Deep breaths, Patience and Xanax

Fork em' Devils!

What a long day. We don’t know anything yet but should know the results by tomorrow afternoon/evening. Now Dr. Eshun will meet with a team of doctors to go over the results of all the scans combined, with a fine tooth comb. Waiting is the hardest part. Sleep is going to be extra difficult tonight. UGH. I hate these nights.

Today, we started out at the clinic just doing Ronan’s normal labs. He needed to get blood, but we did not have enough time to do it before we had his MIBG scan. We will go back tomorrow for a transfusion as his counts were a little low. We did have some time to kill in between the clinic and our scan time so we went to the car wash and ran home for about 15 minutes. We then headed back to PCH to get ready for Ro’s scan. He was in a pleasant mood today and was excited as always to see Dr. Maze. We brought him a coffee and Ronan introduced Dr. Maze to his favorite show that he was watching on his iPad, Max and Ruby. Dr. Maze and our favorite of his helpers, Angela, were eating Ro up like always. We had some fun play time with them before it was time for Ronan to get his “sleepy medicine.” We did the usual, I held him, and Dr. Maze injected him. Ronan cried out his usual, “Mama, Mama, Mama!” I put on my brave face and gave Dr. Maze the look he knows so well now, which is, take the best care of my baby ever. I don’t even have to say the words anymore. He knows and he does. So thankful.

I walked myself out to the waiting room where Auntie Karen and Fernanda sat waiting for me. I am so glad they were there to keep me company today. They kept my mind occupied and I am so happy the two of them finally were able to meet. I am so used to going to PCH alone and by myself and I never realized how much work it is for me. Today, after Ro came out of anesthesia, Fernanda went and got my car for me so I didn’t have to walk all the way to the parking garage while carrying my bags and Ronan as I usually do. Today was easy and I am going to try to make myself take the help from my friends more often. It makes all the difference in the world. They kept my mind busy and my spirits happy. Thank you both for today…. I know I tell you all the time, but I love you so much. Ronan woke up a little grumpy and just wanted to get out of there asap. That is precisely what we did.

We came home to Mimi and Papa helping Liam and Quinn with their homework. Ronan was starving so I made him his favorite scrambled eggs and he scarfed them down. Woody came home soon after and we snuck out just the two of us for dinner. It’s been so long since just the two of us have gone out alone. It was nice to just sit with my husband and try to be as normal as possible. I caught myself laughing easily at his funny stories and we got caught up on our plans for the weekend. It was a very nice, much needed night together. My mom comes into town tomorrow until Monday and I am so very excited to see her. It should be a busy, fun, weekend <3

Fernanda sent me a text tonight that melted my heart. She said one of her little boys’, Brando, who is four, was at school today and a little boy asked him where his mommy was. Brando told the little boy that his mommy was at the hospital helping a little boy grow back his hair. That is one of the cutest things I have ever heard and filled my heart with so much joy. Fernanda is doing so much more than that; she is teaching me what it truly means in life to be an amazing person to the core. What it means to live a life full of passion, laughter, and love with just the right about sass to go with it. Fernanda is the kind of women who can light up a room with her quick wit and bright eyes. I told you she has the same sparkle in her eyes as Ronan and I find so much comfort in that. Even though what we are going through, sucks balls, I am so thankful for the beautiful souls that I am surround by. If not for this, I would be missing out on all the loveliness that has surrounded me for so long, but I just didn’t know how beautiful it truly was until now. Everyday is a combination of heaven and hell…. it’s a beautiful, tragic love story to the fullest.

Deep breaths tonight. Hot Yoga at 5:30 a.m. Yes, please. I will be there and I will be focusing all of my energy into my Ronan baby like I always do. We need some good news tomorrow. Please.

G’nite and sweetest dreams to you all. Love you for checking in on us and loving our little Ro so much.

xoxo

Yoga, Hiking, and Tears

What a busy, yet peaceful day. I started off my day joining my friend, Stacy, for a hot yoga class. An hour and 15 minute class where I was drenched in sweat and tears almost the entire time. I have not done a yoga class in years, but it has been something I have dying to get back into. It was almost too much… intensity wise. I felt broken, vulnerable, sad, yet strong and calm too. Stacy looked over at me at one point while we were standing up doing our poses and saw the tears pouring out of my eyes. She came over and held me for a minute and then asked if I needed water. She then goes, “What about Coconut Water? I have some!?” She made me laugh out loud at that one. Ah yes, Coconut Water makes everything all better. We had some after Yoga and it was the best Coconut Water that I’ve ever had in my life;) Thank you Stacy for the yoga today… I really hope to get a bunch of these classes in before we start isolation. It is a good way for me to let everything go and release all of the things I am feeling.

After yoga, I came home showered and got ready to head over to The Village for Liam and Quinn’s basketball game. I took Ronan with me. He was in heaven and spend a lot of the time helping Woody coach. He even had his own whistle hanging around his neck. It was adorable and he loved being out with his brothers. Liam and Quinn did great as always. They are such good little basketball players. Watching them play basketball is one of my favorite things to do in life. I am so thankful I was able to go today; it meant a lot to all of us.

After basketball we came home and I took a long nap. I think the hot yoga and all the crying I did this morning did me in and I had a bad headache the entire day. I felt better after I woke up and around 5 I headed out to church, a.k.a. hiking. I needed an active day today. It has been way too long since I’ve been in touch with nature and hiking is something that I have been missing so much. I ran up the mountain, watched the sunset, and prayed my ass off. It was one of the most gorgeous evenings tonight and hiking always clears my head. Today was absolutely perfect in every way.

The boys’ have their cousin, Luke, staying the night tonight. He is a fifth grader at their school and all three of my guys idolize him. Woody took them to play basketball at The Village and then to pizza tonight. If my boys’ turn out to be anything like Luke, I will feel like the most blessed mama in the world. He is a parents dream come true. Such a sweet soul, funny, and is so good with all of my boys’ but especially Ronan. We love having him here and spending time with him. I think it is really good for Liam and Quinn; it is good for them to have somebody to look up to who is a little closer to their age. Thanks Heidi for letting us borrow your Lukey. We love him like one of our own:)

Tomorrow we are having another low key day. I’m going to breakfast with a few girlfriends to go over isolation things in the morning and then we are planning on watching the Superbowl over at Uncle Jay’s house. He lives right around the corner so if Ronan gets too tired, I can just walk him home. I may try to sneak in another hike before my insanely busy week starts. My body is already beyond sore and it is a feeling that I miss so much. Before all of this exercise was my stress relief. It’s hard not to have the consistency of that in my life anymore as I don’t have any other outlets. I’ve got to make the most of these couple of weeks before transplant.

Ronan is curled up beside me. Luke has been in my room reading him some books and cuddling up with him. So cute… he loves to love on Ronan. It has been such a nice family night at home tonight.  We have really been needing this time together. I’m finally getting a little sleepy so time to shut things off. Hope you all had a great Saturday; thanks for checking in with us. Sweet dreams!!

xoxo

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 . . . .

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