A day filled with angels

Finally, a day without any tests on my baby. We got very little sleep last night and Ronan was tired today. We spent most of the day curled up in bed together and then Mimi Kay came to see Ronan so I was able to leave for a while. I went home to a quiet house which was not as pleasant as one would expect. As soon as I walked into my house I felt weak and scared. I tried to keep busy by doing normal things like paying bills, laundry, etc….. but nothing was working. I walked into Ronan’s room and completely fell apart. I sat on his bed and the tears just came pouring out. I screamed into his pillow, beat my head against the wall, and could not stop from crying. I kept thinking, why me, why him, why us?!! After about 20 minutes of this I thought a shower might help. It only made things worse. I turned up the water scolding hot and let myself feel the pain of it burning my skin. I kept thinking, is this how my baby is going to feel going through chemo? Will he burn and hurt like this? I deserve to feel this way, not him. I let the water burn my skin for about 10 minutes and cried my heart out. I kept thinking, I’ve totally failed as a mother; I should have taken him to the doctor 2 months ago when he told me that one day, that his tummy hurt. In 2 days, I’m going to start putting poison in my baby’s body to try to kill this awful disease. This is so unfair and still can’t be real.

When all of this started happening, my friend Lauren kept talking about baby Jack. He is a 3-year-old who has been diagnosed with neuroblastoma as well. Lauren knew of baby Jack from a friend of a friend and passed along his mommy’s number to me. I met Laurie, Zac, and Jack a couple of days ago and they have given me so much hope. Jack is such a beautiful little boy and is responding so well to his treatment. I instantly felt a huge connection to Laurie. It’s just sad that it has to be in this situation because I could tell right away that if these were  normal circumstances, I would absolutely be friends with this girl. After sitting with Laurie for about an hour we learned that Ronan and Jack are only a day apart and they were born in the same hospital. How’s that for luck?? Shitty, if you ask me. Laurie is the one I called today while I was in the middle of my 2 hour breakdown at home. I hate that she has to be the one comforting me because she knows exactly what I’m going through. I wish it could have been it was just because she was my friend; not because she is mom who has been in my shoes.

I’m tired tonight and am going to try to get some rest. I wish I could go on and on about my day today and am sad I am too tired to get into how amazing people have been to us. My amazing friends and family, strangers that have heard our story are dropping off beautiful gifts, cards, and just kind words. I will save that for another day and also the story about the 80-year-old woman who was staring at me today while I was getting my twins’ shaved ice. This woman started a prayer circle in the middle of the store because the owner told her about Ronan and prayers are what she just happens to do morning, noon, and night. Angels are all around us. The people who have been kind enough to share their similar stories with me as well. Taking the time to talk to me and reassure me that everything is going to be o.k. I am finding a lot of peace in a time of complete and utter chaos.

Goodnight my angels.

xoxo

I saw a glimmer of hope tonight…. and I’m running with it.

So last night was rough. After a 2 hour meeting with our oncologist, Dr. Wood; Woody (talk about a sign, Dr. Wood and my husband, Woody:)) and I were completely overwhelmed and had no idea where to turn. We were basically given 2 options for Ronan’s treatments and had only heard the opinions of our one oncologist here (who is amazing) and his “team.” Around 9:30 p.m. we called in our own special team to consult with. My twins’ godmother, Karen Kotalik,(who i would trust with my life) her brilliant husband, E.J.,my dearest friend and Ronan’s godmother, Trish, her amazing boyfriend, Max and last but not least, my other BFF, Lauren, via telephone… who has been researching morning, noon, and night for me. We sat in the cafeteria for hours and hashed out numbers, results, treatments, side effects, doctors, hospitals, resources, etc…. I felt lost, scared and exhausted. It also may have had a little something to do with the fact that I’ve had about 5 hours of sleep in the past few days. Our doctor basically wanted an answer in 24 hours. I freaked. 24 hours to decided the fate of my precious little guy. How in the world did they expect us to come to such a huge decision so quickly? It seemed so unfair and cruel. But unfortunately, time is not on our side. And decisions have to be made sooner rather than later. We compiled a list of the people we needed to get in touch with for the next day. The best of the best doctors in neuroblastoma, hospitals, people who have been through this, etc…. We spent all of today making phone calls and getting Ronan’s information to all the right people. I was amazed at the positive responses we got from doctors all over who were willing to take their time to talk with us. After a morning spent researching, I went home and met up with Woody and we were both in agreement on what to do. The way that the pieces fell together was almost like a little bit of  magic/art/science/ and love. I’m not going to go into details about what road we are taking on here. That would take way too long and the details are very difficult to explain as a mom. I can tell you that after meeting with Dr. Wood again tonight, that he is in agreement with us that we have chosen the right path. Last night when we met with him Woody straight asked him, “If we do this treatment, is this what you would do for your son? ” He wouldn’t give him us an answer. Tonight with the different way we’ve chosen to go, Woody asked him the same question. His response was, “absolutely.” I know in my mind, body and soul that this is the right path for us to take. This is our best shot. Dr. Wood also said something tonight that will remind me that Ronan is no ordinary boy.  He told us out of all his patients he’s seen over the years, that he’s never seen anyone with the disease that Ronan has, act the way that Ronan is acting. Basically, Ronan should be acting like he is very, very, sick. This child is acting the complete opposite of that. If it weren’t for his black eye, incision across his head, the broviac catheter in his chest, you would never know that he is fighting for his life. This just proves what I’ve known all along about my beautiful little boy. He is a fighter, he is strong, and he is unlike anyone on this earth. My friend Lauren told me tonight after spending sometime with us that she physically felt something protecting us as soon as she walked into our hospital room. I couldn’t agree more. It’s almost like Ronan has his own private force field surrounding him at all times. It is a beautiful thing to see and feel. There is more to this than just this awful disease. Something bigger is out there and there is a reason why this is happening to us.

Thank you for following my blog and loving Ronan the way you do. Even the people who don’t know us at all. I am trying my best to read all of your comments and beautiful words. They are so comforting to me, especially when I am waiting around for Ronan to come out of anesthesia or back from test results. Mama needs to snuggle up with her little angel now. Goodnight to all my sweet angels out there. I will never be able to thank you enough for all you are doing. I am going to save that job for my Ronan Sean.

xoxo

Ronan with one of his angels, our Mimi Kay

My first true love

So we met with the doctor last night and while I was holding Woody’s hand I was trying to focus on all the information being thrown our way. My mind kept wandering back to Woody and I couldn’t even look at the doctor anymore, it was Woody’s face that I was staring at. I kept thinking, why him? How in the world could this happen to him? And I’m not taking about Ronan… I’m talking about my Woo. The most amazing man put on this planet and I’m not exaggerating. Anybody that knows my husband, knows how unbelievably rare and special he is. I am so pissed at myself that this has to happen to him. I know it’s not my fault and it’s nothing I did but i am still so mad and sad. My heart aches for him every second of the day. He is the last person that deserves this kind of pain. My dearest friend, Trish, always tells me he is one in a billion. My mom wants to clone him. I met this man when I was 21 and have never doubted in my mind that he was my other half. He is 100% too good to be true; but proves himself everyday to me. So, is this what our fate was meant to be all along? To face something so horrendous together because no matter what, we will survive. Together?Because we are strong enough as a team that we can beat this? I know one of Woody’s fears is that this is going to rip us apart. Not possible. No matter what, we are going to come out of this stronger. I know that for a FACT.

What day is it????

The days are so blurry I can’t even keep track anymore. So much has happened today, but I am only going to talk about the love I saw between 3 little boys. The twins came to visit!! We finally decided that it was ok because Ronan is looking much better. I missed the reunion because Wood and I were in talking with the doctor. From what Mimi Kay says, Ronan lit up like she’s never seen before. The 3 boys were so happy to be together you would have thought they were at Disneyland, not in a hospital.

It broke my heart when they had to leave. As they were saying goodbye, Ronan got so sad. I looked down and saw him trying to be so brave and tough, but his little lip started to quiver as he fought back the tears. Poor baby.

I could go on and on but my eyes are blurry and I am exhausted. Today was good for my Ronan’s spirit and soul. I physically felt the love that surrounds us and I know, no matter what, we are going to make it through this. xoxo

Love to all of our beautiful angels out there. Nighty night.

” I love you mama. I love you sooo much.”

Those are this words I woke up to around 4 a.m. this morning. Ronan had wrapped his arms around my neck and was telling me he loves me. That’s the baby I know. He’s still in there fighting away with his heart full of love.

Tricia’s visit

Tonight I got to go and visit Ronan. Maya asked if I would write a little and tell you how it was. When I got there, Mom and Ronan were snuggly in bed and Dad was on a hunt for vanilla ice cream at Ronan’s request. Mom is busy keeping Ronan comfortable, he loves her to read to him, scratch his head, rub his feet and he especially loves to hear both mom and dad take turns singing to him. But as Mom mentioned before, he’s mad. He’s mad and doesn’t want to say much…and that cuts mom like a knife. But being mad is just what we like to see because this angry boy has already started the fight and couldn’t be braver and stronger. So strong, that he didn’t take any pain medication all day and was refusing to take his tylenol. I want to tell you all what else I saw tonight, and that is two parents who are like nothing I’ve ever seen. An unbreakable team stronger than any words can describe, committed to fighting through whatever it takes. Dedicated to their precious son and to supporting each other. Maya and Woody we all love you, you are not alone, we are all here to join the fight. RONAN, just like his name sounds, is a WARRIOR and is going to win against this evil cancer! Mom said it right, you picked the wrong kid to mess with, Cancer!!!!

All you need is love

As I sit here writing from my iPhone, I am trying to block out the screams and cries of a six year old boy, Even, who we are sharing a room with. Not sure what kind of cancer he has but he’s 2 weeks into treatment. His tummy is hurting, his legs are hurting and he wants to know why he has to take so much medicine. I hear the desperation in his mom’s voice and know her pain. I’m waiting to wake up from this nightmare because this can’t possibly be real.
Ronan is sleeping peacefully beside me, knocked out from the benadryl and tylenol with codeine. His body is twitching and I wonder what he is feeling. I hope he is dreaming about playing baseball or chasing his brothers. I would give anything to trade places with my baby. He has never done a thing wrong in his life and so does not deserve this pain.

Being alone during these nights I find myself looking back at my life before this. It was so perfect it was unreal. Did I take too much for granted?Absolutely. While I was home today I walked into my closet and was immediately filled with embarrassment and shame. All those clothes, shoes, purses…. and for what? None of that matters. None of that is real happiness.
Once we get through this and are home with Ronan, I have a new plan for how I will live my life with my beautiful family. A new life for all of us full of wanting and needing nothing except for the love of family and friends that surround us. Good night to all my sweet angels out there who are cheering us on. I love you all so much.

Hard day.

Ronan is mad today. He keeps peeking at me with his one little eye that can open and I know what he is thinking. He won’t really talk to me. Gets mad if I talk to him and is fighting me on everything we do. I did get him to walk a little bit. Woody, a nurse and I took him out of the room and down the hallway to look at a pond and some trains. He didn’t say much of anything but we talked to him the whole time while he watched the train and fish as best as he could. I about lost it right then and there. In fact I did. It was the absolute saddest thing I have ever seen in my life. My beautiful baby, all bandaged up with his left eye swollen shut and his right eye hardly open. The nurse was trying to be strong for us, but I saw the tears pouring out of her eyes. So, today I am weak. But Woody is strong. He is holding me up with his amazing strength and words. I feel like shutting the world out, but I know I cannot. I need the strength from everyone who is supporting us. I cannot fight this alone and cannot shut down. Chin up, and boot straps buckled. United together we WILL get him through this!

Rough Night

Ronan was really restless most of the night. Lots of tossing and turning and seemed to be in a little more pain. They have taken him off of morphine because he is allergic to it. Having a hard time keeping him comfortable and quiet. I dozed off at one point and woke up to him sitting up and he had unwrapped his entire head. He had taken off the all of the bandaids and even the tight netting. He is wanting to feel his swollen eye and head and asking what happened. I’m doing my best to explain things to him and trying to tell him that he has to listen to me and not fight me on everything. Such a stubborn little guy. I have no idea where he gets that from;)

He drank a little sprite, ate some goldfish and wants to do everything by himself. Whenever I try to help him he says, “Stop, mom! I’ll do it!” He is sounding more like a 16 year old, not a 3 year old. We don’t have any tests scheduled today. We may be moved out of the PICU and up to floor number 2. Hoping he’ll rest well today and settle down a bit. He needs to heal as much as possible before we start the chemotherapy.

F U Cancer!!!!

Nights are the worst. It is during this time that my fighting mind, body, and soul want to shut down. Reality sets in, and everything slowly starts to seep in. While in the presence of Ronan, I always keep the positive vibes and thoughts going. It is sitting alone in a cafeteria, while trying to muster up some sort of an appetite that the evilness of this situation steps in and wants to take over. I am strong and push these thoughts out of my head. I have no choice. To be any other way would not be fair to Ronan. He needs me to fight 24/7 for him. And I do, even in my sleep. I will fight for my beautiful “Brad Pitt baby,” until we beat the shit out of cancer.

I thought about keeping this blog all business with only my positive, upbeat attitude. But I can’t do that. The darkside of what I am feeling and going through is real and painful. I need to be vocal about this and I need an outlet. This is me, this is real, there is no sugar-coating anything. I am going to scream, cry, cuss, and yell. This is my reality, this is my hell.