Ronan baby takes NYC

Today, has been non-stop. We got up at 7 NYC time, got all ready and headed over to Sloan Kettering. Ronan was not happy and is still not happy about being here. He keeps asking for Sharon, our nurse back home, and said he doesn’t want to make any new friends here. He was so upset over having the blood taken out of his tubes (which is something he’s had done 100 times) that he kicked and screamed the entire time. We have met a lot of new nurses and doctors, all who have been beyond nice. I was a little overwhelmed walking in here. It felt a little like we were starting all over and just being told that Ronan had cancer. I quickly snapped out of it after seeing how much the doctors really do care here. Dr. Modak, who is part of the Neuroblastoma team, has an entire wall in his office full of pictures of Neuroblastoma survivors. Woody and I both got teary eyed over it. It was the most beautiful thing I have ever seen; a wall full of kids, young and old, who have survived this horrific disease. It meant the world to us, as parents. Everything here is very positive, inspiring and everyone wears a smile. We miss our few close friends at PCH but I think we will be o.k. here. It’s not quite as scary as I thought it would be:)

After Ronan’s blood work came back and was super high, they decided on the spot to harvest his stem cells. This is great news! It means everything will move a little more quickly. The Doctor even got his sugary date bumped up to January 3rd, instead of the 7th. We are so happy about that. The sooner we get the job done, the better. Everything here is really fast paced and precise. I like that; cancer is like a job to me now.  I know what we are here to do, and we are going to do the best job at getting it done.

Ronan is mad that he has been at the hospital all day. He is finally asleep while they are collecting his stem cells. We asked Dr. M about any restrictions as far as taking Ronan out in the city. He gave us the green light to take him wherever since his ANC is so high. I love a green light:) We are going to make the best of our time in the most fabulous city in the world. Ronan is so going to take it by storm and I know this is something we will look back on in a very positive way.

That was yesterday, I finally got the Wifi set up so now I can hopefully keep you all updated. The stem cell harvest went great yesterday but they did not get the amount they needed so we will have to go back on Monday to let them harvest again. Not a big deal… we are going to enjoy today and Sunday out of the hospital and have some fun in the city. Hope you all have a beautiful weekend!!

xoxo

I heart NYC

 

We had the most gorgeous, smooth, flight today. Not to mention, we made it to NYC in 3 and a half hours, didn’t have to deal with security, lines, people….. we just drove right up to the jet and aboard we went. The pilots were amazing and they even let Ro co-pilot the plane! He was in heaven and I was so relaxed, calm, and felt a sense of peace that I have not felt in a very long time. Just knowing that Ronan was on a private jet, without germs or 300 other people was the best gift I’ve ever received. Again, thank you Mr. W…. when all this is said and done, I hope you can meet our baby boy so you he can look into your eyes, and tell you thank you. We are so grateful to you and what you did for our family.

We arrived at The Ronald McDonald house this evening. It is quite a sight and a very happy place, all things considering. They really do it up for Christmas and make everything extra magical. I am thankful that places like this exist. I don’t know what we would do without it. Auntie Karen came and met us and we grabbed some pizza nearby. We then she came back here and she helped me unpack and organize. Feels like home ready:)

Ro is asleep and I’m going to try to get some shut eye too. We have to be at Sloan very early in the morning so Ro can have some blood work done. Just wanted to let you all know that we are safe, thankful, and so happy to be here.

Sweet dreams, angels.

xo

My friend, Sandra, is one bad-ass MoFo <3

I’m dedicating my post to my new hero tonight, Sandra Foutz. I’ve talked about her little girl, Mia, several times on my blog. She is fighting brain cancer and I met her husband at PCH when he ran me down because he recognized Ronan from this blog. I’ve become good friends with Matt and Sandra; they are an amazing family. When this all happened to Ronan, I begged Woody to let me shave my head. I begged Liam and Quinn and ultimately I didn’t do it, because just talking about it to the twins upset them. I had to make the right call… they are 7 and are scared enough. They are just now starting to pick up on the whole being different thing and I guess a mommy with a shaved head was too much for them. I respected that, but my inner badass so wanted to do it. I did not; but Sandra did. Her husband, Matt just sent me a picture of her and I started bawling. She looks so beautiful and I can see the strength in her eyes. Sandra, you are amazing and Mia is so lucky to have you as her mom. I am going to keep this picture of you on my phone and look at it every time I am feeling weak and sorry for myself. You are my hero and I love you.

Ronan’s ANC counts jumped from 30 yesterday, to 200 today. That is great news and looks like we are getting out of here tomorrow. Keeping my fingers crossed… they want his ANC at 250 before we can leave and I am expecting that Ronan’s counts will be much higher tomorrow. I guess we were meant to be here this week. Ronan had another bloody nose and I spent from 7 this morning until about 10 a.m. pinching it. They transfused him again with platelets and that got it to stop. I ran home to shower and rest a little bit. Mimi stayed with Ronan for me. My friend, Niki, came and took me out into the world today to run errands. It was a good thing; I really needed her company. We ran into A.J.’s for a couple of things…. I about had a breakdown in there. I couldn’t focus on what I needed to get, felt like I was in a fog, and couldn’t think straight. I think I scared Niki…. it’s hard for her to watch me struggle. That’s how big her heart is. She was patient with me and helped me through it. We also ran to get pedicures together which was such a treat. I’m going to miss her so much when I’m gone:( I’m going to miss a lot of people. I’m looking at New York as though I am there to do a job. I know when we get there I will be o.k. I will be focused, determined, and strong. There is no time for being weak; it’s show time and it’s time to get this tumor out of my baby.

I am trying not to worry about our plane situation too much. I am leaving it in Woody’s hands and I have faith that things will fall into place. Woody is supposed to call Mr. W tomorrow to let him know we have the green light on being discharged, for sure. Praying that it all works out. I was having so much anxiety here tonight that I spent an hour and a half organizing our little room, disinfecting anything I could… even the floors, bed, and couch. You know you’re going crazy when doing things like that calms you. It is the only thing that gives me a feeling of control. I felt an instant sense of calm and relief when I was finished. Ronan sat and helped me and cleaned all of  his Star Wars guys. Then he insisted on throwing them all across the room for me for 30 minutes and basically played fetch with me because he is all hooked up and cannot get them himself. The things we do as mom’s:) I was happy to do it for him though; anything to make the time pass by a little more quickly. Ronan spent the rest of the  night tonight up to all of his old tricks. Bouncing off the walls, causing trouble, being sassy… all which tells me he is feeling great. One of his favorite nurses, Arica, was here and he spent a lot of the night giggling and laughing with her. She is sooooo great with him and he adores her. I am going to miss the nurses here so much. They are angels and I have such respect for the job they do; it is such a hard one but they do it so well. We are going to miss our favorite male nurse too, Danny. Love him. He is really great with Ronan. We will be excited to get back to them in January.

I’m am going to try and cuddle up with my little bug; despite the loudness of our room tonight. Oh, what I wouldn’t give for a private room! G’nite to you all. Please keep us all in your thoughts and prayers so we can get this show on the road and get to NYC already! Hugs and kisses to you all.

P.S. A very Happy Birthday wish to my dearest, sweetest, dolly, LIZ!! Happy 21st my LOVE! I hope you had a beautiful birthday and can’t wait to spend time with you in NYC!!

And P.P.S. To my new NYC friend, Macy!! I can’t wait to meet you. Thanks for being so helpful and sweet, even though we are strangers! So glad you reached out to me on here and so glad to have a friend in New York. Love it even more that you are an Alumni Sundevil! Our friendship was so meant to be!

LIZ AND RO

Overwhelmed, Insomnia, Anxiety and more

I’m overwhelmed. What do I want to do when I’m overwhelmed? Go into hiding; hence the ignoring phone calls, blog, texts, facebook, etc…. Sorry to those have been calling and I’ve been MIA. I was so ready to leave for New York today. SO READY. I don’t know how much more of this anticipation/anxiety I can take. I told you all I am a die hard plan queen. When things don’t work out; I become an instant anxiety ridden freak. This is me now. Also, hating the fact that we are just sitting in the freaking hospital, when Ronan has not had a fever now for 2 days, but they still insist on keeping him on these fucking antibiotics even all the blood cultures are coming back negative for any kind of infection. I know, I know, better safe than sorry. I just don’t like my baby having to get more medicine than he needs; and especially when he does not need it. It’s hospital rules, I get it. But my inner rule breaker just wants to take him off all of this crap and take him home. We also need his ANC to come back up; hopefully his numbers will be even better tomorrow.

Woody is working on getting the plane situation figured out. I feel bad for Mr. W…. he is trying his best to work it out for us; but time is money, people. Woody is supposed to call him on Wednesday to give him the for sure word on when we can leave. The doctors have been going back and forth on it. Sooner rather than later please. Mimi and Papa have been coming to relive me during the day; and I do the night shift. It helps so much. Except for the fact that I miss my twins like CRAZY. I’ll never stop resenting the fact that I don’t get to be around them very much anymore. Thank GOD for Woody. He wins the best dad of the year award, hands down. He is giving me the best gift ever just because I know that Liam and Quinn are in the best hands, with the best dad in the world.

I don’t have much more to say tonight except thank you to everyone who has been checking in, dropping of meals (Kati- thank you so much for last week and tonight) I wish I could give you all a big hug. We are hanging in there, we will get to New York sooner or later. I just keep telling myself everything happens for a reason. Even though I have come to despise that stupid saying because there is no reason that my baby should have cancer.

G’nite to all of you beautiful people out there. Sweet dreams.

xoxo

P.S. Because I don’t have a lot to say tonight; mainly because I’m scared of the thoughts in my head; I’m going to leave you with an email from my precious Susie who lives in Colorado. She was in town over the weekend and got to spend some much needed time with us at the hospital. It was the first time I have seen her since Ro’s diagnoses. It meant the world to me. We had the best time, talking, laughing, hugging, and crying. I miss her so much and she will always be like a sister to me. She is so great about reminding me of how strong I am and that I can do this. A piece of my heart will always be with her no matter the distance between us. I love you JYD.

Hi Mama- 

I just wanted to send you a quick note to tell you how much this morning meant to me.  You are absolutely the strongest woman I know.  Seeing you at the hospital with Ronan was pretty fucking intense.  Although I’ve been hearing about everything from the beginning and have been reading about it everyday since, nothing could have prepared me for seeing you two in that setting.  It was scary and very real.  Ronan is a darling angel and I hated seeing him stuck in that bed. With that being said, you are doing EVERYTHING you need to in order to kick this shit and that is apparent even from hundreds of miles away.  I know that very soon things will be back to normal.  Maybe not before you briefly glimpse hell (during isolation for 30 days amongst other hurdles) but very soon nonetheless.  I love you so much Maya.  You are a wonderful mama and your love alone can conquer all of this.  It has to because I said so and I’m the JYD mother fucker!
Stay strong and know that I think about you EVERY SINGLE DAY.
All my love,
Suz

We need a little luck

In an ironic twist of fate, here we are. Back at PCH, in the very hospital room where this all started. Ronan spiked a fever today, which immediately sends us back to PCH, to the ER, and now we are finally in a room on the second floor. I am trying not to freak out over this; we were supposed to leave Monday for New York but I am pretty sure that won’t be happening now. Dr. Eshin said he would like us to wait until Wednesday, just to make sure Ronan does not have an infection of any kind. Can you guess the word coming up? FUCK. Mr. W had his plane, staff, and everything all ready for us to go on Monday. Woody left him a long voice mail tonight explaining the situation. I really hope things will be resolved; I just feel bad because even though our circumstances are not in our  control; I hate being a pain in the butt. And I hate when a plan goes awry. A consistent plan, which rarely happens these days; is something that I thrive on. That’s out the window now. I know everything will work out; it has to. The most important thing is Ronan. His ANC is at 0. He has no immune system whatsoever so being back at PCH is what is best for him right now so he can get antibiotics and hopefully his counts will start to rise.

So, back to being in “the room.” I can remember it so clearly. It was the room that we were first admitted into, before we knew what was wrong with Ronan. We had an MRI done and our Opthamologist, Dr. Cassiday, came in at midnight to read it for us. I remember sitting in the room with Ronan, while Woody went out to go over the scan. I was panicking, but also very calm. Woody came back in the room with a look on his face that I will never forget. He grabbed me and told me that Ronan had something on his brain; but they didn’t know what. I still remained calm and went out to go over the MRI with Dr. Cassidy. He showed me the spot and I looked at him and said, “Ok. But he’s going to be o.k., right?” He looked at me and said, “Yes.” Little did he know what we were up against, but at that moment, that is exactly what I needed to hear. I remember feeling so strong in this room, and maybe that is why we are back here now; so I can gather my strength for New York. This is also the room where I went into the bathroom, locked the door and called my best friend, Susie, who lives in Colorado to tell her what was going on. In another ironic twist of fate; she just happens to be in town and is coming to see me here tomorrow. I just know this all means something; there are too many coincidences for it not to.

All in all it was a good day. I went to see “The Good Doctor,” this morning. We got everything sorted out as far as medication goes before I leave for New York. We got in a good little chat session too which I always enjoy. He is a smart man, that good doctor of mine;) I feel like I am in very good hands with him. After that, I ran some errands and headed home. I was hoping to go to Liam and Quinn’s basketball game, so Mimi and Papa came over to stay with Ro. Didn’t end up happening as that is when Ronan started to get his fever and did not want me to leave. I am so sad I missed their game; Woody said they did awesome and Quinn scored 8 points and Liam make a couple too. So proud of them. I get so sad about missing their things; breaks my heart. Add that to number 1,435 reasons of why I HATE CANCER. I also missed my annual Holiday Party with my best friends tonight. It’s been a tradition of ours for years now. Little things like that make me sad.

I’ve just realized that I am up way too late. Time to say g’nite to all of you beautiful souls out there. I love you.

xoxo

I am numb… and cancer is dumb

Clinic Day! Ro got platelets and blood to boost him up for our flight on Monday. He has been tired the last couple of days; crashing from the chemo. His ANC is at 10… which means he has no immune system. Dr. Eshin said it was good that we were flying on a private jet, otherwise he would have reconsidered letting us go on a commercial flight. I’m just going to say this one little thing to this man, whom I don’t even know, but I am calling him Mr. W. Dear Mr. W…. I don’t even know if you read this blog, I don’t know you, but I hope to meet you someday. You don’t want any recognition for what you are doing for us, which speaks volumes about the kind of person you are. I used to know people who if they would have done something like this for us, they would have wanted a neon sign outside their house, announcing it to the world. You don’t want anything and are doing this from the kindness of your heart. I am saying thank you, with tears pouring down my cheeks. You are giving us the most amazing gift by getting Ronan to New York as safely as possible without compromising his immune system. Please know how thankful we are for you and what you are doing for our family. Every time I see Ronan smile and healthy in New York City, I will think of you. You are a gift and an amazing human being. I hope your life continues to be filled with beautiful things and many blessing. We love you, even though we don’t even know you. Thank you from the bottom of our hearts.

It was a nice day at the clinic. I was sad to say bye to Sharon. Ronan and I both held her and told her we loved her. I wrote her a little card; telling her how much she means to us. I am emotional today, lots of tears. My Bethany stopped by to let us borrow some of her luggage and stroller. I held on to her as long as I could but had to let go because I could feel myself wanting to melt into her arms and crumble. She knew it too; I could tell by looking into her eyes. That girl can see into my soul, I swear. I’m now tucked in bed with Ronan; who is sound asleep. I have been holding Ronan all night and just letting the tears pour. There is no place I’d rather be than tucked away from the world with him as peaceful as can be. I need sleep tonight; I still have a lot to do before Monday. It is hard to get things done when your head is in the clouds. I feel like I’m in a constant fog or I’m in the middle of a dream and cannot wake up. I have to suck it up, wake the fuck up, and get us ready for New York. It’s crunch time now….tomorrow has to be productive.

I wrote this the tonight….half asleep, as I feel like I always am. It may be really bad, but the words just kind of came pouring out of my head. Forgive me if I don’t even make sense…. this whole 20,000 different feelings at once is something I’m still trying to get used to. This is for my Ro: My hero: My best friend:

He holds my hand as he sleeps; as the hot tears pour down my cheeks.
The face of an angel, with our souls intertwined. I pray to God that you will always be mine.
With eyes so blue and a smile so true, this cannot possibly be happening to you.
We will fix you and bring you back to us; never letting go of the angels we trust. I dream of the day when peace will reside; and a brand new heathy boy back by my side. I will never give up, I will never let go; together you and I will put on quite a show. After all this is said and done; we will have changed the world one by one.

My song of the night is dedicated to Ronan. Wonderwall by Oasis. Because he is gonna be the one that saves me.

Today is gonna be the day
That they’re gonna throw it back to you
By now you should’ve somehow
Realized what you gotta do
I don’t believe that anybody
Feels the way I do about you now

Backbeat the word was on the street
That the fire in your heart is out
I’m sure you’ve heard it all before
But you never really had a doubt
I don’t believe that anybody feels
The way I do about you now

And all the roads we have to walk along are winding
And all the lights that lead us there are blinding
There are many things that I would
Like to say to you
I don’t know how

Because maybe
You’re gonna be the one who saves me ?
And after all
You’re my wonderwall

Today was gonna be the day?
But they’ll never throw it back to you
By now you should’ve somehow
Realized what you’re not to do
I don’t believe that anybody
Feels the way I do
About you now

And all the roads that lead to you were winding
And all the lights that light the way are blinding
There are many things that I would like to say to you
I don’t know how

I said maybe
You’re gonna be the one who saves me ?
And after all
You’re my wonderwall

I said maybe
You’re gonna be the one who saves me ?
And after an
You’re my wonderwall

Said maybe
You’re gonna be the one that saves me
You’re gonna be the one that saves me
You’re gonna be the one that saves me

I’m just a girl in the world

Favorite conversation of the night:

Me: “Ronan, you’re so nice.”

Ronan: “Thank you.”

Me: “You’re welcome.”

Ronan: “Mom, you’re so cute.”

Me: “Thank you.”

Ronan: “Your so welcome.”

I love his little voice so much. And that smile could melt your heart. I love that every night, he curls up beside me and holds my hand as he falls asleep. I love waking up to him each morning and his bright blue eyes, and how excited he is to wake up his brothers and start the day. Being with Ronan is like a piece of heaven. He is my little pea, and I am so lucky to be his pod.

Sarah came over early so I could go to my therapist appointment. It was a good one, as always. I always leave there more vunerable and with a flood of emotions running through me. I feel like it’s a cleansing of my soul that I really need though. After that, I ran some errands and came home to a happy Ronan who told me he missed me so much. He was all snuggled up in my bed with Sarah. As Sarah was leaving she told Ro she loved him and he told her he loved her too. So sweet.

Ronan is not feeling well today. He was really clingy most of the day. My dear friend, Gay, came over to help me pack. Thank GOD for her! She just comes in here and snaps her fingers, and bam!, it’s done. She is so much fun to be with, even when we are doing things like packing up bags. We got Liam and Quinn’s bag packed and Ronan’s. One more check mark off my list! Pam also stopped by and cracked Gay and I up the entire time with her funny stories about being at Sloan with her daughter and how important her flat iron for her hair and lip gloss were to her. It was her coping mechanism and I love it. Her daughter was having a major surgery done and Pam sat and applied lip gloss over and over again. I totally get it. I know I am going to be the same way. Anything to make the situation seem a little more normal. I was so happy and thankful for those two today. They made me laugh a lot which is something I needed today since I spent the majority of the morning crying over anything and everything. The anticipation of leaving her is enough to send me over the edge.

I also got to see Niki and Fernanda for a bit. They both buzzed by quickly. Again, so lucky for the friends I have. They keep me going because I can see how much what we are going through has changed them. Their lives will never be the same just because of the kind of people they are. That shows me what amazing hearts they have. All of my friends are this way; they are the one’s I keep closest to my heart. I will keep them there for the rest of my life.

Woody and I had a good little pow wow tonight. He is always so interested in my therapy sessions and sometimes I don’t really feel like telling him about them. We got into it a little bit, in a healthy way. I told him what was going on and how I need to deal with a lot of this, on my own, in my own way. He gets it and is giving me my space. He also told me he knows exactly what I am thinking…. how my deepest fears are he is going to walk out on me like my dad did. He told me he will never give up on me and never let me down… like me father has. I know this about Woody; it is one of the main reasons I married him. No matter how much I push him away, because I am hurting, he won’t let me get too far. He has been really great about giving me my space, but also reminding me that we need each other. Before I met Woody, I was used to dealing with things in my life on my own by myself. When you are in the middle of a crisis, it is easy to revert back to that. I am trying not to; but I am very independent and stubborn and my mind tricks me into thinking I can do everything on my own. I am working on these things… I don’t want to go though this alone, but I also want my space. I am hoping to find a happy medium, if that is possible.

Woody and I always joke the Gwen Stefani‘s “I’m just a girl in the world,” is my theme song. So tonight’s song is dedicated to the Wooddawg. And the other love of my life, Gwen Stefani.

Take this pink ribbon off my eyes
I’m exposed
And it’s no big surprise
Don’t you think I know
Exactly where I stand
This world is forcing me
To hold your hand
‘Cause I’m just a girl, little ‘ol me
Don’t let me out of your sight
I’m just a girl, all pretty and petite
So don’t let me have any rights

Oh…I’ve had it up to here!
The moment that I step outside
So many reasons
For me to run and hide
I can’t do the little things I hold so dear
‘Cause it’s all those little things
That I fear

‘Cause I’m just a girl I’d rather not be
‘Cause they won’t let me drive
Late at night I’m just a girl,
Guess I’m some kind of freak
‘Cause they all sit and stare
With their eyes

I’m just a girl,
Take a good look at me
Just your typical prototype

Oh…I’ve had it up to here!
Oh…am I making myself clear?
I’m just a girl
I’m just a girl in the world…
That’s all that you’ll let me be!
I’m just a girl, living in captivity
Your rule of thumb
Makes me worry some

I’m just a girl, what’s my destiny?
What I’ve succumbed to Is making me numb
I’m just a girl, my apologies
What I’ve become is so burdensome
I’m just a girl, lucky me
Twiddle-dum there’s no comparison

Oh…I’ve had it up to!
Oh…I’ve had it up to!!
Oh…I’ve had it up to here!

And yes, how lovely is this dress…. I would totally wear this dress while singing “I’m just a girl,” to the Wooddawg.

xoxox

Nighty Night! Sweet Dreams!