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 🙁

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

And the word of the day is……

I’m restless. I’m scared. I’m sad. These are my feelings tonight. I’m allowed. I’ve spent the majority of the night watching Ronan sleep. He is so peaceful, which gives me lots of time to think. Thinking tonight, is something that is not healthy for me. I tend to over think everything, go over every possible thing in my head, and do all of the “what if’s” that I am not supposed to do. But I do them. I am a mom and I think it is only natural. I wonder what all of you are doing. I imagine you are with your family’s, doing wonderful, beautiful things. I wonder if you know how lucky you are to have healthy kids. I could be sick if I sat and thought about how much of my kids being healthy I took for granted. I seriously thought that is just the way it was, and never gave it a second guess. I’m tired. I’m tired of being strong, hearing how strong I am, pretending everything is o.k. It’s not. No matter how many people tell me he’s going to be fine… it doesn’t make this any easier. Words are words. I want my baby back to how he was before all of this. I don’t want to cry anymore the thousands of tears I never knew I existed. I want my happy family life back. I want my friends back. I don’t want to have to go out to dinner anymore and talk about Ronan’s illness and have my friends be consumed and worried and sad for me. I don’t want anymore sadness. Where is the fucking magic wand to make this all go away??

Now, I would like to leave you all with my absolute favorite word of all time. If you have sensitive ears….. Earmuffs! I’m saying it loud and clear tonight so deal with it. Hey, at least it looks pretty. Peace out.

A change of plans

Ronan’s counts are not high enough to start chemo this week. What does this mean?? It means a lot… his surgery date will now have to be changed, as well as our flight out to New York. Trying not to stress too much… everything happens for a reason, right?? We will now get to spend Thanksgiving together as a family at our dear friends’, The Kotaliks. We will go back into the clinic on Monday to have his levels checked again. They have to be up…. we need to get his chemo started as soon as possible. I am going to relax and try to stay calm about this. Things will work out. I am going to take this as a very good sign that we were meant to all be together on Thanksgiving and I am very thankful for that alone.

On a good note, Ronan has gained 2 pounds this week! That is huge for such a little guy:) Mama has been feeding him well!!

Have a beautiful and blessed turkey day!! xoxo

P.S. I heart Tina Fey and this made me laugh.

Truest intentions, purest of hearts

I need to get my shit together today. My house looks like a bomb went off in it, I can’t stop crying, and I think I just picked my nightgown up off the floor and beat the crap out of my bedroom wall with it. Don’t worry. Ronan didn’t see this… he was playing in the other room. He did hold me though, while I cried in his lap. He patted my head and held me. I needed to let some things go today, and I did. Everyday is so different from the next. I never know waking up what the day will consist of, how I will feel, or how Ronan is going to act. The inconsistency in my life makes me nervous and anxious. Today, I have had a pit in my stomach the entire day and I can’t seem to get rid of it. The reality that surrounds us is overwhelming at times. Thank god for good friends who I can call on. My friend, Gay, called me right when I needed her most. My friend, Pamela White (who has been a GODSEND) let me vent and gave me advice…. Little Jack’s mom, Laurie, always puts me at ease. Just hearing her voice and the updates on Jackers helps me get though the days. To people who are walking to the end of the earth and back for us, to the people who refuse to let go of my hand, to the people bringing dinners and helping with Liam and Quinn, to the people who know just how to make me smile…. Please know how thankful I am for you. The fact that you are walking though this with us and supporting us so much, means the world to our family. We are so lucky and thankful for all of you. It speaks volumes about the kind of people you are in the way you choose to live your life and I will FOREVER be thankful, humbled, and amazed<3 You all have changed my life and the way I view the beauty of family, friends, and strangers. You have taught me to question everything and accept nothing but the best for me and my family.

Last night I went out for dinner with 3 of my dearest friends. I was able to let go a little bit and live in the moment surrounded by strength and love. I went to the best restaurant in town, Tarbell’s, with my friends, Niki, Jen, and Lindsey. The place was packed, food was amazing as always, and the service was above and beyond. And it has nothing to do with the fact that I was with the bosses wife;) I sat with my 3 darlings, for 3 hours. We shut the place down and I left there feeling extremely blessed to have spent the evening surrounded by those 3 incredible women. They are more than friends to me; they are my sisters. I would trust them with my life and the life of my children. They are the type of friends who would never let me down or let me fall without picking me back up. I need them more than ever at this time in my life. I get that I am asking a lot from my friends right now…. but my true friends, are the one’s I have to ask nothing of; they just give and do because  they have the inner strength to see me through this. Their intentions are true and pure… there is no bullshit or superficialness. I worship them and if the tables were turned, I would be there for them in a heartbeat. They know this of me… they get the bigger picture of all of this.

Once Liam and Quinn got home I put everything that has been going on inside my head, on hold. I made them a snack, took them for shaved ice, and we went outside and played in the backyard for 2 hours. We took every ball in our house and put it in our big, grassy yard and played soccer and dodgeball. Ronan had a BLAST. He ran, kicked and threw his balls for an hour straight. The strength and power that boy has when it comes to anything physical is insane. He is so coordinated and fast. We took a bunch of glow sticks when it got dark and shaped them into frisbees and threw them up in the air and at each other. It was an evening full of laughing and playing. Woody came home, scarfed down some dinner (thanks Jules) and took Liam and Quinn over to The Village for basketball practice. My poor, tired, husband. He worked so hard today.. and I can tell he is exhausted. But he will never let us down or complain about anything. He came home with a smile on his face and a big kiss for me and off to practice they went. Love that man.

I feel like a kept woman with Ronan. Seriously. The little man decides my every move. I’ve got to get some control back with him. My sweet Sarah, whom Ronan LOVES… came over to peel me off my floor today. Ronan threw a fit about having her here. I can’t win. I need help, want help, ask for help…. but Ronan is so territorial of “his house.” He wants nothing to do with visitors and ends up slamming doors and screaming in his room the entire time someone is here. And Sarah is like family to us. He let her stay for a little bit after I bribed him with a toy and we played Star Wars with him. Sarah took over with the playing and I was able to get a few things done around here. Then we “locked” Sarah in the laundry room (that was the only way he would let her stay) so she could fold my laundry. Sarah the Saint. She has been so helpful to me and I know she would do whatever I needed her to, if Ronan would just relax a little. I have a list a mile long of things I need to get done before we check into the hospital for Round 4 of chemo on Monday. Tomorrow, we go to the clinic and I am hoping to help in Liam and Quinn’s classroom for their Halloween party. That leaves me Friday to get everything done. The weekends are usually pretty busy around here and I don’t want to spend my time getting caught up when I could be spending it with my boys.

So tired tonight… but one last thought….All of his kisses mean that much more. Every smile, laugh, hug, I love you, that come from Ronan, wash away all of the sadness and anger that I feel… for a few moments. It doesn’t last long, but it is oh so sweet.

“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” -Dr Seuss (Thanks Dana)

Angels waiting in the wings

I am amazed at the people who have come out of the woodwork to help us. People that we know and complete strangers just because they are touched by Ronan’s story. I put something out into the universe today… and I am getting amazing responses. People who are willing to go above and beyond to help us any way they can. It is people like this that the world needs more of. Selfless people who stand by their word and pour all the energy they have into helping out people like us. I’ll never look at the human spirit the same again.

All has been pretty quiet around here. Ronan is still storming right a long. He had a few fits today….bouts of anger and hitting me for no reason. Well, I guess he had a reason…. his reason. He was that angry that Liam and Quinn were not home. He likes to take it out on me and when his little temper hits, I bear the brunt of it. Not fun to see or watch. He’s like Dr. Jekyll and Mr. Hyde. I never know what his moods are going to be like. I am doing my best to discipline him but sometimes nothing works and I’ve come to find out I just have to let him let his anger out. He’s got to be angry about a lot and I know he is having a hard time processing what he is feeling. It’s heartbreaking. I keep telling him that we will get through this and he will get better. He talks all the time about getting his “Iron Man” out. I don’t blame the kid.

We go to the clinic in the morning and then Mimi Kay and Kathy are going to watch Ronan so I can get some things done. It will be nice to get out of the house and take a break from Ronan. I am meeting my friends Jen, Bethany, and Trish for lunch and to go over some things for Ronan. I am so lucky to have girlfriends who are willing to drop whatever to see me and work on some ongoing projects with me. All of their support has been keeping me going.

I can’t believe the holidays are right around the corner. It’s my favorite time of year to live here. I am hoping to take Ronan to a pumpkin patch this week or next. We will of course talk Liam and Quinn as well. Last year we lived at the pumpkin patches and I took all of the boys half a dozen times. We are a pretty active family and I love taking my 3 little guys off for adventures. It’s been awhile since we’ve done anything like that. Ronan seems to be feeling just fine so a pumpkin picking we will go.

I’m still trying to find my balance and where my life fits into all of this. Before this happened, my life consisted of a daily routine of healthy outlets. I’ve let all of those things go and can’t seem to get back into them. I miss my workouts, running, hiking, boot camp, etc…. Any time I have free from Ronan, I find myself feeling guilty. I feel like I need to be with him 24 hours a day. I know that’s not realistic or heathy, but time away from him feels selfish to me. I know I need a break and I am going to try to start doing some things again. To be quite honest, I feel like if I put myself back out there, there world is just going to swallow me whole. It’s that whole anxiety thing that I’m now dealing with I guess. I feel safer trapped inside my little bubble with my little guy by my side. It is something I will continue to struggle with but I will also continue to work on. There has got to be a happy medium somewhere… it’s just going to take work to find my new comfort zone.

It’s 3:10 in the morning now. I’ve been up off and on all night long. I finally feel like I am tired enough to sleep a few hours. Thanks for reading this, thinking of us, and praying for our family. Love to you all<3 Goodnight, friends.