Hospital Reality sucks

We moved out of the POU (Pedatric Oncology Unit) today and into a different area of the 9th floor. I wish we could have stayed in the POU, but moving to this room is a step up as far as getting us out of here. The POU only has 3 rooms and they are so private that you never see what is going on with the other patients there. The room we are in now, is just like the 2nd floor at PCH. Except worse in a way, because the kids seem so much sicker. I cannot even tell you what I have seen on this floor today, but it is something a mother should never have to see or experience. Let’s just say, it left me in tears most of the day. One room in particular is covered in signs about heaven and God and through the window I saw a mommy feeding her baby ice chips, scooping them into her mouth. The doors here are covered in posters that say things like, “Be strong, Be positive, Be brave.” I have had that empty pit in my stomach the entire day again and it is once again thoughts are filling my head like I can’t believe my baby is in the cancer club now. I have been so positive and upbeat lately… this has kind of thrown me for a loop. On top of it all, Woody left today and I guess I need him around more than my independent self thinks. I was so spoiled by having him here with me the entire time. He gives me so much strength and we are such a great team. We have a roommate too. I think the little girl is about 11 and has bone cancer. That’s what I’ve picked up on so far. There hasn’t been a lot of time for chit chat. Ronan spent the day walking around some more. Still trying to do everything himself. He is so sweet. Everything is always, “Please help me.” or “Please hold my hand.” or “Please get me a drink.” He says please before asking me to do anything in his squeaky little voice. He is hurting so badly but is too proud to tell me.

I met a new friend today named Ed. He is somebody that my friend, Niki, reached out to after hearing his story about his son, Jack, and his battle with Neuroblastoma. Jack fought long and hard, but passed away at age 5. It was hard meeting Ed today, the pain in his eyes was undeniable. From the second I saw him though, I felt as if I had known him forever. He sat with me for about 2 hours and we talked about everything. It was comforting to me and hard at the same time. He said it was therapeutic for him which I was surprised to hear him say, but it says a lot about the type of man he is. He left me with a big bear hug and I had tears in my eyes. Today was a very special day and I feel privileged to have learned about his journey. He has been through hell and back and is still standing; with a smile and a laugh that will melt your heart.

Tonight, is the first night that I am really homesick. I guess it’s true…. my home is wherever Woody is, because I know that is why I am feeling this way. Also, I really miss the twins. My heart ached when I talked to them on the phone tonight. I hate being away from them. We are almost done with New York though… I am going to make the most of these next couple of weeks. So glad Tricia gets here tomorrow. That is going to make me a lot less homesick.

Ronan is doing well and Dr. Angel (La Quaglia) came to visit. Ronan gave him a big smile the entire time he was here. It’s like the two of them share a secret now… they have a special bond. My friend Pam’s husband, Larry, told me that Dr. La Quaglia walks on water to them. I couldn’t agree more.

My Xanex, that I NEVER take, is starting to kick in. Thank god. I was feeling like I was going to jump out of my own skin all day today. I need a night of sleep without nightmares. My dreams are so vivid anymore. The night before Ronan’s surgery, I had a dream all about it. Everything turned out perfectly, Ronan was fine, and then Woody had to share the news with me that he had an inoperable brain tumor. WTF is that all about?? My baby was saved, but my husband was now dying. I remember everything about that dream so vividly, down to every single person that was in it. I woke up thinking it was real. I’ve never had dreams like this in my life. They are so real, it is scary. Sleep is hard now because I wake up so often, because of a nightmare or because of worrying. Hopefully there will come a time when it will once again be peaceful for me again. WIth that said, head hitting the pillow, asap. G’nite, sleep tight, love to you all.

xoxo

Baby’s incision 🙁

Update two…. still kind of generic

Maureen, the lady who is assigned to everyone just came in. She is actually able to go into the room to check on Ronan and Dr. L. She said he is making progress, Ro is doing fine, but there is still a lot of work to do. She talked about Dr. LaQuaglia and how meticulous and tedious he is. He’s not in there screwing around; he is focused and he is the best. Maureen has been doing her best to keep us as updated as possible, thank god. I am crawling out of my skin. I asked her if she thought Dr. LaQuaglia would let me see the tumor. She said, it depends on his mood. He may not want me to, because he thinks it will forever be seen as something negative to me. I don’t care about that…. I just want to see it for real solid proof that it is out of my baby. Also, I am curious as to what it looks like. I would tell you all what I would really like to do to it, but that would involve waaaaaay to many swear words.

So, I will leave you with this; FUCK YOU MOTHER FUCKING CANCER!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Also, I am listening to Pandora right now and Christina Aguilera’s song Fighter is on. How fitting.

When I, thought I knew you
Thinking, that you were true
I guess I, I couldn’t trust
‘Cause your bluff time is up
‘Cause I’ve had enough
You were, there by my side
Always, down for the ride
But your, joy ride just came down in flames
‘Cause your greed sold me out of shame, mmhmm

After all of the stealing and cheating
You probably think that I hold resentment for you
But, uh uh, oh no, you’re wrong
‘Cause if it wasn’t for all that you tried to do
I wouldn’t know just how capable I am to pull through
So I wanna say thank you

‘Cause it makes me that much stronger
Makes me work a little bit harder
It makes me that much wiser
So thanks for making me a fighter
Made me learn a little bit faster
Made my skin a little bit thicker
Makes me that much smarter
So thanks for making me a fighter

Oh, ohh

Never, saw it coming
All of, your backstabbing
Just so, you could cash in
On a good thing before I realized your game
I heard, you’re going around
Playing, the victim now
But don’t, even begin
Feeling I’m the one to blame
‘Cause you dug your own grave, uh huh

After all of the fights and the lies
Yes you wanted to harm me but that won’t work anymore
Uh, no more, oh no, it’s over
‘Cause if it wasn’t for all of your torture
I wouldn’t know how to be this way now, and never back down
So I wanna say thank you

‘Cause it makes me that much stronger
Makes me work a little bit harder
Makes me that much wiser
So thanks for making me a fighter
Made me learn a little bit faster
Made my skin a little bit thicker
It makes me that much smarter
So thanks for making me a fighter

Update One…. kind of a generic one

One of the nurses that comes out into the waiting room to give everyone updates, came to see us. She said Ronan went to sleep beautifully, they have started, and he is going great. I think she saw what a wreck I was so she put us back in a private room to wait.

I just listened to my 15 voicemails from today and you all made me cry…. Niki, Charisma, Lindsey, Gay, Stacy, Marisa, Susie…. I love you all so much. All of your words are were beautiful. I am so thankful for my dear friends and all the strength you all have. Also, my text messaging, blog, and FB friends…. thank you for letting us know you are here with us today. We know you are, Ronan knows you are, and we think of you ALL as angels surrounding him. I never knew so much love existed in the world. Thank you all for showing it to me.

Here’s to Ronan and our Surgeon of the Angels

I carried Ronan all the way to Sloan this morning. He held on to me tightly and we talked all about what was going to go on today and how he has an angel for a doctor who is going to get the tumor out of his tummy. He seemed excited and I told him how strong and brave he was, and how he was going to grow up to be a healthy amazing boy, and I would always be by his side. He listened and smiled a lot. And then asked about going to Atlantis after all of this is said and done. It’s his make a wish dream that he wants to come true. I promised him we would take him there and swim with the dolphins after he gets his broviac out. That is going to be the best day ever.

Here we go. Ronan is back in surgery. It took 3 doses of the “sleepy meds” to even calm him down. Woody’s exact words to me were, “How do you like how they had to give him 3 doses of that medicine… he’s a little fucker, just like you.” LMAO. Oh, he makes me laugh at the worst possible times in my life. They let me put on scrubs and carry him to the operating room and place him on the table. He was laughing at how funny I looked in my “bunny suit.” He was pretty out of it, but still thought I was funny. I hated leaving him and I wish I could stay by his side the entire time. Leaving him there was the hardest thing I’ve ever had to do. I left him, tears pouring down my cheeks and Woody was waiting for me on the other side. Somehow, we made it down to the floor where we are supposed to wait. I left Woody and made a couple of phone calls and ended up locking myself in a bathroom to call Auntie Karen. She talked to me and let me cry to her. She was my saving grace; as always.

So now we wait. They said they would come and update us every hour or so… I will keep you posted. Lots of prayers and love today. We are so lucky to have the best doctor in the world operating on our child. After this is all done, I am going to give that man the biggest hug in the world.

P.S. Happy Birthday, Wesley Tarbell. We love you little man and just know it is a good sign that Ronan is having his surgery on your birthday. Miss you!!!!!!