Mama and Ro baby take NYC <3

Ronan and I arrived to NYC yesterday morning 5:30 East Coast Time. The flight was great, fast and Ro slept the entire time. We headed to our hotel, checked in, and we were in our room by 6:30 a.m. Ronan was chipper and ready to play, but I told him how it was really only 4:30 in the morning at home so we needed to rest before our big day. He didn’t put up much of a fight, crawled in bed with me and we slept a couple of hours. You’d think I’d be a zombie tonight but I’m not. Must be that NYC energy. We woke up, got ready and headed over to Sloan Kettering. As soon as we arrived to the 9th floor it was party central. They were having a parade for Marti Gras. Ronan loved watching all the action. We spent the next 4 hours having labs drawn, getting his MIBG scan injection, and had an Echo test done on his heart. It was a very long day but we killed a lot of time by playing in the playroom and doing arts and crafts. As much as this sucks, today I found myself having the time of my life with Ronan. I feel so lucky to be able to spend so much time with him. I cherish every second I have with him so much. As the day was ending, we went to finish our last thing which was the Echo test. An adorable girl named Penny took us back into her room and I laid down on the bed with Ronan so he could rest on top of me while she did her thing. The test is really simple and was done in about 20 minutes. Ronan ended up falling asleep on me so I sat and watched Ronan’s little heart on the screen as it pitter pattered away. Penny kept telling me how beautiful and healthy it looked. As soon as Ronan’s little heart started beating away and we could hear it, I completely lost it. I told Penny I was sorry that I couldn’t stop crying and she smiled sweetly and told me that it was totally o.k. I explained to her that hearing his heart beat like that reminded me of when I first heard his heartbeat on an ultrasound. I will never forget what it felt like to hear his heart for the first time and now this. Who would have thought in a million years that I would be listening to Ronan’s heart on a monitor again due to cancer. So. Freaking. Unfair.

After the Echo test we scooted out of Sloan quickly to go back to our hotel and meet one of Auntie Karen’s best friends for dinner. We met Krista at Serendipity and it was such a treat. I’ve heard about her forever and it was so lovely to finally meet her. We had a nice dinner and Ronan and I shared the to die for Frozen Hot Chocolate. He was beyond tired from his day and ended up falling asleep in my lap. Krista and I had a chance to finally get to know each other and I can see why Auntie Karen loves her so much. She was a delight:) Just as we were leaving, Ronan woke up not a happy camper. We were going to take him to Dylan’s Candy Shop, but I decided that we’d better just head back to our room. Krista got us a cab and sent us on our way. We came back here and  talked to Woody, Liam, and Quinn via Face Time on our Macs. Ronan got a big kick out of that. The rest of the night was spent just hanging out and playing. Ronan finally fell asleep a while ago and he has no idea what we have in store for tomorrow. I have yet to tell him that he has to get his MIBG scan. UGH. He is going to be beyond mad that, 1) he has to get his sleepy medicine and 2) that Dr. Maze is not the one giving it to him. I did not want to tell him any of this today because I know he will sit and obsess over it. I’m not telling him anything until right before we go back so they can put him under. I am nervous for this MIBG scan even though we just had one not too long ago. Ronan has been complaining of his right arm hurting for a few days now. I had one of the doctors look at it today and we cannot see any bruising or swelling. So, of course my mind goes to the worst place possible which is something I’m not going to even say out loud. We will know by tomorrow if anything new is going on. I am sick to my stomach tonight. Ronan has also been complaining of his right leg hurting and I have pretty much been carrying him everywhere. I noticed him limping tonight. This has been going on for a while now and has been something we have just been watching closely. As I said before, if anything is going on, we will know by tomorrow. Pray that it is not. I’m thinking positive and just keep telling myself it is his bone marrow healing or growing pains. Please let it be one of those things.

As of now, our plan is to stay here until Thursday or Friday. We will then return around March 20th and that will begin our 5 week long stay. Woody will be coming out with me during that time for a while, thank god. It is really hard to be here without him. He is such a big help to me when he is here. We both really miss him this trip. It’s hard to be a single mom, in a different city, when your kid has cancer. It’s hard but I am strong and know I can do it. New York is going to be the best adventure yet.

That’s all for tonight. Sleepiness is starting to kick in. Let’s just hope it lasts. I am tired of waking up every night at 3 a.m. and not being able to go back to sleep. I call it the witching hour around here. G’night, sweet dreams, and lots of prayers for our Ro baby tomorrow. Love to you all!

xoxo

Leaving on a jet plane….

 

 

Ronan and I are flying out on a red eye tonight to New York City. We will be there most of the week getting blood work done and scans. I’ll keep you all updated as much as possible but it will hopefully be a quick trip and we should be home by Friday. Have a beautiful evening. See you soon NYC!!!

xoxo

 

You belong among the wildflowers

I was telling my bestie today that I remember when I was a child and my parents used to watch the show “30 Something.” As  a little girl, I always thought the people on the show were so old and the show was really strange. I then told her how I wished I would have paid attention because then maybe, I would have picked up on the warning signs that being in your 30’s is hard. Or maybe it’s really not, and it’s only because of our situation, but is seems as if everyone around my age is going through something right now. Please tell me it gets easier…. because right now this is so not how life should be. WTF?? I also told her that I feel like someone just came along, took a look at me and thought, “Oh, hello. You’re life is too perfect so we’re going to give your kid cancer.” Just out of nowhere, BAM! This comes along. Really? Thanks a freaking lot. Couldn’t I have been hit with something a little less drastic? This is so not necessary. Trish and I both decided that if we were told that the world were ending tomorrow, we would believe it. It is the only explanation for all of this bullshit. I am laughing out loud thinking about something that happened after she and I hiked tonight. We were walking back from Camelback Mountain and we were almost to my house when some car comes flying out of their driveway and almost hit us. Tricia seriously had to grab me and pull me back from being hit by the car. We both then started dying laughing saying how we should have just jumped in front of the car so it could have hit us. O.K…. maybe not such a funny story as I sit and re tell it, but we were dying laughing. Totally kidding of course but I swear the only way I am going to get through any of this is laughing at as much stuff as possible. No matter how morbid it may be. Oh, bestie. How I love you so. I will tell you everyday of my life that you are my saving grace. I am so lucky to have you. Together we will get through all of this. I promise you this.

So, this weekend, as horrific as it was due to some terrible bullshit that has gone down; was absolutely lovely. Pain and sadness cannot be denied, but through all of the tears I see a soul being cleansed and renewed. It is amazing what can come of things when you are surrounded by the people who love you the most and who refuse to let you fall without picking you back up. This weekend was spent doing things that we used to do as a family before all of this. Hanging out, going to baseball practice, playing outside, movie night, eating out for breakfast. Such normal family things. It felt so nice because it has been so long since we have been able to really spend time together like this. Ronan is acting as if he is the healthiest boy in the world. He is full of nothing but giggles and smiles, love and light. He is so happy to be at home with his toys and his brothers. He happiness is infectious and keeps us strong.

I spent a lot of time outdoors this weekend doing what I used to do before all of this. I went on a 2 hour hike with Trish and Sarah yesterday. It was so therapeutic. I love nature, love being outdoors and the time with the two of them is always healing for me.  Then this evening I hiked Camelback with my Tricia Boo. Hiking Camelback is something we used to do all the time together. It’s our church and our special place. We got to the top, sat down for a bit, and I prayed my little heart out. It was so peaceful and gorgeous. I miss doing things like this so much. I’ve already made Trish promise that we will get back to how things used to be, as much as possible. I’ve got to have a little normalcy in my life and time spent with her, running or hiking is so good for both of our souls.

Ronan and I go to PCH to the clinic tomorrow. They will do the standard checking his blood levels to see how he is doing. I’m not sure when, but sometime this week we are flying out to NYC so they can check my blood and do his scans. You ready to hear step one of what we will be doing at Sloan for Ronan?? Here goes……

Full Title :
PHASE I STUDY OF ANTI-GD2 3F8 ANTIBODY AND ALLOGENEIC NATURAL KILLER CELLS FOR HIGH-RISK NEUROBLASTOMA
Purpose :
The goal of this study is to see if it is safe and feasible to give chemotherapy (topotecan, cyclophosphamide, and vincristine), natural killer (NK) cells, and an antibody called 3F8 to patients with high-risk recurrent or persistent neuroblastoma. 

The NK cells, a type of white blood cell, must come from a patient’s relative who shares half of his or her HLA proteins, which are immune proteins important in transplantation. Studies have shown that NK cells from a donor can be given safely and can be helpful in treating some diseases. These NK cells are collected from the donor and purified.

NK cells can recognize and kill abnormal cells in the body and can work together with antibodies to kill target cells. The antibody 3F8 specifically recognizes a protein present on neuroblastoma cells. Researchers have already shown that the 3F8 antibody can be administered safely to neuroblastoma patients. They want to determine the effects of the combination of chemotherapy, NK cells, and 3F8 antibody on patients’ cancers and bone marrow function, and how to maximize its benefits in treating cancer.

Eligibility :
To be eligible for this study, patients must meet several criteria, including but not limited to the following: 

  • Patients must have a confirmed diagnosis of high-risk neuroblastoma that has persisted or progressed despite standard therapy.
  • Patients must have a matched blood relative who can donate NK cells.

This is where we are starting. We will start this on March 21st and will be in New York for 5 weeks straight. We will then be able to come home for a 3 week break. To explain all of the treatments combined right now is too overwhelming for me. But I wanted to let you all know where we are starting off. Dr. Kushner has seen great results in the lab as far as this study goes and it’s been successful in kids as well. We are putting all of our trust into him. This has to be effective. We don’t need anymore bumps in the road, please. This is going to be tough on Ro. I know the 3F-8 stuff is painful. But he is so strong. If anyone can do this, it’s Ronan.

I hope you all are well tonight and had a beautiful weekend. We are so thankful for all the love and support through all of this. We are very thankful every second of our lives. Sweetest dreams to you all.

xoxo

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