No news is good news, yes??

I find it impossible that I am even still standing after today. Let alone, writing this post. I’m not sure how I’m even awake at this point. I didn’t much sleep last night and we woke up early to get Ronan ready for his day. He was mad that I woke him up from his peaceful slumber and even more mad that he had to drink his contrast before we could head to the hospital for his CT scan. I power talked him though it, although he fought me the entire time. Ronan is such a hard headed little boy and after battling with him almost the entire day, I am mentally beat. There was a lot of distracting, playing, bribing, and threatening today to get him through what we had to do. I have am so glad to be in our bed and over with today and am not looking forward to tomorrow at all. Scan days are always brutal and I know 110% that I would have crumbled today had it not been for Fernanda. She was such a big help.

We arrived to the clinic and were told that Ronan needed platelets again because his were still very low despite the platelets he received yesterday. We had plenty of time before our CT scan was scheduled so we went and got his platelets started. While we were getting them, Ronan fell asleep on the little couch next to me. Fernanda and I sat and watched him sleep and quietly talked. We both tried to block out the sounds of the screaming boy next to us who was about Ronan’s age. The poor thing must have screamed bloody murder for a good half an hour. I felt so helpless and so sad for the child and parents. I told Fernanda sometimes watching the parents go through this is almost harder than watching the kids. It is a lose lose situation for everyone involved and never gets any easier to see.

After Ronan was finished with his platelets, we headed down to get his CT scan done. I must have been told by 5 different people that he needed to be ready for anesthesia, even though I told everyone that he didn’t need it today. We got down to the CT room and sure enough the nurse came up to me and on her piece of paper says the word, Anesthesia, in big red letters. As soon as I saw this I told her that Ronan would not need anesthesia today. She looked at me like I had three heads and said that she wasn’t told this but that we could try it without, first. We went back to the room and I put Ronan on the table as he clutched onto his Star Wars guys. I had prepped him all morning for how he had to hold still and how it was going to be a piece of cake, just like radiation. He understood the drill and was very excited that I was able to stay in the room with him this time, unlike RT where I had to leave him all alone. The whole CT scan took about 10 minutes. He held so still and I acted out a scene from Star Wars for him with his Clone Troopers and told him all about the secret mission they were going on with him. He smiled the entire time and listened with his big eyes looking up at the CT machine. I was so proud of him; once again. He truly amazes me with how brave and strong he is. When we finished, all the techs told them how great of a job he did and he gave them all knuckles as he walked out the door. Such a little Rockstar, my Ronan.

I’m not sure where the rest of the day went. We had to wait around forever to get Ronan’s MIBG injection for tomorrow’s scans. We ran out for a bit and went to Dylan’s Candy Shop which I am totally over at this point. Four trips there, in the past 3 weeks for overpriced candy and you cannot even move in the store due to it being jam packed with people. If I never have to see that place again, I will be so happy. And this coming from me, an avid candy connoisseur, is huge. I’m done with that place. After Dylan’s, Fernanda was about to pass out from being on the “Maya diet,” which consists of not eating, so I took her to 4 carrots to eat. I pretended to eat a half of a sandwich for her, but she busted me and gave me a very stern but loving talking to about my lack of food. Ronan and Fernanda ate which was all that mattered to me. I did take a small Fro Yo to go and ate the whole thing for her. That’s the best I could do today.

I asked a few times if Dr. Kushner would read the results of the CT for me today and I got put off which I kind of expected. Everybody reassured me that if there was something that was not good, he would have come to talk to me. I hope they are not eating their words tomorrow. I’m going with the no news, is good news approach tonight so I can hopefully sleep a little easier.

We got back to the RMH later this afternoon and Fernanda hung out for a while. I practically had to force her out the door and told her to get some rest even though she tried to say she was coming back later this evening. I was not having it as she needs her rest too. My friends, Ed and Diane who are in town with their two little boys came by to see us. We had been looking forward to seeing them all day. They came armed with enough toys for Christmas. Ronan was in heaven not only because of the toys, but even more so because he had two boys to play with. He should have been wiped out from today, but he ran around here and played with those two until 9:45 tonight. It was so good for him and made him so happy. Thank you, Ed and Di. You two and your boys were just what we needed after a long and hard hospital day. I am so blessed to call you my friends.

Alright my dears. This is all I have tonight. I hope you all had a beautiful day full of many blessings. Tomorrow is a huge day for us and I am going to be channeling all of your strength and love. Sweetest dreams to you all.

xoxo

Strangers on the Streets

Ronan and I slept about 9 hours last night. We both needed it as we were wiped out. After we woke up and got ready, we headed off to the clinic to have his labs drawn. He was not excited about going to the hospital today, but I promised him a trip to Dylan’s Candy Shop after. A little bribery works every time:) We went to the clinic, had Ronan’s labs drawn and I must have had my cancer brain completely turned on because instead of waiting around for his counts to come back, we just left. I don’t know where my head was today. I took Ronan to Dylan’s and then we went to Bloomingdales, Four Carrots, for lunch. I can thank my friend, Ellen, for introducing me to this spot. Ronan ate a ton and I let him have the worlds best frozen yogurt afterwords. He was in heaven. After a few hours out in the city, we started our walk back to the RMH. I looked at my phone and realized that I had missed a couple of calls from Sloan. I listened to the voicemail and it was one of the nurses saying that Ronan needed platelets as his counts were only 18,000 and they like to keep them over 30,000. Major cancer brain mush on my part. I said we could come back in, but I knew how upset Ronan was going to be. The nurse told me as long as we could come in early tomorrow morning, it wasn’t a problem. Good thing. Getting Ronan to go back to the hospital would have been a major ordeal. We came back to the RMH and I fed him dinner. We spent the rest of the evening playing in the playroom and then we came back upstairs to give him a bath. He didn’t nap today so he is pretty beat. He fell asleep about an hour ago and I am thinking he will be out for the night. We have an early day tomorrow so that is a good thing. Fernanda gets in at 6 a.m. and I cannot wait to see her. I could really use some of her amazing strength to recharge me right now.

While we were out in the city today I tried my hardest to ignore the looks we now get from strangers everywhere. The looks from strangers on the streets are now looks of pity, looks of sadness, and as strong as I try to be… these looks kill me. It is a constant reminder of what we are up against. Most people are extra sweet to us, everybody says how beautiful Ronan is, and I must have been asked 1o times today how he is doing. What am I supposed to say to this? I say the only thing I can; while fighting back the tears and plastering a huge smile on my face. I say he is doing great and is a very strong little boy. I am sure these strangers on the streets only have the best intentions, but all I want is feel normal for 5 minutes out of the day. All I want to do is to not be felt sorry for. I guess this is why I am so comfortable in our hospital environment. Being out in the real world takes so much energy and can be so draining. I feel like I am on constant guard to not only protect Ronan, but myself as well. When I’m out in the real world, with Ronan, my guard is up 110%. I wish I could tell these people, stop with the looks of pity, instead take this gift of mine and go and do something amazing in the world. Go make this world a better place because you are inspired by my sweet baby boy because your own problems aren’t half as bad as you think they are. I swear I’m going to start wearing a sign around my neck that says this. Ronan is something to be inspired by, not something to feel sorry for. Yes, he has a tough road ahead of him but he will win this fight and be an even more amazing of a human being because of it.

Alright my sweet friends. I never indulge in T.V. anymore but with Ronan sleeping soundly, I’m going to enjoy my favorite reality show, “Bethanny Ever After.” I love Bethanny Frankel and her show. She cracks me up. I hope you all had a wonderful day and have an extra sweet night. Love you all.

xoxo

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

Goodnight moon

Home. After over a month of being in and out of hospitals, between Sloan and PCH… we are home again. So sweet. Yesterday, Ronan’s ANC was only at 80… today it jumped up to 240! That is very high for just one day. Ronan’s little body is fighting so hard to come back after being beaten down so badly. After Arica, our amazing friend/nurse, told us the great news about Ronan’s ANC.. she still wasn’t sure if we could go home or not. She said she didn’t want to get our hopes up because we were scheduled for scans as an inpatient for tomorrow, so that may mean they may just make us stay the night again. My sweet friend, Fernanda, came to sit with Ronan so I could run home and shower. She texted me about a half an hour after I left to tell me the doctor came in and told her that after Ronan received a transfusion of platelets, we could be on our merry way. I was so thrilled to hear this news as I was not expecting it:)

When I returned to PCH, Ronan was sleeping and when I walked into his room I had to laugh at the snow cone tent/stand that Fernanda bought for Ronan, along with his very own snow cone maker so they could sell snow cones to the nurses. Can you even stand the cuteness of this right now?? I can’t. It was the most adorable thing ever. What an amazing heart and imagination she has. Arica was telling me that when they were making snow cones, all of the nurses were like, “What is that all that noise?” Arica said she was laughing and told them, “Oh, don’t worry.. it’s just Ro making snow cones with his snow cone machine.” Only Ronan with the help of Fernanda would pull something off like that while stuck in the hospital. The thought of the two of them doing this together makes me so happy. Thanks, Fernanda, for everything. For all your help with Ronan these past couple of weeks and hauling all of our things to my car for me today. I don’t know how I would have managed without you, my dear:)

As we were getting ready to leave PCH, we were waiting for one of our doctors, “A” to come and talk to us about the weeks upcoming events. She arrived from the clinic all flustered, panicked and excited. She was jumping up and down about Ronan’s ANC and said how amazing he was that it spiked so high in one night. Talk about being passionate about her job. I love seeing that in someone who is caring for my child. A lack of passion in life is fatal. I have always felt this way and seeing “A” as often as we do, she is one of the most passionate people I have ever come across. Makes me love her even more. She told us that one of the scans Ronan was supposed to have this week, the MIBG scan had to be delayed due to the iodine not being able to get here from Canada due to the big storm. I told her not a big deal at all, as I know the situation is not in her hands. She was also trying to figure out a way to squeeze in one of Ronan’s bone scans tomorrow with all of his other scans, so we could limit the amount of times that he has to be put under anesthesia in the next two weeks. The only problem was Dr. Maze had a certain time blocked out for Ronan’s anesthesia, and throwing another scan in cut into something else he had scheduled. His office didn’t think he would be able to do it so they were going to have to get somebody else.  Just as she was telling me this, she looked down at her phone and started jumping up and down saying, “Yes, yes, yes! Thank you!!!” She then told me, “Nevermind, Aubrey moved whatever he had and will be there to do all of the scans.” She was smiling and saying how she was going to have to bake him cookies now for this one. What a good friend and a good man he is to us. He knows how important it is to us to have him do Ronan’s anesthesia. Thank you, Aubrey…I have decided that you are first a good man, and than a good doctor 😉

Ronan had his EKG and Echo Heart scan done today just to make sure everything is working properly. He was of course a great little trooper about having yet another thing done to him. I did have to bribe him into leaving his room to go for these scans by letting him take the 5 pounds of candy that Macy sent him from New York. Thanks Mace! Nothing like a little candy straight from Dylan’s Candy Shop to get the morning started! You spoil my child rotten and he loves you all the more for it! I love you for making me laugh the entire day with your ridiculously funny 4 minute long voicemail. You have no idea how much I needed that one today:)

Home today has been heaven on earth. To have all of my boys’ under the same roof is a dream come true. I did spend most of the night unpacking our 20 bags and doing laundry. I couldn’t stand the thought of having to wake up to them in the morning and then having to come home from a long day at the hospital tomorrow to them staring me in the face. The boys helped as much as they could and Woody cooked dinner. It was a nice, normal, happy night. It feels really good to all be together again.

Ronan knows the drill for tomorrow. I have been preparing him for it all day as far as having to get up early to go back to the hospital so Dr. Maze can give him his sleepy medicine. I find if I prepare him for things, he is less likely to throw a fit. He told me tonight it’s o.k. to go back to the hospital, as long as he doesn’t have to be “hooked up” as he calls it, to his pole. I told him he would not have to be hooked up, he was just going to get his sleepy medicine for pictures and we would go home after. He is being very cooperative with all that is being thrown his way. I am so lucky to have such an amazing little boy. He never ceases to amaze me.

Tomorrow is a big day for Ro. Please keep him in your thoughts and prayers. He will have his audiology test first thing, his bone marrow scan, and then his bone scan. We know from the scans in New York, that the Neuroblastoma was not detected in his bone marrow, but we will have them rechecked at PCH and have the bone test done as well. When Ronan was first diagnosed, he had Neuroblastoma in everyone of his bones and 5-10% in his bone marrow. We know that it is now gone from his marrow, but his actual bones may be a different story. We will hope and pray that it has drastically decreased. It cannot be any other way.

Tonight, I am happy to sleep in my own bed with my little bug curled up beside me. I was able to tuck in Liam and Quinn which means the world to me now. Who would have ever thought something so little would mean so much in the grand scheme of things. Tucking in my little boys’ is the happiest place on earth for me. I am very thankful for the nights that I am able to do this and will cherish them for the rest of my life.

G’nite to all of you beautiful souls out there. Thank you for all the love, thoughts, and peace you are sending our way. Nobody said this was going to be easy, but it is going to be worth it. The love that surrounds our family is something we are so thankful for. Sweetest dreams to you all.

xoxo

I never understood before
I never knew what love was for
My heart was broke, my head was sore
What a feeling

Tied up in ancient history
I didnt believe in destiny
I look up you’re standing next to me
What a feeling

What a feeling in my soul
Love burns brighter than sunshine
Brighter than sunshine
Let the rain fall, i don’t care
I’m yours and suddenly you’re mine
Suddenly you’re mine
And it’s brighter than sunshine

I never saw it happening
I’d given up and given in
I just couldn’t take the hurt again
What a feeling

I didn’t have the strength to fight
Suddenly you seemed so right
Me and you
What a feeling

What a feeling in my soul
Love burns brighter than sunshine
It’s brighter than sunshine
Let the rain fall, I don’t care
I’m yours and suddenly you’re mine
Suddenly you’re mine

It’s brighter than the sun
It’s brighter than the sun
It’s brighter than the sun, sun, shine.

Love will remain a mystery
But give me your hand and you will see
Your heart is keeping time with me

What a feeling in my soul
Love burns brighter than sunshine
It’s brighter than sunshine
Let the rain fall, I don’t care
I’m yours and suddenly you’re mine
Suddenly you’re mine