Never looking back


Hi my friends. I’ve missed you. It’s been a whirlwind of a week to say the least. We did our duty as parents to get all the opinions possible as far as Ronan goes. We have met with the best doctors, visited the best hospitals, talked to everyone we could get our hands on, strategized, analyzed, over analyzed, asked hundreds of questions only to come up with the one answer that I knew was there all along. I said this in my blog in December. I’ve known it in my heart for months now. New York is going to be the place to heal my baby. New York is where we were meant to be. I was very impressed with Dr. Mosse at Chop. That woman is amazing and I believe in what she is doing. She basically recommend MIBG therapy for Ronan to get us back on track for his Stem Cell Transplant, Radiation, and Antibodies. It is a good plan and the data is there to back it up; but the one thing we couldn’t get past was what if the MIBG therapy to get Ronan to minimal disease didn’t work. Then what? We are not going to send him into Transplant and we would have ended up at Sloan anyway, but with fewer options. Chop follows the standard COG protocol for treatment and through all of this, I have learned that Ronan is so unique, that he is not meant to follow the “standard route” of treatment. Dr. Kushner can offer us everything Chop has offered us and more. More options, more choices, more freedom. This man is not looking at my child as data. This man is looking at my child as an individual and will do whatever it takes to cure him of this awful disease. Ronan is not a number and Dr. Kushner truly will do whatever it takes to save his life. His hands are not tied by anyone. He can do whatever he wants and will. I’ll admit, this makes me a little nervous as I feel like he’s a bit of a wildcard. But that is a good thing. This disease is so aggressive that we have to give it all we can. I’ve nicknamed Dr. Kushner  my maverick Cowboy. Not to mention he defines brilliance. He is so unbelievably smart and is so dedicated to what he is doing. He believes he has revolutionized the treatment for this disease in a less toxic way. I am all about that. The less toxicities Ronan has to suffer, the better. The bottom line is, Woody and I both trust this man completely. He is the BEST. He is our best shot at getting rid of Neuroblastoma for the rest of Ronan’s life. He has no hidden agenda, he’s not worried about bringing in money, this is not a business to him. It is his passion, his life, and he is going to save our son. We are going this route and never looking back. New York is our future, New York is going to bring our baby back to us. There is no other option. So, the plan is in place and this gives me much peace of mind. Ronan has a long way to go as far as treatment goes but we will make this work. I will go in to detail later about what exactly we are doing but now, I am much too tired. We got home last night at 11:00 and I have been up since 7 this morning and am emotionally beat.

I texted my Mr. Sparkly Eyes tonight and told him that I will never understand why bad things happen to good people and that nothing in my life makes sense anymore. He called me back but I didn’t get to talk to him due to walking into a movie with my girlfriends. He is the best at calming me down with his words of wisdom. He brings me back to my center which I so need in my life right now. Today was a shitty day. Beyond awful but out of respect for others, I’m not going to go into details. I will just say that nothing in life makes sense and it is fucking beyond cruel. If one more bad thing happens this year, I may seriously strangle someone. Is it too much to ask for someone to throw a little happiness my way?? I cannot take having my heart broken all over again. It’s going to be hard enough having to uproot my life when someone whom I love so very much, needs me more than ever. And guess what? I can’t be here because some asshole named cancer has taken over my life, the life of my son and everyone around me. Good things better start happening and happening fast. Life should not be this hard, this painful, this sad. Tonight, my heart is broken and it’s nothing I can fix. My heart breaks for the most beautiful soul on this planet and all I want to do is take her away from all of this bullshit called life. Is anything in this life even true anymore? Because it all seems like a sick joke to me. I’m watching things happening left and right to people I know and they are not good things. We are all good people and it just does not make any sense. I guess the saying “You can’t make sense out of nonsense,” is really true. Well, I’ve had it with this nonsense and I am ready for a break from Phoenix. It’s time to get the show on the road and get Ronan better. Phoenix is not going to be the place to make this happen. We are ready for our new journey in New York to start and are welcoming it with open arms. So Ro baby, hold on tight…. you are about to turn that city upside down!

Ronan has felt great, looks amazing and is ready to take this on. Nothing can stop this kid. He was such a little trooper our entire trip and made every single nurse, doctor, and random stranger who worked in the cheese steak shop in Philly, (HI HELEN!) fall in love with him. I can’t tell you how many times people told me how he was the most beautiful child they had ever seen. He has such a light about him that attracts everyone because they can just tell by looking at him that he is going to do something very special with his life. He already is. I thank god everyday that he is mine. The look of determination in his eyes never goes away. He knows what he is up against and he is not scared. He is so brave, beautiful, and inspiring. Some days, I just sit back and watch how happy he is. He has no idea how awful his cancer is, he is just another happy kid who gets to take a lot of trips and have a lot of fun adventures. Everyday in Ronan’s life is an adventure and he is living everyday to the fullest while teaching us the true meaning of the things we surround ourselves with and how we choose to live our lives. We as a family feel so lucky to learn these things from him. Our little mini master yoga🙂

We have a busy weekend full of the twins’ sports which I am so excited for. We get to go and watch them play baseball and basketball tomorrow. Cannot wait for that. Ronan and I have to fly out to NYC next week for a couple of days to get the ball rolling on some things so I’ve got to get working on that as well. It’s non-stop and most days, I feel like I don’t even have time to breathe. I keep telling myself this is not the time to breathe, this is the time to run this bitch of a marathon and not stop until we are on the other side. I can do this thanks to the amazing support of my hubby, family, and friends. I won’t let you all down and most importantly, I won’t let Ronan down. We will get him through this. That I PROMISE.

Ice-age heat wave, can’t complain.
If the world’s at large, why should I remain?
Walked away to another plan.
Gonna find another place, maybe one I can stand.
I move on to another day,
to a whole new town with a whole new way.
Went to the porch to have a thought.
Got to the door and again, I couldn’t stop.
You don’t know where and you don’t know when.
But you still got your words and you got your friends.
Walk along to another day.
Work a little harder, work another way.

Well uh-uh baby I ain’t got no plan.
We’ll float on maybe would you understand?
Gonna float on maybe would you understand?
Well float on maybe would you understand?

The days get shorter and the nights get cold.
I like the autumn but this place is getting old.
I pack up my belongings and I head for the coast.
It might not be a lot but I feel like I’m making the most.
The days get longer and the nights smell green.
I guess it’s not surprising but it’s spring and I should leave.

I like songs about drifters – books about the same.
They both seem to make me feel a little less insane.
Walked on off to another spot.
I still haven’t gotten anywhere that I want.
Did I want love? Did I need to know?
Why does it always feel like I’m caught in an undertow?

The moths beat themselves to death against the lights.
Adding their breeze to the summer nights.
Outside, water like air was great.
I didn’t know what I had that day.
Walk a little farther to another plan.
You said that you did, but you didn’t understand.

I know that starting over is not what life’s about.
But my thoughts were so loud I couldn’t hear my mouth.
My thoughts were so loud I couldn’t hear my mouth.
My thoughts were so loud

Just FYI… This is what I feel like screaming tonight and I know a bunch of my closest friends would agree with me hands down. I am so lucky to have the circle of friends I do. We are so amazingly close that I consider them sisters and we would do anything for each other. Thank you girls, for rallying when one of us needs it the most and for the fact that we will all come out of this stronger, wiser, and even more beautiful. I love you all so much. You especially my sweet soul sister. You have held my hand from the beginning of all of this and have never let go. We can get through anything together.

G’nite to all of you beautiful people out there. Thank you for all the praying and loving you are doing for us. I thought of all of you while making this big decision. You were a huge factor in us choosing this route and I truly believe it was a decision that was met with such ease because of all of the positive energy you were sending our way. Sweet dreams!!!!!

xoxo

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9 thoughts on “Never looking back

  1. Ellen Spear

    I am so glad you chose Sloan – I know you know, but I promise you will be getting the best care there is. They do anything and everything to make these kids better and luckily don’t follow the COG so they can do all sorts of special treatments. I trusted them with Phoebe’s life and they have not let us down. We would love to visit when you are in NYC (and bring you a Starbuck’s!). We are back at Sloan next Monday – will you be there? Let us know – Phoebe would love to see little baby Ro. Lots of love, Ellen and Phoebe

  2. Rita Dickinson

    I’m so glad you have completed your research and analysis. Now on to NYC and kicking cancer’s ass! Please know we all support you and hold you and Ronan in love and light. Prayers abound.

  3. simone atkinson

    Maybe its because I’m from New York City…..but it always seems that the city has the best of the best….and that includes doctors. New York City will be the place to cure Ronan…if anyone knows how to flip off cancer, its a New Yorker.

  4. cynthia

    Maya
    I could say many things but prayer is the best thing.
    You have traviled my road, and you should not brake your stride. Breath and step forward even when the road feels like it had vanished from under your feet. Breath, deep and send every bit of energy into your mission, then sleep deep for an hour and walk forward into healing light again. Clean bright smells of life, get mad but, anger will zap the strangth away from you. Move the anger into only moving forward. And only smile and love Ronan as you always have. You can not change the past and cann’t hate the next moment if it has not happened yet. Take what you know and build a dream for tomorrow. Get it, down to zero, so you can build up. Doctors are not Gods, God put him in your care. Your choice will be correct.
    Bless you guys.

  5. Wendy Ledford

    Hey Maya!
    I am so happy to hear that you chose Sloan, but I knew whatever you did, it would be the right decision for you!
    I am so glad that God has answered prayers for you to have discernment….and knew that He would guide you to have peace, without looking back! 🙂 I believe that “positive energy” is really just God’s love being poured out on you. Embrace it and know it is directly from Him alone! 🙂

    Continued prayers and big hugs to you and your precious family.
    PS. You make me laugh! What a gift you have to express yourself and articulating your feelings on this blog.

  6. Mary D

    So glad you chose Sloan – it truly is an amazing place. Also glad Ro baby is coming to NY – we really need the sunshine!!

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