Because I’m still in love with you

Clarity. It’s what I’ve found tonight. It came in many different forms. A long talk with Mr. Sparkly eyes, an email from my Mrs. Darling(P.S., SB… that’s your new name) , an honest talk with my husband, and the music that blares on my headphones from a mixed C.D. that my New York Miss Macy made me. Clarity tonight is mine and I’m not letting it go. It’s as if my eyes have been blurred with a film of fog for months now, and the fog has finally been lifted. I have fought so many things, trying so hard to push away all the good and beautiful things I have in my life because I feel as if I don’t deserve them. Because I feel if Ronan is in so much pain, that I deserve to feel nothing but pain as well. I know that the pain that I feel most of the time is not going anywhere anytime soon… but I do deserve to have beautiful moments in my life such as tonight. I deserve these things because I am a good, true person who says what she feels and feels what she says. I am ready to feel again, something besides sadness and numbness. I am ready to feel these things because although sometimes I get caught up in the scariness and ugliness of our situation; I know what the outcome is going to be. Ronan is going to be fine. He is going to make it thought this and I have to remember to hold on to my grace and dignity. ( Thank you, CC for saving my life the other night;) Grace and dignity because after all of this is said and done; I don’t want to have any regrets. I want to look back at this journey and know that I would not have changed a thing about the way I handled all of this. Is my honesty a fault? I don’t think so, although others may say differently. This is me, this is my life, and you all get to watch the way it plays out in the way I handle things. I am not afraid to put all of this out there as I have nothing to hide. My truth is empowering to me and everyday I am learning something new about myself and the world around me.

My husband, has fought for months to get me back because he has watched the way I’ve pushed everything and everyone away. He hasn’t ever given up on me and tonight I was finally able to tell him everything I have been feeling and thinking. He knew all of it already and told me the story of how he never wanted to get married. He never thought he would marry because he didn’t think anyone was special enough to share his life with. That was until he met me. I was the one who changed his mind, I was and am the only one for him. He asked me tonight if I was sure if I still wanted to be with him. I told him I had never been more sure of anything in my life. I have been numb for months now, but ever since New York I have slowly been making my way back to Woody. I love that man with every bone in my body and I know I was meant to drift away from him so I could come back stronger than ever. So we could come back stronger together. I know this because I knew on our first date when I was just 21 years old, that I was going to marry Woody. I may have drifted, but I didn’t go far, and a lot has to do with the fact that he refused to give up on me. Not only has Woody been fighting for the life of our child, but he has been fighting for me as well. Until you go though something as devastating and hard as this, you have no idea how easy it is to just give up on everything. I can’t do this anymore. I can’t do this without my husband and I can’t do this by myself. I need him more than ever. He needs me just as much and I have to go back to being a wife to him. Yes, Ronan is my number one focus…. but the neglect that my husband has felt is not o.k. He deserves so much better. Being with Woody feels so good to me, but it also hurts so much. Looking into his eyes is like looking into a reflection of my own eyes which are filled with so much pain and sadness. But at least I have him to share this with and someone who knows what I am feeling and understands. He is the only one in my life who truly gets it and I cannot push him away any longer. It just makes everything so much more difficult. He is my best friend, he is the one who is going to fight this battle with me. We can do this together; we have no choice because I am tired of trying to be the strong one and do this on my own. Woody wants me to let him in again; and I am ready to let him in. I want my husband back; I have missed him so much.

I don’t often speak of the things that go on with Woody and I but tonight I am getting personal. Everybody should know what a toll this takes on a marriage. I am just thankful that our foundation and marriage was so strong before all of this which in turn will help us get though this. We are going to look back a year from now and know that we just survived Hell, and that we did it together. How many people can say that?? Not many. We have 3 gorgeous sons that need their parents and two parents who are crazy about each other. Yes, Woody… I will grow old with you and it will be the happiest day of my life. Thank you for fighting for me and for us. I am here and cancer can Fuck off because it is not going to destroy my marriage. We are way too strong for that.

I have met some of the most amazing people through out all of this. Tonight, I owe everything to Mr. Sparkly Eyes.. for never judging, always being honest, and for loving me and my family. Also, to Mrs. Darling, I too have the most insane intuition which is one of the reasons I feel such a strong connection to you…. having you tell me tonight about what you are feeling meant the world to me, because I feel the exact same way. I do not think you are a kook in any way. You are such a blessing to me. New York Miss Macy… for being my ears tonight and making me great music to help escape the dark hospital nights. Great music makes everything all better. And to my Wooddawg. For being the most amazing husband alive and for knowing that I am worth fighting for and for bringing me back to you. I’ve missed you so much.

Ronan’s ANC was at 80 today…. his little bone marrow is trying so hard to come back. We will find out tomorrow if they have come up even more. Hoping, but it does not look like we will be getting out of here anytime soon. Thank you to Sarah and Stacy for helping me today so I could get out of the hospital for most of the day and actually pick my twins up from school. They were so happy to see me:) You girls have no idea how much your help means to me. Thank you so much. Love you both.

Woody often tells me songs remind him of me. This says everything perfectly tonight. I love you, Wooddawg. I will love you forever too.

Coldplay : Green eyes

Honey you are a rock

Upon which I stand
And I come here to talk
I hope you understand

That green eyes, yeah the spotlight, shines upon you
And how could, anybody, deny you

I came here with a load
And it feels so much lighter, now I’ve met you
And honey you should know, that I could never go on without you

Green eyes

Honey you are the sea
Upon which I float
And I came here to talk
I think you should know

That green eyes, you’re the one that I wanted to find
And anyone who, tried to deny you must be out of their mind

Cause I came here with a load
And it feels so much lighter, since I met you
Honey you should know, that I could never go on without you

Green eyes
Green eyes

Ohohohohooooo
Ohohohohooooo

Ohohohohooooo
Ohohohohooooo

Honey you are a rock
Upon which I stand

P.S. After 12 years of being with Woody, he still to this day, ALWAYS, opens the door for me.

G’nite beautiful souls out there. Sweetest dreams. I hope you all have someone in your life that makes you feel just as special as Woody does me. Love and health are the two most important things in life. <3<3 If you have them both, you are the luckiest people alive.

The silence scares me because it screams the truth

A week. It’s been a week of sharing a room. Hospital beds. Hospital clothes. Hospital T.V. Hospital seconds/minutes/days/nights. Hospital tears. Hospital depression. Being home last night for the entire night with my twins felt so good that it hurt. I took them to breakfast this morning and we looked just like the perfect little family. Just another mom with her sons’ on a gorgeous Sunday morning, happy, smiling, laughing. Nobody in the restaurant knew the reality of my life. They didn’t know that soon my horse-drawn carriage was about to turn into a pumpkin. They didn’t know about the 3-year-old that I have with cancer who was waiting in his hospital bed for his mom to return. That’s my reality everyday and nobody knows the pain and sadness that comes with it. It hits me hard during times like this… when I get a second of my sweet life back and then have it ripped away from me once again. I fucking hate hospitals. I fucking hate RSV season. I fucking hate cancer and all the time it is stealing away from my family life. How lovely that I was able to go home last night and spend 30 minutes with my husband and try to act normal the way a husband and a wife do, but then that turns into him saying to me while looking at an old picture of our 3 boys… “I just keep thinking, did he have cancer then? Fuck. How long has he had this?” That in turn makes me cry and I get to sit and stare into my husbands eyes as he watches me cry because some days are harder than others. Today is one of those days. Do you know why my little 7-year-old who was exhausted from the days events stayed up until midnight  with me last night insisting we finish watching “Talladega Nights?”  He told me he didn’t want to go to sleep because he didn’t want the time with me to end. I couldn’t agree more and he is so right in the way he is feeling. Just pile that on top of the things that are ripping my heart out at the moment and smashing it on the floor.

Today, I couldn’t pull my shit together and had to have my friend, Gay, come and sit with Ronan so I could get out of the hospital for an hour and cry my freaking eyes out. The tears wouldn’t stop pouring and I thought getting out of the hospital would help; but it didn’t. It’s was one of those day. Bloody, bloody, Sunday.  Sarah the Saint stayed with Liam and Quinn all day today so I could come back to the hospital and Woody could go to the office and work for the entire day. Ronan has been a handful with a lot of energy, but is still not wanting to leave his room. He keeps talking about going home and wants to know why he can’t because he says he is all better. I try my hardest to explain things to him as simply as possible but he doesn’t get it. None of this makes sense to him and it shouldn’t.

We still have our baby roommate, with no parents in sight. The nurses have been working non-stop tending to him. The second they try to put him in his crib, he starts to cry and will not stop. Poor thing. All he wants is to be held. Makes me sick to my stomach. Reminds me to be thankful. Thankful. Thankful. Thankful. Things could be so much worse. Ronan’s counts were still around 50 today. The same as yesterday. They have got to be higher tomorrow… I don’t expect a major jump, but in the low 100’s would be nice. We just want to go home. We have isolation coming up soon and this is cutting into our time with Liam, Quinn, and Woody.

I’m being rotten tonight and I know it. Time for a positive attitude adjustment. I feel better after my day of tears. Guess I just needed to clear my head and let some things out. I’m going to snuggle up with Ro now and do my favorite nighttime activity which is to watch him sleep and wonder what that sweet little soul is dreaming about. I hope only beautiful things. G’nite dear angels out there. Thank you Sarah and Gay for your help today. I don’t know what I would do without you two. Love you.

xoxo

There’s no place like home

The morning started off early and Stacy offered to bring me coffee; which I really needed. She then ever so sweetly offered to stay with Ro so I could run home and shower. So thankful for her because just being able to go home and shower makes such a difference in my day. Ronan was so great with her and he is now getting used to my friends who are coming in and out to help me. His ANC counts have come up to 56…. slowly they are jumping up. Hoping for better counts tomorrow. He has been a little grumpy today but I finally got him out of his room and into the playroom for about a half an hour. That seemed to help his spirits even though he was insisting that he wanted to go back to his room. I told him that we were getting out of that stinky room for awhile and going to do something fun. We ended up painting and picking out some Mickey Mouse movies to bring back to his room. We have been playing on one of my friends’ iPad as it has a ton of games on it that we’ve never played before. She dropped it off at my house this a.m. and it has been keeping us busy for a couple of hours now. Thanks, darling:) Ronan and I also disinfected his entire side of his room tonight. My skin was crawling thinking about the germs everywhere… we tided up his entire room and wiped down everything from his Star Wars guys to the freaking floor. GROSS. Do not get me started on the cleanliness of hospitals. It freaks me out. I have taken it upon myself to wipe everything down, everyday. Makes me feel better in a way. Weird and silly but it’s a feeling of control that I need right now.

Liam and Quinn’s 1st grade teacher called me yesterday and offered to sit with Ronan tonight so I could run home and see Woody, Liam and Quinn. BEST TEACHER EVER:) Thank you, Cindy<3 She is on her way now and I cannot wait to get home to my big boys for a couple of hours. I may stay the night at home tonight and let Woody stay at the hospital. It would be so nice to spend a little time with Liam and Quinny Q.

Home sweet home now. Got to see Woody and catch up on some things. It was beyond nice to spend an hour with him before he went to PCH to spend the night with Ronan. It feels so good to be home and so good to be with Liam and Quinn. I miss them so much. We spent the night playing “Little Big Planet,” and they both helped me with chores around the house. They are the sweetest boys’ in the world. I can’t believe how tall they have gotten! I swear they have grown a few inches since I’ve seen them last! Quinn has sprouted up and is a couple inches taller than Liam now. Woody said tonight he bets Quinn is going to be 6’8 or 6’9. My 7 year olds are going to be taller than me soon. So scary! The boys’ had 2 basketball games today and sign ups for baseball. We are trying to keep them as active as possible and everything as normal as possible for them still. From what Woody said, they both did amazing at their games today. They were both very excited to tell me about them. I loved hearing the excitement in their voices; my little superstars. Team Thompson rules;) I am so proud of them.

Time to try to get some shut eye now, I’ve got to be back to PCH early so Woody can go into the office for a few hours and get caught up on some work. Hope you all are having a beautiful weekend. Sweet dreams<3

xoxo

I just want to be home

Am I staring in Bill Murry’s movie, “Groundhog Day?” That’s what the days feel like around here. I texted Woody today and said is it Thursday or Friday today? I had no clue what day it was. I ran home to shower and repack my bag, hit up the grocery store for Ro, then headed back to PCH. Today I’m depressed, tired, and sad. Hospital living at it’s finest. I just spent the past 30 minutes staring out the window at all of the cars on the freeway, wishing I was the one with somewhere to go, with not a care in the world. I had a mini breakdown this afternoon, tears and all. Thanks to my sweet Mrs. Sangria ;) for being on the other end of the phone for me and listening to me as I was a blubbering mess. I’m better now. But that as we know, can all change in an instant.

Ronan’s ANC is still not coming up. He looks great, but they are not letting us out of here until his counts start to rise. I’ve asked everybody. I told my friend Bethany tonight that I was about to throw Ro in a duffel bag and smuggle him out of here. She offered to be my get away driver;) That’s a true friend right there. So we just sit and wait. I asked why couldn’t we just go home and keep Ronan on lockdown there. I know the reason why, it’s obvious hospital policy and rules…. but wouldn’t he be safer at home without all the hospital germs floating around?? Makes sense to me, but I know these rules can’t be broken. So, I will sit and wait while listening as my 5 month old roommate, who has cancer, gets the spit suctioned out of his mouth because he can’t swallow on his own. I will sit and wait as this little baby has to be at the hospital all alone for days because his mom is at work.  I will sit and listen to him cry and struggle to breathe and watch as the nurses try to take the place of his mom for the time being. I will sit and listen to Ronan cry that he just wants to go home because he misses his brothers so much. I will sit and wait and be patient and comforting to my son because that is what he deserves. I will sit and be thankful too. Thankful that I can be here with Ronan, thankful that I don’t have to work and leave my son alone. I have to find the silver lining in all of this somewhere. On the inside, I feel empty, tired, and numb. I want this all to go away; now.

Today was spent keeping Ronan busy and his mind off of being in the hospital. We sat in his bed and played Star Wars and watched movies. We broke out this adorable “finger ink” book that some mystery person dropped off the other day… as well as a bag full of other goodies. Still don’t know who this was but thank you again:) We sat and pressed our fingers on the ink pads and made silly pictures. Ronan then decided to dot my nose with a the color green. Well, that led to bigger and better things and before I knew it, I had inked his entire head and face  all orange and made him look like a pumpkin. He inked my face purple and green. We were laughing the entire time and thankfully, the ink was really easy to wash off. Messy but very well worth it. Being in a hospital so much you have to get crazy sometimes. That was our crazy for the day; and we had a blast.

Short and sweet tonight because that’s all I can do. Hopefully tomorrow we will see a rise in Ro’s immune system counts. PLEASE. Love you all. Sweet dreams.

xoxo

A Margarita, Sangria, or George Clooney??

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.

xoxo

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:)

Living is easy with your eyes closed

I have no idea what day it is even…. Wednesday I think? The days and nights are so blurry here and it is so easy to lose track of the time, days, and nights as they all seem to blend together. I do know that today is my dear birthday bunny, Jen’s birthday. Happy Birthday my sweet friend. Thank you for being a rock for me these past 5 months. I love you dearly<3 I hope you had a beautiful day.

My morning started off great with my friend Melissa bringing by coffee and her gorgeous smile for me. Ronan wasn’t up for visitors, kicked her out of the room, so we went into the hallway and caught up for a bit. Ronan would scream for me every so often so I would come and and tell him I was looking for Dr. Wood. He seemed satisfied with that answer so I was able to go back into the hallway and finish my conversation with Melissa. After she left, I was able to get out of the hospital today for most of the day. It was much needed and Mimi Kay and Papa Charlie came and sat with Ronan for me. So thankful. I can feel myself going a little stir crazy. It was nice to be out and about today. I returned around 5 to a happy Ronan and our 3-year-old roommate, Angel, who had been left alone almost the entire day. He sat and told me that his parents were never coming back. These are the same parents who left him alone last night for about an hour and when I went to ask Angel where they went he replied, “They went to smoke.” OMG. I spent the next 2 hours tonight tending to him and sharing Ronan’s popsicles and toys. I felt bad for the little boy. A 3 year old should not be left alone, EVER! He started throwing things at Ronan which in turn, made Ronan upset and the two of them were screaming back and forth at each other. Ronan ended up in tears because the roommate said to him, “You’re a bad boy!” Ronan looked at me and said, “I not a bad boy, mama!” I told him of course he was not but that didn’t stop the little tears from sliding down his cheeks. He is so tough but really got his feelings hurt tonight. There was not a nurse in sight up on 3 to handle this, so I did best I could. That floor 3 is a little coo-coo. Dr. Eshun gave us the green light to move to the 2nd floor tonight, thank god! We moved down here after the Angel incident and his parents had still not returned. We are just happy to be out of that room and down to our fun floor with the BEST nurses in the world. They were all so excited to see Ronan and he was just as happy to see them. The 2nd floor is like our second home now… it was weird to be here, but not with our “family.”  Somebody even wrote, “Rockstar Ronan,” on the whiteboard where all the nurses/patients info goes…. so cute that they know his nickname:) We are happy campers to be back down here and Ro baby is sound asleep. His ANC was still at 0 as of this morning. UGH. Please let it come up tomorrow. We are itching to get out of here and be back home.

Somebody sent some goodies tonight and I have no idea they  came from, as there was not a card. It was a bag full of some Star Wars toys, some fun books, Coffees for me…. Any takers??!?! Please let me know who you are… I would like to give you a proper thank you. It made our night! Ronan has been having a blast with his coloring books and little light saber racing car. THANK YOU!!!!!

I’m getting anxious and homesick tonight. Hoping I can unwind with a movie or something. I could seriously use some yoga in my life right about now. I feel like I have a lot to say, but my mind/body/soul is shutting down. Hospital exhaustion is kicking in. I am so thankful for my thoughtful husband and the Bose Headphones he bought me for Christmas. Music is saving my life through all of this…. thanks Wooddawg for being so thoughtful all of the time. You are the best gift giver in the entire world. Hope you all have a beautiful, blessed night. Sweetest dreams!

Extra special dreams tonight to my dear Charisma. I told you all the stars would end up aligning for you. More good things to come your way my dear. I can feel it!!

xoxo

Look at the stars and how they shine for you

 

 

Ro baby is doing well. His ANC is still at 0, but his spirits are great. Sarah came this morning so I could run home and shower which is always a treat. Ronan and I have been playing a lot in his bed. I put on a puppet show with him with his Curious George Monkey and his Sock Monkey. He really giggled the entire time. Just as I was in the middle of this, Dr. Maze came up to say Hi. He played with Ronan and Ro was loving it. He was so happy and playful with him. Made me so happy to see him giggling and smiling. That man has the magic touch with my baby. We talked a little bit about how Ronan is so much older than his 3 years. He really is an old soul and has been so happy these past few days.

Sharon came up from the clinic and changed his broviac dressing for me because he only wants her to do it. Spoiled boy. Our roommate, who has the window view is leaving soon so I’ve requested for us to move over to that side of the room. I’ll seriously go crazy if I can’t have my window view for the entire week. Ronan is not even allowed to leave the room due to his cough. It’s hard being stuck in here all day and night without being able to go and play or at least walk the halls. BRUTAL beyond words. Ronan seems to be fine with just playing in his bed, bossing me around, and eating his 10,000 popsicles. He’s starting to eat again which is great. He is getting better, slowly but surely.

The room move was a bit of a fiasco. Well, not really. After being shut down by 2 different nurses when I asked if we could please move to the window side since our roommate was leaving, due to his diarrhea being gone, (what I wouldn’t give for that problem) they kept telling me no, that it couldn’t happen. Ummm…. excuse me. I was not having that and asked to please speak to the charge nurse. I very politely told her that if we could please move to the window side of the room, that would really mean so much to me. I told her that we are here so much and a window view really helps to keep me sane. She listened and gave in. I guess she took one look at Ro’s bald head and felt bad for us. Good thing. You’d be amazed at what a difference it makes to have a window view here. As soon as we moved over, the sun was setting and Ronan was so excited to see it. We are sooooo spoiled on the 2nd floor from being there all the time and knowing everyone so well. Everyone is more than happy to give me a window view room, even if it’s in the middle of the night and one becomes available. This 3rd floor stuff is for the birds. We have had a really sweet nurse though and she’s even a Sundevil. Gotta love that.

My little boy is back to his old self, as much as that is possible, and has been cracking me up with the things that are coming out of his mouth. Some appropriate and some not so appropriate things which makes his little words even funnier. Laughing has never felt better in my life. This past weekend was hard due to Ronan not feeling well. This hospital stay actually has not been that bad because Ronan has been pretty happy. His happiness equals my happiness. So simple and sweet.

Our goals are pretty simple to get us out of here. Ronan has to stay fever free and his ANC counts have to come up to around 200. I have a good feeling tomorrow that they will be higher than 0. He looks great and has a ton of energy. I would love to be out of here by Friday. The weekend at home would be so nice.

That’s all for tonight. Xanex kicking in, sleep may actually come tonight. G’nite dear, sweet friends. Hope you all had a beautiful day today.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I’ve always thought this about people. It says a lot about who you are in the way to treat others; especially strangers. Everyone needs to just be nice.

Serenity now

Deep breaths and an amazing friends have gotten me through this past 24 hours. We were admitted into the ER last night around 9:00 due to Ronan’s low grade fever. I didn’t have to wait in the waiting room of the ER; THANK GOD. It was beyond packed even at 9:00 at night. The doctor on call, called ahead to let them know I was bringing Ronan in. As soon as we arrived, I told them our name and we were taken back into a room in the ER. Ronan was really not feeling well and was so tired. He passed out pretty quickly as the nurses checked all his vital signs and drew his labs. My friend, Fernanda, sent me a text to say she was on her way to sit with me because she did not want me sitting alone. She came armed with Starbucks and a big hug. We sat for the next 5 hours, trying to get Ronan into a room on one of the floors. Fernanda was on a war path…. but in the sweetest way so. There was nothing the nurses/doctors could do as they kept telling us all of the rooms were full on the floors 2 and 3, which is where we were supposed to be going. We used every trick in the book and Fernanda even tried to bribe one of the nurses with some Oreos that she bought in the vending machine. Didn’t work, but we got a chuckle out of it anyway. Finally around 3:15 a.m., the nurse said we would just have to spend the night in the tiny, freezing cold ER room. I was not a happy camper, have been saying some not so nice words, but have now relaxed due to Ronan looking and feeling 100 times better than when I brought him in here. Dr. Maze came and helped me out around 8 a.m. by using his very charming/stern words to explain that we needed a room asap. An hour later we were whisked off to the 3rd floor. Thank god for that man.

I got about 3 hours of sleep last night and I’m sure Fernanda didn’t get much more, but guess who was here at 9:30 a.m. to bring me coffee and keep me company? She was. Did I mention that my darling Fernanda has 5 gorgeous children of her own all under the age of 7?? Talk about an amazing woman and friend. Ronan didn’t even mind her being here and that is unheard of with him! I ran home to shower while Fernanda stayed with him. Made my day! He always throws a fit when I leave him, but was completely fine with this friend of mine whom he hardly knows. After I returned back here, Fernanda left and I thanked Ronan for letting me go home to shower. He said to me, “Your welcome, I like your friend.” So sweet!!!! He also was sure to tell me how much he missed and and how he loves me to the moon and back. Ahhhhh, little man!!! That more than made up for the recliner chair I had to sleep in last night and my seriously jacked up back today:) He seems to be feeling much better but just as I suspected, his ANC is at 0 and he needs blood. We will be here for most of the week I suspect. Fernanda…. I’m never going to stop telling you thank you for being such an amazing friend to me. And stop with saying it’s nothing…. because it is, and it means everything to me! I am so blessed to call you my friend. I love you.

Sarah came over this morning to help get the boys ready for school and to take them as well. Thank you so much, Sarah the Saint. Auntie Karen picked the monkeys up from school with her daughter Olivia and took them home to do homework and then to get some dinner until Woody got home from work. Thank you both so much; I am so thankful that Liam and Quinn are in such good hands.

I am running on empty and have downed 2 giant cokes, 2 coffees, and a ton of water. My typical hospital meals. Ronan is sleeping now and they are getting ready to pre medicate him for his blood transfusion. I am trying my best to channel all of the inner peace and strength I have for this weeks hospital stay. I am calmer than normal and it has everything to do with the fact that Ronan seems pretty happy to be here. I found myself thinking selfish things today like, I so need a massage, a pedicure, a spa day, a bath and 12 hours of sleep to feel better. It turns out I needed none of those things because just having Ronan acting somewhat like his normal self and being so loving and sweet to me, made all of the whining and complaining I was doing in my head, disappear. I think he was feeling really crummy at home and now that he is starting to feel better I can see him coming back to me. He is comprehending so much these days for only being 3 1/2. He is confused as to why we are on the 3rd floor and keeps asking for his normal nurses like Sara, Arica, Danny, Kathy, and Amy. I tried to explain to him that it is because he has a little cough that we have to be on the third floor for the time being. With it being RSV season, any little sign of a cough and you are banned from the 2nd floor. Tonight, he was telling me about all the people that take care of him and who love him. He named Dr. Wood, Dr. Maze, Sharon, “A,” and then he goes and Dr. La Quaglia took the big Death Star (he calls his tumor the death star from Star Wars) out of my tummy. He even pronounced his name right which was so dang cute. Ronan is so smart and doesn’t miss a beat. I’ve got to start watching what I say around that kid:) We have had a great night together but are so beyond tired. I’m hoping to get a little sleep as I am exhausted from the happenings of last night and the 3 hours of sleep I am running on.

Here’s to hoping tomorrow will be even better as he starts to get his strength and health back. We’ve got to get him well before transplant and I would like to be able to enjoy our time at home before we go in for the long haul. Thanks for checking in and keeping Ro baby in your prayers and thoughts. We are so lucky to have all of you thinking of him. G’nite sweet friends. G’nite Daddy Woo. Hope you are enjoying our big bed all to yourself:) Miss you.

xoxo

Open Your Eyes

All this feels strange and untrue
And I won’t waste a minute without you
My bones ache, my skin feels cold
And I’m getting so tired and so old

The anger swells in my guts
And I won’t feel these slices and cuts
I want so much to open your eyes
‘Cause I need you to look into mine

Tell me that you’ll open your eyes [x4]

Get up, get out, get away from these liars
‘Cause they don’t get your soul or your fire
Take my hand, knot your fingers through mine
And we’ll walk from this dark room for the last time

Every minute from this minute now
We can do what we like anywhere
I want so much to open your eyes
‘Cause I need you to look into mine

Tell me that you’ll open your eyes [x8]

All this feels strange and untrue
And I won’t waste a minute without you

The little monkey made it through the night

We ended up staying out of the hospital last night. Ronan slept and slept hard. His fever was off and on through the night, but did not ever go above 100.1. So thankful.  I had the most awful dreams last night. UGH. I can’t shake them this morning. I had a dream that Ronan could no longer have his Stem Cell Transplant because he had too much Neuroblastoma everywhere. All of our doctors were in my dream and there was a lot of screaming, crying, and hitting done by me. Can’t I catch a freaking break?? Why can’t my sleep be at least be peaceful; my days are filled with so much crap you’d think I’d at least be able to take a break while I sleep. Not the case, ever. I need a break today. I may have to just bite the bullet and leave Ronan for a bit to go and hike Camelback or something. I need to clear my head for just awhile.

The boys’ are excited to watch the Packers football game today (Go Packers!) and they also have a birthday party to go to as well. Woody and Quinn are still asleep and I am cuddled on the couch with Ro and Liam watching Mickey Mouse. Ronan does not want to do anything; except have me be by his side. The little guy gets upset if I even leave his side to get up and try to do some things around the house. Macy and I have been laughing about this on the phone and calling him my warden. He certainly is the one who rules the household around here. I don’t mind, I secretly like being his slave. Especially when he looks at me and tells me I’m the best mommy in the world. It’s moments like that, that make me realize I can get him through this because he is so worth all of this.

On Friday night I got a call from my OBGYN,(the BEST one in the world, Dr. Kathleen Schwartz) We have been trying to connect forever but I keep missing her when I am in for my visits. She is the one who delivered my twins and Ronan. It was so nice to hear her voice and to talk to her for awhile. The first thing I said to her was, “Can you believe this is happening to us?” She was very sweet and very concerned and it was nice to catch her up to speed on things.

All of my little monkeys are up now so I’ve got to get breakfast made. Have a great morning… I basically just wanted to update you on Ro’s fever. Hoping we continue to keep him home. Thank you Stacy Frakes for saving my life with your Hava Java delivery this morning! You are the BEST!!!!!

If I could open my arms
And span the length of the isle of Manhattan
I’d bring it to where you are
Making a lake of the East River and Hudson

And if I could open my mouth
Wide enough for a marching band to march out
They would make your name sing
And bend through alleys and bounce off all the buildings

I wish we could open our eyes
To see in all directions at the same time
Oh, what a beautiful view
If you were never aware of what was around you

And it is true what you say
That I live like a hermit in my own head
But when the sun shines again
I’ll pull the curtains and blinds to let the light in

Sorrow drips into your heart through a pinhole
Just like a faucet that leaks and there is comfort in the sound
But while you debate half empty or half full
It slowly rises, your love is going to drown

Sorrow drips into your heart through a pinhole
Just like a faucet that leaks and there is comfort in the sound
But while you debate half empty or half full
It slowly rises, your love is going to drown

Sorrow drips into your heart through a pinhole
Just like a faucet that leaks and there is comfort in the sound
But while you debate half empty or half full
It slowly rises, your love is going to drown

Sorrow drips into your heart through a pinhole
Just like a faucet that leaks and there is comfort in the sound
But while you debate half empty or half full
It slowly rises, your love is going to drown

Your love is going to drown
Your love is going to drown
Your love is going to drown
Your love is going to drown
Your love is going to . . . .

Do you know if this hotel is pager friendly?? I’m not getting a sig’ on my beeper.

It’s days like today that make me really angry at cancer. I pretty much sat and held Ronan the entire day. We snuggled in bed and on the couch and watched movies. He won’t let me leave his side; not that I would want to. We watched “The Fantastic Mr. Fox,” and the ever so appropriate, ” The Hangover.” (hence the title of my post tonight) I seriously think that is one of the funniest movies ever and I don’t think I could ever get tired of it. Ronan laughed a lot during the movie in spite of his pain. I’m not censoring much these days from him, especially if it makes him laugh. He is feeling awful and has been fighting a low grade fever most of the day. I’m pretty sure he’s developing Mucositis, just like he did with Round 4 of his chemo. He’s telling me his throat hurts, he’s not talking much, he doesn’t want to eat. He’s in pain and just wants to be held. I’m pretty sure we will end up at the hospital if I can’t get his fever to go away. I am positive his ANC counts are at 0. That means no immune system at all. Poor baby. I would give anything to take his pain away.

Our Saturday should have been spent at the twins’ basketball game and at our dear friends son’s 2nd Birthday party. I was so sad to miss both of those things today but I am glad Woody was able to go and take the boys. As my Niki said tonight… next year we will all be together to celebrate her little one turning 3. Thanks my friend, for checking on me the entire day even though you were in the middle of your son’s birthday. You are so amazing to me. Woody and the boys’ had a blast and came home so tired. They are now all snuggled up in bed while I sit here and will stay up as long as I can to watch Ro and his fever. I spoke to the on call doctor tonight and she said as long as his temp does not go above 100.4; we don’t have to come in. Hoping we make it through the night.

I still hate the nights. The nights where if and when I fall asleep, my dreams are filled with such vivid nightmares that I toss and turn all night long. The nights where I no longer get to sleep with my husband because Ronan refuses to share our bed with anyone but me. My poor Woo… what kind of a man would allow a child to kick him out of his own bed? Only the kind of man who has a heart of gold and who would give up anything and everything for his son. I feel awful. I miss Woody and our precious time we used to have together staying up late and laughing at silly things that we would talk about at night or watch on T.V. while the boys’ slept. I feel like the rug has been pulled out from underneath me in so many ways. I’m tired and we still have such a long road ahead. Will this nightmare ever end???? Will I ever get my normal life back??? Everything is forever changed; and it better be with a very sweet outcome. All of our blood, sweat, and tears will save our baby. I swear to god on my life. Fucking cancer.

That is all for tonight. Going to try to unwind while watching my sweet lil’ man sleep. G’nite, sweet dreams my loves.

xoxo

  • Instagram is my BFF

    Do you guys want a bedtime story for tonight? Please head over to rockstarronan.com and read the words of my beautiful @knjoy. I am beyond blessed to have this amazing soul in my life. #ronan #fucancer #rockstaronan #empiregogold @empirestatebldg #beboldgogold #ronan #rtf We woke up like this...flawless. Or just glitter. #ronan #fucancer #empiregogold #wearetheglitterpeople #humansgogold #rebelswithacause #becauseachildslifeisworthmorethangold #rockstaronan #whereispoppy?
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