Tag: thankful

I heart NYC

 

We had the most gorgeous, smooth, flight today. Not to mention, we made it to NYC in 3 and a half hours, didn’t have to deal with security, lines, people….. we just drove right up to the jet and aboard we went. The pilots were amazing and they even let Ro co-pilot the plane! He was in heaven and I was so relaxed, calm, and felt a sense of peace that I have not felt in a very long time. Just knowing that Ronan was on a private jet, without germs or 300 other people was the best gift I’ve ever received. Again, thank you Mr. W…. when all this is said and done, I hope you can meet our baby boy so you he can look into your eyes, and tell you thank you. We are so grateful to you and what you did for our family.

We arrived at The Ronald McDonald house this evening. It is quite a sight and a very happy place, all things considering. They really do it up for Christmas and make everything extra magical. I am thankful that places like this exist. I don’t know what we would do without it. Auntie Karen came and met us and we grabbed some pizza nearby. We then she came back here and she helped me unpack and organize. Feels like home ready:)

Ro is asleep and I’m going to try to get some shut eye too. We have to be at Sloan very early in the morning so Ro can have some blood work done. Just wanted to let you all know that we are safe, thankful, and so happy to be here.

Sweet dreams, angels.

xo

The happiest day of my new life

I got a phone call from Dr. Maze today re: Ronan’s scan results. He told me as much as he could, which was so nice of him to do. Waiting is the hardest part and he instantly put me at ease with his news. Woody heard from Dr. Eshun around 5:00. We have some very good news to share tonight. 2 weeks ago we were told to expect the mass in Ronan’s abdomen to shrink around 20-25 percent, but not much more than that. Dr. Eshun told us tonight that the mass has actually shrunk 47%. That is huge news for us! We could not be happier with those results. It is still in his bone marrow, and there are a couple of other areas they are going to watch… but nothing else has progressed or started to grow, so Dr. Eshun is very pleased with what he is seeing. I fell to the floor after hearing this news… and cried like a baby. All I could think about was how I knew Ronan would fight this as hard as he possibly could. He is proving it by the results we are seeing and how well he is handling everything. He is so unbelievably strong. He is fighting so hard for us all of us, because he loves us all so much.Today has been such a happy day for our family, a day full of hope and a big sigh of relief. We still have a long road ahead of us, but today was a victory for us. Tonight, we will sleep a little better and dream a little sweeter. We are so full of hope and joy and are going to continue to love Ronan so deeply and so much that it kills all of his cancer. We are doing everything we can to surround him with positive energy, laughter, and love. We will continue with his treatment plan and pray that we continue to see amazing results.

I had lunch today with 3 lovely ladies. I finally had the chance to meet another mom, Lara, her son was diagnosed with Neuroblastoma and he is now 10 years old. They live here and are very involved in raising money to fund less toxic treatments for this disease and to find a cure. I cannot tell you how much meeting her meant to me. Her son, Noah, is alive, healthy, and is so full of love for life. He beat all of the odds and is living proof that miracles do happen. Lara gave me a lot of great advice and seeing her courage and strength was so very inspiring. I can’t wait to meet Noah someday and introduce Ronan to him.

I  also saw a therapist today. I knew within 15 minutes of our session that she was the one. Intelligent, compassionate, and we meshed well. She gets it. You want to know how I really knew she was the one for me?? She asked me about Ronan’s cancer, she asked me to tell her what his treatment plan entailed. I went through the list of 5 rounds of chemo, surgery, another round of chemo, stem cell transplant (maybe 2), Radiation, and the last blast of antibodies. She looked at me and goes, “Does cussing offend you?” I go, ” No, quite the opposite.” And she goes, “Good. Holy shit.” Ahhhhh, a woman after my own heart! I loved that she was so raw and blunt. I don’t need any sissy pants, sugar-coating, therapist. I need someone who understands that this is one of the worst possible things to happen to a parent and who can look me in the eye and tell me it’s bullshit, but she can figure out how to get me through it, so I don’t have to check myself into a loony bin. This lady is going to be that person for me, I can already tell. I feel better than I have in a very long time. I can see little pieces here and there of our old life coming back. It’s like there are little flickering pieces of glitter floating through the air and every once in a while I’ll catch one. I caught one yesterday when I spent a few hours with Woody. We went furniture shopping and to lunch. I can’t tell you how important those few hours were with him. I allowed myself to forget about Ronan’s cancer for a while and just enjoyed spending some time with my husband. It was a beautiful day spent with a beautiful man.

I just want to tell each and every one of you who are reading this blog, following Ronan’s journey, praying and thinking about us, thank you from the bottom of my heart. I will say this over and over again until the day I die… I know he feels your love and I know all of the love, prayers, and positive energy are working. There is only so much medicine can do, so please continue to do whatever you are doing for him:)

Staying sane… or at least trying

Today was an easy day. It reminded me of our old life which was nice, but bittersweet as well. We spent the day at home and ran to the hospital for about an hour. Then we went and got shaved ice and headed to see our favorite friend, Halle, at our dry cleaners. It was a quiet day around the house until the twins got home. We spent the evening playing and laughing. My friend, Bethany, dropped off dinner. It was very therapeutic to see her. She is someone I don’t know very well, but I feel like I do. We grew up in the same town, I was friends with her younger sister, and Bethany and I connected last year though Facebook. Her little boy, Madden, went to preschool with Ronan. She was trying so hard to hold it together for me, but we both ended up crying a bit. It was nice to talk to her, to hear how her family prays and thinks about us everyday…. it was nice to have a bit of my home in front of me.

Liam and Quinn had basketball practice tonight and are still gone with Woody. Ronan is already fast asleep. I kept myself busy tonight picking up the house and venting to my father about some things that are bothering me. UGH. I am tired of keeping things inside and he made a comment to me earlier today that upset me. I called him back and told him I thought he was being insensitive. I should have just let it go, but I couldn’t. I think it may be best to separate myself from some people for a while. I can’t deal with the day-to-day drama anymore. I am tired of having people compare what they have went through in their life, to what we are going through. For most people, life is what you make of it. It’s called choices. We didn’t have a choice with Ronan getting cancer, but we do have a choice of how we can handle it. I am trying to stay sane and focus on my beautiful husband and children. I am trying to focus on all the positive things like how well Ronan is handling everything. I see a light at the end of the tunnel because I know Ronan is going to win. My beautiful baby will not be destroyed over this disease; we will get him through this.

Tomorrow we have a big day. We check in to PCH at 3:00 for Ronan’s scans. He has an MIBG, Bone marrow, and MRI. I told Ronan today all about coming back to the hospital tomorrow because I wanted to prepare him for his long day. He told me it was o.k. and asked if he was going to get put to sleep by Dr. Maze. I told him yes, and he said it was o.k. because, “He’s so nice, mama.” It was really sweet. Ronan is getting very used to his new way of life. It still makes me mad and it’s still not fair but I am thankful that my angel baby seems to be coming to terms with it and is accepting that this is just the way his life has to be now. I hope he understands that it won’t be like this forever. Someday, we will have our beautiful life back, and we are going to appreciate everything so much more. Sometimes, I think I am lying to myself when I say that because I did appreciate all the things we had. I guess it is a lie that I am going to continue to tell myself throughout this whole ordeal because thinking that life is going to be so much sweeter and better after all of this gives me strength and pushes me forward.

Today when we were at the hospital, Ronan asked me where Auntie Karen was. She is out of town for the week on a much deserved, fun, vacation. He told me he wants to see her and misses her. I told him I miss her too, but we will see her next week. We love you, Auntie Karen. We hope you are having the best time and Ronan can’t wait until you get back so he can tease and love you. Goodnight to you all out there… I hope you are hugging your loved ones extra tight, every night.