I talked to Dr. Wood this morning and Ronan’s ANC counts came up from 0 to 25. This still doesn’t mean we will be getting out of here anytime soon as they have to be up to 200 and rising for Dr. Eshun to discharge us. Dr. Wood said he expected us to be here until next week. Our little monkey is getting restless and tired of being here. How in the world am I going to entertain him until next week? We will just have to make due. My friend, Fernanda, came and sat with Ronan for 4 hours today so I could run home, shower, do some laundry, and run some errands. I got a chance to catch up on the phone with my Susie and Bethany. Both of those phone conversations were long overdue and it was so good to hear both of their voices and catch them up on things. I miss them both so much. Thank you, Fernanda, for taking such great care of Ronan for me. He LOVED having you here and is still talking about the things you two did. I am so lucky and blessed to have the amazing friends I do. I am thankful every second of the day for all of you. <3<3
I am really, really, really, excited for a few things that some amazing people are stepping up and doing for us. Not going to go into too many details but so many people have been coming out of the woodwork and wanting to help change PCH and the way things are done around here. They know who they are and they are just as passionate and excited as I am. All they needed was Ronan and his story to fuel the fire for making the world of Pediatric Cancer, a better place. I am so excited to be involved in this process with the vision and help of great friends. Ronan is changing the world already at the small age of 3… I can't wait to see what amazing things come of this. Thank you, my dear friends who shall remain nameless due to them being the kinds of people that don't want recognition, who just want to do amazing things when nobody is watching. I can't tell you how much I love this. There are not many people in the world who just do things without the whole world needing to know about it. I am going to have to come up with a nickname for this new friend of mine…. you know who you are<3 I will think of something after I get to know you a little bit better:) Maybe Mrs. Margarita due to your email tonight;) Love you, your passion, and your heart. Thank you, sweet girl.
The rest of today was spent playing with Ronan. We had a new nurse today that we haven’t ever had before. Imagine that! I thought we knew everyone on this floor. Her name is Holly and she was a delight. Ronan adores her and she was very sweet to us. We hope to have her again and also love the fact that she too is a former Sundevil:) The ASU baseball team came to visit the kids on the floor and I coaxed Ronan out of his room to go to the playroom to see them. I am so glad he agreed to go because he was able to meet some very special people and also get a couple of baseballs signed. Thanks Margaret for being extra sweet to Ronan. It was so nice to meet you today:) He was a little overwhelmed and a little shy but was very excited about the baseballs when we returned to his room.
I wasn’t going to ask to switch to a window room view while we were on the second floor….. because I thought we were going to be out of here by Saturday; but I did. If we are going to be here until next week; I will not survive without one. I feel like the biggest pain in the butt… as Dr. Maze said to me today, “What are we doing, playing musical rooms?” Made me laugh but that’s how it feels. What can I say, I’m a girl who knows how happy the little things make me and I’m not shy about asking for it. One of Ronan’s favorite things to do at night is to look out the window at the pretty neon lights that flash at the top of the new PCH hospital. He loves to say the colors out loud and we count the stars and say Goodnight to the moon.
Ronan is really missing his house and brothers tonight. He must have told me a dozen times how much he misses Liam and Quinn. It KILLS me to hear him say those words to me. I hate that he can’t be with them. He called tonight and talked to the boys’ for a while. I sat and while Quinn was on speaker phone and the boys’ went back and fourth telling each other how much they missed one another. It was heartbreaking and sweet all at the same time. After the phone call, Ronan and I spent the evening playing “lets throw the stuffed monkeys back and fourth to each other but not let them hit the ground due to the hot lava, game.” We played for a solid hour and he was laughing the entire time. We then went on a hut for our favorite nurse, Arica, and found her but she was in a room with a patient. She blew Ro kisses and came to visit us later tonight. Ronan was almost asleep but woke up as Arica was giving him kisses and loves, just so he could give her a smile and a giggle. I love that girl<3
Woody has been so busy this week that he hasn't been able to stop by the hospital to see us. Between his law firm and coaching the twins' two basketball leagues, he hasn't got a free second. Our catch ups have been consisting our our 3 minute phone conversations about 10 times a day. I HATE THIS. I miss my husband, my twins, my house, my old normal everyday life. I am tired of falling asleep listening to the screams and cries of our roommates and their parents. I'm tired of the lack of privacy and this sharing room bullshit. It's bad enough that my child has cancer, but it's even worse the lack of privacy that comes with it. I know, I know… the new hospital will have it's private rooms. That does me no good as of now. I'm burnt out, I'm discouraged by all the sadness that surrounds me everyday. Listening to the screams at night haunts me and is another huge reason to why I never sleep well. I know Transplant is going to be hard, but at least we get our own room. Trying so hard to find the positive in anything and everything I can.
That's all for tonight. I hear some Coconut Water and a movie calling my name. I could really use a Margarita and some freaking chips and salsa. What I wouldn’t give for that. I need to get lost in something tonight, otherwise I’m going to lose my freaking mind. Ahh… spoke too soon. My friend Stacy just texted me to ask if she could bring me anything. My reply was, 1) A margarita, 2) Some Sangria or 3) George Clooney. Can you guess what she is showing up with?!?! Either way, I win!! YAY FOR GOOD FRIENDS!!!! G’nite dear darlings. Sleep well.
Kathryn~ Thank you for the Star Wars picture you sent for Ronan that Annie Leibovitz shot and signed for him. He is going to freak out over the picture; I am freaking out over the fact that such an amazing, talented soul, took the time to do such a sweet thing for Ronan! Made my day!! Tell her thank you as well:)