Magic Medicine, Day 3 Round 4

Headphones on: check. Music blaring: check. Baby sleeping: check. Tears out of the way for today: check. Today, was overall a good day. Ronan slept in until 9 which is very unusual, but he had a rough night. From about 2-4 he was up and throwing a tantrum. He kept throwing himself on the cold floor, insisting he was hot, and he was mad that he was “hooked up” to all of his medicine. He would not let me touch him, hold him, and kept screaming for me to leave. Finally, he fell back asleep. Mimi and Papa came around 9:30 so I could run home and sleep/shower. The sleep part never happened, but it felt nice to be home for a while. I also got to see Liam and Quinn for about 5 minutes which was a treat. I miss my boys. I came back to PCH and played the rest of the afternoon/evening with Ronan. Trish came by to bring me a coffee and say hello. Ronan was not happy to have her here at first. By the time she left though, he was yelling to her as she walked out the door, “Love you! Thanks for coming! See ya later, alligator!” It was the cutest thing. The “thanks for coming” part melted my heart. The nurses were all cracking up standing outside the door listening to him say his goodbyes. He doesn’t talk much around here, so they got a big kick out of hearing him yell all of those things to Trish. I was going to take Ronan downstairs to meet Mimi as she was dropping off some things to us. I asked the nurse to make sure it was o.k. and I got a big fat NO. Apparently, if you are hooked up to chemo, you have to stay on your floor and I guess they have gotten pretty strict about enforcing those rules. As soon as I told Ronan he couldn’t go downstairs with me, it was meltdown city. We were in the hallway and he started screaming, hitting, and crying. I had about 5 nurses run out to see what the commotion was. This lasted about 20 minutes and finally he calmed down and fell asleep in my arms. His little meltdowns always make me cry. I hate that he does not have the words to express what he is feeling.

New York is right around the corner. I’m anxious to get it out of the way. I am excited to go… I couldn’t think of a better place to spend a month, even if it is under the circumstances we are dealing with. I have the best friends and family who will be flying out to help me out and to give me a break. I cannot wait to meet Dr. Kusher and La Qualia…just to be in the presence of such amazing Doctors makes me feel so thankful that we are fortunate enough to have Ronan in the best hands.

I am hoping that Ronan stays asleep tonight for the rest of the night. We were told today that we will be able to go home tomorrow around 9:00 p.m. Yay for that. We will start Round 5, November 22. I can’t believe how all of this is flying right by. Please keep a special little girl in your prayers tonight. Her name is Mia. A few weeks ago, Auntie Karen and I were walking Ronan around downstairs, and a man chased us down and asked if this was Ronan. He said he recognized him from my blog that he follows. His little girl, Mia, is here now completing another brain surgery. I spoke with her mom on the phone tonight and it sounds like everything went well. She needs lots of prayers and love send her way too. So many kids do. Our roommate, who I will just call, S, went home today. I missed it and I am so sad that I didn’t get to say goodbye. Mimi was here and told me that the dad was anything but nice. After listening to the way the dad was talking to his son (who he hasn’t seen in over a week) Mim went over and told the dad how proud he should be of his little boy, how polite and well-mannered he was. The dad replied with some snarky comment about how he doesn’t seen that side of him. UGH. I would like to punch that guy in the face. That little boy could not have been any sweeter. It makes me sick to think that he dad does not appreciate how amazing of a little guy he has. The poor kid has been here alone the entire time and never once complained about a thing. I am going to keep him in my prayers for the rest of my life. We have a new roommate now. He is 19 and seems really nice. He is quiet which is always a bonus.

My sweet Charisma rocking a Rockstar Ronan bracelet. And seriously, could she be any more gorgeous? Love her. Email us at rockstarronan@gmail.com if you want one. They are 5 bucks. She is wearing the “nice” one which says, “Rockstar Ronan” “Our little hero”…. I also have a “naughty” version which says something not so nice about cancer….”F*cK You Cancer.” I rock the not so nice version. Alright.. seriously going to try my best to get some rest now, while Ronan is resting. Whooohoooo for almost being done with Round 4! Only 2 more rounds of chemo to go!!!! Goodnight to all of you beautiful people out there. Please spread the word about Ronan and childhood cancer in general. Together, we can make a difference!

P.S. 96,874…. as of today… this is the number of blog views I’ve had. AMAZING! I am stunned that so many people are taking the time to read Ronan’s story. Thank you to each and every one of you! xoxo

TGIF!

It’s the weekend! So excited to spend it with my little family. Today was a typical day for us. Big boys went to school and Woo went to work. That left Ro and I home alone. We spent the day enjoying playing outside, carved a pumpkin, and I took him to the drive through car wash that he loves to go to. He was really giggling and laughing when we were getting our car washed. He loves to watch the colored soap spray all over the windows. It was cheap entertainment and a nice little break from being stuck at home. He took a nap and I worked on some things for his website. It’s been fun doing the research on it and figuring out what I want it to look like. It’s been a good distraction for me to say the least. I talked to my friend Laurie today for a bit to get caught up on Baby Jack… the little boy who is a few months ahead of Ronan with his treatment for Neuroblastoma. She sounded so great and Jackers is doing amazing. I am always amazed at her strength and positivity. She is a good role model for me and Jack is such an inspiration. They are an amazing family and so deserve all the good things that are coming their way.

Liam and Quinn came home with their “report cards” from school today and they were so excited to show me. They both ripped them open and we went over what they said. I could not have been more proud of them. They are becoming such little men. We played outside and waited for Woody to come home. Woody and Uncle Jay came home around 4:00 with pizzas and beer. They stopped at A.J.’s and brought home a bunch of things for “Game Night” at the Thompsons. They started a game of  Risk with Liam and Quinn about 3 hours ago. I kept Ronan busy so they could play and it is still going on. Ronan had a nosebleed tonight so I tended to him and after about 20 minutes, it finally stopped. I was praying that we wouldn’t have to go to the hospital. Hoping it won’t start up again in the middle of the night. I know his platelets are starting to dip down but I think if I can keep him sleeping, he should be fine. He had a rowdy day.. lots of running and playing.

Not sure what else this weekend has in store. Liam and Quinn have a basketball game tomorrow but we won’t be taking Ronan. Now that it is turning into that time of year when the flu hits, etc…. we won’t be taking him out at all. Time to put him back in his bubble. I am going to have to get very creative as far as keeping him busy at home. Thinking some paint supplies and lots of arts and crafts are in our very near future. We have been working a lot on his school stuff and he is still fighting me on it a little bit; but I know he is learning. I hear him repeating things when he is playing and he thinks I am not listening. Stubborn little boy.

I’m going to have to say that my husband has been extra amazing lately. If that is even possible. I have no idea how he does all he does. I am so impressed by the way he is handling everything. Keeping his law firm going, being such an amazing daddy, and doting on me 24/7. If anyone is carrying the weight of the world on their shoulders, it is him. I am so thankful to be married to such a strong man who can take care of his family. There is nobody in the world who I respect and love more then him. After all that we are going through, he has kept the best attitude and positivity. He really is one of a kind and I will forever stay madly in love with him. I am thankful that my 3 boys have such a strong male role model in their lives. I know how important that is in forming what type of men they will grow up to be. Thanks Daddy Woo<3

Throughout this journey I have come to see things in such a different light. Life will never be the same again for us, but I honestly think it can be better. I have such a new appreciation for the littlest things. It is a life full of nothing but pureness and simplicity. It’s like we have been given a new chance to soak up all the things we do have and enjoy them to the fullest. Life is too short to be unhappy or worry about petty things. We are making the most of what we have, right now, in this very moment. There is no point in worrying about the future because it is the here and now that matters most. A hard lesson to learn, but a beautiful lesson indeed.

I am going to leave you with a quote that I came across today when I was doing my website research for Ronan. <3<3<3 LoveLoveLove<3<3<3

Be who you are and say what you feel, because those who mind don’t matter and those who matter don’t mind.  ~Dr. Seuss