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.

Beautiful weekend, beautiful friends

What a great, long weekend. We spent it pretty low key. We really just hung out at home, watching movies, playing outside, and getting ready for the upcoming week. On Saturday, Charisma, and her family, who had been in Tucson for Thanksgiving, drove up for the day to see us. We spent the day watching the boys play, Charisma and I went and got pedicures while the Woody held down the fort, and then we went to Chelsea’s Kitchen for dinner with some of the girls. I can’t tell you how nice it was to spend some time with my friend. I miss her so much and will never let so much time pass again before seeing her again. The boys really get along with her son. He is such a sweet soul like his mama. Ronan was very playful with her and had no problem warming up. I was surprised considering the way he usually is around people. I am happy CC got to see how “healthy” he looks. He was running around, happy as a clam the entire day and night. It was a great day and night. I was sad to see her go… wish I could keep her with me here forever;) Ronan’s favorite soon to be doctor, Katie, also came by the house for a visit. At the beginning of all of this, when everyone was poking and prodding at Ronan, because they didn’t know what was wrong yet…. Dr. Katie is the only one Ronan would let come near him. She sat in on the surgery when they removed the tumor out of the left orbit of his eye. She is family to us now and it was so good to see her. Ronan is still talking about it this morning. He keeps telling me he loves Dr. Katie and wants to know why he can’t see her at the hospital. So cute and sweet. Thanks Katie for the visit. It meant so much to us to be able to see you. Your being there for us during the hardest time in our life is something we will always be grateful for. You were the only one who put my mind at ease.

Tomorrow, we go into the clinic and we will have Ronan’s platelets checked. We need them to be above 75,000 in order to start his chemo week. Praying that they are. I’m stressing that this is now going to throw off our whole New York plan. We will know more tomorrow depending on if we get to start this round or not. It’s not good to let more than 6 weeks pass in between chemo treatments. I just cannot imagine that he will not be good to go….. he looks and is acting like he is feeling great. He’s been so loving to me lately. I know a lot of it has to do with being home and with Liam, Quinn, and Woody. Today, I sat on the couch with Quinn and Ronan and watched all of the new version of “Alice in Wonderland.” Quinn and Ronan loved it. I couldn’t believe Ro sat through the entire movie. About every 20 minutes he would wrap his arms around me, smile up at me and give me the biggest kiss. It was so sweet. Liam and Woody spent the day watching football and playing some G.I. Joe PS3 game.

Everyone is tired tonight and we all need a good nights sleep to get ready for the week ahead. Last night, I made the mistake of coming home from my evening out and I didn’t take my medication that helps me sleep. I was trying to prove to myself that I was so tired, that I didn’t need it. Big mistake. It was the worst night of sleep. I tossed and turned all night long and had the most horrific dreams. I won’t be making that mistake again. It’s not worth it at this point in my life.

Good morning! I fell asleep soon after writing that last night. Ronan was way too cuddly for me to stay awake. A good night sleep makes such a difference. Boys are off to school and Ro playing Star Wars in his room. I’m ready to check in to the hospital. Fingers crossed. I’ve had our bags packed and in the car for a week now. I have Ronan all prepped and he knows that we have to go in today. He seems fine with it. I’ve come to learn that if I prepare him for things, he adjusts better to the situation. I hope you all have a beautiful Monday. I will keep you posted on if we are admitted today or not. Love to you all!!

xoxo

Sometimes I’ve believed as many as six impossible things before breakfast

I feel a little like Alice in Wonderland. A little lost, scared, curious, brave, hopeful, determined, a champion, a dreamer and strong. A little like the Mad Hatter too. Crazy, funny, smart, and zany. And the White Queen, confident, gracious, and sassy. I relate to so many of these characters in this movie. I feel like I am Alice, living a crazy dream, and I just can’t wake up. I haven’t cried in a few days, which is rare. I hope all of these drugs are not numbing me too much. I want to feel things… but I also don’t want to feel too much or else I won’t be able to function. These past few days I have been looking at Ronan and just feeling happy and extremely lucky to be able to spend so much time with him. His spirits have been great. He is so feisty and has been cracking me up. Last night, Liam and Quinn were in the shower and Ronan kept running in there and throwing things on them. I was trying to get him to stop but he of course was not listening. I did my pretend Woody call, which is sometimes what I do when Woody is not here, and sometimes it works and Ronan stops the naughty things he is doing. Last night when all that was happening, I yelled out, “Woooooody!” Ronan looked me dead in the eye and goes, “Woody’s not here.” I died laughing. Liam and Quinn were hysterical with laughter. It was so funny and smart of him. He has so much mischief and fire inside of him. It keeps me on my toes and I love every second of it. He is so strong and brave. He is my hero.

So, since we won’t be in the hospital for Thanksgiving, we will be spending it with our dear friends, The Kotaliks and Mimi and Papa. It is going to be the best Thanksgiving ever. We have so many things to be thankful for this year. Just to be able to be together as a family is a huge blessing. We will hopefully start his chemo on Monday. Woody is devastated that we have had a little set back but Ronan’s body needs to fully recover from the last round to start this next round. I have faith that everything happens for a reason and it will all work out. It just has to; we have come too far with all of this.

My mom and Jim will be coming out on the 1st of December for a visit. My mom is so nervous because of the way I flipped out on her the last time she was here. I keep reassuring her that I will be fine this time…. I’m on medication for crying out loud and I know that is helping. We are surprising the boys’ and not telling them that Papa Jim is coming too. They will be so thrilled. It will be nice to have both my mom and Jim here. I have a very special bond with my step-dad… I love him to pieces and feel so lucky that my mom married him when I was 13. He is the greatest man.

That’s all for tonight. Looking forward to a very peaceful weekend with some very special friends coming into town for a visit on Saturday. I am so excited about that. It has been much too long since I have seen this dear friend of mine. Planning on a fun Saturday night and taking her and a few other girls to Chelsea’s Kitchen for dinner. It is going to be a very special evening to say the least.

Happy Thanksgiving to you all tomorrow if I don’t get to check in. I am thankful, always, everyday for all of the blessings in my life. Love to you all, my friends.

xoxo

Have you ever looked fear in the face and said I just don’t care?

Ro is still in the hospital due to a low ANC count. His numbers jumped up today, which tells us he is on the up and up, but they still need to get up higher before we can come home. He is in a lot of pain due to developing Mucositis which is a side effect of the chemotherapy. It is kind of like ulcers in the mouth. Although we cannot see it inside his mouth, I can tell they are more along the lines of down his throat. He has not been wanting to eat anything so he is getting nutrition from his broviac line. We won’t be able to go home until he starts eating and everything is healing. It will take his ANC levels to come up to heal the sores. It has been a rough couple of days at the hospital and I needed a break. I called in Auntie Karen tonight so I could sneak out and Woody and Quinn came and relieved her after the ASU game. They are sleeping there tonight. I came home and caught up on laundry and straightening up the house. It feels good to have all of that done. I will have to be back at the hospital early so Woody can run home and meet with a client. It’s one big shuffle, but I am grateful for the break and quiet tonight. Hopefully, Ronan will be feeling better tomorrow and we can bring him home in the next few days. Thanks for keeping him in your thoughts and prayers. It’s hard to see your baby in pain when there is nothing you can do about it.

So, my last little post caused quite a stir in regards to a comment. I don’t want to touch too much on that but I just do want to say that all opinions are welcome here, good and bad. Everyone is entitled to their opinions but nobody is entitled to judge me. Yes, I may get on here and rant and rave about things that I am upset about and how I am feeling, but the reason I do this is because when I am living my new life, I am strong and brave and most of the time nobody even knows when I am breaking down. I only choose to let a few close friends see this side of me. Somedays I have really hard days and yes, Ronan and my twins see me cry, but I am not the kind of mom who is going to hide my feelings from my kids. I grew up in a family that feelings were not really talked about and everything was always “fine.” I hope my boys will grow up knowing that we are a family who shares all of our fears, feelings, and opinions. I don’t want them to ever think it’s not o.k. to express how we are feeling. As far as my “personal relationships” suffering… I really disagree with this. If anything they have gotten stronger. I am working on making them stronger. The people that have bailed out on me and our situation, were never real friends anyway. I have been nothing but honest in the way I am feeling and if they can’t handle it, then they are not meant to be in my life. The people who have had their feelings hurt, know that they can talk to me and we can work it out because they are the people who truly love me. To walk away from me and all of this…. well, I think that speaks for itself.

On a happier note…. I have made some new beautiful friends on this journey. We are in a club all our own and I feel so LUCKY to be part of this club. The fucking cancer sucks club has some of the most beautiful souls I’ve ever met in my life. These people know who they are, and they are family now. I am very thankful to have their shoulders to lean on. And I know they know I am there for them too. To my Laurie tonight. I love you. I love your tears, your honesty, your smile, your Jack, and the friendship that we will have for the rest of our lives. You are the light of my life and one of the brightest stars in the sky<3<3

Pink: If God is a D.J.

I’ve been the girl with her skirt pulled high
Been the outcast never running with mascara eyes
Now I see the world as a candy store
With a cigarette smile, saying things you can’t ignore
Like mummy I love you
Daddy I hate you
Brother I need you
Lover hey, “Fuck you”
I can see everything here with my third eye
Like the blue in the sky

If God is a DJ
Life is a dance floor
Love is the rhythm
You are the music
If God is a DJ
Life is a dance floor
You get what you’re given
It’s all how you use it…

I’ve been the girl with her middle finger in the air
Unaffected by rumors, the truth: i don’t care
So open your mouth and stick out your tongue
You might as well let go you can’t take back what you’ve done
So find a new lifestyle
A reason to smile
Look for Nirvana
Under the strobe lights
Sequins and sex dreams
You whisper to me
There’s no reason to cry…

You take what you get and you get what you give
I say don’t run from yourself, man, that’s no way to live
I’ve got a record in my bag you should give it a spin
Lift your hands in the air so that life can begin

If God is a DJ…If God… say If God is a DJ, Then life is a dance floor so
Get your ass on the dance floor now