Mama and Ro baby take NYC <3

Ronan and I arrived to NYC yesterday morning 5:30 East Coast Time. The flight was great, fast and Ro slept the entire time. We headed to our hotel, checked in, and we were in our room by 6:30 a.m. Ronan was chipper and ready to play, but I told him how it was really only 4:30 in the morning at home so we needed to rest before our big day. He didn’t put up much of a fight, crawled in bed with me and we slept a couple of hours. You’d think I’d be a zombie tonight but I’m not. Must be that NYC energy. We woke up, got ready and headed over to Sloan Kettering. As soon as we arrived to the 9th floor it was party central. They were having a parade for Marti Gras. Ronan loved watching all the action. We spent the next 4 hours having labs drawn, getting his MIBG scan injection, and had an Echo test done on his heart. It was a very long day but we killed a lot of time by playing in the playroom and doing arts and crafts. As much as this sucks, today I found myself having the time of my life with Ronan. I feel so lucky to be able to spend so much time with him. I cherish every second I have with him so much. As the day was ending, we went to finish our last thing which was the Echo test. An adorable girl named Penny took us back into her room and I laid down on the bed with Ronan so he could rest on top of me while she did her thing. The test is really simple and was done in about 20 minutes. Ronan ended up falling asleep on me so I sat and watched Ronan’s little heart on the screen as it pitter pattered away. Penny kept telling me how beautiful and healthy it looked. As soon as Ronan’s little heart started beating away and we could hear it, I completely lost it. I told Penny I was sorry that I couldn’t stop crying and she smiled sweetly and told me that it was totally o.k. I explained to her that hearing his heart beat like that reminded me of when I first heard his heartbeat on an ultrasound. I will never forget what it felt like to hear his heart for the first time and now this. Who would have thought in a million years that I would be listening to Ronan’s heart on a monitor again due to cancer. So. Freaking. Unfair.

After the Echo test we scooted out of Sloan quickly to go back to our hotel and meet one of Auntie Karen’s best friends for dinner. We met Krista at Serendipity and it was such a treat. I’ve heard about her forever and it was so lovely to finally meet her. We had a nice dinner and Ronan and I shared the to die for Frozen Hot Chocolate. He was beyond tired from his day and ended up falling asleep in my lap. Krista and I had a chance to finally get to know each other and I can see why Auntie Karen loves her so much. She was a delight:) Just as we were leaving, Ronan woke up not a happy camper. We were going to take him to Dylan’s Candy Shop, but I decided that we’d better just head back to our room. Krista got us a cab and sent us on our way. We came back here and  talked to Woody, Liam, and Quinn via Face Time on our Macs. Ronan got a big kick out of that. The rest of the night was spent just hanging out and playing. Ronan finally fell asleep a while ago and he has no idea what we have in store for tomorrow. I have yet to tell him that he has to get his MIBG scan. UGH. He is going to be beyond mad that, 1) he has to get his sleepy medicine and 2) that Dr. Maze is not the one giving it to him. I did not want to tell him any of this today because I know he will sit and obsess over it. I’m not telling him anything until right before we go back so they can put him under. I am nervous for this MIBG scan even though we just had one not too long ago. Ronan has been complaining of his right arm hurting for a few days now. I had one of the doctors look at it today and we cannot see any bruising or swelling. So, of course my mind goes to the worst place possible which is something I’m not going to even say out loud. We will know by tomorrow if anything new is going on. I am sick to my stomach tonight. Ronan has also been complaining of his right leg hurting and I have pretty much been carrying him everywhere. I noticed him limping tonight. This has been going on for a while now and has been something we have just been watching closely. As I said before, if anything is going on, we will know by tomorrow. Pray that it is not. I’m thinking positive and just keep telling myself it is his bone marrow healing or growing pains. Please let it be one of those things.

As of now, our plan is to stay here until Thursday or Friday. We will then return around March 20th and that will begin our 5 week long stay. Woody will be coming out with me during that time for a while, thank god. It is really hard to be here without him. He is such a big help to me when he is here. We both really miss him this trip. It’s hard to be a single mom, in a different city, when your kid has cancer. It’s hard but I am strong and know I can do it. New York is going to be the best adventure yet.

That’s all for tonight. Sleepiness is starting to kick in. Let’s just hope it lasts. I am tired of waking up every night at 3 a.m. and not being able to go back to sleep. I call it the witching hour around here. G’night, sweet dreams, and lots of prayers for our Ro baby tomorrow. Love to you all!

xoxo

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