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

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

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

Scans are done… now we wait

We are home finally from our long evening of scans. Ronan started at 4:30 this evening and was not finished until about 8:00 tonight. Dr. Maze was there, as always, to give Ronan his anesthesia. He stayed the entire time, even though I was told that he would more than likely not be there when Ronan woke up. He was, and that meant the world to us. He is truly a doctor that goes above and beyond. The world would be such a better place with more people like him in it. He takes the time to go over everything with us… to make sure we are being taken care of, listens to our question and concerns and to give us advice. We will forever be grateful for him. He has made a huge difference in this experience for us. Ronan trusts him and truly loves him. He is only really like this with Dr. Maze and our wonderful nurse, Sharon. Those are the two people Ronan trusts the most… and those are the two people I trust the most. It makes a big difference when you can look into the eyes of the person who is taking care of your child and see that they truly have a passion and love for what they are doing. I see it every time I look into the eyes of the both of them. It brings me a lot of comfort and somehow makes me feel like everything is going to be alright.

Ronan woke up really grumpy from the anesthesia. He got a little sick to his stomach and slept the entire ride home. He is asleep now and I am hoping he stays that way for the rest of the night. Poor baby. He had a hard day and spent the better part of it being upset that we were at the hospital and not at home. It’s days like today that I feel so heartbroken for him. I just want him better and healthy so he can go back to his life before all of this. I did my best and was strong for him all day long… I spent the entire time at the hospital talking him through everything and trying to distract him. He just wanted to be home with his brothers. I don’t blame him; I did too.

I got to spend some time with Tricia and Marisa tonight. They both came to the hospital so I wouldn’t have to wait alone. It was nice to sit and laugh with them. They know when I need a good distraction and waiting for Ro to come out of anesthesia is always hard for me. Thanks girls for sitting with me tonight and thanks Marisa for checking my blood sugar levels;)

This weekend we are going to lay low and enjoy our family time together. Ronan will start round 3 of his “Magic Medicine” on Monday and I just found out that we will have to be admitted into the hospital for his treatment. The dose is stronger so they will need to monitor him all week. Not excited about that but like always, we will make the best of the situation.

We should hear back about Ronan’s scans some time tomorrow. Praying for good news and praying hard. Sweet dreams my friends.