Dr. Maze – ROCKSTAR RONAN

Ronan. You Stink. You Smell like Beef and Cheese.

Ro baby. Hi. I love you. I miss you. For as often as I write to you, I still can’t get over the fact that I am writing to you because you are dead. This will never be o.k. with me. I will never get over this. I will never stop wishing this wasn’t my life.

Yesterday. I mean, really. Was yesterday really necessary? No. But we don’t live in a normal world anymore, so any kind of worry, becomes something major. Remember that CT/MRI scan Quinny had a couple of months ago? Your daddy followed up with a neurologist afterwords. They said it was nothing to worry about but we know that nothing to worry about will never exist again. They said they wanted to see us in 6 months just to be on the safe side. I got a call from PCH on Wednesday saying they actually wanted us to come in on Thursday for another MRI. They wanted to check the blood flow in Quinn’s brain. I, of course, freaked out. I was trying to drive to Dr. Jo’s office when I got the voicemail from PCH. I passed her office twice because that is how distraught I was over this voicemail. I showed up to Dr. Jo’s office, frazzled. I told her I was waiting to hear back from them to see if they were mistaken because the last I heard, we were supposed to come back in 6 months, not 2. I called Dr. Maze to ask him if he could figure out what was going on for me. Nobody could get a hold of the Neurologist to get to the bottom of what was going on. I told Dr. Maze we would just keep the appointment and do another MRI if that is what they wanted. I told him about Quinn and the way he has been blinking his eyes so much… kind of twitching. I told him how I had him at our pediatrician a few weeks ago and that I had mentioned this to her and she said it was probably due to his Type A personality and stress. But now I was convinced it was because he had a fucking brain tumor or something. Aubrey asked why I hadn’t told him this before. I told him because I have been watching it and didn’t want to make a big deal about it as Dr. Campbell told me it was due to Quinn’s anxiety. He told me to just come in so I could put my worry to rest. I didn’t argue.

I didn’t tell Quinn until Thursday morning, that we were going to have another test done. I downplayed it. I kept him home from school and told him it was because I wanted to have a day alone with him. I told him that I wanted to figure out why he was blinking his eyes so much, so were going to go down to PCH for another little test. I made it out to be not a big deal at all. We got to PCH and waited. My Mandy Bee came down to sit with us. She went back with us as Quinn went into the MRI machine. She rubbed my back and made me laugh by sticking ear plugs up her nose. She kept me from throwing up anymore than I had during the day. Quinn stayed calm while we waited in the loud, cold room with him. He was a little champ. As soon as we were done, we gathered up our things. Dr. Maze wasn’t there but I texted him after to tell him we were finished. He said he would call me after the techs read him the results. Mandy and I took Quinn to eat. I didn’t eat as I was too nervous but I sat and pretended that everything was fine as I waited for the phone to ring. It rang. I didn’t even get the chance to ask for the results as Dr. Maze told me that everything was fine before I could even say hello. There was nothing there. He was sorry that we had been put through this again because it wasn’t necessary. I thanked him. I wished it wasn’t necessary but as we know now, everything is necessary when one of your children gets cancer and dies from it. I came back inside to Mandy and Quinn. I told them both that everything was fine. Mandy sent me a secret text asking if everything really was fine. I told her yes. She asked me why I still had such a worried look on my face. I told her because my worry never goes away anymore. I worry about everything, Ronan. You. Quinn. Liam. Daddy. Mostly you.

I wrote the above a few days ago, little one. It’s been a long, hectic week and it took me some time to recover after Quinn’s 2nd MRI. I’ve been writing here and there to you…. but mostly I’ve just been back in my black hole.

Ronan. The Rabbit Hole. It’s a movie. It’s a movie with really good actors. It’s about a mama and a daddy who lose their 4-year-old boy. Not lose like lose him at the grocery store and then they find him 10 minutes later. Not lose like that time we lost Liam at Disneyland only to find him 5 minutes later. I so wish we had lost you at Disneyland only to find you again. I wonder if those parents, know how lucky they are. So, this Rabbit Hole movie. I don’t know why I even bothered tonight. I NEVER watch T.V. or movies anymore but I guess I was just wanting an escape. Leave it to me to go and watch a movie about something like a child dying. Defeats the whole purpose of my getting lost. I don’t know why I can’t just ever seem to take the easy route with things. I should have just put in a mindless comedy. Something that would maybe make me laugh for a second. I guess it was more curiosity than anything. I guess I was hoping Hollywood would get it right. I should have known better. They didn’t even scratch the surface, Ronan. Maybe if I were a normal mom, watching this under normal circumstances because all of my children were alive…. I would have felt differently tonight. If I would have watched this 2 years ago, when you were healthy, maybe I would have thought this movie was so gut wrenching and sad that I would have left the theatre a wreck. Tonight, I almost laughed out loud at some of the scenes. I was also so distracted the ENTIRE movie by Nicole Kidman’s overly plumped up lips. What do they use to inject lips with these days? Collagen?? I’m clueless to things like that but whatever it is…. all I have to say is WHY??? I could not focus on the movie because her lips distracted me the entire time. That lady is so pretty. She is so pretty without those pouty lips. They took away from her character. Hollywood botched that one fo’ shizzle. But they managed to throw in all the stereotypical things that you would assume parents go through when losing a child. The struggle with GOD. The stupid shit people say like, “God needed another angel.” “This was God’s plan.” “He’s safe because God is taking care of him.” Nicole Kidman did freak out in a scene where a god comment was made. It made me laugh because for .1 seconds, her character reminded me, of me. They went on to show the stress it puts on a marriage. No shit. Really???? The time frame of moving on and packing up a room and getting rid of clothes. The Grief Support Group. The friends leaving. The fights with family. YAY FOR HOLLYWOOD! You got it right on the generic surface level. Who wrote this movie? Did they not get any input from real parents who are surviving something like this?? I think not.

They left out so many things, Ronan. They left out how after you lose the most precious thing to you, how the world around you literally feels like it is caving in, every second of the day. How after each day you survive…. because it is only about survival in the beginning…..how you fall into bed, and pray to anyone who will listen, not to wake up. For somebody to have mercy on you because out living your child is not something you signed up for. What about the sleepless nights? What about the pacing around the house, constantly looking for you?? What about the days that you cannot even leave the house because you cannot stop throwing up? What about the obsessing about what you could have done, differently? What about the buckets of tears that are never-ending and you swear you are going to choke to death on them? What about the way you don’t ever escape your own head and how you wish for anything but this life? How you wish to be beaten, raped, tortured, burned alive….. how you would endure any kind of pain to have your child back?? What about the way that this reality is so much…. too much…. so some days you spend the entire day, pretending like your child is still alive because on those days knowing that they are dead, it is just too much to handle. What about they way you feel so alone, even though you are surround by the most loving people on earth. What about the shame, anger and guilt that want to destroy you. What about how everyday is a fight. How you feel like you are swimming against the tide, day after day. How you have to watch as the people who care about you, look at you with pity… worry… and sadness. How you long to feel things like happiness again and wonder if it will ever come. But then you also wonder if you even deserve it. They forget to portray how the most simple things, become so difficult. How even remembering to breathe, is a struggle. What about the physical pain? The way your entire body aches. The way your throat feels so tight and dry. They knots that are up and down your back. The way your head feels like it has been in a vice. How you watch as everyone around you, goes on with their lives and how hard it is to see. How everyone expects things from you and doesn’t understand why you can’t come to holiday celebrations, birthday parties, dinners, etc….. Please, somebody cut the bereaved parents out there s0me slack. How nobody understands how hard it is to just function, let alone deal with all the social pressure of “moving forward.” How nothing is normal anymore and everyone needs to stop acting like it is. How your dead child, is so easily forgotten and how people just seem to want to ignore the fact that they existed. As if this will erase the pain?? Never. How you are blinded by survival because that is all you are trying to do, is survive….. for as much as you don’t want to. Because I know if you are a mama or daddy who has lost a child, you have wished to not survive this a thousand times. They didn’t touch on what it is, that makes a bereaved parent, go on with life. Is it Fear? Hope? Love? Guilt? Beliefs? All of the above, maybe? I’m still trying to figure that one out.

Ro baby. Did you see us on Saturday? We brought a tree and decorations to PCH and decorated a tree, in your honor. It was the best tree, we’ve ever had. It was so hard to do. It is on the 7th Floor of PCH. The Oncology Floor. We saw Dr. Eshun and gave him a hug. I love that man. Kind eyes. Kind smile. Kind soul. He is not only a good doctor, but a good man in general. I am so very thankful he was the one who had the privilege of taking care of you. I know he will never forget you. Your Dr. Maze came up to see us. I tried to ignore the tears in his eyes as he gave your Daddy a hug. Fucking Mother Fucker Cancer. I hope your tree will make some kids, smile. I put some special Captain Rex’s in the tree, just for you. I love you. This would have been your favorite tree, ever. Why haven’t we always been decorating our Christmas trees, in a Star Wars Theme? It made so much sense on Saturday. I was mad at myself for conforming the years before with traditional trees. Why is it, because you are dead, that the tree we did for PCH, was our best tree ever? The most fun. The most like you and your brothers??

Alright little one. Much more to write, but I need to try to sleep. I am driving up to Sedona tomorrow to see Dr. JoRo so I need to try to sleep. We watched “Elf,” tonight with some friends at the Montelucia Resort. I missed you every second. I cried. Your daddy cried. Everything in that movie, reminds us of you. It was one of your favs. I used to love how you would always quote Buddy the Elf. You would always say, “Mom. You stink. You smell like beef and cheese.” I would then, tickle you until you could take no more. I’m sorry we had to be there tonight, without you. I’m sorry we have to go out and do “normal,” things without you. I thought it was going to be a good family night. I am trying to make us do more of those things. Everything just feels so wrong, Ronan. I love you. I miss you. I hope you are safe. G’nite baby doll.

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I need a sign! A sign that hangs from my neck and reads, “I just lost my son to cancer. Please be extra gentle.”

Ronan. It’s bad here when I’m quiet. I know you know that. You know about the CT scan that I’ve had scheduled for Quinn now, for a couple of weeks but haven’t really said anything about it. He’s been having headaches. And in my mind now, headaches mean one thing. Why cancer, of course. Obviously. Because that is logical to the mom whose son who has just died of cancer. Logical, rational, and a given. So I have been sitting with that, for a couple of weeks now. That Quinn has cancer too.

Today was the day. I woke up, as it were just another normal day without you. Quinn knew we had an appointment and I worked really hard as to downplay it so he wouldn’t worry. We were on our way to PCH and the questions started. Questions once again, that an 8-year-old should not be worrying about but he does because this is his life. You. His best friend, got sick and died. He knows he could very well be next. Any of us could be and he knows nobody is immune to cancer. Such a big reality for a little boy to comprehend. But he does, so much more than I often realize. He is so smart and wise to the cruel ways of the world. I know his mind works a lot like mine in that he quietly sits back and absorbs in everything that is said and done around him. He absorbs it all, like a sponge and picks up on way too many adult like things. He’s has always been this way. I remember when he was about 3, I had to stop watching the news in front of him because he would ask so many questions about the stories that were being told, and he would worry so much about the bad things that were going on in the world. My very intuitive child. A blessing and a curse all at once.

As we were half way to PCH the questions started. “Well what if they do find something? Then what? Am I going to die?” I did my best to reassure him that he was going to be perfectly fine, but that we were just being extra careful because we all now know how precious life is. I spent the entire ride there explaining as much to him as I could without it being too much. He is so smart I know he read right though my B.S. I know he didn’t believe a word of what I was saying. I remembered how at when you first to sick, one of the first things Quinn asked me was if you were going to die. Of course I told him, No. I think back to this often and it destroys me. Not only did I fail you, but I failed your brothers because I made a promise to all 3 of you, that we would get you better. This is where so much of my pain and guilt comes from. It overwhelms me most of the time. I let all 3 of you down. That is a heavy weight to carry around with me every second of the day. But it is mine to carry and as a mom to you 3 beautiful boys, I don’t have a choice now. It’s the frame of mind that I am in and maybe someday, I will be able to let go of some of that weight. But not today. Not today as I walked through the doors of PCH with my hand intertwined with your brothers. Putting on my bravest face as I checked him into admitting while he watched my every move as I filled out his paper work.

“Where is Dr. Maze, Mom?” Quinn asked as he looked up at me with his big, curious eyes.

“He’ll be here in a bit. Just sit still while I fill the rest of this paperwork out.”

“Well what is a CT scan mom? Exactly? And how long does it take?”

“It’s where they take a picture of the inside of your head. It takes about 30 seconds. Then we will be done and can leave. It’s easy, fast and it does not hurt at all. You just have to hold still.” I said matter of factly as I am all too familiar with a fucking CT scan.

I finished my paperwork and a few minutes later we were taken back to the imaging center. The CT scan was done within minutes. We were sent down to the waiting area, to have a seat. We put our things down and I left them there so I could run Quinn to the bathroom. As soon as we came back a lady came rushing by. “Aubrey is looking for you,” she said. I told her thank you and I sat down with Quinn. Dr. Maze found us and did what he does best which is cater to the little ones. Quinn was putty in his hands. I sat back and tried my best to let everything slip away as I knew at any moment, the CT scan was going to be read and I was going to be teased about being the extra paranoid mother and sent home. Except for 2 minutes later, the complete opposite happened. I think Aubrey slipped around the corner for a second but not before the doctor could get to me to deliver the wonderful news. “Well, we found a small lesion. Which will require an MRI, but you can come back in about a month for that, because I am sure it is nothing.” Aubrey reappeared just in time to watch the color drain from my face and the tears well up in my eyes. “What?” I said. “You found something? There’s something there?”……. mama. breathe. do not get hysterical. hold it together. please. my brother is right beside you. he is so aware. he is scared you cannot panic in front of him. please. i will take care of him. I listened to your words as I gave Dr. Maze the look which was pretty much, what the fuck is going on and you have GOT to be fucking kidding me. This cannot be happening. Dr. Maze pulled Dr. icannotrememberhisname aside, around the corner so we could not hear what was being said. I’m sure it was something along the lines of, “This mother, just lost her son to cancer. He was a patient here. She is not going to be o.k. with waiting a month for an MRI. It needs to be done, today. As in now, so please make it happen.” Dr. nofuckingcluewhathisnamewas, reappeared again. “Dr. Maze told me your situation. We will do the MRI today, but I don’t want you to be upset, because I am sure it is nothing.” The tears were pouring and Quinn was pretending that he wasn’t watching, but I know that he was. I put the waterworks on hold as I had to step it up and put myself aside. It took everything I had, not to throw up all over that floor today, in front of everyone.

I wish I would have walked into PCH today wearing a sign around my neck that said, “My son just died of cancer. Please be extra gentle with me.” I wish I could wear that sign around my neck, always so people would know, you just cannot say to a mother who has just lost her son to cancer, “Oh. We found a spot. See you in a month for an MRI.” I’m sure it happens all the time. And not everyone has a Dr. Maze to swoop in and save the day. I am sure I would have found a way to tell this doctor today, about our “situation.” But I am so very thankful I did not have to. I don’t know how I would have said this, in front of Quinn, without scaring him to death. I don’t know how I would have said this today, without completely losing it.

Dr. Maze went back around the corner and I sat and looked your brother in the eyes, as it was his turn to let the tears pour down his cheeks. I grabbed his hand.

“Buddy. It’s going to be fine. I promise. We are just being extra safe, because it is smart to be extra safe. And we are a really smart family. You heard that Doctor. He wanted us to come back in a month, because that is how sure he is that is it nothing. And you know what? Normally, I would listen to that. But who wants to wait around to come back in a month when we can just get it done, today. O.K.? I know you are scared, but I promise you are going to be fine.” I have no idea, where I found the strength for these words today because the evil little voices in my head were saying over and over and over again…. “Your son has cancer. Your son is next. Everyone you love, is leaving you….. everyone you love is dying….. so just stop trying to fight it. He has cancer now, too. So sorry, but this is life and you cannot control a thing.”

I was able to calm Quinn down. Dr. Maze put an IV in his arm and we were sent off for our MRI. He said to me, “Do you want me to phone Woody?” I told him no, I would handle it. The thought of having to call your dad at this point was too much. I know how much he worries. How in the world was I possibly going to tell him, “Hey by the way, the CT scan came back and Quinn has a lesion, can you do your best not to panic and just come down here?” I was thankful when your Daddy did not pick up and it went straight to voicemail. There is no fucking way, I was going to put your Dad though that today, if this perhaps did turn out to be nothing.

“You’ve got this, Maya. You are strong. You do not need to worry anyone else, if it is not necessary. Just wait it out. Just get though this, alone. Woody. Poor Woody. Do not put this on him yet. You are here. You will deal with this.” A picture of your Daddy flashed through my head of him having a heart attack on the spot after my phone call. To me, I was saving his life, by just toughing it out, until I knew for sure what was going on.

We walked through halls of the new building, only to be taken right back to where it all began with you. It was an out of body experience as held on to Quinn’s hand and we passed by the Koi pond, by the PICU, when you first had your surgery. Where we sat and watched the electronic train and your little head, was wrapped up, like a mummy and your eyes were so swollen shut, that you could hardly see. The lady who walked us down the hall did her best to make small talk about the hospital. “Here is our wall of therapy dogs. They help the sick kids.” I just replied to her, that we unfortunately, were all too familiar with the pet therapy dogs. We got to the MRI area and sat and waited. I did what any totally awesome and rad mother of the year would do and put on South Park for Quinn to watch on my iPad. He was giggling within seconds and seemed to forget about the IV in his arm and the reality that hung over his head like a black, scary cloud. Our sweet Angela came out to give me a hug. Remember her? I know you do. She always took such good care of us. She was great today and helped to keep me calm with her beautiful smile and kind eyes. Plus it was comforting to me that she knew you, so she understood the best way to keep me calm which was just simply by being her sweet natured self.

Dr. Maze came busting through the doors, ready to get the show on the road. We put Quinn on the table so he could go into the machine. We put earplugs in his ears, I kissed him and told him how brave he was and how this was going to be a piece of cake. He asked if I would stay in the room with him. I told him, of course. I stepped out for a second to set my things down. Dr. Maze was still inside and I just looked up at him. I had no idea how I was going to get my feet back inside of that MRI room as they felt like they were stuck in quicksand. He said, “Aren’t you coming in?” I hesitated. I almost told him I needed to go and throw up first. I took a deep breath and said, “Yes. I’m coming in.” Once again, I didn’t have a choice. Quinn wanted me. Quinn needed me. So for me to have been anywhere else, would have been wrong of me to do. It did not matter how horrific it was for me to sit and watch him in that MRI today. All of the loud noises, flashbacks of you… I was so cold…. then so hot, light-headed, nauseous…. The MRI lasted 30 minutes. As soon as it was over, Aubrey in his ever so present voice came through the doors…”It’s normal. It’s normal. It’s normal. There is nothing there. He is fine.” The words, “It better have been fucking normal because I cannot talk anything else,” just flew out of my mouth. I hugged him. Told him thank you for the millionth time. He told Quinn to have me take up smoking to calm me down. I told him to shut up and that was an awful thing to say. I left there today with my arm wrapped around my little boy, my legs felt like jelly, and my head was about to explode. I managed to get us to the car. I called your Daddy to tell him everything. I was glad I did not give him the news before we knew what was going on. I was so happy to call him today and to be able to say, “Hey they found a little spot, but it is nothing. They did an MRI and it came back as normal.” Your Daddy just about passed out hearing those words. I calmed him down and he came to meet us as he knew I was very badly shaken up. Quinn’s lesion is just a normal development of the brain. His headaches are more than likely, caused from stress. We will of course continue to watch him and do whatever it takes, to try to help him not to worry so much. Poor little guy .

We got though today, Ronan, with a lot of love from you. You kept me calm when nobody else could have. You gave me strength, when I didn’t have any left. And you made it so that Quinny is fine and is not dying of cancer. Well, at least not today. I hate to sound like such pessimist, but it is a part of my personality trait now. I’m learning to embrace it and just roll with it. I don’t think I have much choice as I’m not getting rid of her anytime soon.

So much more to tell you. I took Quinn to Miss Katie’s later tonight. We played and worked. We hashed out the Fashion Show things which are coming along really well. I miss you every time I’m in her shop. You would have gone crazy over it. I had a Kathy stop by from MISS today. She works for Dr. J. She wanted to ask me if I would be an Ambassador for the MISS Foundation. We went over what all that meant and I told her I would be honored. I would do anything for Dr. J. I will touch on my next blog what I am going to be doing as I am much too tired to continue the writing tonight. You know I still went out for the nighttime slayer run though, right? Of course. It was awesome. Not another person in sight. Just how I like it. Dark, alone, and scary. After that awful day, a late night run was a MUST. I’m home. I’m safe. I wish you were home. I hope you are safe. You are changing things so much Ronan. It’s amazing to see and to feel. I’m sorry it had to be you. I’m for sorry, that I couldn’t save you, Ronan. I love you, Baby Doll. Sweet Dreams. Thanks for taking care of us today.

Learning how to live, half alive

Ronan. My heart is still heavy. My mind is still a mess. I didn’t cry today though. I have no doubt that my pillow will be soaked tonight when all is quiet and the memories of you trickle in. Night time is hard. I fall asleep and wish for you to wake me up with one of your famous, “Good morning, Mom!” You were always so excited for our days. Back when you were healthy I would pretend I was still asleep just so I could listen to you run to my room after you had woken up to give me a kiss and tell me good morning. It was one of my favorite things in the world. You would never want to get in bed with me and cuddle; instead you would demand that I get up to make your breakfast and wake up your brothers for school. I was always happy to do this for you. Everyday with you was the best day of my life. I can’t believe I will never have that again. I would give anything for you, Ronan. I remember how when I would take you out, how many people would stop me to tell me you were the most beautiful boy they had ever seen. I used to joke with Tricia that I felt like I was with a celebrity when I was with you. We called you our mini Brad Pitt baby. You had an impact on everyone even before you were sick just because of the beauty that people saw from the outside. They didn’t even know the beauty you possessed on the inside. I still can’t believe you aren’t mine anymore. I still don’t understand why you had to leave. I asked Dr. Maze if he thought that you heard me as I was talking to you before you went… those last few minutes when I told you it was time to go. When I told you to come with me, because we were getting out of this place. He says he thinks you did, as many people say a persons hearing is the last thing to go. I wish I would have said more to you. I wish I could have told you everything I was feeling in my heart but that would have been impossible. I know you know how much I love you. I will never get over the fact that I alone couldn’t save you. I’ll always think that I let you down because I couldn’t fix you. I know there was nothing I could do as your disease was so uncontrollable but that guilt will never go away. I am so, so, sorry Ronan. I would have traded my life a million times over for yours. I think about this every single day.

I’m not sure what just happened…. except for while I am writing to you I am of course listing to Pandora. I have it on the Coldplay playlist. Right when the tears where pouring down my cheeks, this random song came on. One I have never heard before but here are the lyrics…….

Come thou fount of every blessing
Tune my heart to sing thy grace
Streams of mercy never ceasing
Call for songs of loudest praise
Teach me some melodious sonnet
Sung by flaming tongues above
Praise the mount I’m fixed upon it
Mount of thy redeeming love

Here I raise my Ebenezer
Hither by thy help I’m come
And I hope by thy good pleasure
Safely to arrive at home
Jesus sought me when a stranger
Wondering from the fold of God
He, to rescue me from danger
Interposed His precious blood

O to grace how how great a debtor daily I’m constrained to be!
Let thy goodness like a fetter, bind my wandering heart to thee
Prone to wander Lord I feel it, prone to leave the God I love
Here’s my heart, O take and seal it, seal it for thy courts above

Whatever. I’m still too mad to think this is anything. But I will say that the piano playing this song was pretty. I miss you so much. I know I tell you this all of the time, but I will miss you for the rest of my life. I worry so much about you. I still cannot believe you are safe and happy without us. How could that be possible? I know I took better care of you then anyone. You deserve to be with me still. Your daddy watches me and the way I sit and am still with my thoughts. He knows I am tortured. I actually said to him that we made a mistake with your treatment. We should have done this, we should have done that, we should have been more aggressive. I know I am wrong about this. Nobody knew what was to come. Your daddy talked to all the best doctors and they all agreed with what we were doing. I told your daddy we should have had you scanned after every round of chemo. Nobody would have done this for us. But this is the only way we would have known that everything was spreading so rapidly. The day of your last scans, at Sloan…. Dr. Kushner’s face will haunt me for the rest of my life. He knew you were going to die. He couldn’t even look at me, Ro. Walking out of Sloan, they all knew you were going to die. But I wish they could have told me, instead of avoiding me and my tears. I don’t think badly of Dr. Kushner at all. If I saw him today, I would give him a great big hug and thank him for all he is doing to try to figure out this disease. I guess I’m just having a hard time because I feel like I didn’t get closure with him. I feel like he owed you more than the send off he gave us. But I also get that he is a man. A brilliant man and an amazing doctor. And I am sure he feels like he failed us and that is a hard pill to swallow. I get all that. But I also get that you deserved more, little man. Because you are going to change the world of this disease and I know someday he will be telling you thank you, Ronan. I will make sure of this. You will not be forgotten by him. And someday, I hope to replace a new image of him in my head from the awful one I am left with. I don’t want to carry that around with me forever.

I drew your name in the sand tonight while I was on my run. I went for a run on the beach in the dark. It is the only way I like to run now. In the dark, alone, where I don’t have to look at anyone in the eyes and I don’t have to see all the happiness surrounding me. All of that stings so badly. I don’t know if that pain will ever go away. We used to be that family. The perfect family that had it all. We had it all because of you. Now we are all so wounded, so empty. Although I did hear your brothers laughing today. I played with them all morning. I tried to stay focused on them, but my mind kept wandering back to how different everything would be about our day if you had been with us. Nothing about our day would have been the same; you changed everything.

G’nite my little man. Everyone is asleep now. Quinn is right next to me, all cuddled up with your blanket, GiGi. I’m going to cuddle up to him now. See you in my dreams, baby doll. I love you.

xoxo

The sweetness of simplicity

Hello my friends. I’ve been hiding from you too… hence my writing to just Ronan; which I will continue to do as it feels good to me. But I still want to write to you as well. I wish I could tell you things are better; but they are not. I wish I could tell you that we are learning to come to terms with all of this; but we are not. I know this is still all fresh and new and I imagine it will be years before we will learn what happiness feels like again. I know that the absence from Ronan will always remain in our hearts, in our minds, and in our souls. That will never go away. I am doing the best I can do; today. That could all change tomorrow. I can tell you that I didn’t end up in a mental institution like I had suspected I would. I can tell you that I didn’t blow my head off with a gun, like I have dreamed of. I can tell you that both of those things won’t happen because that to me feels too selfish and that right there will prove that cancer has completely won and I won’t let that happen. I won’t do that to Ronan, to Liam, to Quinn, or to Woody. Or to any of you. I can tell you that I am still here and one of the hugest reasons is to keep Ronan’s memory alive. I have a big job ahead of me and although I am not ready to fully embrace it yet; the time will come when I can and I will. I would like to hide out for a little while longer. I am taking a break from the everyday things and embracing the love from my husband and twins. It’s been hard. I feel disconnected from everything and everyone. I am having to learn to feel the love from my twins again. Not that it ever went anywhere, but when I was taking care of Ronan I was with him 24 hours a day, for 8 months and fully submerged in his world. The bond that came out of that is something that I will never feel again. Our relationship formed into something so much deeper than anything I have ever known or will ever know again. Our relationship was filled with a love so deep, so painful, so raw, so heartwrenching, that it went to a whole different level. And I know that I love my twins just as much as Ronan and I would have fought just as hard for them, but the fact of the matter is I didn’t have to. I went through this with Ronan and in 8 months I gave him every ounce of love that I had. It was intense and exhausting and I wish this would have a different outcome. I wish I didn’t have to pour everything I had into him just to have him leave here. I was prepared to give him everything I had for the rest of my life. But instead I had to give him everything I had, for the rest of his little life. And his life was cut way too short, way too fast. All of this leaves me feeling empty, lost, and extremely sad. I know I have to go on, that I have a purpose in life, but it does not feel that way at this moment. After 8 months of fighting, I am now left with nothing. The fighting is gone, Ronan is gone, and the quietness and calmness that is seeping in is not welcomed. I don’t want it, I don’t want to embrace it. I just want Ronan. I know that he is not going to come back, at least in the way he was before his death. So, I am going to have to learn to live a life again without him. I am going to have to work to rebuild our family. I know this is not going to happen overnight. Everyday for us is going to be a struggle. But I also know that my actions and the way I handle all of this is going to have a huge impact on how we get through this. So, I am going to take a little break from Phoenix. I am going to throw myself into the world of Liam and Quinn. I am going to love them with everything I have and Ronan is going to help me do this. I know he misses them almost as much as he misses me.

I’ll never forget at Ronan’s service when one of Ronan’s doctors, Dr. Wood, came up to me and hugged me. He then looked at me and said, “Please give those 2 boys the best life possible. They deserve it.” I made him a promise I would. I’m not going to let him down or my twins down. I will continue to be the best mom I can to them. I made a huge promise to Dr. Maze too. He is asking a lot and at one point I told him I could not promise the things he was asking of me. But today, I feel differently about it. I feel like I can maybe come through with what he is asking of me. After all he has done for Ronan, I am having a hard time ignoring what he wants. I am going to take these next few weeks and work really hard on some things for him. I told him that when I come back, I will try to be stronger because the way I left him, was awful. Awful in the way that I could not even drive myself home because I had to sit in my car and bawl for an hour as I did not want to go on. I somehow managed to drive myself home through all of my tears and anger. I somehow managed to let Ronan’s little voice guide me and listened to him tell me how I cannot give up so easily. I know he does not want to see me yet; he needs me to help save our family and to help raises awareness for the sickening disease that stole his life. Even though he is gone; he still needs me just as much as before. Even though he is still gone, when some stranger asks me how many children I have; I will always say 3. We will never go back to being a family of 4 again. We talk about Ronan everyday as if he is still here. That will never change.

Yesterday, I spent the day with Liam, Quinn, and Woody. Despite Ronan being gone; there was a lot of laughing from the twins. They are as happy as can be and I know a big part of that is all the time they have been having with Woody and I. Their happiness is so simple. It is because we are together, as a family, enjoying the laziness of summer. As painful as it is for me, I can tell it is a little healing as well. I’ve missed my buddies. They are such amazing little boys who have been robbed of so much. It’s time to slowly make things up to them. One day at a time. I am so thankful for them because I know without them, I would not be here. That I can guarantee. But they are here and they are the most beautiful little boys who love me so much. Who love Ronan so much.

Alright my friends whom I’ve missed so much. Time to go and enjoy my little men today. Blessings and love to you all.

xoxo

We miss you, Ronan.

Don’t stop believing

Ro baby. I looked for you all day. I was so sure you were going to wake me up this morning, as you have done every morning for the past almost 4 years. I woke up with a big, strange person in our bed. It was your daddy. I kept waiting for you to pop out in between us, but you never came. I got up, showered, and got dressed. I waited for you to come in and ask for me to put on some of my sparkly lip gloss that you liked to cover your face in. I waited for you to ask what it was that I was putting on my eyes as I applied my mascara. I waited for you to ask me to give your star wars guys a bath and for me to give you my hairdryer so you could blow dry them. You never came.

Quinn needed a haircut today. I got in the car and drove him to the barber. I looked for you in my rear view mirror, sitting back in your carseat. You weren’t there. Somehow, I got Quinny safely to get his haircut. I’m not sure I should have been driving today as everything is really foggy. My friend, Melissa came and sat with me. I told her how I needed to go to Nordstrom to return some of your Paul Frank underwear that came in the mail and to get Quinn and Liam some shoes for your service on Sunday. She came with me. She helped me get the sizes for your brothers shoes as my mind would not focus today. Everything is a mess. Everything except me. I’m o.k. Remember how a couple of days ago, I was hovering over you and I was crying?? You looked at me and said, “Mom, stop being sad.” You would be proud of me. I’m not sad yet. I’m trying so hard to make you proud. I am scared for the day when all of this hits me and I realize you are really gone. As of now, this all just feels like make believe. I still feel like this is just a trick or a nightmare that I cannot wake up from. Your daddy has been crying a lot. I wonder if something is wrong with me as I am not grieving yet. I’m numb to everything around me.

After I dropped Quinn off at home, I went to my hair appointment. I sat in the chair and was quiet for the most part. Katrina, who shaved your little head, gave me a big hug. She let me sit and just be with my own thoughts but we talked about you for a little bit. I got teary eyed, but did not cry. After my hair appointment, I went to see Dr. Maze. I brought him a coffee in your honor; but it was from A.J.’s and not Starbucks like we usually used to bring to him. We sat in his office for a long time. He has a picture of you up in the middle of his bulletin board. He misses you. I didn’t cry when I sat with him either. I never seem to, as you know he always has given me strength. He has become one of my best friends. Even though he is just a really old man 😉 We laugh about the day that I will push him around in his wheelchair. He told me his mum will look after you now. I had a dream about him saying this to me. That his mom would look after you now. I had asked him this in real life in a text message and he didn’t answer me back. But I dreamt he did and that is what he told me. I asked him today if I dreamed that or if he really had said it. He said that I had dreamed it, but that he knew she would be looking after you. That gave me peace because he loves her so much. I know she will take good care of you until I see you again.

After I left Dr. Maze’s office, I came home and helped your brothers get ready for their baseball game. They played so well and it was such a beautiful night. I kept looking for you on the playground, but I couldn’t find you. Then I remembered, you are gone. Since you’ve been gone something funny has happened everyday. That song by Journey, “Don’t stop believing,” has been playing in the background each day. Tonight, I heard it at the ballpark and it stopped me dead in my tracks. 3 days in a row I’ve heard that song. So weird. I know it’s you. It’s one of your little signs. I will never stop believing in you. At the ballpark, your brothers played an amazing game. They are happy, but they miss you a lot. Quinn was having trouble hitting the ball at one point and I asked for you to help him. I said, “Come on, Ro. Help your brother out.” You did. He hit it out of the park. Your dad and I stood together and talked about you and how you were always so proud and always held your chin up high. You achieved a lifetime of dignity in your 4 years of life that most people never achieve. Even when you died, your chin was held high. You are such an amazing little boy, Ronan. I am so honored I am your mama. I’ll never forget some of your last words to me. “Mama.” Me: “Yes, baby.” You: “I love you.” Me: ” I love you more, Ro.”

Tonight, we rode our bikes over to Uncle Jay’s house so Liam and Quinn could go swimming. I looked for you on your little bike next to me, but you weren’t there. Liam and Quinn swam in the pool and played basketball. I heard them laugh and looked up at the moon to tell you that I love you to the moon and back. I wish you could have been with us. Quinn took big fall on his bike on our way home. His little foot was so bloody and scraped up. We got him home and I thought of you and how brave you have always been. I tried to channel some of your braveness into Quinn. We got home and I did my first load of laundry since you’ve been gone. It was so weird. I still cannot go into your bedroom. I’m saving it for that special time when I know I am ready to fully succumb to this nightmare. I will use your room as the place where I can fully breakdown; when it is my time.

I’ll never forget how you looked hours before you passed. I could have sworn I saw your little eyes trying to form tears. I know it was because you were so sad to leave us. I hate thinking of you sad. I’m trying my hardest to block this memory out and think of you at your happiest times. The times that you were with us and such a carefree, healthy little boy. These memories will keep my heart warm for the rest of my life, baby.

I have to go now. Fernanda and Stacy are here and we are going to go over the way we are honoring you on Sunday. Even though we will honor you for the rest of our lives, baby. I love you, Ro. See you in my dreams.

xoxo

Where is Ronan?

Somehow, I am in my cozy bed at my house. I cannot get out of my bed. It feels like quicksand and even when I try to get up, it pulls me back down. My house and heart feel really empty. I hear people, but the biggest voice of all is missing. “Where is Ronan?” That is what I asked Woody. He just starts to cry. But really, where is he? Is he playing in his bedroom? Is he in the backyard? Is he causing trouble and running about the house? Is he playing Star Wars with his brothers? Then I remember. Ronan is gone.

Ronan really left a couple of days ago. His pain got really bad from his little liver failing and all we wanted was to keep him comfortable. The Ryan House was quiet but full of the people who are our family. Charisma spent the weekend, Susie came, Gay, Melissa, Stacy, Bethany, Tricia, Sarah, my mom, Mimi, Papa, Uncle Scottie, Auntie Karen, Aubrey, Marisa, Danielle…. I cannot remember who else. Mother’s Day was quiet and I stayed by Ronan’s side most of the day. I whispered a lot of things in his ear and although he was not responding much anymore, I know he could hear me. I told him all the things that filled my heart. How he was the best thing to ever happen to me, how he changed my life, how it was time to stop fighting, and just relax because I was going to take care of him forever. I sang to him, loved on him, and said our famous little thing we always said to each other, “Just you and me, baby.” As I sat next to him I prayed so hard. I asked for a few things. I asked him to please not leave me until Fernanda returned from her trip, I asked for him to please not leave me on Mother’s Day, I asked him to leave peacefully in the night, with me by his side. I begged the Heavens above to not be cruel in the way that they took him. He had enough and I wanted him to go in the most peaceful way possible. For the first time in his life, my little boy listened to everything I asked of him.

Quinn spent most of Mother’s Day curled up beside Ronan. I explained most of what was going on to him. He wanted to know why he couldn’t understand what Ronan was saying anymore and when he would start talking normally again. I told him that he was so sleepy, that he wasn’t going to be back to the way he was anymore. Quinn cried and slept most of the day away by Ronan’s side. He needed to have his time and his goodbye with him so I let him take all the time he needed. It was hard to watch my almost 8-year-old hurting so badly but it was a chapter that he needed to close in his life with Ronan. I wasn’t about to push him away. I talked to Liam about staying at The Ryan House with us or going home. He said he wanted to stay to be with Ronan and us. I told him how Ronan was not going to get better and that he needed to say his goodbyes. Little tears filled his eyes and he said he knew, but he still wanted to be with his brother. After 8 months of shipping my twins off I had decided that enough was enough and they would stay with us as long as they wanted. Fernanda had a firm talking to with me about this decision. I told her I would meet her halfway and only let Liam and Quinn see so much and how they would not be allowed to sleep in the room during the night with Ronan and myself anymore. They would have to sleep with Woody in the room across from us. She seemed happy with that outcome.

After a quiet Mother’s Day, night soon filled the air. I slipped out and let Mimi and Papa lay with Ronan and I tried to calm myself as much as possible. I was panicking, trying to come up with what I could do to save him and his little body that was failing. I asked for oxygen to be placed by him, to help with his breathing, I texted back and forth with my friend, Doriet, whom just lost her little girl. She was giving my ideas on ways to save him. I talked to my friend, Diane, who lost her little boy to this nasty disease years ago. I said things to her like what if he really didn’t want to go, but was fighting to stay alive and I was just pushing him down with all the pain medicine. She calmly talked me off the ledge and told me that the cancer had invaded his liver and there was nothing medically we could do to save him. I was still fighting for him, even though I knew he was ready to go.

I sat in the Sanctuary room with the girls for about an hour last night. Fernanda, my mom, Melissa, Sarah and Tricia. We had a lot of laughs and Sarah told us how she was getting a purple star tattoo this Thursday, on Ronan’s birthday. Before I knew it, everyone in the room had decided to go with her. This made my heart happy as the love of the people surrounding me is unbelievable. They truly are the most amazing girls alive. Around 10 p.m. it was time for me to get back to Ronan so everyone left except Fernanda who said she would stay and watch Ronan sleep so I could get some rest. I had the twins come in and kiss Ronan goodnight and I curled up beside him. I whispered little things in his ear and sang to him. I fell asleep as I could relax a little knowing Fernanda’s watchful eyes were on him. His breathing was becoming softer, his little feet were becoming so cold. Fernanda sang to him and rubbed him. I fell in and out of sleep. She left the room about 3 a.m. and the nurse taking care of Ronan patted me around 3:20 a.m. Ronan was ready to leave. I said to her, “Is he gone?” She replied, “Almost.” I grabbed on to my baby boy, whispered in his ear that I loved him, but it was time to go so he needed to come with me. I kept saying, “Come with me, Ronan. Let’s get out of here.” The nurse went to get Woody and when he got to the room, he kissed Ronan goodbye and that was that. His little heart just stopped.

Somebody came in asking if she could bathe Ronan with warm water and if we wanted his clothes changed. Woody left the room to make phone calls and I asked if I could please give him his bath. She said of course and brought me everything I needed. I stripped him down and washed his little body. I remember looking up at her and saying how no mother should have to do this. She replied, “You’re right. You are very brave.” I remember thinking to myself how I couldn’t believe I was giving my dead child a bath. It was so weird, yet so peaceful. I put on his favorite red Small Paul monkey pants, his Star Wars shirt and little Ralph Lauren socks. I kissed his cold little lips a dozen times and kept thinking I couldn’t believe I wasn’t ever going to be able to kiss them again. Woody came into the room and we sat I just stared at our son. We cried, held each other while looking down at his little body. I kept feeling him and kept telling Woody he was so stiff. It was all surreal to say the least; but I felt like Ronan was right there with me. Just because the shell of his body was gone, his spirit was still in the room. It has been with me the entire day which is maybe why I feel so at peace.

Leaving the room was the hardest part. Woody said his friend that he went to high school with was waiting outside as they were ready to take Ronan away. I told him that I wasn’t leaving him and he grabbed on to my arms and tried to pull me away. I cried that I promised I’d never leave him and it took awhile for Woody to convince me that he was already gone. I went and kissed his toes, lips, and pinky fingers one last time. I walked out of that room and went straight into the arms of Woody’s friend, Ardra, who runs the mortuary. I held onto her and told her to take good care of my baby boy and not to leave him. She cried with me and promised she would. I walked away before I saw them carry out his little body. I went into a room where my mom, Kay, Charlie, Scottie, and Auntie Karen waited for Woody and I. We sat for a while and no words were said as they were not needed. Woody and his family went to pack up our rooms and I sat with my mom and Karen. We talked quietly about what had just happened. We talked about Ronan and his life and how he had inspired so many people. That little boy taught me more in his almost 4 years of his life than anybody I have ever known. He was the proudest, most beautiful child that has ever touched this earth.

After Ronan’s body left The Ryan House, we had to go and wake up the twins. I quietly tapped Liam and told him it was time to go home. He was confused and I did my best to explain things to him. Woody picked him up and carried him out of the house. I snuggled with Quinn a bit and woke him up and said the same thing. He wanted to know if Ronan was coming with us. I explained to him that Ronan would not be with us anymore. He cried and it took awhile to get him out of the bed. He said he needed more time and I gave it to him. I had Ronan’s “Gigi,” in my arms and I gave it to Quinn and told him he could have it now. He wrapped it around his shoulders and I told him he could go into the room where Ronan had been and kiss his pillow. He did so and also laid down on the bed where Ronan had been hours earlier. I let him take his time and Woody then came and carried Quinn out into the car. The four of us drove home together as the sun rose. Ronan’s car seat was no longer in my car and I sat with Quinn on my lap and watched as Liam sat in the back as the tears poured down his little cheeks. We talked a little bit on the way home about Ronan and how he was no longer hurting and how peacefully he went to sleep. We all stumbled in our house and I insisted that we all lay down together and get some sleep. Liam tried to go to his room, to be alone but I told him that was not happening as we all needed to be together because we were all hurting. He listened and snuggled up between Quinn and Woody. I took some sleeping medicine and passed out for most of the day.

I sent my Mr. Sparkly Eyes a text and told him how I could not get out of bed. I asked him how I was ever supposed to face the world again as I never went anywhere without Ro, my little partner in crime. I don’t know the answer to this but I know Ronan will help me in everything that I do. He will guide me for the rest of his life just like he did his entire existence. Nothing I do will be without Ronan’s help and the love that we have for each other. It is eternal.

I know I don’t want to end this story. I want it to go on forever. I want Ronan to never stop inspiring you all just because he is gone. I want his name and our love story to live on forever. I want to keep writing to all of you. I hope that is o.k. I’m not sure what I will write about as that child was my life. But just because he is not here, does not mean our story has to end. He is with me and will continue to fill me with his love everyday. His love alone will keep me going and strong. I will not crumble up and die because he is not here. I will not let him down and I promise to make him so proud of me as I know he is watching everything that I do. Those eyes will forever be burned into my soul, the smell of his sweet skin, the touch of his perfectly plump lips and his little giggle will never be forgotten. My twins will be better boys because of him, my marriage will be stronger, and I will never take a second of my life for granted again. I would give anything to have him back and I don’t know if it has even hit me that he is really gone. I find peace in knowing that he is no longer hurting but cannot deny that my heart is broken beyond repair. All I want is my child back. My healthy child back before all of this.

I feel very angry and let down by a lot of people; but mainly by medicine and the doctors of the world who have not figured out this nasty disease. Mostly life in general as I have learned the hardest way how cruel it can be. Watching my child die from Neuroblastoma t was the most horrific experience of my life and nobody should have to go through that; especially in this day and age. I made a promise at the beginning of all of this to help find a cure and now I am more determined than ever. A cure begins with awareness and funding so I am going to work for the rest of my life on that part of all of this. All in the name and honor of my Ronan Sean Thompson. The brightest star in the sky.

I cannot thank all of my friends and family enough for their love and support through all of this. I would not be in such a peaceful place without them. I have no doubt that Ronan’s journey is not over… it will just come in a different form now. I cannot thank all of you who have been following me this blog and spreading the word about Ronan. We love you all so much. If you see me, please don’t be afraid to come up and tell me hello and hug me. Please don’t be afraid to tell me how sorry you are because of the pain you know we are all in. But please, don’t tell me things like God has a bigger plan for Ronan, how he belongs in heaven, how he is happy with God now…… because all of those things just piss me off. And I will punch you. I will never come to peace with any of those fucking saying and unless you have just walked through my exact shoes, you have no right to say those things. I understand if it is how you will make sense of all of this but to me, you can’t make sense out of nonsense and that is exactly what all of this is. Complete and total nonsense. This will never make sense to me as I know our family did not deserve any of this pain; especially not Ronan.

That is all for tonight my loves. Goodnight to my sweetest baby boy; Ronan Sean. My little seal, my little monkey, my little everything. I love you to the moon and back a million times over.

xoxo

No more plans…..just a new adventure

We started off the morning early as we got up and ready to take Ronan to St. Joe’s for his CT scan and RT. Dr. Maze met us at the Ryan House and then over at St. Joe’s just to make sure we were taken care of. He knew Ro did not need anesthesia, but came anyway to be supportive. After he got us settled, he left and we sat back in a room and waited for the CT scan to begin. Ronan did amazing, as always. He held perfectly still as they took pictures of his little body to decide where they would do the radiation today. After looking at the CT scan, Dr. McBride decided that Ronan’s pain is coming from his pelvic and hip area as the bones there have been eaten away at due to the Neuroblastoma. It is with radiation, that the neuroblastoma cells will be killed in hopes that the bone can heal back and Ronan’s pain will get better.

Thoughout this blog, I’ve always had a plan as far as what we would do with Ronan and his treatment. We chose what we thought was right, and I don’t have any regrets in the choices we’ve made; but it sucks when the plan you think you have in place goes arye. I’m done making plans for Ronan. We are going off for another adventure instead. This time, as long as Ronan remains stable, we will be leaving for San Diego on Sunday. Dr. Sholler has agreed to try something else for Ronan and we as parents, have decided to give it a shot. What do we have to lose? At this point, nothing. We are fully aware of the risks involved, but this is not the time to sit back and do nothing because we are afraid. I am more afraid of sitting back and watching Ronan get worse and worse as the days progress. Woody has been on the phone all day with different doctors all over the states and most seem to think this is worth a shot. We will be admitted to The Children’s Hospital of San Diego on Monday and we are praying that all goes well and Ronan can start treatment on Monday or Tuesday.

Here is a little info about Dr. Sholler and what therapy we will be trying for Ronan:

Dr. Sholler’s research focuses on new therapies for neuroblastoma and medulloblastoma. These neuronal tumors continue to be therapeutic challenges in pediatrics. Dr. Sholler has shown that Nifurtimox increases oxidative stress in neuroblastoma and induces cell death and decreases tumor size in xenograft models of neuroblastoma and medulloblastoma. Nifurtimox also decreases AKT phosphorylation increasing the cells sensitivity to chemotherapy. She is presently studying the mechanism of this drug, drugs effecting metabolic regulation and oxidative stress, and determining the best drugs to use in combination.

Dr. Sholler has completed a Phase I trial of nifurtimox. She has opened and is currently enrolling in a Phase II trial of nifurtimox in combination with cytoxan and topotecan for relapsed neuroblastoma and medulloblastoma patients. She will be opening this trial at other sites in collaboration with Dr. Roberts at Children’s San Diego, Dr. Ferguson at St. Louis University, Dr. Zage at MD Anderson Houston, and Dr. Eslin at MD Anderson Orlando. Within this consortium she hopes to bring new therapies through research to children with relapsed neuroblastoma and medulloblastoma.

Dr. Sholler’s lab is working in collaboration with Dr. Jeffrey Bond at the University of Vermont to understand the genomic differences within patients neuroblastoma cells. Understanding the specific biological profiles of patients neuroblastoma will lead to better understanding of the most effective treatment.

I am trying not to get my hopes up, but this just has to work. Our hearts were so broken when we left Chop as we were so sure MIBG therapy was the answer for Ronan. There are a couple of doctors who are advising against doing this, but there are also a few who are saying, “Why not.” Exactly. I’m not going down without a mother fucking fight for my son. I am not going to let him down as he deserves to be fought for like I’ve never fought before. Woody and I are both in total agreement on this; Woody is fighting just as hard, if not harder for our son. We will do anything we can at this point. There is nothing worse than sitting here, watching Ronan die. Because that is what he is doing. At least if we get him to San Diego, and try this clinical trial; the worse thing that can happen is ultimately, what is happening anyway. I don’t want him to die peacefully at The Ryan House while I sit here and just watch and wait. That’s not how this is going to go down. It’s not in our nature and it’s not in his.

As I have said before, we will not be cruel to Ronan and his needs. If for some reason, his pain gets worse within the next few days, we will of course re exam our decision. As of now, he is stable, his pain seems to be controlled, so we are going to take a huge leap of faith and do this. But it is not a plan at all. Plans always fly out the window. We are just following his lead on this journey of his and will do whatever we feel in our hearts that Ronan wants us to do. We want to take the twins with us, as we feel this is no time to be apart as a family. We need to be together for this part of Ronan’s journey. I’ve had enough of leaving them behind and so has Ronan. As long as we are together, Ronan will be happy and that is all that matters right now.

I got out of The Ryan House today and went to the twins’ baseball game. It was hard for me to be out in the real world, as always, but I did it for the sake of my twins. It’s hard for me to hear the conversations of others around me now as I hear bits and pieces of people complaining about the petty things in life. If they only knew how good they all have it. I kept thinking to myself about the baby boy whom I left back at The Ryan House, who is so sick with cancer and how we as parents, have been told that there is no chance for him to be cured. How am I supposed to go out into the real world anymore without it hurting so badly? All I wanted to do was run back to Ronan, to kiss him for the millionth time, tell him how lucky I was to be his mama, how sorry I was that he was hurting so badly, and promise him that we would get him better. I have been making this promise to him since day one. I did today for the sake of my twins’ but the sadness I felt while I was there was unbearable. Ronan should have been there with me, running around, getting dirty and watching his big brothers, play ball. I would give anything in the world to have those carefree days back with him.

I cannot sit here and wish for the past back though. The past is gone as we know it and we have to focus on the here and now and what we need during this time as a family. What we need is to be together and to continue to fight for Ronan. Each day that we don’t, we get closer and closer to losing him. He is just too special of a little boy to let go so easily. This next part of our journey is going to be hard, due to Ronan not feeling well anymore; but I know as a family, we can get though it. I’ve always loved the saying, ” Adventure is the spice of life.” It’s time to take on this new adventure and tackle it together with all the love in the world that surrounds us. I’m not giving up on hope, love, faith or Ronan. He is my baby and I know him best. I am going to listen to my heart and soul on this and we are going to turn this thing into the most positive adventure yet. If my son is going to die, it is not here and it is not now. I’m not accepting that this is the way he is supposed to go.

We have to be at the clinic early tomorrow for blood work and I’m assuming platelets for Ronan. I am also going to try my hardest to go to the twins’ school for the Mother’s Day Tea. Their little hearts will be broken if I do not show up. I have to be there for them and as hard as it is for me right now due to never wanting to leave Ronan’s side; I cannot let them down.

Ronan is sleeping peacefully so I am going to snuggle up to my little bug. Thank you all for sharing our story and loving us so much. I’ve tried my best to keep up on your comments as they mean so much to me. I am in awe of the love that surrounds us and will be forever grateful and inspired to be a better person because of all of you. So many of you love us without even knowing us. You’ve taken a leap of faith on our family and I feel you fighting right along with us. Thank you so very much. Sweet dreams my darling friends.

xoxo

Not a kissing day

I sat here at The Ryan House all day with Ronan, rubbing his little leg that is hurting him so badly. We had a lot of visitors in and out. Ronan slept most of the day while I had the chance to sit in our room and see a lot of friends and family. I was hardly awake when Niki came by. She sat by me on my bed and held me while I sobbed in her arms as I knew I would the minute I saw here. She brings out the raw emotion in me for some reason. I held on to her and stroked her insanely gorgeous red, wavy hair that I am so in love with. After I let go, she sat by me and rubbed my back and I think I fell asleep again. Her visit was so peaceful. I had lots of other visitors…. Melissa, Patty, Sarah, Auntie Karen, my Aunt Sheri, my sweet cousin, Shannon, my mom, Jim, Liz, Olivia, Luke, Heidi, Stacy, Fernanda, Tricia, Tiffany, Dr. Maze, Katie, Addison, Lane, and I think a few more of the cousins. It was busy here but Ronan didn’t seem to mind.

I spent a lot of the day, curled up with Ronan, thinking, thinking, thinking. It’s not a fun place to be right now. Woody and I met with a doctor today about getting Ronan in over at St. Joe’s tomorrow to do radiation on his legs. It will be a one time treatment, and we are hoping it will subside his pain. The pain medication he is on is just not cutting it. Woody and I both decided he can handle it as we know how strong he is on the inside. It will be fast and painless and we are praying it will give him a little relief. The pain is swallowing him whole as he cannot even move out of bed and even me carrying him to the bathroom is torture to my little guy. I cannot just stand back and do nothing if there is a chance this may help him.

Woody has also been in contact with Dr. Sholler from Vermont. She has a trial that has opened up and I am not going to say much as of now; but if we can get Ronan comfortable enough with his pain, we are talking about making the trip out to San Diego to start this 5 day treatment. We have sat all day and weighed our options. I get that my first priority is keeping Ronan comfortable, peaceful, and happy. But as of now, he is none of those things. I am not foolish and I am not unrealistic. My child is dying right before my very eyes. I do believe in the power of miracles, but our miracle is not going to come in the form of him, lying in this bed, while I sit back and do nothing. I know that God is not going to open up the heavens above and heal my baby. This cancer is going to eat his little body alive and as of now, I am just sitting back and watching that happen. That to me, is not acceptable. I am loving him with everything I have; but if someone out there is willing to take a chance on Ronan, I believe I have to take it. His miracle is going to come in the form of medicine combined with the power of prayers. But prayers alone are not going to save Ronan.

Woody and I have not made any decisions as of yet. Obviously we have to weigh the pros and cons very carefully. But as I said in the beginning, I am not going down without a fight and neither is Ronan. It is just not in our nature. By sitting here and doing nothing, I feel like we are not fighting if there is even the smallest chance that this treatment could help Ronan in any way possible. If this doctor ends up telling us no, than we will accept the time left we have with Ronan. If I know in my heart that Ronan is ready to give up, then I will not push him. I know he is not there yet… I know the soul and spirit of my child and he is not ready to go down so easily. How can I possibly give up on that if there is the slightest ray of hope? It is eating me alive just sitting here, and doing nothing. Loving him is not enough if I can still be fighting for him and his life. I cannot let him go yet. I still feel in my heart that it is not his time.

So, the word inhumane has come up a couple times tonight. I’ve decided it’s a word that should not be associated with parents who are fighting for the life of their child with all they have. I believe to do otherwise is inhumane. We only want what is best for our son and we are struggling to figure it out. We as parents do know that we have to know in our hearts that we have done everything possible for Ronan. Even if the outcome turns out the same. So, as parents we will take the next few days, to watch Ronan carefully and make the decision that we feel is best for our family. If we do decide that enough is enough, it will be because Ronan has led us to that decision. This is still his journey, his life, and we will respect that. But it will not be without exhausting every possibility. We do not want to put him though anymore, but how do you give up when there still may be a chance???? I don’t think that you do. I know my child better than anyone, and today when I tried to kiss him and he yelled at me that “It’s not kissing day!” I knew right then and there that his little feisty spirit still exists. It’s my job as a mom and as the adult to help Ronan fight for I know what is in his soul. He does not want to leave us; he does not want to be anywhere else. We deserve our son, Liam and Quinn deserve their brother, and I am not throwing in the towel. I know this disease well enough now to know that things can change in an instant. I just pray that they change in an instant for the better and not for the worse for us.

We will start off tomorrow of a CT scan of Ronan’s little body, that is so badly beaten up and bruised. We will then do his RT without his anesthesia. I talked to him about it tonight and he said he will do it and make Dr. Maze proud and not need any sleepy medicine. The only thing I worry about is keeping him comfortable enough. I know he can do it, he will push through the pain if he has to. This is something no child should ever have to go through and I am beyond sick about it. Looking at Ronan’s banged up body makes me shutter. Listening to the sounds of his screams from the pain is something I will never be able to get out of my head. I swear to god on my life I will fucking live long enough to see a cure for this awful disease. I swear to god I will do whatever I can to help find a cure so no child has to suffer the way I have had to watch my son suffer. No child deserves this pain and no parent deserves this heartbreak.

That’s all for tonight my peeps. Sweet dreams to you all. G’nite my Fernanda. I miss you so much already.

xoxo

Burn baby, burn

Home. That’s where we are heading. No more hospitals, no more clinics, no more. As I sit here holding Ro on our flight home, all I can think about is, “Will this be his last airplane ride?” It can’t be possible. He was supposed to be coming with us, to Ireland soon. He was supposed to be going to Washington with us this summer. He was supposed to go on my most favorite family vacation to the San Juan Islands on the big boat that Papa Jim will drive. We were waiting until he was 4 to take him on this trip. This is the sickest, cruelest joke in the world. When did life become so hard? That’s the scariest thing; because everything changed overnight. I had no idea how precious life really was until all of this. I’ll say this over and over; I will always wish this was me and not him. I’ve done enough in my life to be fulfilled. He will never get the chance.

So after all of this, I’m sorry to say that if my baby boy goes, there is not a God. God would not do this to a child, a family, to a mother. God can fuck off. I’ve put all my faith out there I only to have it ripped away from me. If “God” takes away my child, I’m going to go burn down a mother fucking church. I’m going to go crazy and I have every right to. The pain that is in my heart will NEVER be healed. For those of you who want to judge me, think less of me for writing these words, or to wonder how I could say such things…. You are not allowed. You have not walked in my shoes, even if you think you have in some sort if way; you have not because you were never a mom to Ronan.

I am about to go home, to the only place Ronan wants to be. I am about to have the toughest conversation in my life with my twin boys. Ronan is their best friend and I am about to tell them the thing that they have feared the most. I’ve stopped eating as I have no appetite. It’s been 4 days now and the thought of food makes me sick to my stomach. I ate some cheese and crackers today only to get Woody off my back. Fuck all if this.

You don’t need to worry about my sanity, as it is gone. But as a mom I know it us my job to put on a very good show as to not traumatize my twins. I would never let them see this insane pain I am feeling. I love them too much. I know I will get through this, but now, sitting on this plane ride I am beyond angry. My emotions change from circumstance to circumstance. The moment I step off this flight, I will put back on my positivity shoes that seem to come off every now and again.

I want Ronan back. I want his hair, I want his healthy body, I want his laugh and bright eyes. I want his naughty trouble making soul that always reminded me of me. He is my little clone on the inside. The two of us never skipped a beat. You know who this is going to be the hardest on? My Quinn. Ronan and Quinn are closer that Quinn is to his twin brother, Liam. How us that even possible? Twins are supposed to have this crazy connection, which my two do; but it is nothing like the connection Ro and Quinn have.

There will come a time after all of this that I am going to go crazy, mark my words. It may take me jumping out if a fucking airplane, visiting some crazy country, running another marathon, but something is going to have to give. I’m not living a life full of limitations anymore and I’m not saying no to things that come my way. I’ve just walked through hell and back and I’m done with all the superficial bullshit that life has to offer. I will spend the rest of my life, helping others, not because it is good for my ego; but because I’m going to make a difference in this world and change the way people’s warped minds think. I will put every ounce into making sure my twins turn out to be just like their Dad; as there us not a better man in the world. I will make sure they know the meaning if living a life by their rules, as long as they don’t hurt others. I will guide them, love them, and we will never forget out Ronan who has forever changed our lives. They will be raised to have an impact in this world in honor of their brother. The most amazing little soul who has ever existed on this planet.

They will be taught to never judge people, as judgment is my least favorite quality in a person. Nobody has the right. They will grow up open-minded, respectful, fearless, honest, and I will support them, guide them, and love them with every bone in my body. I know that I am going to have to work extra hard to fulfill the love that they have missing from Ro. I am more than prepared to take on that task as these 8 months away from them have been horrific. This has been so unfair to them.

We made it home safe and sound. My little busy bees had everything perfect. I told Fernanda and Bethany I needed all new bedding for Ronan in my bed. All white, all calm, all peaceful, all new. He has been so sick in my bed for all this time; he deserves to now be surrounded by nothing but the softest sheets, pillows, blankets, white everything like a fluffy cloud. I asked for Fernanda to make me dinner so I wouldn’t have to worry about it. Done. I begged NY Miss Macy to get on a flight asap to spend the weekend with us. Done. Time is not on our side and nobody knows how much time we have left with Ronan. Anything I have asked of my friends, has been done and more and I will never be able to thank them enough. I hope they know how the only reason I am still standing is because of them. I would be so lost without them. Thank you my angels. You all know who you are.

We were met at the airport by somebody from Hospice whom I chose to ignore. So rude of me I know, but I am so numb and so in denial that I couldn’t do anything else. She came over to our house and I let Woody deal with her. I unpacked some of our things and just pretended like she wasn’t here. Woody asked if I wanted them here for the weekend. I told him no way and to make them leave a.s.a.p. My manners were nowhere in sight today and for that I apologize as I know at some point we are going to need them. But not yesterday, not this weekend. All I want is one normal weekend where I can pretend like this isn’t real. Which is why we didn’t have any talk with Liam and Quinn yet. Just one weekend is all I’m asking for where we can pretend like we are a normal, happy, family. Liam and Quinn deserve as much normal time at home with Ronan without having to know too much.

Auntie Karen and Liz came over to unpack for me. Heidi and Luke came by so Ronan could play with him as he has been begging to see Luke for days now. I sat and watched as the sweetest little 10-year-old boy cry over his worry for Ronan. I just told him I loved him and all that mattered was that Ronan was so happy to be home and so happy to be with Luke and his brothers. My dear, sweet friend, Aubrey (Dr. Maze) came by to give us his support. It was hard for me to look at him tonight as I had so much to say but nothing was appropriate with all the kiddos around. He sat and watched me buzz around, taking care of Ro, getting food for the kiddos, he watched the complete chaos of my life which I so love. I was so happy to have him here. He is a part of our family now. He loves Ro so much. After he left, I put Ronan in my bed and took the hottest bath alive.

Ronan and I fell asleep shortly after my bath. All cuddled up in our cloud of a bed. Thank you again girls. It was the most peaceful night of sleep that I have had in a very long time. We are up early… 5 a.m. Not sure why but Ronan was demanding that we get up. Whatever that boy wants, that boy gets. He’s watching “Mickey Mouse,” while I finish this post. We are going to the twins’ baseball game today and Woody is helping coach. Tricia and Macy are picking up Ronan and myself as I’m not sure if I can drive. Today we are going to be as normal as we can and normal now consists of giving Ronan morphine around the clock to keep him out of pain. My mom gets in today. Don’t know how I’m going to look her in the eyes. I’m so mad at everything and everyone about this. I’m not ready to let him go so soon. I pray that he stays with us as long as possible. I want to see my baby turn 4 on May 12. I want him here for Woody’s birthday on May 24th, for Tricia’s on May 25th, for Mother’s Day, whenever that is. I don’t want to spend this Mother’s Day without him. Please. Somebody listen. I have been on my knees, begging so much that they are bloody.

Hellllllooooo Philly!

I’m not scared yet. Is that weird? Because at this point I should be scared shitless. And I don’t need to point out the obvious for you all to know what it is I should be scared about. Maybe it’s because I’m too numb, still in too much shock, or in deep denial. But I honestly don’t think those are the reasons for my being fearless. I still have this insane feeling in my heart that Ro is going to be fine. Maybe every parent whose child is diagnosed with cancer feels this way. It’s survival mode perhaps? Whatever it is, I’m not going to question it and I am going to embrace it as much as I can. I’ve questioned so many things today. Why Ronan was chosen for this journey in the first place, but most of all why he has to fight so hard through it. He is fighting like I’ve never seen a person fight before in my life. I know this is a big part of why I can’t give up yet. As long as Ro is fighting, I will not stop fighting for him. How could I? Any parent put in this same situation would do the same thing 100% guaranteed. To give up now would be so cowardly. I have never been a coward in my life and I am not about to start.

Today was one of the most beautiful days I’ve ever had in my life. Fernanda picked Ronan and I up to go to the clinic at PCH. I cannot tell you how good it felt to be back there. Dr. Maze came to see us while we were waiting and I got to watch my friend and see the pain in his eyes. He puts on a very bad poker face even though he tried his best to give me his famous smile and everything is going to be o.k. look. He left after a few minutes and looked at me and told me he was sorry. I just sat and gave him a smile as that is all I could do. After he left, I sat and thought for a few minutes. I have no shame when it comes to telling him the things that come rambling out of my head so I sent him a short text that just said something like, “Please don’t tell me you’re sorry. I cannot have you give up on Ronan too.” He then replied that he would NEVER give up on Ronan and that is not what he meant. He just meant he was sorry that Ronan is in pain as it breaks his heart. I felt better after that as that man has been with us through this from day one. I know he will not give up on Ronan because he gets it. He knows Ro is different no matter how hard this is getting and he knows my child has the spirit of something that is unlike anything on this earth. Dr. Maze is not going anywhere and more mother fucking doctors should strive to be more like that man. Enough with the egos and the ” I am GOD” attitudes. Enough of this cowardly bullshit. Not naming any names, of course. That would be much too easy. Dr. Maze also knows Dr. Mosse and took the time to send her an email in regards to us. He thinks the world of her which is so very comforting to me. He is very good judge of character and the fact that he respects this woman so much, means everything to me.

We were soon called back to the clinic room where we sat for a while and Dr. Eshun, Ronan’s primary doctor at PCH, came in to see us. Another prime example of an amazing doctor who is full of compassion and heart. We sat and talked and the things we talked about were not easy; but not once did he break eye contact with me. That is HUGE in my book. It is a sign of respect and just pure hearted goodness. I asked him hard questions and he answered as honestly as he could. He gave me his warmest smile even though I knew he was sad. That mans smile could melt a room. I thanked him for being so kind to us and told him how much it meant to me that he had the courage to talk with me the way he did. He supports our decision and understands where as parents, we are coming from. I’ll bet he is the most amazing father. I can tell that about him. He takes all of this personally and has tried to guide us as best he could. We will always be thankful for that.

While Dr. Eshun was in the room, our social worker Marcia came to see us as well. She has been so supportive of us from day one as well. I’ve always known she was a special lady but today, she kind of blew me away. She was so hopeful and so supportive of what we are about to take on. She told me what a good mom I am and how proud she is of me. It felt really good to hear from her as I respect her so much. Her eyes were filled with so much light and love today and I know she believes. She believes in miracles and she believes in Ronan. She believes in our love as a family and believes he can do this. She is still standing by our side and is not going anywhere either. I am so thankful for this.

The next person I saw was, “A.” This was probably the hardest person that I had to face. I’m not sure why…. actually I am. It is because I am completely in love with that woman and I wanted nothing more but to come back to her with the most amazing news…. I did not want to come back to her this way. She sat with me, hugged me and held my hand for a long time. We talked about really tough things. Things that I think about on a daily basis, but I cannot go there yet. A is logical, realistic, and matter of fact. But this is why I love her so much. I know she is only telling me the things she is telling me because she wants to make sure I am as informed as possible and that I have thought about everything, every possibility, every outcome. She does this for me because of the love she has for our family. All that bullshit about doctors not getting personally involved with their patients is bullshit with A. She is fully invested and proved that by the way she ran out to our car today to chase us down to give us one last hug and kiss goodbye. Nobody at fucking Sloan would have done that for us. I think I may have set the bar a little too high with them. Don’t get me wrong, I still think they are one of the best hospitals in the nation. But they will never compare to my little PCH and the kind of quality care we get there. Today, I felt like I was floating on a fluffy cloud with all of my favorite people waiting for me with open arms. As shitty as the circumstances are that we were back, it filled me with the love that I have so been missing.

Dr. Maze also came back to see us again and say goodbye. We will see him soon and Ronan asked after he left if he could come with us. I told him I didn’t think so, but this time we won’t be gone so long so we will be back to see him soon. He smiled and told me that made him happy. Little love bug.

While I was waiting in the isolation room with Ronan as he ended up needing platelets and blood, I saw the woman who walks on water to me. Dr. Adams. I hesitated to chase her down but Fernanda was like, “Are you crazy?! You know that woman always makes you feel better!” Did I forget to mention that “Nanda,” as Ro calls her sat with me all day long? My darling, F. I don’t know what I would do without her. Actually, I do. I would not be getting though any of this and would be curled up in the fetal position somewhere. Anyway, as I was getting ready to chase down Dr. Adams I looked at Fernanda and said, “I can’t see her, my entire ass is hanging out of my pants!” I’ll have to back up the story on this one. I forgot to mention that I was wearing this pair of pretty thin seersucker pants today and when we first went to the clinic and I was getting Ronan out of the car, I dropped my cell phone and bent down to pick it up. I heard a big, “Riiiiiiipppppp.” WTF?!? I turned around to Fernanda and said, “Did my pants really just rip and is my ass cheek fully exposed?” Indeed they had. The only thing I could do was laugh and roll with it. I spent the entire day pulling down my tank top to cover up my bum as to not expose anyone to the beauty of my milkshake maker. You know, my favorite booty song…. “My milkshake brings all the boys to the yard.” Yup. I fully brought my milkshake to the clinic today and I don’t think Woody would have appreciated it if any boys came to my yard. Fernanda, of course had the problem solved as she had another pair of jeans with her. I threw those on and went down to see Dr. Adams. I peeked around the corner and there she was. I waited for her to see me before I approached her. She had no clue we were back and it took her a minute to register it was me. She looked at me for a few seconds and goes, “What are you doing here. I did not want to see you back.” I calmly explained the situation to her and she teared up and pulled me into a room. She hugged me, held my hand and locked eyes with me while we discussed everything. And I mean everything. She kept telling me that what matters now is the care that I am giving to Ronan, which is 100% my complete love and strength, but I also needed to let him know that we are all allowed to be sad because none of this is fair or right. She was 100% supportive of trying this MIBG therapy. We touched a bit about how his cure rate is now becoming slimmer and slimmer. I told her I knew all of this but I didn’t care if there was a 5% chance that he could beat this. I wasn’t giving up yet. She told me she knows what good parents we are and we know what is best for Ronan at this point. I don’t think I’ve said this before but just being in her presence almost scares me; but in a good way. I swear to god I’ve known her in a past life or something and I also swear to god that she is seriously an angel walking around on this earth. She has such a presence about her and is one of the most beautiful women I’ve ever come into contact with. When I am with her, it is as if she gives me the strength that seems to be surrounding her at all times. She has a very strong aura about her. I feed off of this and I actually felt really calm around her today. I always feel calm and at peace when in her presence.

We had our sweet Patty taking care of us all day. She is not even a nurse to me anymore; she is my friend. She sat with me, cried with me, laughed with me, and helped me with Ronan as much as he would allow. She helped me out to my car and carried all of our things. It was so nice to be back home today and I was so glad Patty was the one taking care of us.

Um, yes, hello. I could write a freaking novel tonight while on this red-eye. I should be sleeping but I have too much buzzing around in my head and to much to talk about today. I’m getting so sleepy but I want to touch on this woman Joanna who emailed me today and her email said please call me, I promise I’m not crazy. What the heck, I thought so I picked up the phone and called this lady who lives in Toronto, Canada of all places. Instant connection. She told me the most amazing story about something she had just experienced and swears it is a sign that Ronan is going to be o.k. I believe her. I cannot go into details because at this time, I am seriously about ready to pass out. This stranger picked me up off my feet today when I needed it most. We talked about fate, the timing of all of this MIBG therapy as if we would have started this any later…. Ronan would not be eligible for the antibodies that come after this due to a time period. She said maybe Dr. Kusher kicking us to the curb was a blessing in disguise because now we will start this therapy and if we get the response we are fucking praying our asses off for, Ro will still be eligible for the antibodies. We will cross that bridge when we come to it, but you all know I love a good fate story. Fate and hope are what I’m hanging on too.Thanks Joanna, for reaching out to me. It meant the world to me today.

Also, I am learning such lessons from a little 10-year-old. Not really lessons, but more like what it means to see this through the eyes of a very wise child. Mr. Luke Ashworth, my heart will forever be yours. Ronan’s cousin has been such a blessing to us. He loves my Ro so much and Ro loves him just as much. Luke gets all of this, as he is wise beyond his years. He looked at me tonight and goes, “Promise me you’ll never give up.” I looked at him and said, “Luke, of course I will never give up. I promise you that. I will never give up on Ronan.” We had our moment and I will never forget it as long as I live. He thinks about Ronan so much and is so worried about him. It takes a very special boy to be so concerned about something like this. I am so proud to have him as a part of our family.

This is all I can do tonight. Long enough for you all? Geez! Blabber mouth city could not shut up tonight. Adrenaline I guess. I’m in mama lioness fighting mode. One more thing I want to mention…. Thought-out all of this I find strength in so many places, but one person in particular is always on my mind. It is someone I never knew, but he is one of my idols; Pat Tillman. I have called Ronan our mini Pat Tillman since he could walk. I often think about Pat and how strong-willed he was and just what an amazing man and role model he is to our family. We all worship him. I think about his strength and bravery and I channel this by thinking about him when I think I can no longer go on. He helps me put back on my fuck you cancer boots and continue to fight. I know if he were here and in a twist of fate, he were to meet Ronan, he would never give up on him. I feel like he is one of our angels watching down on Ronan wherever he is. Ronan reminds me so much of him… just the little I know of him from reading some books that have been written about him. One in particular by his mom. The things he did as a child are so similar to the spirit the Ronan embodies. So, Mr. Pat Tillman…. thank you for being the definition of what it means to be a real man and to fight for what you belive in no matter how many people tell you differently. You will always be a hero and a god in our eyes.

G’night my lovies!!!!!!! Or G’morning I should say!

So proud to have you all by our side and I will never get tired of saying that. You mean so much to us. CHOP here we come. Dr. Mosse, I have faith in you; I’ve known this all along. NOT GIVING UP. Who could give up on a fact like Ro’s?? Only the UGLIEST of souls. And we don’t allow ugly souls on this blog.

We are here. We made it. I have not slept in 24 hours which is probably why my post was a little “hyper.” Adrenaline. In a turn of events, Ronan’s pain in his legs that he has been having, which has been horrific, is not bothering him at the moment. As soon as we stepped off the plane, he started smiling and told me he loved me so much. He has not complained once since we arrived to our room. I have a good feeling about this Philly place. I sent Dr. Mosse an email at 6:30 this morning telling her we had arrived, we were at her mercy, and would do whatever it takes to get Ronan started on this treatment as soon as possible. Not 10 minutes later she emailed me back saying no child should be in pain and that they will move his treatment from next week up to this Thursday. Now that is an amazing doctor. Talk about class, compassion, and heart. I knew this about her from the first time I met her. This is our time now. Things are falling into place and I am going to keep holding on to my belief of that. As Tricia dropped us off at the airport tonight and hugged me tightly she whispered, “Bring our baby home.” You bet your ass I will, TT. I promise you that.

Time to try to get some shut eye; although it looks like Ronan has other plans as he has set up a whole battlefield of Star Wars guys in our bed. Love my little fighter so much.

I hope you all have a beautiful day.

xoxo

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