The knot

The knot in the pit of my stomach is back and stronger than ever. So bad, that I am convinced I have an ulcer. I spent most of the day trying to get things done, while begin doubled up in pain. I also had to hang up the phone with my mom because I couldn’t even finish our phone conversation due to having to throw up. You see, it’s not enough that my child has cancer. At least before now, he was acting like it was not affecting him at all. It is now. I watch him as he favors the left side of his body more than his right, as he winces as I pick him up and tells me not to hurt him, as he keeps his little right arm stiff by his side because it hurts to use it. It’s not an effect from the chemo…. it is pain related to the Neuroblastoma eating away at his body. The MIBG scan showed a lot of activity in his right shoulder still. I’m convinced this is why he is now in a lot of pain. He won’t tell me though. I’ve asked him 50 times today and he refuses to tell me he is hurting. That is how stubborn and strong he is. This is why he will beat this fucking disease. No matter how hard it’s going to be; he is not going to give into the pain.

Try watching your 3-year-old suffer this way while feeling helpless as FUCK. Try to go on while acting as normal as possible, like every second of your day is not filled with excruciating pain. I cannot even go into the details of tonight but I will just tell you as I was sitting on the bathroom floor with my husband I just wanted to crumble up and die. He is hurting as badly as I am, even though he is trying so hard to be strong. I’m tired of being strong and I’m tired of watching him try to be strong. Nobody is strong enough for this shit. Don’t get me wrong, we can both put on a good show but at the root of all of this is pain beyond belief. I don’t even know how I made it through today. I was a zombie and ended up at my Tricia Boo’s house pretty much broken beyond repair. I sat with my friend and she watched and listened as I tried to put my feelings into words and she tried to fix the things that I told her were wrong. Nobody can fix this. The truth of it is, the damage is beyond repair at this point. Unless somebody were to magically heal Ronan overnight, I will live with this pain for the rest of my life. I don’t know how much more I can take. Somebody throw me a freaking bone already and give us some good news. I cannot stand to watch Ronan hurt while knowing I can’t fix it. I am sick to my stomach thinking about all the active cancer cells in his body just eating away at him and causing him pain. How can something so evil be going on in his sweet little body? I will never understand this. It is so cruel horrific. This isn’t a freaking ear infection or a broken arm. Oh, what I wouldn’t give for that.

We got home late last night. I feel like I’ve been run over by a truck. Ronan is happy, in spite of his pain. Nothing makes him happier than being at home. We have to go back to New York sooner than expected. We have to be back by March 17th. I need more time. Time with my twins, time at home, time to wrap things up before we go away for god knows how long. We have to get Ronan back to New York asap to start the high dose chemo as well as the NK Cell trial.

I’ve got to get in the right mind frame for New York. I know once I get there, I will take it by storm. But it is going to be hard to leave here. Mostly leaving my twins behind. My heart is literally ripped into shreds. I know they are in the best hands in the world, but that does not make this any easier. But we have no choice. We have to get Ronan better and New York is are only chance. I cannot believe New York Miss Macy is not there anymore. I am beyond sad about that. Tricia told me I had to find a clone of her that lives there. I’ll be accepting applications via email. Yeah right. Impossible. There is only ONE New York Miss Macy in this entire world. My little ray of sunshine is gone and I wonder how I will survive.

Time for bed my peeps. Tomorrow will be better. Tomorrow Ronan will wake up and not be in pain. Please. Please. Please. I can deal with him having cancer as long as I don’t have to watch him act like he does. I can’t take the physical signs…. it is more than I can stand.

Sweet dreams, my lovelies.

xoxo

Because I’m still in love with you

Clarity. It’s what I’ve found tonight. It came in many different forms. A long talk with Mr. Sparkly eyes, an email from my Mrs. Darling(P.S., SB… that’s your new name) , an honest talk with my husband, and the music that blares on my headphones from a mixed C.D. that my New York Miss Macy made me. Clarity tonight is mine and I’m not letting it go. It’s as if my eyes have been blurred with a film of fog for months now, and the fog has finally been lifted. I have fought so many things, trying so hard to push away all the good and beautiful things I have in my life because I feel as if I don’t deserve them. Because I feel if Ronan is in so much pain, that I deserve to feel nothing but pain as well. I know that the pain that I feel most of the time is not going anywhere anytime soon… but I do deserve to have beautiful moments in my life such as tonight. I deserve these things because I am a good, true person who says what she feels and feels what she says. I am ready to feel again, something besides sadness and numbness. I am ready to feel these things because although sometimes I get caught up in the scariness and ugliness of our situation; I know what the outcome is going to be. Ronan is going to be fine. He is going to make it thought this and I have to remember to hold on to my grace and dignity. ( Thank you, CC for saving my life the other night;) Grace and dignity because after all of this is said and done; I don’t want to have any regrets. I want to look back at this journey and know that I would not have changed a thing about the way I handled all of this. Is my honesty a fault? I don’t think so, although others may say differently. This is me, this is my life, and you all get to watch the way it plays out in the way I handle things. I am not afraid to put all of this out there as I have nothing to hide. My truth is empowering to me and everyday I am learning something new about myself and the world around me.

My husband, has fought for months to get me back because he has watched the way I’ve pushed everything and everyone away. He hasn’t ever given up on me and tonight I was finally able to tell him everything I have been feeling and thinking. He knew all of it already and told me the story of how he never wanted to get married. He never thought he would marry because he didn’t think anyone was special enough to share his life with. That was until he met me. I was the one who changed his mind, I was and am the only one for him. He asked me tonight if I was sure if I still wanted to be with him. I told him I had never been more sure of anything in my life. I have been numb for months now, but ever since New York I have slowly been making my way back to Woody. I love that man with every bone in my body and I know I was meant to drift away from him so I could come back stronger than ever. So we could come back stronger together. I know this because I knew on our first date when I was just 21 years old, that I was going to marry Woody. I may have drifted, but I didn’t go far, and a lot has to do with the fact that he refused to give up on me. Not only has Woody been fighting for the life of our child, but he has been fighting for me as well. Until you go though something as devastating and hard as this, you have no idea how easy it is to just give up on everything. I can’t do this anymore. I can’t do this without my husband and I can’t do this by myself. I need him more than ever. He needs me just as much and I have to go back to being a wife to him. Yes, Ronan is my number one focus…. but the neglect that my husband has felt is not o.k. He deserves so much better. Being with Woody feels so good to me, but it also hurts so much. Looking into his eyes is like looking into a reflection of my own eyes which are filled with so much pain and sadness. But at least I have him to share this with and someone who knows what I am feeling and understands. He is the only one in my life who truly gets it and I cannot push him away any longer. It just makes everything so much more difficult. He is my best friend, he is the one who is going to fight this battle with me. We can do this together; we have no choice because I am tired of trying to be the strong one and do this on my own. Woody wants me to let him in again; and I am ready to let him in. I want my husband back; I have missed him so much.

I don’t often speak of the things that go on with Woody and I but tonight I am getting personal. Everybody should know what a toll this takes on a marriage. I am just thankful that our foundation and marriage was so strong before all of this which in turn will help us get though this. We are going to look back a year from now and know that we just survived Hell, and that we did it together. How many people can say that?? Not many. We have 3 gorgeous sons that need their parents and two parents who are crazy about each other. Yes, Woody… I will grow old with you and it will be the happiest day of my life. Thank you for fighting for me and for us. I am here and cancer can Fuck off because it is not going to destroy my marriage. We are way too strong for that.

I have met some of the most amazing people through out all of this. Tonight, I owe everything to Mr. Sparkly Eyes.. for never judging, always being honest, and for loving me and my family. Also, to Mrs. Darling, I too have the most insane intuition which is one of the reasons I feel such a strong connection to you…. having you tell me tonight about what you are feeling meant the world to me, because I feel the exact same way. I do not think you are a kook in any way. You are such a blessing to me. New York Miss Macy… for being my ears tonight and making me great music to help escape the dark hospital nights. Great music makes everything all better. And to my Wooddawg. For being the most amazing husband alive and for knowing that I am worth fighting for and for bringing me back to you. I’ve missed you so much.

Ronan’s ANC was at 80 today…. his little bone marrow is trying so hard to come back. We will find out tomorrow if they have come up even more. Hoping, but it does not look like we will be getting out of here anytime soon. Thank you to Sarah and Stacy for helping me today so I could get out of the hospital for most of the day and actually pick my twins up from school. They were so happy to see me:) You girls have no idea how much your help means to me. Thank you so much. Love you both.

Woody often tells me songs remind him of me. This says everything perfectly tonight. I love you, Wooddawg. I will love you forever too.

Coldplay : Green eyes

Honey you are a rock

Upon which I stand
And I come here to talk
I hope you understand

That green eyes, yeah the spotlight, shines upon you
And how could, anybody, deny you

I came here with a load
And it feels so much lighter, now I’ve met you
And honey you should know, that I could never go on without you

Green eyes

Honey you are the sea
Upon which I float
And I came here to talk
I think you should know

That green eyes, you’re the one that I wanted to find
And anyone who, tried to deny you must be out of their mind

Cause I came here with a load
And it feels so much lighter, since I met you
Honey you should know, that I could never go on without you

Green eyes
Green eyes

Ohohohohooooo
Ohohohohooooo

Ohohohohooooo
Ohohohohooooo

Honey you are a rock
Upon which I stand

P.S. After 12 years of being with Woody, he still to this day, ALWAYS, opens the door for me.

G’nite beautiful souls out there. Sweetest dreams. I hope you all have someone in your life that makes you feel just as special as Woody does me. Love and health are the two most important things in life. <3<3 If you have them both, you are the luckiest people alive.

Here’s to you, Wooddawg. 9 years later, baby.

Today, 9 years ago, I was married to my best friend, the
love of my life, my Woody. The only person who has ever truly had
my heart. It was the happiest day of my life; until today. Today is
the happiest day of my life in a different way; a bittersweet way.
Never in a million years did I think that 9 years after I married
my husband, that I would be crying tears of joy because my baby’s
bone marrow scan came back as clean. Yes, that’s right, you heard
me, CLEAN! When Ronan was diagnosed, his bone marrow was filled
with 5-7 percent of Neuroblastoma. Now, it has come back as gone.
What does this mean you ask? It means a lot of things. It means
that the chemo is working, it means that the Neuroblastoma is going
to be easier to get rid of, it means that Ronan truly is kicking
cancer’s ass, and it means that we are once again, filled with so
much hope for our baby of ours. He truly is a force to be reckoned
with. Nothing can stop this baby, not even something as evil as
cancer. This is the best news we could have received today; the
best anniversary gift I could have ever asked for. It is truly a
miracle and proof that all of our prayers, love, energy, and
whatever else is out there, is working in our favor. We met with
Dr. La Quaglia today. He was serious and to the point, but also as
soon as he walked into the room, I knew. I knew that we were in the
right place and I knew that there is nobody in the world that I
would trust with the life of my child. It was like he had a circle
of angels surrounding him. I took one look in his eyes and the
trust was formed instantly. He of course told us how serious the
surgery was; he had to make sure we were aware of the risks. This
was hard for me to hear; but I know legally, he has to tell us
these things. He said on a scale of 1 to 10, 10 being the worst,
Ronan’s Neuroblastoma surgery was about a 3. I asked him how long
he anticipated the surgery taking and he looked at me and said, “As
long as it takes to do a perfect job.” Done and done. I know this
man is a gift from god and the only person that should be operating
on my child. With that said…. PLEASEPLEASEPLEASE…. spend all
day Monday thinking and praying for Ronan. He will need it and we
will need it. I have never been more scared in my entire life. This
is a huge deal… he has to get through this. Just imagining my
baby going through this makes me sick to my stomach. But he is a
fighter and has proven that he can handle anything. He loves us all
too much to leave us.

Tonight, I am asking that you keep a little
girl in your prayers named Ashley. Her mom got in touch with me a
few months ago and her daughter, who is 7, was diagnosed about a
week after Ronan. Today, as Ro and I were trecking through the snow
to Sloan Kettering, I heard her mom yell out my name. I turned
around and there she was, Nicole, on her way to Sloan as well. She
introduced herself and said she has been following my blog for
quite some time now. Ashley, will have her surgery tomorrow, by Dr.
La Qualia. I know she is going to be fine, but as always, extra
prayers help. I will keep you posted and I will be thinking of her
all day. I saw Ashley today. She has the exact same sparkle and
strength in her eyes that Ronan has. She is going to be fine;
another beautiful survivor.

So, New York has completey healed my
love for running. It truly has become my therapy again. Last night,
I was crawling out of my skin, dying to run since it had been a day
since I had gotten to. I headed up to Central Park and ran about 6
miles on complete ice. It was dangerous, crazy, and completely
cathartic. Tonight, I did the same thing as well. Right now,
running is the only thing that is saving me. I don’t have my
therapist here…. and I so need to do a phone conference with her.
Running is my saving grace for the time being. I am going to come
back here and make the NYC marathon my bitch. Mark my words.
Today, I got to meet the new love of my life, Miss Macy:) She is somebody
that emailed me awhile back on my blog to say that she lived here
and if I needed anything to please call her. She is around my age,
and we have been keeping in touch for awhile now. Finally, I was
able to meet this little angel of ours. And what an angel she is.
She came through the RMH, all bundled up in her fur, toting gifts,
and as gorgeous as can be. Ronan and Quinn instantly fell in love
with her and I did too. She stayed for a couple of hours and we
entertained the boys the entire time. Ronan was flirting away, up
to all of his usual tricks. Macy could not have been more fun and
just what we needed to brighten our day. Thanks, Macy… as I said
before, I feel like I’ve known you forever. I can’t wait to
celebrate my birthday with you.

So, tonight, I sit alone at some
amazing pub by the RMH, paying bills and blogging away on my
anniversary. Sad but true. I would of course, rather have Woody
with me but he so sweetly understood that I needed to get out.
INDEPENDENCE…. ugh. it is so important to me. I need this time to
do my thing…. blog, pay bills, be out in the real world
surrounded by people laughing and who have no idea what the fuck
cancer really means in life. Everyone here is laughing, drinking,
playing trivia, and living life to the fullest. Just as they should
be. Hey, it wasn’t so long ago that I lived this carefree life. I
will never take it for granted again. I used to be exactly like
these people in this bar. And I will be someday again. Someday, I
will be back here, with my husband, just enjoying each other and
not obsessing about Ronan’s cancer. Love you all. Sweetest dreams.
xoxox

This is dedicated to Ronan… thanks Linds. Because baby, he
is our firework. Do you ever feel like a plastic bag, drifting
through the wind wanting to start again? Do you ever feel, feel so
paper thin like a house of cards, one blow from caving in? Do you
ever feel already buried deep? 6 feet under screams but no one
seems to hear a thing Do you know that there’s still a chance for
you ‘Cause there’s a spark in you You just gotta ignite, the light,
and let it shine Just own the night like the 4th of July ‘Cause
baby you’re a firework Come on, show ’em what you’re worth Make ’em
go “Oh, oh, oh” As you shoot across the sky-y-y Baby, you’re a
firework Come on, let your colors burst Make ’em go “Oh, oh, oh”
You’re gonna leave ’em falling down-own-own You don’t have to feel
like a waste of space You’re original, cannot be replaced If you
only knew what the future holds After a hurricane comes a rainbow
Maybe you’re reason why all the doors are closed So you could open
one that leads you to the perfect road Like a lightning bolt, your
heart will blow And when it’s time, you’ll know You just gotta
ignite, the light, and let it shine Just own the night like the 4th
of July ‘Cause baby you’re a firework Come on, show ’em what you’re
worth Make ’em go “Oh, oh, oh” As you shoot across the sky-y-y
Baby, you’re a firework Come on, let your colors burst Make ’em go
“Oh, Oh, Oh” You’re gonna leave ’em falling down-own-own Boom,
boom, boom Even brighter than the moon, moon, moon It’s always been
inside of you, you, you And now it’s time to let it
through-ough-ough ‘Cause baby you’re a firework Come on, show ’em
what you’re worth Make ’em go “Oh, Oh, Oh” As you shoot across the
sky-y-y Baby, you’re a firework Come on, let your colors burst Make
’em go “Oh, Oh, Oh” You’re gonna leave ’em falling down-own-own
Boom, boom, boom Even brighter than the moon, moon, moon Boom,
boom, boom Even brighter than the moon, moon, moon

Stem Cell Harvest day

Today got off to a bumpy start. I woke Ronan up around 6:45 a.m. and he was not happy to say the least. One, he was mad that I woke him up so early, and two, he was even more mad that he had to spend his day at the hospital. After having him hit, scream, cry, slam doors, and hide.. I finally got him into the car. He calmed down after a bit and I kept assuring him that there were no owies today. Once we got back to the stem cell room, our nurses, Heather and Kim, got things moving very quickly. They gave Ronan his Benadryl and Tylenol and soon started the process of collecting his stem cells thorough his broviac. Medicine and science are so amazing, the whole process was mind blowing.  After about an hour, we were able to see the stem cells start to appear in the bag. Ronan slept for the first couple of hours and after that, it was party time. He was a busy little guy but everything he did was done from his bed. We watched a little movie, shopped for Halloween costumes, played Star Wars, colored, did a sticker book, and last but not least, Ronan teased and flirted with the nurses the entire day. He was so playful and cute and he had those nurses eating out of the palm of his hand. Mimi Kay spent most of the day with us and Tricia came to visit as well. Ronan loves having those two around and so do I. It was a long day, but a fun day. Any day that Ronan is in great spirits is a good day for us.

After we got home, we played with the twins and waited for Woody to get home. It was a great day weather wise here… lots of storms and rain. Being a Pacific Northwest girl, a stormy and rainy day always make me happy. After it stopped raining I got a text from my friend/neighbor asking if we wanted to go for a walk. I knew the fresh air would be good for us so Quinn, Ronan, and I walked down to the Tarbell’s to pick our friends up. It was the best walk date ever. Ronan was so happy, running in the puddles and smiling. Laely and Wesley watched from the wagon and everyone was in a great mood. It made my heart melt seeing Ronan running around acting like the little 3-year-old he is supposed to be. What a great way to end our day. I love my neighborhood and I love our friends.

We heard back from the hospital tonight. We will not have to go back tomorrow because they got all of the stem cells they needed today. They needed 10 million and they actually got close to 15 million. So happy about that news!! One less day in the hospital for us! Our next big day will be Thursday when we go in for our MIBG scan, Bone Scan and MRI. We will then find out on Friday more in detail how the chemo is affecting Ronan’s cancer. Please, keep praying and loving him. I know all of your prayers, energy and positive thoughts are working on our sweet baby boy!

He is out like a light now and I am wiped out too. I hear some Nancy Botwin calling my name. I am going to indulge a little bit tonight and watch one of my favorite shows for a bit. Goodnight to all of our angels out there!