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

Stupid bloody nose

Stupid bloody nose. Those were the words I heard all day long. Ronan had a handful of bloody noses over the weekend, but nothing that we couldn’t control. Last night, he wanted to sleep in his own bed so I let him. I slept in his room with him, but in the other bed. I fell asleep around midnight and woke up to noises that were coming from the livingroom. Ronan was sitting on the couch, upset over his nose that was bleeding. I don’t know if he was upset because he didn’t know where I was or because of the bloody nose. All I know is he was pissed and wanted nothing to do with me. It took me a good hour and a half to calm him down and get him back to sleep. He was slamming doors, screaming, and crying. I think it was a combination of him not feeling well and me not being in his bed with him that upset him so much. We had an appointment for the clinic at 10:45 this morning, but I called and got us in early. From about 9-4, Ronan had a pretty consistent nose bleed. His platelets were really low so they transfused him twice. He also received some blood. My body physically aches from all we went though today. It seemed like all the pinching in the world could not get the blood to stop. We were covered in his blood by the time we went home and his little nose is so sore and raw. He was so upset by the whole thing that we had our nurse, “A,” give him a sedative, twice. Mimi Kay stayed the entire time with me, thank god. She helped to get me new Kleenexs, and wiped me down with baby wipes when I was covered in blood. Now that’s a good mother-in-law right there;) Finally, around 4:00, it subsided but we waited until 5 to go home. Once we got home, Ronan was off and running full force; despite me trying to keep him relaxed and calm. He threw a bit tantrum about wanting to go and get shaved ice, so I took him to the little place right by our house. I figured after his day, he deserved it. Since we’ve been home, he has been fine. But one more nosebleed and we will have to be admitted into the E.R. Praying that this does not happen.

Sitting in the clinic today was hard. You know what’s sadder than a 3-year-old with cancer? A teenager with cancer. I have decided that after spending the afternoon, surrounded by older kids with cancer. As I watched them, I felt like my heart was breaking into a million pieces all over again. At least Ronan doesn’t understand what is happening to him. He just finds it more annoying then anything. He is so fiercely independent, and I know a big part of his anger is not being able to be independent anymore. But he doesn’t get the jist of it.. the bigger picture of all of this. These older kids, understand everything. They understand mortality and what they are up against. I can’t imagine what they must be going through or feeling. Thinking back to when I was a teenager, I was so clueless. I had no idea that I was so blessed to be a healthy kid… I will never look at teenagers the same again. Especially one’s with cancer. Add them to my list of heroes.

Okay… I am so tired my eyes are blurry. Hope I even make sense tonight. Going to try to get some sleep. Thanks for all of you who were thinking of our precious Ronan Baby today. Big huge virtual hug to you ALL!

Sweet dreams, my angels.

xoxo