Tag: The Ronanld McDonanld House NYC

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

Super Ro to the Rescue!

Lazy Sunday. Ronan and I did not wake up until 10:30 here…. still on AZ time. We had both been up late the night before, enjoying the freedom of not having a roommate in our hospital room. Knock on wood. Still no roommate. We woke up, played and Trish came by with some food for me and to sit with Ronan so I could go and shower. I got out for a few hours and just caught up on some things, organized our room, packed my bags, and showered to get ready to return to the hospital. I had to pack up more than normal, as I won’t be leaving the hospital until Woody and the boys get in Tuesday night. Hoping my sanity stays in check without the little breaks I’ve been getting. I’ve got to stay strong for Ronan and it is only a couple of days. I am hoping the walls of “The Stanley Hotel,” do not start to cave in with visions of Jack Nicholson saying to me, “Heeere’s Johnny!” I don’t need any Johnny sightings.

What a busy day! After Trish left, which was awful but I held it together. I sat with Ronan and ended up bawling. I wasn’t intending on the waterfall of tears today but they came and I let them. Ronan sat quietly and watched me cry. He asked why I was sad and I told him because I was going to miss Tricia. He said he was too. After I pulled it together…. I don’t even know where the time went today. We did our normal routine of his bath and his Star Wars guys bath. We played everything I could possibly think of. We colored, brushed our teeth for a long time, did some laundry at the hospital, and waited for Ronan’s sweet nurse, Jenn to arrive. Ronan LOVES her. She is so so so so good with him. So thankful. It’s hard enough to be away from home but we are starting to form our little bonds here. Slowly but surely. Ronan is very careful about who he let’s into his little world. Jenn has passed the test with flying colors. She thinks Ro is the funniest, cutest kid on the floor. I couldn’t agree more 🙂 He is always messing around with her and playing jokes. He just may end up being a comedian when he grows up. The things that come out of his mouth are a riot.

We did our laps tonight around the hall for about an hour. We dressed up like superheros, took our guns and shot everyone in sight. Ronan was very animated and our entire mission was very detailed. He had very specific instructions on what exactly I was to do, and I was told I had to follow his lead in everything. I was more than happy to agree. After our laps, we came back to our room and did facetime on our phone with Woody, Liam and Quinn. It was so good to see my family and talk to my boys. I miss them so much. Tuesday cannot get here soon enough, for both Ronan and myself.

Our week is a busy one so hopefully it will go by fast and hopefully Ronan’s counts will start to rise and we can get the heck out of here! The big boys arrive Tuesday night, we have scans Wednesday/Thursday, and New York Miss Macy arrives Thursday evening as well. She is so excited that Woody and the twins will be here. I told Quinn tonight that his girlfriend was going to be in town and he just started giggling. I think he may have a little crush 🙂 My friend, Ellen and her daughter, Phoebe, are going to be at Sloan tomorrow for a check up so we will be seeing them as well. I cannot wait to give Phoebe a big hug. I haven’t seen her since December after she had finished her 17th round of chemo and she was finally discharged to go home. I just hope little morning grumpy pants decides to be in a better mood so we can have a nice visit with them.

Party room time is over. We are just now getting roommates. The privacy was fun while it lasted. We took full advantage of it. Ronan is still awake and it is after midnight. He is quietly playing Star Wars in his bed. I wonder if we will ever adjust to the 3 hour time difference. Makes no difference… it’s not like we really have a schedule.

Alright my friends. I’m going to try to get my little monkey to bed. I hope you all had a great weekend full of lovely things. Thank you for checking in on us. Thank you for loving our Ro. Sweet dreams!

xoxo