Late night rants and I can’t put Poppy down.

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Ronan. Fucking, fuck, fuck, fuck. I’m venting on here tonight and I don’t even care. I have been spending all of my nights, writing about this nightmare for this book and going back to re read my blog, which I’ve NEVER done, to reference some things.

This is beyond torture. I knew this was going to be hard, but SHITBALLS! This is beyond sick. I would give anything to be tucking you into bed instead.

So, the little time at night that I sleep, I have been having horrific nightmares. Last night, Poppy had cancer and went from being my healthy, chubby baby girl, to wilting away in my arms as I watched her die. Are you FUCKING KIDDING ME?! Can’t I catch a break around here?! I mean, I wake up to a nightmare everyday, which is not having you here, and I can’t even go to sleep without being tortured as well. Where are my puppies, unicorns and rainbows when I need them? Oh, I remember. I stopped subscribing to those a long time ago. Lucky me. Whatever. It is impossible for me to have gone through something like this and just stick my head in the sand and pretend like nothing happened. I’m so sick of hearing from the idiots of the world that now that I have Poppy, I should just move on and leave all of this behind. Well, nobody has ever told this to my face, but as always, I hear the whispers and they are whispers of BULLSHIT from sad souls who are obviously so self absorbed that they think that going through something like this, then having a baby makes everything disappear. That is so very untrue and so very ignorant.

Leave all of this behind?! Are you kidding me? Never. I will never sell my soul to the devil that way. I will never sell out and “move on” from Ronan. Yesterday, I woke up to 7 kids dying of cancer. 7!!!!  And that is only in the United States! Where are the riots on the street for that?!? Unbelievable.

I am not going anywhere, ever. I will stay here and continue to fight for you, Ronan and for all of these other kids until the day I die. I am not going “back” to my life of happy. I am a tortured soul and I can live with that. If anybody that is close to me has a problem with that, then please feel free to exit. The whispers are getting beyond fucking annoying.

Ronan. I started that rant a while ago. I think I was in the middle of being consumed by my writing at night and obviously I needed a break. My break came at the perfect timing as my childhood best friend, invited us down to stay with her over the weekend in Hood River, Oregon. It’s taken me a while to be able to say yes to something like this. I know Amy has been wanting to see me for a while now, but it’s honestly taken me this long to get back to that place where I feel I can see people again. Coming to your Nana and Papa’s is wonderful in so many ways, but I do tend to turn into a little of a hermit here. Meaning I don’t go out and do a lot of things. I prefer to stay home and only venture out for little adventures, here and there. Thankfully, they have enough acres and space to make us feel like we are in a different world, off doing a million adventures, without having to leave or drive anywhere to do so. When Amy asked to see us, I hesitated a little bit but ended up telling her we would come to her. We needed a change of scenery and I very much needed a break from my writing. Plus, I really have missed my dear friend.

We headed out on Friday for a weekend full of all thing amazing and beautiful that the Pacific Northwest has to offer this time of year. Mountain biking up some wicked trails, running through sprinklers, blueberry picking, ice cream, watching the boys play and splash on the beach, an amazing hike, all in a 48 hour period. Your brothers had such fun with her boys that they didn’t want to leave. I handled the weekend pretty well and tried not to let the wind get knocked out of me every time Amy’s very spicy 3-year-old, did something naughty. Oh, how he reminded me of you. He even has that same color of copper hair. Seeing your brothers with him and watching them giggle whenever he did something he was not supposed to do, broke my heart over and over again. But I survived the weekend much like the way I survive this life, by being surrounded by really amazing people and letting myself get lost in the smiles from your brothers and cuddles from your sister.

At one point Amy said to me, “You know you can put Poppy down, right?” Apparently I had been walking around pretty much the entire weekend, without setting her down except for when I had to change her diaper, but I hadn’t noticed this. I just looked at Amy and said, “Put her down? I never put her down. I can’t.” Errrrrr… I might be turning into an obsessive psycho maniac over your sister, but we all know there is a good reason behind this. Besides the fact that she is just too adorable to ever stop staring at.

Our weekend was wonderful and I’m back to the grind of trying to juggle 50 things at once. Yesterday, I felt so beat down that I almost cracked. It’s times like these that your Nana can sense it all and looks at me and says, “Give me Poppy and go for a run to blow off some steam.” That’s precisely what I did. It’s going to be hard to leave this place to go back to the realities of Arizona. It is still really hard for me to be there, but I will stick it out until something comes along to take us elsewhere. A change is in the air I think but I’m just not sure what that looks like as of now.

I have some other not so fun things to vent about, but I’m not going to do that now as I have to get back to the hours I need to put in with your book. All will come in due time. I also have some really amazing things to share as well as the sad/beautiful seem to live hand in hand.

I miss you so much, Ronan. I miss you. I love you. I hope you are safe. Sweet dreams, baby doll.

xoxo

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Snow Falling in Flagstaff

Ronan. Guilt is what I feel at this time, in this moment. For living this life, without you here. For the smiles that I’ve smiled, for the laugher I’ve done, for the love I’ve given to your brothers. Guilt for going on when you know, all I want to do is be with you. I wonder if the reason you insisted on being with me, almost every second of every day of the almost 4 years that I had you, is because you knew you wouldn’t be able to stay with me forever. I wonder if you miss me as much as I miss you. I wonder if you are as sad as I am because we are apart. I think that you are and it kills me that there is nothing that I can do about it. I can’t wipe your tears, hold you close and tell you that everything is going to be alright. I can’t promise you that I’ll never let anything happen to you, because it did. The worst possible thing that could have happened, did. And I will never stop being sorry for that. It is so unfair that the four of us are left here and you are gone. I constantly feel like I have forgotten you somewhere. I am constantly looking over my shoulder for you to come running around the corner. I don’t think I’ll ever stop looking for you.

I have been struggling with my sleep so much. The devil, Ambien has been in and out of my life since you were diagnosed. I try not to take it, but I’ve had a solid 3 weeks where I have taken it almost every night. Dr. Jo told me to try Valerian Root last week. She told me she takes 2 of those and she is out cold. So, I took 4 a few nights ago and nothing. I ended up taking my Ambien instead. I haven’t taken my Ambien for 3 nights in a row now. It has been horrific. The first night I fell asleep in our bed, with your daddy. I was in and out of sleep the entire night. I felt like my body was on fire. I had the most awful nightmares. I was watching myself scream your name, knowing that you were dead, but nobody could hear me or help me. Sounds like my real life. When I take Ambien, it puts me into such a heavy sleep, that I don’t dream at all. When I don’t take it, I toss and turn all night long, only to dream the most awful things. So what’s worse? I don’t know as they both seem bad. I know that I don’t want to rely on something to sleep so I am going to try to continue to tough this out. And if I need a break every once in a while, for now, it is o.k. Dr. Jo is trying to get me to meditate before bed or to try some yoga. It’s worth a shot, right??

We spent the weekend up in Flagstaff. It was another 3 day weekend and staying home just didn’t seem like an option. We tend to go stir crazy without you around. It’s like everyone is trying to overcompensate for the fact that you are not here. We headed up on Saturday and spent a couple of days enjoying the cooler weather and lazy days. Your daddy was actually able to relax. I tried too but it was hard to be up there for the first time, without you. I had a moment where I was walking into the living room and Liam was sitting down at the table on the floor. The top of his head, looked so much like the color of your hair, that I thought it was you. It was like I had the wind knocked out of me when I realized it was not. Your brothers were so kind to each other this weekend. They are such good boys. They didn’t fight at all, which seems so rare these days. I watched them as they played together, took care of each other, and helped out with a lot of the things we asked of them. We all snuggled on the couch and watched some movies, your daddy took them on an Arctic Cat ride, I took a long nap with Quinn, which I never do anymore. I snuggled up to him and let him remind me of you and the way we loved to take our naps together. Your brothers were extra sweet to me this weekend. I think they could tell I was sad about having to be without you, doing our normal family things that we loved to do. It snowed up in Flagstaff last night. I watched the snowflakes fall with tears in my eyes. You would have gone crazy over it and made me take you out in the middle of the night to play in it. I would have without hesitation.

It’s going to take a lot to heal us all. We all have some good ideas, of some things that can help. We are all being very open about our sadness and we talk about you all the time. But we are a different family now as we are all different people. Even your brothers. I keep wanting to write your little brothers. As if I feel that you were older then they are. I guess due to everything you went through and how strong you were about it all. I guess due to the fact that I now feel like you are older than them and you are the one watching out for them and protecting them. And the wisdom that you always had as you were so much wiser than your almost 4 years old of age. I always knew this about you. You truly were a gift to us all.

I have a busy week as I am leaving for New York soon. My solo trip that is much needed. I need some time to go back to our favorite city where I can just be for a little while. Some plans are falling into place which I am loving. I planned this trip without having anything to do but some very nice things are coming about. I am excited for the little adventure we are going to have together as I know you will be with me, the entire time.

Alright little man. I love you so much. I hope you are safe. I miss you so very much.

xoxo

New obsession. Inferno Hikes. My physical Hell.

Ronan. The Sunday Blues. I hate Sundays. Always have. I woke up in an awful mood due to the dreams I had all night long. They were long, intense, and I was mad at everyone in them. I fought with your daddy in my dreams. Quinn and all of your cousins were smoking cigarettes in front of me. I was crying, screaming, and yelling. Everyone in my dream, knew you were dead and it was all they talked about. Is it too much to ask for a little peace in my life? Apparently, yes. To say I woke up on the wrong side of the bed, is an understatement. I woke up, vividly recalling what I had just dreamt about; and then I remembered that I was really waking up to you not being here. I walked around in a zombie state of mind for most of the day.

Hi baby. I started that yesterday, but didn’t finish due to trying to go to sleep. I passed out around 10, but tossed and turned all night long. My dreaming is out of control. I could be sick just thinking about it. I saw you in my dreams last night. Yes, indeed I did. I wish I could tell you it was amazing, but it was awful. I had a dream that I was holding you. You were still alive, but you were being cremated in my arms. Your skin was burning off and it was so hot, that I could feel it. I was supposed to just wait it out and watch you burn. I woke up, barely being able to breathe. I got up, walked around the house, went into your brothers’ room, and tried to go back to sleep in there. I did, but didn’t. I slept for a couple of hours and got up early to start my day. I was so tired of trying to sleep so I just aborted mission. I got up, showered, made your brothers breakfast, got them ready, got myself ready, made myself a list for the day of things to do and headed out to take your brothers to school.

I filled my day with errands. I went over to Gay’s house to give her a hug. I have not seen her since your services. I miss her and her little guys so much. So do Liam and Quinn. We are planning a play date with them tomorrow. It will be so bittersweet without you. After I left Gay’s, I finished up the things on my list. I came home, threw on my workout clothes, and decided to do hike at 1:00 in the afternoon. The temperature on my car read 114. Screw it. I’ve hiked the mountain everyday for a week now. Tricia hiked with me Saturday and Sunday. We are OBSESSED. Inferno hiking is our new Hot Yoga. As I was getting ready to head up the mountain, I decided I’d better tell someone where I was. I texted Trish and told her if she didn’t hear from me, it was because I had died; hiking. I made sure she knew where I was in case I didn’t make it back down. I had a moment of hesitation before I started. An empty mountain, the thought of rattlesnakes, the heat, and god knows what else; was enough for me to think twice about braving it today. But then I thought of you and everything you went through in your little life. All the pain and suffering. My fear subsided and I ran, as fast as I could for 35 minutes, up, up and up. I got to the top, started to dry heave, and threw up the only thing I had in my stomach the entire day which was coffee and water. No biggie. I took about 20 minutes to feel the sun burn my skin and I did my talking to you. I can’t remember if I cried or not as I was in a daze. I headed back down and just as I was thinking in my head, that I must be really be crazy; because nobody else in their right mind would do what I had just done….. a man appeared. I thought I was hallucinating at first. I took out my headphones and watched the man who must have been about 75, with his walking stick, approach me. He was carrying a spray bottle mister full of water in his hands. I smiled and told him I couldn’t believe that he was hiking today as I thought I was the only crazy person on the mountain. He told me to take off my sunglasses so he could spray me down. I laughed and thanked him and he told me it would keep me cool for about 10 seconds. I told him that was better than nothing. I think that 75-year-old man, hiking today, was clearly an Angel. It was a little sign from you to let me know that no matter how alone I think I am, without you… that you will never be far from my side. I really needed that today, Ro. Thank you.

I picked up your brothers from school, came home and we did their homework. The rest of the night has been pretty low key. Everyone is tired from the heat of today. Tomorrow, I have a busy day full of therapy appointments. I’m seeing Sarah and Dr. Joanne. I am going to try to go to boot camp at 5….. so please let me get some sleep. I need the rest, emotionally, physically and mentally. I miss you so much. We all do. We spent last night all crying about you. Quinn was hysterical, sobbing so hard that he couldn’t even talk. Liam was crying in your bedroom with your door closed, playing with your Star Wars guys. I cried most of the night as your Daddy tried to take care of all of us; but he was just as sad. I just don’t know what to do with days like yesterday. I almost can’t handle them. We survived somehow. Quinn is watching your favorite movie, “Home Alone,” now. I really can’t handle that. The little boy in the movie is you to a tee as far as the way he acts. You used to quote this movie every other day as you loved it so much.  I so badly wish we would have went on a vacation, and left you at home alone. At least this movie has a happy ending. I don’t see how our life can possibly have a happy ending without you here.

I’m going to go now baby. I’m so tired I can hardly see straight. I love you to the moon and back and hope you are safe. I miss you so much. Sweet dreams, my “not spicy, little monkey.

xoxo

I would like to dream about these sparkly shoes tonight. Something crazy, gorgeous, and girly.

Twinkle Twinkle little star

I had the worst dream last night. It was all about scan day. We woke up and got ready to go. Fernanda was downstairs waiting for us, with coffees in hand and off we went. We arrived promptly, like always, and soon Ronan was called back to anesthesia; I held him tightly as they injected him with his Propofol, and kissed him as he went to sleep. I left him on the table and covered him up with his blanket, Gigi. Out in the waiting room I went and fell into Fernanda’s arms. Leaving Ro for anesthesia is never easy on me, especially without Dr. Maze there to be the one to take care of my little guy. Fernanda and I gathered up our things and pushed Ronan’s stroller up to floor 9 to let the waiting begin. And wait we did. For fucking ever. I think we sat for a good 2 hours. Fernanda tried her best to distract me with her her stories; but there was nothing that could take my mind off of the things to come. Soon, I saw Dr. Kusher, the man I had been waiting for. He was back doing Ronan’s bone marrow aspirations. He breezed right past me without making eye contact. This was my first clue. My stomach dropped to the floor. Fernanda goes, “There he is, let’s chase him down to see what the results said!” I just looked at her and told her no. He knew we were waiting and would get to us when he was ready. By this time, Ronan was waking up from the anesthesia. We went back to get him and my little groggy guy just wanted to be in my arms. I put on his pants and shoes and picked him up. We went back to the waiting room to wait once again, for Dr. Kushner. We sat and waited and fed Ronan some food as he was hungry. As I was getting up to do something, my Claude necklace, the one that I always have around my neck for important days; that has the tooth of St. Claude in it, fell to the ground. It had somehow come detached from the chain and I scrambled to pick it up. I picked it up and tried to figure out where it had come detached. So weird, I thought to myself, as the clasp was not broken. I did my best to ignore the St. Claude incident and told myself it was not a sign. I didn’t even tell Fernanda this which is not like me at all. I tell her everything. Soon, the kid at the front desk told us Dr. Kushner was ready for us. We were taken back to room 7 to meet with him. As soon as I saw him my stomach dropped to the floor. He couldn’t even look me in the eyes. I looked at him and said, “No no no no no no no.” His eyes were wet and he said in his weakest voice something like, “The cancer is spreading. The chemo did not work.” I clutched Ronan, sat down in a chair because I was going to pass out. I don’t remember much more. At some point, he recommended we call Woody on speaker phone. I sat there and listened as Dr. Kushner tried to explain things to Woody. I watched him as his eyes kept getting wet. At one point I asked him if he could please give me just an ounce of hope. Just one ounce… something. He looked at the floor. I went into shock and asked him if this ever gets any easier for him. I told him it couldn’t possibly ever get easier. He got up and turned his back to me. Where did the man go that said he would fight for my baby with everything he had? Because that man in front of me was nowhere to be found. I saw a coward. A man who had completely given up on my child. I somehow gathered my strength and got up. I gave him a hug and told him thank you. I told him he was a good man. I walked out of the doors to his office with Ronan running beside me. Dr. Kushner, the man I had put all of my faith into, had given up on my child and there was no looking back.

Fernanda and I walked back to the RMH. I remember nothing about getting back to our room. All I knew is I wanted to get home, back to Phoenix, asap. I curled up on my bed while Ronan ran around like mad and Fernanda buzzed in the background making travel arrangements and figuring out what to do next. I remember something being said about needing to get me Valium. I remember sitting on the floor playing with Ronan and drinking a coconut water. I remember taking the coconut water and throwing it as hard as I could across the room while I watched it hit the wall and liquid splashed everywhere. I told Ronan we were having a party and I wanted to see if my water would explode. He then took a can of root beer and poured it everywhere to make it explode like a volcano. I think Fernanda got in on the fun and dumped her Diet Coke all over the floor on a blanket on purpose. We sat and had a fucking pop throwing party because what else could we do? It made perfect sense at the time. She then spent the next 7 hours packing up our room, running all over the city to buy more suitcases for all of our shit, did laundry, cleaned our place, got me my Valium, composed an email to Dr. Mosse at CHOP regarding starting Ronan on MIBG therapy and we finally got Ronan into bed so he would settle down to sleep. Fernanda watched as I rubbed his back and he asked me to sing him “Twinkle Twinkle Little Star.” I sang to him our song as I do every night. We all fell asleep around 2 a.m. Our alarm woke us up at 3:30 a.m. as our car was picking us up at 4 a.m. to get us to the airport. 9 suitcases checked later and we were at our gate. The flight was blurry and Ronan slept much of the way. I did too due to the Valium and Ambien. I asked Fernanda for more Valium and she told me no. I cried on our flight and watched her cry by herself in the aisle across from me. She looked like an angel. I woke up at one point and looked down at Ronan and I saw his pinky intertwined with mine. That’s how I know this is all a nightmare and none of this is true. Because his little pinky of his refuses to let go of mine, even when we are both in a deep, deep sleep. As we were getting off of our flight I hugged Fernanda tight and told her that she was the best friend I have ever had and how nobody else would have done this for me. She told me there were a million people who would have done this for me and I then told her yes, but not the way that she did. She came in, in the middle of the biggest storm of my life and attacked it head on and beat the fuck out of it. I have no idea how in the world she did this and I kept offering to have Woody fly out to help us. She looked at me like I was crazy and yelled at me “For what?!?! We can do this! I’ve got it under control!” I’ve learned not to argue with a Mexican Goddess. You will never win.

I somehow made it home, back to the cleanest house possible and to my twins and in-laws. Before I knew it I was in my bed and passed out. I woke up to my husband and 3 boys playing away. The days are blurred and I’m not really sure what is going on. I went out this morning to meet up with my Mr. Sparkly Eyes. I told him how disappointed I was in Dr. Kushner and how I am learning to lower my expectations of people because I set the bar so high. He agreed with me and also tried help me understand that he is sure Dr. Kushner feels like he failed us and is heartbroken. I told him I understood that, but all I wanted was for him to have a bit of decency and compassion which I felt he completely lacked. I just want somebody to be mad at and I know that is not fair, but I have a right to be mad at the way things were handled. Dr. Kushner had his freaking assistant call Woody today to tell him he thinks we should go to CHOP for MIBG. He didn’t even call Woody himself. That is not only rude, but classless. And this is a man that I completely respected, but I have come to find out that when push comes to shove and times turn to the darkest hour, the people who you think will be there until the end for you, can turn on you in a heartbeat. I told Mr. Sparkly Eyes that we refuse to give up and as long as Ronan is still fighting, we will fight as well. He more than agreed and promised to never give up on Ronan, told me that he, himself, is not going anywhere and all I have to do is say the word and he will be at our home to sit with me or whatever I need. I told him how I didn’t know how I was going to write this post, as I have been trying for days but lacked the words. He told me to just be honest, like I always have been. So here I sit, writing the most honest words that I have ever had to write in my life.

I had my house full of my dear friends and family today helping to get everything unpacked. Stacy, Karen, Liz, Fernanda, Heidi, and Mrs. Martin all buzzed around doing everything they could. I don’t think I’ve done much of anything except Heidi got me out for a pedi/mani and I got to see Marisa who met me at my nail salon to hold me.

What’s next? First, I have to wake up from this nightmare because I refuse to believe it is real. Ronan is running around like mad, playing with his brothers and having lightsaber wars with his favorite cousin, Luke. Once I wake up, we plan on getting on a plane this Tuesday to take Ronan to Chop to start him on MIBG therapy. This is a fairly short therapy, but intense. We will get Ronan through this. As my friend, Ed said to me, “It takes one child to change the odds.” That is the best thing I’ve had said to me all week. Until we leave on Tuesday, I’m going to do my best to get thought these next days. I’m going to hug all of my boys extra tight and surround myself with all the love I can get. As much as I want crawl up in my bed and not come out, I have 3 boys, and a husband whom I love more than the stars combined to try to remain strong for. I still have hope, faith, and a belief that Ronan will be the miracle to come out of this.

I love you all. Thank you for your continued love, support and prayers. This is not even close to being over and we will never give up on our Ro.

xoxo

P.S. If any of you ever see that angel of mine, Fernanda Borletti on the streets, at the grocery store, at school, wherever….. please wrap your arms around her and whisper to her that she is an angel on this earth. She deserves a god damn Noble Peace Prize.

Never-ending tears

How much can one little person endure? It’s amazing because the strength of Ronan seems endless. All he has gone through so far… all he is going to have to go through still. I am exhausted just thinking about it. He is back getting his bone marrow aspirates done and MIBG scan as well. I didn’t tell him until we arrived here what was going on. He cried and said he did not want his sleepy medicine unless Dr. Maze gave it to him. I knew he was going to be upset about that. He was more than upset. He  threw himself on the floor while the tears poured down his cheeks. I told him we could call Dr. Maze and he could talk to him if that would make him feel better. He finally calmed down after that and we made the phone call. Nevermind the fact that it was 6:30 in the morning back at home. I put Ronan on the phone and watched his little face as Aubrey talked to him. It lit up and he kept saying o.k. and nodding his head. He then told him, “I love you,” and handed the phone over to me. I have no idea what was said to Ronan, but it worked for the time being and calmed him down. We were soon called back to the procedure room and I was able to hold Ronan as the doctor put him to sleep. I left the room freaking crying. Time to get used to all new doctors, people, nurses, etc….. We are so attached to our angels at PCH. I already miss Sharon, Kristen, Dr. Maze, Erica, Dr. Adams, Dr. Eshun, Elaine, Patty, and “A,” so much. They have been our family for 7 months now and here we are starting all over. I didn’t think it was going to hit me so hard, but today it did. Especially leaving Ronan in the anesthesia room with some new doctor whom I’m sure I’ll never see again. Don’t get me wrong, Sloan is beyond amazing. But this is going to take some getting used to.

Lovely. Lovely that I am a blubbering mess today. Lovely that as soon as I was called back to see one of Ronan’s main doctors, Dr. Modak, to sign papers for blood work that I immediately starting bawling. Lovely him took my hand and said “Tell me what’s wrong.” I couldn’t even get the words out because everything is wrong. I just told him I was worried about this arm pain of Ronan’s. He pulled up the latest  MIBG scan for me immediately and we looked at it together. I’m sorry, but nobody at PCH would have done that for me. As much as I love them, the fact that Dr. Modak was able to pull up the scan in 2 minutes and discuss it with me was something that would have never happened so quickly at PCH. And it should be that way. It should be that way everywhere. I should not have to wait days for results. We went over the new scan and he showed me that nothing has progressed. If anything, it looks slightly better. I was able to stop crying for the rest of the time while I was in his office. At least I can have that peace of mind for the moment. I was sent down to the blood donor room to have my veins looked. I made it halfway there before I started bawling again. The nurses kept offering me orange juice to calm me down. Made me laugh to say the least.

My friend, Ed, is in the city today and should be here any minute. There is no way I am going to be able to hold it together for him. He lost his little boy Jack to Neuroblastoma a few years ago. He and his wife have been so supportive of all of this even though we hardly know them. They are 110% behind our Sloan decision which makes me feel very good and just confirms that we did indeed make the right decision. I only was able to see Ed for a few minutes due to Ronan waking up from anesthesia as soon as he arrived. He woke up grumpy like always and wanted to just go back to the hotel. I grabbed the Starbucks Ed brought me and he helped me with the stroller downstairs until I was able to calm Ronan down enough to put him in it. What a sweetheart. We were planning on going to lunch but Ro baby was not having it. Ed grabbed a cab and we headed back to our room. I tried to get Ronan to rest a little bit but he was hell bent on going to FAO Schwartz. I bundled him up, threw him in the jogging stroller and ran up to FAO. We stayed for about an hour. He was tired and is in a lot of pain from his bone marrow aspirates that he had done today. He keeps asking why they put needles in his body. UGH. He is hurting tonight which kills me. I hate seeing him in pain and I know it’s bad because he never complains. After FAO, we ran back to our “hood” and went and grabbed our favorite pizza. He ate a lot as always and now we are back in our room. It is freezing out there and I am so exhausted today I swear I could fall asleep right now. It will be an early night for sure.

Woody is flying out tonight to NYC because Dr. Modak needs his blood by tomorrow. Nobody in Phoenix can send his blood that quickly so he is just flying in. Ronan has a CT scan at 11:30 tomorrow and we will fly home with Woody tomorrow evening. I hate to admit this; because I like to act like I’m such a tough ass and have everything under control; but……. these 3 days without Woody have been SO hard. I sometimes take for granted how helpful he is to me but I swear, never again. I could NEVER survive this without him. I miss him terribly and I am so insanely blessed to have him as a husband. He truly is the best thing to ever happen to me.

That’s all for tonight. An early update because I hear a hot shower and a very early bedtime calling my name. So thankful that todays MIBG scan showed no progressive disease. Maybe I will sleep a bit better tonight. I am anxious to get home, I feel like I’ve been gone a year.

xoxo, sweet friends.

P.S. Biggest HAPPY BIRTHDAY loves to my New York Miss Macy. This city is not even close to being the same without you:( Miss you so much. Kisses from NYC!

We’re not married…. we’re still dating;)

I wish I could tell you tonight that we have our answer. But I can’t. Woody and I both left the house on the same page this morning, thinking we knew which approach we were going to take. That all changed after meeting with Dr. Adams, the head of Stem Cell Transplant at PCH. I should have known the answer was not going to be so easy. Woody, Fernanda, and a I sat across from Dr. Adams and Woody did all of the talking. Fernanda sat and wrote notes and held my hand; I sat, listened, absorbed, and cried. At one point I looked up and told everyone I was just trying to do my best not to throw up everywhere. Dr. Adams looked at me and said she didn’t blame me, she was devistated that she had to be having this conversation with us. But, she said she still feels like Ronan can be cured…it’s just going to take a little more work than we would have liked. She said we have a ton of options available but unfortunately, nobody knows the right answer. The decision we are going to have to make is going to have to be based on all the data we collect and a gut feeling. Those were her words exactly. I told her I’d be gut feeling, and Woody could be the data:) Sounds like a perfect match to me. What Dr. Adams would like to see is us do 2 more rounds of a different type of  chemo here, than rescan Ronan and make a decision after that. She does not want us to jump head first into anything. Woody and I both agreed that this sounded like a good idea to us as long as it won’t close any doors as far as other options go. We are waiting to hear back from Dr. Kusher at Sloan to see if he is o.k. with this. We don’t see how this would hurt Ronan at all, if anything everyone seems to think we can get rid of some more of his disease this way.

There are not many people in the world that I would trust with the life of my baby, but Dr. Adams is one of them. I don’t have a super personal relationship with her for obvious reasons, but I don’t need one to know that she is a very special woman. She is brilliant beyond belief, compassionate, open minded, and has dedicated her entire life to this. She truly cares about each and everyone of her patients. She has this amazing aura around her and I feel it whenever I’m in her presence. After we left her office, Fernanda and I went out into the main waiting room to take care of some business. Fernanda looked at me and said, “I still have goosebumps after being in that room with that woman.” Fernanda felt it too. This woman is a gift to us and I want to keep her involved in Ronan’s care for as long as possible.  I fully trust her and respect her opinion so much. She wants to give Ronan the best shot possible is willing to do whatever she can. She was very hopeful because Ronan has responded so well and as I said before, she just thinks he needs a little something extra. Staying here and starting chemo would give us more time to figure out our exact plan. I hate just to jump right into anything if we can take baby steps instead to really make sure what we are doing is right. Fernanda had Dr. Eshun’s assistant get all of Ronan’s scans out to about 6 different doctors. We will take all of the opinions we can get right now. This is not the end of the road my friends, not even close. This is the beginning of a new path we are going to take to get Ronan well. I am embracing it with open arms and know it will be the right decision, when the decision is made. I trust in the higher power who is in charge of this…..whomever that may be as I believe there are many forces behind getting Ronan well.

Once again I am in awe of my husband. I sat today and watched him fire out questions to Dr. Adams that I think she was even surprised to hear him ask. He knew the names of all of the studies, the side effects, what things would open doors and what would shut doors. It is pretty amazing when you can watch someone like Dr. Adams be so impressed with a father and his wealth of knowledge. I wish I could have been of more help, but I cannot seem to detach myself from the emotional side of all of this. I don’t know what I would do without Woody. I said to Tricia yesterday, “Could you imagine if I were married to a moron and going through all of this?” There is no way I could get though it. I am so thankful I am married to such a brilliant man. I love you, Woo <3

We still know Ronan is going to beat this but as I said before, he is going to do it his way. We will get this figured out but it is going to take a little bit of time. Nothing is set in stone and I loved it today when Fernanda said in her beautiful accent, “Honey, I love that you’re not married to one idea, your still dating!” I’ll never forget how her words made me feel today. I’ll never forget her sitting in the clinic with me and seeing her tears over something I had shown her that I carry with me everywhere I go…. her Christmas card picture with all of her 5 beautiful children on it. I feel like it brings me luck and it will help to guide me. It’s the little things that mean so much to me now. Whether it be the Claude necklace I always carry with me, my four leaf clover necklace that I never take off, Pam’s bracelet that she gave me that I also never take off, or Fernanda’s Christmas card. All of those things bring me peace and although they seem little and insignificant, they all mean the world to me.

Today was a long day to say the least. I have taken my sleepy medicine so I can actually sleep tonight. If I miss a dose, sleep does not happen. I’m o.k. with this. It won’t be forever, and I know how important it is for me to get some real sleep. My dreams are still intense and sometimes they are good, and sometimes they are bad. Working on tricking my mind into making my dreams as peaceful as possible.

Goodnight my sleepy friends. Goodnight Moon. Goodnight my sweet baby Ro, Liam, Quinn and Woo. Goodnight my Fernanda… I will meet you in my dreams for cocktails, on a beach, far away from all of this. I love you.

The dawn is breaking
A light shining through
You’re barely waking
And I’m tangled up in you
Yeah

I’m open, you’re closed
Where I follow, you’ll go
I worry I won’t see your face
Light up again

Even the best fall down sometimes
Even the wrong words seem to rhyme
Out of the doubt that fills my mind
I somehow find
You and I collide

I’m quiet you know
You make a frist impression
I’ve found I’m scared to know I’m always on your mind

Even the best fall down sometimes
Even the stars refuse to shine
Out of the back you fall in time
I somehow find
You and I collide

Even the best fall down sometimes
Even the wrong words seem to ryhme
Out of the doubt that fills your mind
You finally find
You and I collide

You finally find
You and I collide
You finally find
You and I collide


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

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

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

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

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

xoxo

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

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

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

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

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

xoxo

Hospital Reality sucks

We moved out of the POU (Pedatric Oncology Unit) today and into a different area of the 9th floor. I wish we could have stayed in the POU, but moving to this room is a step up as far as getting us out of here. The POU only has 3 rooms and they are so private that you never see what is going on with the other patients there. The room we are in now, is just like the 2nd floor at PCH. Except worse in a way, because the kids seem so much sicker. I cannot even tell you what I have seen on this floor today, but it is something a mother should never have to see or experience. Let’s just say, it left me in tears most of the day. One room in particular is covered in signs about heaven and God and through the window I saw a mommy feeding her baby ice chips, scooping them into her mouth. The doors here are covered in posters that say things like, “Be strong, Be positive, Be brave.” I have had that empty pit in my stomach the entire day again and it is once again thoughts are filling my head like I can’t believe my baby is in the cancer club now. I have been so positive and upbeat lately… this has kind of thrown me for a loop. On top of it all, Woody left today and I guess I need him around more than my independent self thinks. I was so spoiled by having him here with me the entire time. He gives me so much strength and we are such a great team. We have a roommate too. I think the little girl is about 11 and has bone cancer. That’s what I’ve picked up on so far. There hasn’t been a lot of time for chit chat. Ronan spent the day walking around some more. Still trying to do everything himself. He is so sweet. Everything is always, “Please help me.” or “Please hold my hand.” or “Please get me a drink.” He says please before asking me to do anything in his squeaky little voice. He is hurting so badly but is too proud to tell me.

I met a new friend today named Ed. He is somebody that my friend, Niki, reached out to after hearing his story about his son, Jack, and his battle with Neuroblastoma. Jack fought long and hard, but passed away at age 5. It was hard meeting Ed today, the pain in his eyes was undeniable. From the second I saw him though, I felt as if I had known him forever. He sat with me for about 2 hours and we talked about everything. It was comforting to me and hard at the same time. He said it was therapeutic for him which I was surprised to hear him say, but it says a lot about the type of man he is. He left me with a big bear hug and I had tears in my eyes. Today was a very special day and I feel privileged to have learned about his journey. He has been through hell and back and is still standing; with a smile and a laugh that will melt your heart.

Tonight, is the first night that I am really homesick. I guess it’s true…. my home is wherever Woody is, because I know that is why I am feeling this way. Also, I really miss the twins. My heart ached when I talked to them on the phone tonight. I hate being away from them. We are almost done with New York though… I am going to make the most of these next couple of weeks. So glad Tricia gets here tomorrow. That is going to make me a lot less homesick.

Ronan is doing well and Dr. Angel (La Quaglia) came to visit. Ronan gave him a big smile the entire time he was here. It’s like the two of them share a secret now… they have a special bond. My friend Pam’s husband, Larry, told me that Dr. La Quaglia walks on water to them. I couldn’t agree more.

My Xanex, that I NEVER take, is starting to kick in. Thank god. I was feeling like I was going to jump out of my own skin all day today. I need a night of sleep without nightmares. My dreams are so vivid anymore. The night before Ronan’s surgery, I had a dream all about it. Everything turned out perfectly, Ronan was fine, and then Woody had to share the news with me that he had an inoperable brain tumor. WTF is that all about?? My baby was saved, but my husband was now dying. I remember everything about that dream so vividly, down to every single person that was in it. I woke up thinking it was real. I’ve never had dreams like this in my life. They are so real, it is scary. Sleep is hard now because I wake up so often, because of a nightmare or because of worrying. Hopefully there will come a time when it will once again be peaceful for me again. WIth that said, head hitting the pillow, asap. G’nite, sleep tight, love to you all.

xoxo

Baby’s incision 🙁

Hello Insomnia and Nightmares

 

 

Awake. Lovely. Fell asleep for about an hour. Woke up due to horrific nightmares. Not going back to sleep anytime soon. I talked via text messaging to Ashley’s mom today; the little girl who underwent surgery. It went very well and she is now recovering over in the ICU. Her mom told me to prepare myself. Fuck. How do you prepare for something like that. I sent Woody the text message she sent me about what to expect. His response? “Fuck.” Great. My rock who is usually my positive power, knows what we are about to go through is going to be hell. I am trying to mentally prepare myself…. but I don’t even know if this is possible. She did tell me that she is completely in love with Dr. La Quaglia though:) That makes me feel a little better. Cheers to Ashley and her successful surgery. So very happy for her and her family.

Today, we spent the day all together as a family. Liam and Quinn leave tomorrow and I am devastated. Ronan is going to be so sad; those boys are his life. We tried to soak up being together as much as possible and had a great day. Lots of laughing and throwing snowballs:) Tonight, Woody and Quinn ran out to get some dinner down the street a few blocks. Ronan was so upset after they left because he wanted to go with them. He screamed and cried the entire time they were gone which was about 20 minutes. I was dealing with him and I looked over to see the tears pouring out of Liam’s eyes. I immediately left Ronan to his temper tantrum to tend to Liam. I sat and held him and asked him what was wrong. He told me how much seeing Ronan scream and cry, bothers him. I wanted to die right then and there. Of course it all makes perfect sense. Liam has been spending a lot of time with Mimi and Papa on this trip because they are his safety, his security. With them, there is no chaos, no unexpected, no scariness. Liam lives for calmness, structure, and rules. With Ronan, you never know what you are going to get and every second is different from the next. Liam does not like this at all and seeing him tonight all I wanted to do was to take him home, and just be able to put him back in his secure environment where all this madness does not exist. I held him for a long time, let him cry, and just explained to him why Ronan was acting this way. Ronan got so mad that I was tending to Liam that he shut himself in the closet. I let him; Liam needed me. As soon as Woody and Quinn returned, we ate dinner and then he took the twins upstairs to watch football. I curled up with Ronan and fell asleep; for a little while anyway.

So, it is officially New Years Eve. I am so ready for 2010 to be over. Worst year of my life. 2011 is going to be much better; I have a great feeling about it.

My friend, Sandy, sent this to me today. It made me smile and I agree with almost everything on this list. Thanks, ho;)

Written by Regina Brett, 90 years old, of the Plain Dealer, Cleveland , Ohio :

To celebrate growing older, I once wrote the 45 lessons life taught me. It is the most requested column I’ve ever written.  My odometer rolled over to 90 in August, so here is the column once more:

1. Life isn’t fair, but it’s still good.

2. When in doubt, just take the next small step.

3. Life is too short to waste time hating anyone.

4. Your job won’t take care of you when you are sick. Your friends and parents will. Stay in touch.

5. Pay off your credit cards every month.

6. You don’t have to win every argument. Agree to disagree.

7. Cry with someone. It’s more healing than crying alone.

8. It’s OK to get angry with God. He can take it.

9. Save for retirement starting with your first paycheck.

10. When it comes to chocolate, resistance is futile.

11. Make peace with your past so it won’t screw up the present.

12. It’s OK to let your children see you cry.

13. Don’t compare your life to others. You have no idea what their journey is all about.

14. If a relationship has to be a secret, you shouldn’t be in it.

15. Everything can change in the blink of an eye. But don’t worry; God never blinks.

16. Take a deep breath. It calms the mind.

17. Get rid of anything that isn’t useful, beautiful or joyful.

18. Whatever doesn’t kill you really does make you stronger.

19. It’s never too late to have a happy childhood. But the second one is up to you and no one else.

20. When it comes to going after what you love in life, don’t take no for an answer.

21. Burn the candles, use the nice sheets, wear the fancy lingerie.  Don’t save it for a special occasion. Today is special.

22. Over prepare, then go with the flow.

23. Be eccentric now. Don’t wait for old age to wear purple.

24. The most important sex organ is the brain.

25. No one is in charge of your happiness but you.

26. Frame every so-called disaster with these words ‘In five years, will this matter?’

27. Always choose life.

28. Forgive everyone everything.

29. What other people think of you is none of your business.

30. Time heals almost everything. Give time time.

31. However good or bad a situation is, it will change.

32. Don’t take yourself so seriously. No one else does.

33. Believe in miracles.

34. God loves you because of who God is, not because of anything you did or didn’t do.

35. Don’t audit life. Show up and make the most of it now.

36. Growing old beats the alternative — dying young.

37. Your children get only one childhood.

38. All that truly matters in the end is that you loved.

39. Get outside every day. Miracles are waiting everywhere.

40. If we all threw our problems in a pile and saw everyone else’s, we’d grab ours back.

41. Envy is a waste of time. You already have all you need.

42. The best is yet to come…

43. No matter how you feel, get up, dress up and show up.

44. Yield.

45. Life isn’t tied with a bow, but it’s still a gift.”