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

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.