Las Vegas, Chicago, and Palm Springs

Ronan. I’m still here despite my silence. It’s only been a few days since I’ve written, but it feels like a lifetime. A lot has happened, even though it really has not. Let me try to retrace my steps these past few days. Your Daddy ended up going to Vegas. It was a quick trip and I am glad he ended up going. He needed to. He deserved to. He needed to blow off some steam and spend some time with the boys doing boy things. Liam and Quinn left for Chicago with Mimi and Papa. They are still there. They went to the ASU game last night. It sounds like they have been having a great time.

While your Daddy and brothers were gone, I stayed home alone for the first time. I had people checking in on me, friends who were worried and said they didn’t like it….. that I should call my girlfriends to come and stay over. I didn’t listen. I wanted to see if I could do it. If I could handle being in our house, all by myself. It wasn’t enjoyable, but I made it though. The visions of blowing my brains out didn’t even crawl into my head like they usually do. I had a quiet night at home, crawled into bed, did a few things on the computer, and tossed and turned all night. I walked around the house a lot. Looked outside, expecting to find you. I didn’t. I made it though the Silent Night without you. FUCK. That song. I used to sing it to you ALL the time. I never sang it to Liam and Quinn. Always to you. It is what I would sing, hum, whisper to you when I was rocking you to sleep. I never knew what a silent night it would really end up being. That song creeps me out now. I hate it. Why that song? Is it because I knew that one day, I would be without you, alone in our house, and I would have to survive the fucking silent night? I had to survive the night without you. I had to do it alone. I hated every second of it.

Your Daddy came home from Vegas and as soon as he walked in the door, we hopped in the car and headed to Palm Springs. It was a last minute trip and we knew we should take advantage of your brothers being gone, so we decided to drive out to Palm Springs to see Laura and Kasey. It was either that or stay in Phoenix and get caught up in our everyday stuff. We both knew we needed to get out of town, to see some dear friends, to spend some time together, just the two of us. I have forgotten what it is like to be with your Daddy, just the two of us. To be honest, I was nervous about spending this time with him. You know how closed off I am to everyone and everything. Guess what I found on this trip though?? I found one of my best friends again. Your Daddy. I remembered. I remembered why I fell in love with him 13 years ago. I remembered why I married him. I remembered why I love the feeling of holding his hand. I remembered how I love to see him smile. I remembered how I used to love to smile for him. I remember how much I love how he towers over me and makes me feel so tiny, even though I am tall. I remembered all of that and it felt nice. It all felt really nice, but it made me miss you even more. This guilt/grief thing really messes with ones mind. Anytime I felt a tinge of happiness, I would feel a rush of guilt wash over me. As if I was betraying you. I tried to talk myself out of these feelings, but it was impossible. I’m just going to continue to do what I’ve been doing, which is to nurture the feelings I am having and not try to change them. I have to embrace them and right now, and guilt is a big part of what I feel. I feel guilty for many things, but most of all for being here and living this life without you. It seems so unfair. You were supposed to be here, living this life with us. You were supposed to live to be a hundred, not only almost 4. Just shows you how little control we have of this thing called life. Absolutely none. I said this to your Daddy tonight. I don’t know how our conversation started, but it ended up with me yelling something like, “So what! We did everything right in our lives. EVERYTHING! And look what happened to us!” Just goes to show you, there are no guarantees in life, no matter how hard you work, how much you love, how you think you make all the right choices….. It can all be taken away in an instant and then what? You are left blind-sighted, trapped in this life, wishing for death everyday. But good thing you worked so hard to make the perfect plan.

Palm Springs was a good break. It was pretty low key. We spent some time with Laura and Kasey. I got to see your little friend, Cameron. She misses you. It was harder than I thought it was going to be, being around her. I spent a lot of Friday night, at Laura and Kasey’s house, just crying. I sat with Cameron and painted her little 3 year old fingernails and toe nails. As I was in the middle of this, she looked up at me and goes, “Maya, why did Ronan die in the hospital?” Oh, baby. I didn’t even know how to answer her. I couldn’t think of anything remotely acceptable to respond as an answer to her. So I didn’t. I just choked back my tears instead. Laura soon put Cameron to bed. I went to snuggle with her and we talked and I rubbed her back. I sang her our “Twinkle, Twinkle, LIttle Star,” as I played with her little fingers that reminded me so much of yours. You both have the same big hands and long fingers. I cried as I snuggled with her. Sweet, sweet, girl. She talks about you a lot and thinks about you a lot. She misses you and told Laura she wishes you were back with us. That’s a big thing to come out of a 3 year olds mouth. She loves you. I remember how much you loved her too. I’ll never forget your Tu Tu party with her, your first summer at the beach together, how you discovered your love of pickles together. Laura and I would talk about how you would grow into adults and get married. It was the perfect plan until it wasn’t. Until is was no more. No more planning your days, months, years, or life.

How quickly everything changes. What an awful change.

It was good to spend some time with our friends. I tried my best to keep it together and to smile and laugh along with my tears. The endless tears that just flow whenever, wherever. I have no control. I don’t need to. You are worth every one of them. The endless tears that I know I will cry for the rest of my life, Ro. I miss you.

My melatonin is starting to kick in. I’m tired, baby. I hate that I have to go to sleep now, without kissing you goodnight. Do all of you mommies out there, who have your babies, know how lucky you are?? For the first time in my life, I know the feeling of being jealous. A feeling I have never experienced in my life, but now I do, after losing Ro. It is a very sad thing to feel. It stings and it’s ugly. But I feel it, and I’m not going to deny it. I hope one day I won’t, but as of now I do. I refuse to let it make me an ugly person. Jealousy can turn the most beautiful people, into the most ugly. I will deal with it, let it fuel my fire for this fucked up disease of Childhood Cancer, that everybody just wants to ignore. Here’s what I have to say to anyone who reads what I write, but chooses to look the other way. Childhood Cancer can happen to ANYONE. Infants, toddlers, children, teen-agers, adolescents…. ANYONE. If you read about Ronan, if you are now aware of his story and you choose to do nothing…. I feel sorry for you. Truly sorry. I pray that the day never comes, that somebody you know, whether it be your child, niece, nephew, grandchild, best friends child, etc…… GOD FORBID, ends up getting cancer. You will feel like such an Asshole, knowing that you knew about Ro, but continued to live your blissfully happy life. If you are reading this blog, it is for a REASON. Do something with that reason. Help be a change. Be aware. Be proactive. Stop sitting on your ass and living in a bubble. If there ever comes a day, that your bubble bursts and you had your wake up call but didn’t take it…… Well that just sucks. I don’t care if the only way you change your life, is by just being more thankful….. At least that is something and it has come from the beauty of my son. I refuse to let him die in vain. I WILL NOT LET HIM DIE IN VAIN. This is my promise to him and the world. A change is coming. A change for the better, because life without one is absolutely pathetic and disgusting.

That’s my political attempt for the night, with my eyes half closed and heart ALWAYS heavy. Miss you, my baby doll. So much more to say, but words are failing me. I love you to the moon and back. I hope you are safe. Night baby.

Not following the yellow brick road

HAPPY VALENTINE’S DAY! RO, MAMA, AND NANA WENT FOR PEDICURES!!!!

I wish I could tell you all that I have not updated my blog for a few days because I have been so busy soaking up all of my precious time with my amazing family. That we have had such a fun filled, fantastic weekend full of no worries whatsoever. But, that is not the case. The weekend started out that way. We left PCH on Friday happy as clams, ready for transplant and for a great weekend. We took Ronan on Saturday to the twins’ basketball game and had a wonderful time. Afterwords, I came home with Ro and my mom and we were playing outside in the backyard enjoying the sunshine and warmth of the day. 30 minutes later Woody arrived, came storming outside, demanding that he needed to have a serious conversation with me and needed to have it now. My stomach instantly dropped, my heart fell to the floor and I knew something was wrong. He said he had just gotten off a lengthy phone call with Dr. Eshun and they had done the randomization for one stem cell transplant or two. We were randomized for one. I knew this before Woody even told me. Woody had asked me 3 days prior to this if I thought we were getting one transplant or two. I looked him dead in the eye and said, “One.” He goes, “How do you know?” I told him I just had a feeling. This is not the news we were hoping for. My head started spinning and it was as if we were right back to where we started, at day one of Ronan’s diagnoses. Although Ronan has made great progress, Woody and I have done enough research to know that not enough of his disease is gone for us to go ahead with just one transplant. This cancer is too strong. I spent all of Saturday crying my eyes out, trying to wrap my head around all of this, and Woody went straight into Woody mode and armed himself with as much information as possible as far as other alternatives. He figured out who we needed to call today to get answers from. He has spoken with several doctors from New York, San Francisco, Chicago, and Atlanta. Time is not on our side and time is not our friend.

The one thing that every doctor that Woody has talked to, cannot figure out is why is Ronan’s Bone scan is negative, his Bone Marrow clean, his VMA (urine test) is negative, yet he has so many spots left on the MIBG scan. Dr. Kusher believes that the Neuroblastoma, is still in Ronan’s bone marrow, not his bones. We are at a crossroads with what to do and are looking at basically two different options. As of now, we are deciding between an MIBG therapy in San Francisco or heading to Sloan Kettering to start 3F8. As soon as we heard that  Ronan had only been randomized for one stem cell transplant, we pulled him off the COG study we have had him on. There is no point in following their rules anymore. Although Ronan’s path is not clear, I have no doubt that we will find our way through this maze. I keep telling myself that Ronan is so unique and such a special little boy, that he was not meant to follow the yellow brick road on this journey. He was meant to make his own road full of yellow, purple, red, green and every other color you can possibly think of. Maybe this is a blessing in disguise because Ronan was not meant to have a transplant at all as it wasn’t the right answer. I have felt uneasy about his whole transplant thing from the beginning. I know what my heart and gut are telling me what the right answer is… but I think it is going to be a day or two until the answer is 100% clear. Woody and I are doing everything possible, with the help of my dear Fernanda who has been a godsend, to find out what all of our options are. We are still meeting with our transplant doctor tomorrow, Dr. Adams, but we will not be starting transplant on Thursday like we had originally planned. Just goes to show you how tricky this disease is and you really can’t ever prepare for anything. Talk about having the rug pulled out from underneath you. I told you Ronan was a rule breaker…. I really believe he was not meant to follow this protocol…. he is going to make his own.

I was a mess this weekend but tried to go on with some normal things we had planned. On Saturday night, Woody and I went over to Tricia and Max’s house with our friends, Danielle and Jay. We had fun, but I told Trish the next day, you know your in a bad place when not even Danielle’s toxic margaritas can mask your pain. We came home from Tricia’s around 1 a.m. and I tossed and turned the entire night. On Sunday, I had a dinner planned with some of my girlfriends and I refused to cancel. I joined Jen, Stacy, Jocelyn, Fernanda, Gay, Heidi, Bethany, Shelby, and Melissa, for a very special dinner that was supposed to be my “sending off” into isolation, but turned out to be, o.k…..here is the new news and what we are facing…now what the fuck are we supposed to do??  I tried my best to enjoy myself and when you are surround by the most beautiful women in the world, it is impossible to not enjoy yourself. I had to let go just a little bit and I have to trust in this new plan that is going to present itself. I texted my Mr. Sparkly eyes today and told him that decisions are begin made for us and we just have to trust. He believes this too, there is something bigger than us guiding us in the direction we need to go. I truly believe this with all of my heart.

What I am asking from all of you is just your continued prayers and love and your belief that we will make the right decision for our baby boy. Whatever path we choose, or whatever path chooses us, there is no looking back. We refuse to second guess anything we have done or are going to do. To live like that is foolish and we are very aware of that.

Hopefully by tomorrow, we will have a clearer vision of what we are doing as we need to get Ronan started on his next treatment as soon as possible. As far as Ronan goes, he could not be happier. He has been loving being at home with his brothers and playing outside. He looks amazing and his spirits could not be better. I am reminded everyday by looking at him what a gift he is as well as Liam, Quinn, and Woody. I am such a blessed mama and wife.

Please, no tears for us yet. Trust me, I’ve done enough crying the past few days for each and every one of you. This is a blessing in disguise. It HAS to be.