When I was 21 and at ASU going to school…. the weekend of St. Patrick’s Day, I was out celebrating with 2 of my girlfriends. One thing led to another..(I blame it on the green beer and wanting to rebel against the ONE thing my dad asked me to never do) and we ended up at a tattoo parlor. Right above our left ankles, on the inside, we all 3 got matching tattoos that said Rock Star with the shape of a star in the middle. It was crazy and fun, and the older I got, every time I looked down at it, it made me laugh and relive my youth. I always said it was going to keep me young. When this all happened, I was trying to think of a name for Ronan’s blog with my girlfriends. We went back and forth with sweet names… and then it dawned on me. Rockstar Ronan was born. It was perfect. The saying, “Everything happens for a reason,” is becoming more and more true to me. I seriously believe that someone up there has my life mapped out…. it is not completely in my control. Who would have guessed this tattoo would link me to my little Rockstar forever. It now has more meaning than I ever could have imagined.
Month: November 2010
Music speaks to me… especially Pink.
Ava Mary A: By Pink
Motorcycle’s in the parking lot
Revving their engines and it just wont stop
Matches the noise screaming in my head
Houston I think we got a problem
Where does everybody go when they go
The go so fast I don’t think they know
We hate so fast
And we love too slow
London I think we got a problem
And when I think about it
I just can’t think about it
I try to drink about it
I keep spinning
Where did you go
Where did you go
How did you know to get out of a world gone mad
Help me let go
Of the chaos around me
The devil that hounds me
I need you to tell me
Try to be still
Try to be still
Broken hearts all around the spot
I can’t help thinking that we lost the plot
Suicide bomber and a student shot
Tokyo I think we got a problem
But for that they have gotta pay
If that don’t kill you then the side effects will
If we don’t kill each other then the side effects will
Keep down I think we got a problem
Ave Mary A
Where did you go
Where did you go
How did you know to get out of a world gone mad
Help me let go
Of the chaos around me
The devil that hounds me
I need you to tell me
Try to be still
If the darkest hour comes
Before the light
Where is the light
Where is the light
If the darkest hour comes
Before the light
Where is the light
Where is the light
Where is the light, yeah
Ave Mary A
Where did you go
Where did you go
How did you know to get out of a world gone mad
Help me help me let go
Of the chaos around me
The devil that hounds me
I need you to tell me
Try to be still
Try to be still
Try to be still
I saw Pink in concert last year. I have always been a huge fan, but after that concert… it went to a whole new level of me being crazy for Pink. When I need strength, I listen to her. When I need to cry, I listen to her. When I need to work out my anger, I blast her. When I go on my runs and cry my eyes out, she is who is screaming in my ears. I adore her, her amazing talent, and for not conforming to the “norms” of all that fancy pants Hollywood B.S. So there you have it. Pink will help me get through this….. She is my alter ego when I need to be a badass:)
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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
Magic Medicine… Day 2, Round 4
That stupid pit is back in my stomach today. It is the worst feeling. Makes me not want to eat, not want to sleep…. it’s like a dull, empty pain that comes and goes. And when it is here, it is a constant reminder of what we are up against. Before all of this, I didn’t even know what an Oncologist was. Yup, I was that naive. I thought the last thing we were going to hear is your child has cancer. I still think this is some kind of a sick joke. But staring at my baby’s bald head, as he peacefully sleeps… I am reminded that it is not. And it is more painful than anything I’ve ever felt in my life. When I was driving back to PCH today, after running home to shower and take a power nap… I thought to myself, how in the world can I ever go back to a normal life? A life before all of this? In a weird and twisted way, I have come to love our new life. It is a new life full of getting Ronan well and keeping him alive. He is still here. He is still alive. He is still mine. I am so thankful for that. I remember at the beginning of all of this, when we were talking to one of the doctors here about treatment options…. he told us that if we wanted to take Ronan home, to let him be at peace and not do any of the treatments, that they wouldn’t fight us about it. His words still haunt me….how in the world could that have even been an option?? To give up on your baby and not do everything in your power to help him fight though this…I can’t even imagine. I am very thankful we caught this when we did. A month or two later… and it could have been too late. We are going to do everything we possibly can to get him well… I have no doubt that what we are doing will work.
Ronan has his chemo running through him for 72 hours straight. It is a little clear bag, full of some orange fluid. He is sleeping now, but seems to be tolerating it pretty well so far. My little fighter. Woody and I met with Dr. Eshun today to go over our plan with him for NYC. We are working getting all of the dates finalized and set. No matter what the case, my stomach always goes into knots when we have to meet with a doctor. Guess it just goes with the territory though and I need to learn to get used to it. This is not going away any time soon.
The little boy who we are sharing the room with is still alone. I hear him talking to his mom on the phone every once in a while. He just called her to ask if she was o.k…. he wants to know what she is watching on T.V. and wants to know if his dad is asleep. He sounds so happy just to even talk to his mom on the phone. I could just eat him up.We’ve been with him since yesterday around 4… and no parents have been here. Not even during the night. I cry for him. He is the sweetest little thing and he doesn’t make a peep. I want to bring him all sorts of toys and things to play with. He never asks for a thing… even after the dozen times that I have asked him if he needs anything. Sweet kid. Shitty situation. Life really is not fair sometimes.
Last night I slept about 3 hours. Better than nothing. I am paying for it tonight though… very tired. No matter how tired I am, I never sleep well here. Too many people coming in and out, too many beeping noises, too cold, etc….. It’s fine though… I could stare at Ronan all night long and never tire of it.
Before I try to get some rest I wanted to say a big thank you to The Academy House in my hometown for putting on a wonderful fundraiser in Ronan’s name. I am floored by all the people who showed up, all of the money raised, and the beautiful spirits of the young kids who worked so very hard to raise awareness for Ro’s cancer. Also, a big hug to Lisa for organizing everything and being the force behind it. The love and support from my hometown has been amazing and I am so thankful and proud to be a Longview/Kelso girl.
Sweet dreams to you all out there. Thank you for loving us, believing in us, and fighting for us. I’ve said it before, but I’ll say it again… I will never forget the love you all have shown us and I will forever be changed because of each and every one of you. G’nite<3<3<3
And P.S. Gay, I love you and your messages. Thank you for checking on me… sorry for not calling you back… will call you tomorrow. And you and your guys’ are NEVER too much for us. That was the best Halloween ever. Thank you for sharing it with us… we adore you all and are so lucky to have you in our lives.
Magic Medicine…. Day One, Round 4
We are here and settled in our room. The first room we were put in, was drab and small and we didn’t have a window view. I immediately told the nurse, if a window view room opened up, to please let me know so we could move. The little girl we were sharing a room with, sounded like she was hacking up a lung so I told our nurse, Ronda, it was making me nervous and I requested a room change. Voila! New room and a window view. Very grateful. There was no way I was going to survive 5 days here in the cramped dark space that we were in before. Ronan didn’t nap today, so he fell asleep a bit ago. I did not want that to happen, but there was no keeping him awake. He was in pretty good spirits today, lots of energy. He wasn’t happy about coming here but I just explained to him that we have to get his “Magic Medicine,” to make him all better. He seemed o.k. with that explanation and keeps talking about his medicine that is going to make him better so he can get his Iron Man out of his chest. Sweet little guy. I can’t wait for the day that we can take that thing out of his chest. And then we are going to burn it.
While we were at the clinic today, Ronan took out his favorite little blanket that he has had since the day he was born. He was tired and he was snuggling with it. When we got over here, I went to unpack his bags and realized I didn’t have “KiKi,” (the name of his blanket) Holy PANIC! He has never slept a night without that thing! I figured we left it over at the clinic so I called and had our lovely Elaine put on the case of finding it. Thank the lucky stars above…. it was found and someone from here ran over to get it for me. A night without that thing would have been disastrous. Our new roommate is a little boy who seems to be around 8. His parents have not been here at all today and as I’m writing this at 7:30 tonight… they are still nowhere in sight. I went and introduced myself and told him to let me know if he needed anything. Breaks my heart. I will always be grateful for being able to spend this time with Ronan. I could not imagine having to leave his side. This hospital is filled with babies and kids who are cared for by the nurses because their parents can’t be there. It is really sad to see.
I am missing being at home tonight with my husband and big boys. I wish I could be cooking dinner and reading them books and snuggling up with Woo to watch one of our shows. In our old life, that is what we would be doing. That old life seems like it was so very long ago. What I wouldn’t give for a taste of that again. I know we are on our way there… slowly but surely we will win this race. Speaking of races, I started reading Lance Armstrong’s book, “It’s Not About the Bike.” What an extraordinary man he is. I have a newfound respect for him and all he has accomplished.
I am doing o.k. tonight. I will be strong and get Ro through this week. He deserves a mommy that will fight for him and be strong. I can be that mommy. He is worth everything I have.
Goodnight, my friends. Sleep tight<3
ROCKSTAR RONAN 