Tag: The Ronan Thompson Foundation

The rebirth of Ronan Sean Thompson

I seriously feel like I’ve just been through labor again. I am that tired, exhausted, and so relieved. All of the same feelings that come with childbirth. Ronan’s surgery was smooth sailing. Dr. La Quaglia is a God, is blessed by God, and has angels surrounding him every second of the day. We met with him and he told us how perfectly the surgery went, how he was able to save every organ, and how great and healthy they all looked. He was very confident that he got all of the base tumor. He looked everywhere, even in his chest and under his arteries and did not see any other signs of Neuroblastoma. This does not mean we are out of the woods yet…. The Neuroblastoma is still in Ronan’s body, but the base tumor is gone. He said the tumor was about the size of the golf ball but wouldn’t let me see it due to it already being sent off to the lab. I don’t care that much; it is gone, Ronan is here, and we are so thankful. After meeting with Dr. L, we soon were taken back to see Ronan. I was so nervous but it wasn’t as hard as I thought it was going to be. Waiting for him to come out of surgery was way harder. He looked so brave and big in the bed, all hooked up to everything you could possibly imagine. The tubes didn’t freak me out at all because underneath all of that stuff was my baby boy… waiting for me. I kissed on him and told him how proud I was of him, how brave he was and how we could finally put this part of our life behind us. He kept nodding his head and was listening to every word I said. After surgery we had to be transported across the street to the Picu. The guys who were transporting us wanted Ronan as sedated as possible, but Ro wasn’t having it. They had to give him tons of medicine just to keep him calm. We heard a lot of “Wow, what a strong kid you have.” And also a lot of “He is really tall for 3.” There was a lot of laughing about Ronan and his strength. Everybody kept telling us what a good thing it was. This is par for the course with Ro… nothing is going to stop our little guy. After they finally got him sedated enough, he was transported across the street to the Picu. I rode in the ambulance with him and we were quickly moved into our room. Woody and I have been up for almost 24 hours now… my eyes are barely open. Ronan is just now getting his breathing tube out, or excavating him as they call it.

Awwww…. I tried my best to update you all last night, early this morning, but I was so tired and taking care of Ro. It is 7 a.m. here now and Ronan is asleep. He has been having a little trouble breathing on his own, so they have hooked him up to machine that is giving him a little extra oxygen. This is normal after such a major surgery. We will be moved over to Sloan this afternoon considering all goes well today. Woody slept most of the night; I did not. That’s a mama bear for you though. And Woo needs his rest; he requires much more sleep than I do. The nurses and doctors here have been amazing. So very sweet and attentive. We could not be more pleased with the job they are doing. Our nurse looks like she is about 12. She is the cutest little thing and is so great with Ronan. What a doll.

Guess how many views Ronan’s blog got yesterday?!?! 8,122! Can you believe that! In one day alone! You all were so busy spreading the word on Ronan to make sure we had everyone praying for him. I cannot say thank you enough. I know it is because of all of you, your prayers, and positive energy, that he got through yesterday with flying colors. Our little guy is going to change the world and you all are helping him. He WILL be the poster child for this awful disease. Please keep spreading the word and sharing his story. Thank you all for holding his heart in yours and going with us on this journey. We still have a very long road ahead of us; but I feel like today is a fresh start for Ronan. He is finally free of the tumor our of his abdomen. It’s as if he has been given a new life; this is his rebirth. January 3, 2010 will forever be Ronan’s second birthday. And that makes him a Capricorn, just like his mama:) Us stubborn goats can get through anything!!

Please know how much you all mean to us, even though we don’t know half of you. Your words kept me going yesterday and If it wouldn’t have been for all of you, I would have locked myself in a bathroom somewhere and would not have come out until Ronan’s surgery was over. To all of my family and friends, I love you all so much. I am so blessed and thankful for your support and love during this time in my life. I also could not have made it though yesterday without the most amazing man alive, my husband. He truly is one in a million and the best husband and father in the world. I am so lucky, thankful, and humbled.

I am seriously in the middle of an episode of Grey’s Anatomy right now. Well, minus all the sex. I was just visited by the most amazing woman Dr. and her “team” of residents. I am beyond fascinated, impressed, and the Doctor could not have been more knowledgable, kind, and positive. I got to watch her ask her questions to her residents and see them scramble for the answers. It was awesome. She said it is not often that she see’s children respond so well after such a major surgery. She said most kids lay in the Picu for days. Her exact words were, “I don’t know Ronan, but maybe he is just such a rockstar that this is just how he is.” How awesome is it that she, this incredible woman, called Ronan a Rockstar without even knowing his nickname! I loved it!!! Made my day:) Ronan will be transported back over to Sloan later this afternoon. He has been so corporative and listening to everything we tell him to do. He really is a brand new boy!

This mama has had no sleep and I don’t see sleep happening anytime soon. I am over the moon with how well Ronan is doing and I feel so fortunate that we were able to bring him here, to the best surgeon in the world. I know we made the right decision. We are right where we need to be and today we can breathe a big sigh of relief that this part of Ronan’s journey is done and over with. Bring on the Stem Cell Transplant!!!! Ronan has proven time and time again, that he can get through anything. He truly is such an inspiration and a Rockstar!! What a little blessing to the world he is.

Love you all so much. Thank you again for your support and love!!!

xoxo

Cheers to being finished with Ro’s Stem Cell Harvest!

We spent 12 hours at Sloan today. I took Ro over there this morning to finish up his stem cell harvest. We are finally finished and they got more than enough, thank the lord. I don’t think I could have handled one more day of him being hooked up and I know he couldn’t have. We did a stem cell collection at Phoenix Children’s and many of you have asked why we are doing another one here. We are basically doing it for “insurance.” IF Ronan’s Neuroblastoma comes back….. which we pray it doesn’t, Sloan believes by having his stem cells before a relapse will increase our chances of killing this god awful disease. If they were to try to harvest them after a relapse, they don’t think the stem cells will be as good. They will stay here at Sloan, frozen, and hopefully we will never need them. We are taking every precaution as parent; we have no choice.

It was a good day though. I had a visit from a friend that just happened to be in the city for the day; a friend who was my very best childhood friend and whom I have not seen or talked to really since I was 13. She was so sweet to come by the hospital to see me. It’s so funny how life works out; as soon as she walked in it was like, hello childhood! She looked exactly the same, except even more beautiful…. if that is even possible. I am so glad I got to see her and so hope to spend some more time with her when she comes back from her trip. Thanks, Jen for coming by. My friend from AZ, Danielle, or DD, is in NYC too! Yay for that! She is staying with her brother in the city for a few nights then heading to spend Christmas with her family. She came by the hospital and hung out with us for a few hours. Always love having her around. So, I had two nice treats today from two lovely ladies. I feel so lucky:)

We have nothing else too major going on tomorrow. Ronan will go to the clinic for platelets and then Thursday we have his CT scan done. So anxious and nervous all at the same time. Please pray extra hard for him…. hoping the tumor in his abdomen has shrunk even more after 3 more cycles of chemo. I will keep you updated as best as I can. We go in very early on Thursday morning.

I am taking a night off from my run tonight and all 3 boys are going to stay with Mimi and Papa. I am going to enjoy a night out with Woody and some friends. A night out together is very much needed. Ronan’s spirits have been great; he is such a little trooper. I am the luckiest mommy alive.

Enjoy the rest of your day<3 It’s the simplest things that are the sweetest!!

xoxo

Ronan baby takes NYC

Today, has been non-stop. We got up at 7 NYC time, got all ready and headed over to Sloan Kettering. Ronan was not happy and is still not happy about being here. He keeps asking for Sharon, our nurse back home, and said he doesn’t want to make any new friends here. He was so upset over having the blood taken out of his tubes (which is something he’s had done 100 times) that he kicked and screamed the entire time. We have met a lot of new nurses and doctors, all who have been beyond nice. I was a little overwhelmed walking in here. It felt a little like we were starting all over and just being told that Ronan had cancer. I quickly snapped out of it after seeing how much the doctors really do care here. Dr. Modak, who is part of the Neuroblastoma team, has an entire wall in his office full of pictures of Neuroblastoma survivors. Woody and I both got teary eyed over it. It was the most beautiful thing I have ever seen; a wall full of kids, young and old, who have survived this horrific disease. It meant the world to us, as parents. Everything here is very positive, inspiring and everyone wears a smile. We miss our few close friends at PCH but I think we will be o.k. here. It’s not quite as scary as I thought it would be:)

After Ronan’s blood work came back and was super high, they decided on the spot to harvest his stem cells. This is great news! It means everything will move a little more quickly. The Doctor even got his sugary date bumped up to January 3rd, instead of the 7th. We are so happy about that. The sooner we get the job done, the better. Everything here is really fast paced and precise. I like that; cancer is like a job to me now.  I know what we are here to do, and we are going to do the best job at getting it done.

Ronan is mad that he has been at the hospital all day. He is finally asleep while they are collecting his stem cells. We asked Dr. M about any restrictions as far as taking Ronan out in the city. He gave us the green light to take him wherever since his ANC is so high. I love a green light:) We are going to make the best of our time in the most fabulous city in the world. Ronan is so going to take it by storm and I know this is something we will look back on in a very positive way.

That was yesterday, I finally got the Wifi set up so now I can hopefully keep you all updated. The stem cell harvest went great yesterday but they did not get the amount they needed so we will have to go back on Monday to let them harvest again. Not a big deal… we are going to enjoy today and Sunday out of the hospital and have some fun in the city. Hope you all have a beautiful weekend!!

xoxo

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My friend, Sandra, is one bad-ass MoFo <3

I’m dedicating my post to my new hero tonight, Sandra Foutz. I’ve talked about her little girl, Mia, several times on my blog. She is fighting brain cancer and I met her husband at PCH when he ran me down because he recognized Ronan from this blog. I’ve become good friends with Matt and Sandra; they are an amazing family. When this all happened to Ronan, I begged Woody to let me shave my head. I begged Liam and Quinn and ultimately I didn’t do it, because just talking about it to the twins upset them. I had to make the right call… they are 7 and are scared enough. They are just now starting to pick up on the whole being different thing and I guess a mommy with a shaved head was too much for them. I respected that, but my inner badass so wanted to do it. I did not; but Sandra did. Her husband, Matt just sent me a picture of her and I started bawling. She looks so beautiful and I can see the strength in her eyes. Sandra, you are amazing and Mia is so lucky to have you as her mom. I am going to keep this picture of you on my phone and look at it every time I am feeling weak and sorry for myself. You are my hero and I love you.

Ronan’s ANC counts jumped from 30 yesterday, to 200 today. That is great news and looks like we are getting out of here tomorrow. Keeping my fingers crossed… they want his ANC at 250 before we can leave and I am expecting that Ronan’s counts will be much higher tomorrow. I guess we were meant to be here this week. Ronan had another bloody nose and I spent from 7 this morning until about 10 a.m. pinching it. They transfused him again with platelets and that got it to stop. I ran home to shower and rest a little bit. Mimi stayed with Ronan for me. My friend, Niki, came and took me out into the world today to run errands. It was a good thing; I really needed her company. We ran into A.J.’s for a couple of things…. I about had a breakdown in there. I couldn’t focus on what I needed to get, felt like I was in a fog, and couldn’t think straight. I think I scared Niki…. it’s hard for her to watch me struggle. That’s how big her heart is. She was patient with me and helped me through it. We also ran to get pedicures together which was such a treat. I’m going to miss her so much when I’m gone:( I’m going to miss a lot of people. I’m looking at New York as though I am there to do a job. I know when we get there I will be o.k. I will be focused, determined, and strong. There is no time for being weak; it’s show time and it’s time to get this tumor out of my baby.

I am trying not to worry about our plane situation too much. I am leaving it in Woody’s hands and I have faith that things will fall into place. Woody is supposed to call Mr. W tomorrow to let him know we have the green light on being discharged, for sure. Praying that it all works out. I was having so much anxiety here tonight that I spent an hour and a half organizing our little room, disinfecting anything I could… even the floors, bed, and couch. You know you’re going crazy when doing things like that calms you. It is the only thing that gives me a feeling of control. I felt an instant sense of calm and relief when I was finished. Ronan sat and helped me and cleaned all of  his Star Wars guys. Then he insisted on throwing them all across the room for me for 30 minutes and basically played fetch with me because he is all hooked up and cannot get them himself. The things we do as mom’s:) I was happy to do it for him though; anything to make the time pass by a little more quickly. Ronan spent the rest of the  night tonight up to all of his old tricks. Bouncing off the walls, causing trouble, being sassy… all which tells me he is feeling great. One of his favorite nurses, Arica, was here and he spent a lot of the night giggling and laughing with her. She is sooooo great with him and he adores her. I am going to miss the nurses here so much. They are angels and I have such respect for the job they do; it is such a hard one but they do it so well. We are going to miss our favorite male nurse too, Danny. Love him. He is really great with Ronan. We will be excited to get back to them in January.

I’m am going to try and cuddle up with my little bug; despite the loudness of our room tonight. Oh, what I wouldn’t give for a private room! G’nite to you all. Please keep us all in your thoughts and prayers so we can get this show on the road and get to NYC already! Hugs and kisses to you all.

P.S. A very Happy Birthday wish to my dearest, sweetest, dolly, LIZ!! Happy 21st my LOVE! I hope you had a beautiful birthday and can’t wait to spend time with you in NYC!!

And P.P.S. To my new NYC friend, Macy!! I can’t wait to meet you. Thanks for being so helpful and sweet, even though we are strangers! So glad you reached out to me on here and so glad to have a friend in New York. Love it even more that you are an Alumni Sundevil! Our friendship was so meant to be!

LIZ AND RO

Overwhelmed, Insomnia, Anxiety and more

I’m overwhelmed. What do I want to do when I’m overwhelmed? Go into hiding; hence the ignoring phone calls, blog, texts, facebook, etc…. Sorry to those have been calling and I’ve been MIA. I was so ready to leave for New York today. SO READY. I don’t know how much more of this anticipation/anxiety I can take. I told you all I am a die hard plan queen. When things don’t work out; I become an instant anxiety ridden freak. This is me now. Also, hating the fact that we are just sitting in the freaking hospital, when Ronan has not had a fever now for 2 days, but they still insist on keeping him on these fucking antibiotics even all the blood cultures are coming back negative for any kind of infection. I know, I know, better safe than sorry. I just don’t like my baby having to get more medicine than he needs; and especially when he does not need it. It’s hospital rules, I get it. But my inner rule breaker just wants to take him off all of this crap and take him home. We also need his ANC to come back up; hopefully his numbers will be even better tomorrow.

Woody is working on getting the plane situation figured out. I feel bad for Mr. W…. he is trying his best to work it out for us; but time is money, people. Woody is supposed to call him on Wednesday to give him the for sure word on when we can leave. The doctors have been going back and forth on it. Sooner rather than later please. Mimi and Papa have been coming to relive me during the day; and I do the night shift. It helps so much. Except for the fact that I miss my twins like CRAZY. I’ll never stop resenting the fact that I don’t get to be around them very much anymore. Thank GOD for Woody. He wins the best dad of the year award, hands down. He is giving me the best gift ever just because I know that Liam and Quinn are in the best hands, with the best dad in the world.

I don’t have much more to say tonight except thank you to everyone who has been checking in, dropping of meals (Kati- thank you so much for last week and tonight) I wish I could give you all a big hug. We are hanging in there, we will get to New York sooner or later. I just keep telling myself everything happens for a reason. Even though I have come to despise that stupid saying because there is no reason that my baby should have cancer.

G’nite to all of you beautiful people out there. Sweet dreams.

xoxo

P.S. Because I don’t have a lot to say tonight; mainly because I’m scared of the thoughts in my head; I’m going to leave you with an email from my precious Susie who lives in Colorado. She was in town over the weekend and got to spend some much needed time with us at the hospital. It was the first time I have seen her since Ro’s diagnoses. It meant the world to me. We had the best time, talking, laughing, hugging, and crying. I miss her so much and she will always be like a sister to me. She is so great about reminding me of how strong I am and that I can do this. A piece of my heart will always be with her no matter the distance between us. I love you JYD.

Hi Mama- 

I just wanted to send you a quick note to tell you how much this morning meant to me.  You are absolutely the strongest woman I know.  Seeing you at the hospital with Ronan was pretty fucking intense.  Although I’ve been hearing about everything from the beginning and have been reading about it everyday since, nothing could have prepared me for seeing you two in that setting.  It was scary and very real.  Ronan is a darling angel and I hated seeing him stuck in that bed. With that being said, you are doing EVERYTHING you need to in order to kick this shit and that is apparent even from hundreds of miles away.  I know that very soon things will be back to normal.  Maybe not before you briefly glimpse hell (during isolation for 30 days amongst other hurdles) but very soon nonetheless.  I love you so much Maya.  You are a wonderful mama and your love alone can conquer all of this.  It has to because I said so and I’m the JYD mother fucker!
Stay strong and know that I think about you EVERY SINGLE DAY.
All my love,
Suz