff??) my yoga mat, Ronan’s favorite toys, Art supplies, his favorite bedding, his Wii and PS3. We will have to set up Skype to keep in touch with Liam and Quinn. I am trying my hardest to turn this into something really positive. Not many people get the opportunity in life to just simply “be.” I am hoping something really good will come out of this and it will make Ronan and myself even stronger. It will be a time for great reflection and learning. Tricia and I were laughing the other night because I told her I was going to study Buddhism while in Isolation. She told me she was going to make me a little sign to wear around my neck that says, “Cannot speak,” due to respecting the silence that comes with this religion. The image in my head totally made me laugh. Don’t think I’ll take it that far, but I love her for making me laugh.

I talked to my NYC Miss Macy today. That crazy pants. She texted me to see if the boys’ would like a King Cake from Nola. She is going there on a business trip soon and wanted to ship the boys one. I had no idea what a King Cake even was so I listened as she Googled it and explained it to me. I also told her that I needed her to come stay with me in Isolation. I was half joking and told her I needed her purely for selfish reasons. She told me to say the word and she would be on a flight if that is what I needed to keep me sane. I told her that we would save her visit for when we are finished with this Stem Cell Transplant and that way, we can all enjoy Miss Macy to the fullest. We are going to have such a reason to celebrate! I know Ronan is going to soar through this transplant with flying colors. He is so tough and has done so well with everything else, how could he not.

For now, I am going to soak up being at home with the boy and Woody. These past couple of days have been so sweet. I am thankful every second of the day, for all the blessings we have in our life. Ronan being the biggest one of them all. One of the night nurses that takes care of Ro whenever we are admitted to PCH says the same thing to me every time she comes in to check his vitals. She always tells me that she can tell Ronan is an old soul. This always makes me smile because I have known this since the day he was born. He has always been different; almost like he has been here many times before. He just has that look in his eyes that tells me not to be scared, not to worry, because everything is going to be alright. Looking into his eyes, I know this. This cannot turn out any other way; he has way too many hearts to break and way too much trouble to cause.

Magic Medicine… Day 2 Round 6

I so needed to take a little break from the hospital today. Ronan is still refusing to get out of bed so we spent the morning playing; I tried my best to entertain him. Our favorite nurse, Sharon, came to do Ronan’s dressing change. He did pretty well with it but at one point I heard him yell out to her as she was taking the tape off, “I’m not a brave boy, I’m NOT A BRAVE BOY!” Neither of us had said anything about him being brave, but in his little 3-year-old memory, he hears us telling him all the time how brave he is and as he was hurting from the pain, he decided to let us know that he was not brave. We both told him he was, that he was the bravest boy in the world. UGH. I could cry right now just by telling this story. A 3-year-old should not what it is to be brave and to have people tell him he is brave all the time. Cancer is robbing Ronan of his childhood and I am fucking beyond pissed about it. His childhood, his innocence, his toddler years are being ruined. This will never be alright with me and I swear to god, I will do something about it. For all the Ronan’s, Jacks, Mia’s, Phoebe’s, Coleman’s, Victoria’s, Leo’s, Noah’s, Tripp’s, Ashley’s, Layla’s, and everyone else out there that is suffering and dying from this disease. I will not stop until people start paying attention to childhood cancer

Auntie Karen came around noon and I snuck out to go home. I wish I could say I was productive at home but I just tried to catch up on some sleep since I only slept a few hours last night. I tossed and turned during my nap today; even though I was exhausted I can’t escape being restless. I got up, showered and ran off to my hair appointment. It felt so nice to do something normal and to be out of the hospital. Sarah (the baby whisper) came and relieved Auntie Karen and sat with Ronan for about 5 hours. Thank you both today so much; I don’t know what I would do without you.

Ronan is tolerating Round 6 really well so far. I know the effects won’t hit him until late next week but for now, besides the fact that his spirits are down, he is doing well. He hasn’t had any nausea yet which is great. I can’t wait to bust him out of here hopefully on Saturday evening. We then get a few weeks off from the hospital before we start the Stem Cell Transplant. We will have more scans done in the next couple of weeks to give us an exact answer on where exactly Ronan still has cancer left in his little body. I will update you when I know exactly what the date is going to be. Ro is peacefully sleeping now; he looks so beautiful. I swear I could sit and stare at him all night which is really what I end up doing most of the nights that we are here. My eyes will never be able to soak up enough of his beauty.

I received some exciting news tonight via FB! My friend, Jessica, posted on my wall that she saw my comment in US Weekly re: Sloan Kettering and Jake Gyllenhaal’s visit. I called up New York Macy to see if she had the issue. She didn’t and sounded half asleep but still said she would drag her butt out of bed and into the freezing cold at 11:00 at night to buy the issue. I was laughing at the thought of that and told her no way, that I would call up Trish or Sarah. I ended up calling Sarah and she ran out to grab a copy so she could tell me what is said. Thank you, SARAH!! You are such an amazing friend:) Not only did US Weekly put Ronan’s website in the latest issue, but they gave me a whole little side blurb. I am practically jumping up and down on the hospital couch I am SO EXCITED! After hearing this news, I can’t stop smiling and it feels so good. It’s been a couple of days since my smile has come out to visit:) This so raises the bar for us in getting the word out about Ronan and changing the way the world views childhood cancer. A huge thank you to Jennifer at US Weekly for keeping her word and having something so sweet come out of this. Now, if I can just get Jake to become the voice for childhood cancer. We don’t really have a voice and as I said before, I feel like he could really be a good advocate for us. I’m going to try my hardest to make this happen; people have to start listening and paying attention to this issue. There are too many babies, kids, teenagers, suffering from cancer for it not to get more attention.

Woody and I were having a conversation the other day about unconditional love and what it means. We are at a point in our life where we have so many amazing people doing things for us. You know who you are, all of you who are helping us all while asking of nothing in return. Please know that not a day goes by that I don’t think of all of you. Trust me, it kills me to not be able to sit down and thank each and everyone of you individually. You are all amazing, even the people that we do not know and who are starting to call themselves “Ronan’s Fans.” I try my best to keep up on all the comments on here and I hope you all know how much it inspires me, that I am inspiring you. Ronan is so full of beauty that he has flooded our lives with it by touching so many of your hearts. I will forever be eternally thankful for each and every one of you.

Transplant is going to be hard and some of you have asked what you can do as far as sending things for Ro to play with; for us to please make a wish list of things that you can send to the hospital to keep our little guy entertained. Keeping him on lockdown for 20-60 days is going to tough. I’m trying to get creative and think of the best ways to keep him happy. Of course you know his love for Star Wars so I was thinking of putting up a bunch of Star Wars posters in his room and making it very Star Wars themed. I went on Amazon the other night and they have a couple of different Star Wars tents that I am thinking he would love. As far as toys go…. I know everything has to be new or very sanitized to go into his room. It has to be insanely sterile. iTunes gift cards are always great. Ronan has totally taken over my iPad and loves to download movies, books, games, etc… My iPad has been my saving grace over these past few months; it keeps him entertained for hours. He has watched Season 3 of Mickey Mouse Clubhouse for about 3 days straight now and loves that he can choose the episode himself. I love to watch him do this; I can tell it gives him a feeling of independence and pride.

I can’t believe this is the last round of Ronan’s Magic Medicine. Look how far our little guy has come! After all he has endured and all the pain he has suffered, his beauty never fades. I can’t wait until this round is done and I can do my “Ronan’s done with chemo happy dance!” The light at the end of the tunnel is getting closer!!!

G’nite, sweet dreams, to all of you angels out there.

xoxo