The little monkey made it through the night

We ended up staying out of the hospital last night. Ronan slept and slept hard. His fever was off and on through the night, but did not ever go above 100.1. So thankful.  I had the most awful dreams last night. UGH. I can’t shake them this morning. I had a dream that Ronan could no longer have his Stem Cell Transplant because he had too much Neuroblastoma everywhere. All of our doctors were in my dream and there was a lot of screaming, crying, and hitting done by me. Can’t I catch a freaking break?? Why can’t my sleep be at least be peaceful; my days are filled with so much crap you’d think I’d at least be able to take a break while I sleep. Not the case, ever. I need a break today. I may have to just bite the bullet and leave Ronan for a bit to go and hike Camelback or something. I need to clear my head for just awhile.

The boys’ are excited to watch the Packers football game today (Go Packers!) and they also have a birthday party to go to as well. Woody and Quinn are still asleep and I am cuddled on the couch with Ro and Liam watching Mickey Mouse. Ronan does not want to do anything; except have me be by his side. The little guy gets upset if I even leave his side to get up and try to do some things around the house. Macy and I have been laughing about this on the phone and calling him my warden. He certainly is the one who rules the household around here. I don’t mind, I secretly like being his slave. Especially when he looks at me and tells me I’m the best mommy in the world. It’s moments like that, that make me realize I can get him through this because he is so worth all of this.

On Friday night I got a call from my OBGYN,(the BEST one in the world, Dr. Kathleen Schwartz) We have been trying to connect forever but I keep missing her when I am in for my visits. She is the one who delivered my twins and Ronan. It was so nice to hear her voice and to talk to her for awhile. The first thing I said to her was, “Can you believe this is happening to us?” She was very sweet and very concerned and it was nice to catch her up to speed on things.

All of my little monkeys are up now so I’ve got to get breakfast made. Have a great morning… I basically just wanted to update you on Ro’s fever. Hoping we continue to keep him home. Thank you Stacy Frakes for saving my life with your Hava Java delivery this morning! You are the BEST!!!!!

If I could open my arms
And span the length of the isle of Manhattan
I’d bring it to where you are
Making a lake of the East River and Hudson

And if I could open my mouth
Wide enough for a marching band to march out
They would make your name sing
And bend through alleys and bounce off all the buildings

I wish we could open our eyes
To see in all directions at the same time
Oh, what a beautiful view
If you were never aware of what was around you

And it is true what you say
That I live like a hermit in my own head
But when the sun shines again
I’ll pull the curtains and blinds to let the light in

Sorrow drips into your heart through a pinhole
Just like a faucet that leaks and there is comfort in the sound
But while you debate half empty or half full
It slowly rises, your love is going to drown

Sorrow drips into your heart through a pinhole
Just like a faucet that leaks and there is comfort in the sound
But while you debate half empty or half full
It slowly rises, your love is going to drown

Sorrow drips into your heart through a pinhole
Just like a faucet that leaks and there is comfort in the sound
But while you debate half empty or half full
It slowly rises, your love is going to drown

Sorrow drips into your heart through a pinhole
Just like a faucet that leaks and there is comfort in the sound
But while you debate half empty or half full
It slowly rises, your love is going to drown

Your love is going to drown
Your love is going to drown
Your love is going to drown
Your love is going to drown
Your love is going to . . . .

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

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

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

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

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

xoxo

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

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

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

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

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

xoxo

Julien – The Julien Collot Foundation

Julien – The Julien Collot Foundation.

I don’t have words tonight. Only tears. Macy, you know why. Mace and I saw this little boy while we were at Sloan. We couldn’t figure out what he had, but we knew it was something serious. I told Macy it had to be cancer, since that is what everyone on our floor had. I was right. I stumbled across this on Facebook tonight. This is Julien. He has the most gorgeous mother. I saw her a dozen times pushing her son around in a wheelchair while we were at Sloan. I was always too scared to talk to her. Julien had Acute Myeloid Leukemia, a cancer that is normally found in adults. I learned tonight, that Julien passed away. I am beyond sad, mad, angry, and scared. Tonight my tears are for him and  his family alone. I am so sorry for them and the loss of their little boy. Please take the time to read his story and think about how lucky you all are, and how something has to be done about childhood cancer. The funding for childhood cancer is embarrassing, as there is nothing there.

As I said before…. no words tonight, just tears. I will pray for this little boys’ family and friends and shout a big FUCK YOU!!!!!! to cancer for them. Whoever said life is just not fair, sure was right. No mother or father should have to endure this kind of pain and sadness. Something has to be done, awareness has to be raised.

Every 3 1/2 minutes a child is diagnosed with cancer. Every 4 hours a child dies from cancer. 40,000 kids worldwide are being treated for cancer right now. Childhood cancer is the #1 disease killer in children. Even so, it gets almost no funding, no research, and no awareness. Most people don’t even know what a gold ribbon represents. The National Cancer Institutes’s budget is 4.6 billon dollars. Breast cancer research receives 12%, prostate cancer receives 7% and all major pediatric cancers combined receive less than 3%. This is a tragedy. Something has to change. For all of the beautiful Julien’s in the world.

G’nite my friends. Please say a prayer for Julien and his family and never forget how lucky you are. I forgot at one time, and will never do so again.

His skin is so beautiful, it sparkles

Look at how well Ronan’s incision is healing. It is beautiful. He has the most amazing skin and I’ll bet in a couple of years, you won’t even be able to see his scar. Not that it would matter because it is going to make for a great story. The story of the most beautiful boy in the world, and how he beat cancer with the whole world cheering him on. G’nite, sweetest dreams my loves.

Diamonds on the Inside Lyrics
Thanks DD <3

Ben Harper
I knew a girl
Her name was truth
She was a horrible liar
She couldn’t spend one day alone
But she couldn’t be satisfied
When you have everything
You have everything to lose
She made herself a bed of nails
And she’s planning on putting it to use
But she had diamonds on the inside
She had diamonds on the inside
She had diamonds on the inside
Diamonds

A candle throws it’s light into the darkness
In a nasty world so shines a good deed
Make sure the fortune that you seek
Is the fortune that you need
Tell me why the first to ask
Is the last to give every time
What you say and do not mean
Follows you close behind

She had diamonds on the inside
She had diamonds on the inside
She wore diamonds on the inside
Diamonds
Diamonds

Like the soldier long standing under fire
Any change comes as a relief
Let the giver’s name remain unspoken
She is just a generous thief

She had diamonds on the inside
She had diamonds on the inside
She wore diamonds on the inside
She wore diamonds
Oh – diamonds
She had diamonds
She wore diamonds
Diamonds

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.

The show must go on

My skinny little chicken leg boy is finally getting his appetite back. Finally. It’s been about 2 weeks since he’s really wanted to eat. Now, I can’t keep him full. He is back to eating every hour on the hour. Oatmeal, eggs, Peanut Butter and Jelly, Fruit, Pizza, Carrots, Hummus, Cottage Cheese, Peas, Cheese Crisps… I can’t keep up! All I’ve done today is cook, clean, cook, dishes, and cook some more. It’s a good thing though… his little legs look like sticks. I need to fatten my chicken up before we go into Stem Cell Transplant. We have a clinic visit tomorrow to check Ronan’s blood levels, platelets, etc…. I’m still waiting for him to crash from this last round of chemo; but so far, he seems to be doing well. His energy is still a little low, but his spirits are great. We have really been enjoying being at home together. Lots of cuddling and down time which we both have needed. Marisa stopped by today with Baby Max. It was so nice to see her and Ronan even let her stay. He shut himself in his room at first but I finally coaxed him out. He sat on my lap and watched Marisa feed and change Max. He was very intrigued and just sat quietly, giving us a little smile here and there. After Marisa left, Ronan told me that he wanted a baby sister. Oy vey! He loves babies has been talking all day about Baby Max’s visit. He told Liam and Quinn all about Max which then led to the discussion of baby names. It was hilarious. Liam said if he had another baby brother, he would name him, Ochocinco- for the football player, Chad Ochocinco. I told him no way, so then he decided on the name Zach, for Zach Miller, the former ASU football player. Quinn was really sweet and said if he had a baby brother, he would name him Finn and if it were a girl, Isabelle. Ronan has decided that he would name the baby, Mickey Mouse. So cute. I was surprised how into the whole baby conversation they were. Just shows me what sensitive and sweet little guys I have. I’m pretty sure the baby shop is closed around here, but it was a fun conversation to have with my 3 little guys.

Tricia came over last night and we went for a quick 4 mile run. It was nice to be out with her. It was no Central Park but it felt good to be out running and it felt good to be with her. We talked the entire time and laughed a lot. I know I say this all of the time; but I don’t know what I would do without her. I could not have picked a better Godmother for Ronan, and I could not have a more amazing best friend. I so owe Woody for the rest of my life for introducing me to Tricia. Thanks Woo:) I never imagined in my life that I would need my best friend as much as I do now.

Ronan didn’t nap today, and I am listening to Woody play guitar and sing him to sleep. There is nothing more peaceful than watching Ronan as he drifts off to sleep. He is so perfect. Have I mentioned how lucky I am to have the husband I have?? He left the house this morning, worked hard all day, came home, took Liam and Quinn to basketball, dinner, came home and helped them with their homework, and now he is singing Ronan to sleep. He doesn’t even get to sleep in our bed anymore due to Ronan taking over and insisting that he sleeps in bed with me and nobody else. Woody grins and bears this…I feel awful but this is just the way things have to be for now. There are not many men out there who would be able to do this on a day to day basis, and still have a good attitude about everything. He does it all, is constantly telling me how beautiful I am while watching me fumble and fall, all while trying to pick me back up over and over again. I would be nothing without him and I’m not ashamed to admit it. He is not the lucky one. I am.

So, for the most part, today was a good day. A good day now consists of things like Ronan having an appetite, a few smiles here and there, and having my family all under the same roof. A good day now is so simple…. how could have it been so complex before all of this? How was I not grateful for everyday that I had with Ronan when he was healthy?? I guess it was because in all of my wildest dreams, I would have never imagined that my worst nightmare would come true and I would be forced to reexamine everything that I thought made me happy. What a hard and awful lesson to learn through the eyes of a 3 year old boy.

That is all for tonight. I am actually in a good mood and don’t want to spoil it with my ever consuming dark thoughts. I’m going to enjoy some quiet time with Woody and finish the movie we started last night, “Harry Brown.” Sweet dreams, my friends. Love you all!!!

P.S.

S.B. I know I am going to dream the sweetest dreams tonight knowing you are dancing and drinking your wine under the moonlight and that everything is alright. xo

Ronan’s favorite song for Woody to sing and play guitar to.

All Her Favorite Fruit by Camper Van Beethoven

I drive alone, home from work
And I always think of her
Late at night I call her
But I never say a word
And I can see her squeeze the phone between her chin and shoulder
And I can almost smell her breath faint with a sweet scent of decay
She serves him mashed potatoes
And she serves him peppered steak, with corn
Pulls her dress up over her head
Lets it fall to the floor
And does she ever whisper in his ear all her favorite fruit
And all the most exotic places they are cultivated
And I’d like to take her there, rather than this train

And if I weren’t a civil servant, I’d have a place in the colonies
We’d play croquet behind white-washed walls and drink our tea at four
Within intervention’s distance of the embassy
The midday air grows thicker with the heat
And drifts towards the line of trees
When negroes blink their eyes, they sink into siesta
And we are rotting like a fruit underneath a rusting roof
We dream our dreams and sing our songs of the fecundity
Of life and love
Of life and love
Of life and love

Let the hiding begin….

Hello. Hope you all are well. I have officially gone into hiding. So much so, that my 3 besties had to bust into my house on Sunday morning to make sure I was o.k. I felt like I was on that show, “Intervention.” I don’t mean to shut everyone out; but it’s what I do best. Being home has been great and I have been loving spending time with Liam and Quinny. I could easily stay in my house and never leave again because when I do go out, the anxiety is still too much. Woody practically kicked me out of the house last night and made me go to a movie. I picked up Linds (my go to last minute girl… thanks mama) and we went to see “Black Swan.” Good movie, but I should have picked something a little less dark. After I dropped off Linds, I was driving home and the tears started up and I couldn’t get them to stop. I had to pull over because I couldn’t even focus on my drive. I’m not going to tell you what thoughts were consuming me…. but I’m sure you can guess. I still don’t think this is real. I still can’t wrap my head around the fact that my perfect little boy is so ill. It seems like yesterday that he had a head full of hair, and was running around always looking for trouble. I can’t tell you how much I miss that little boy. The little boy that I could never get mad at because one look at those bright blue eyes and that mischievous smile and I was done. I always ended up laughing at whatever naughty thing he did. Well, most of the time:) Now, I get to watch as he is too weak to walk and wants to me to carry him all of the time. Now I get to lay next to him and know that every breath he takes is a blessing and every kiss he gives me is a dream come true. Every tear that falls down my face is for him and I think about what sadness was like before all of this. Before all of this, sadness should have not existed in my world because I absolutely had nothing to be sad about. Everyday is a struggle for our family; nothing is easy anymore. I am doing what I can do to push through the motions, I am doing what I can do to survive. I am still numb to everything around me, except for pain. I feel that every second of the day.

We got a call from Radiology today and we have all of Ronan’s scans set up. February 2nd, Ronan will go under Anesthesia for his Bone scan. February 3rd, he will go under Anesthesia again for his MIBG, Pet scan, CT scan, and MRI. These two days are going to be very telling for us. After these scans, we will know exactly where the cancer is left in Ronan’s body and from here we will find out when we start the stem cell transplant. We already know that it is clear from his bone marrow; but the MIBG scan will be the most telling of them all. A MIBG (iodine meta-iodobenzylguanidine) scan is a test used to find tumors of a specific origin. This scan will light up Ronan’s whole body to show us where the cancer is still active. Of course we will be praying that it has diminished immensely. Ronan has come too far and worked too hard for it not to.

So, this is my update for today. Tricia was officially concerned because I have gone off the radar; so here you go Tricia Boo. I’m here, or I’m here as much as I can possibly be. I haven’t been talking to anyone so I hope none of you are offended. I miss you all but just need some time to get back in a routine at home. I miss my New York Miss Macy dearly. I will think about the time I had with her and Tricia in New York when I need to smile. The time spent with those two and Ronan meant the world to me. It felt so good just to be and laugh, even though we were in a hospital with my baby who has cancer. True friends that can make you smile and laugh during the hardest times in your life, are the truest of the true. I love you both so much.