What a day!

What a day! So glad it is O.V.E.R! Our usual Thursday morning started out by heading over to the clinic, with our Mimi Kay in tow. Ronan seemed like he was in a good mood, until we pulled up and I think that he remembered that it was Thursday, which means Broviac dressing changing day. Holy tantrum! I had to pry him out of the car and he proceeded to kick, scream, arch his back, and cry. He is so strong that I can barely contain him anymore. I was trying to hold him to carry him into the clinic and it took a good 10 minutes outside to even pick him up. He ripped my favorite good luck necklace off, my gold four leaf clover that Woody got me for my birthday last year. Ripped it right off my neck like he was the Incredible Hulk or something. I finally got him picked up and into the clinic but he was still screaming and trying to run away. I took him out into the common area, where the coffee lady is and held him in my lap at the table. He was still kicking and hitting me. I finally broke down and started crying and this is the only thing that ever gets his attention and makes him stop. I cried and did my usual whispering in his ear and he just watched me and soon snuggled up to my neck and settled down. Finally. It was a hard morning. Thank god I had Mimi there to help me carry my stuff and help with his dressing change. His blood levels and ANC counts are still good so he did not need a blood transfusion today which is always a plus. We were able to get out of there fairly quickly. I thought Ronan was getting used to all of this but it is days like today, that I know he is not. I never know what or who I am going to get with him. It is the worst pain in the world to see your baby suffer and hurt. It is beyond emotionally draining and physically exhausting. After we were finished there, Mimi, Papa, and Kathy took Ronan home for me and I went off to see my therapist.I needed it…. my nerves were shot after that visit. We had a good chat and I have started working on some breathing techniques to help calm myself down during the day when I am feeling anxiety. We also talked about things I can do at night to help my mind wander to sleep. I’ll try anything at this point… well, except sleeping medication. Just not going to go there.

After my appointment I met my sweet friends, Jen, Trish, Bethany, and Niki for a nice girls lunch. We had a little pow wow about some things that are in the works for Ronan’s Foundation and Pediatric Cancer in general. I’m telling you, these are the kind of girls you want on your side. Very genuine, smart, honest girls. I felt so lucky to be sitting in the middle of all of them<3 I am very excited about the things we have in store. We are going to turn this into something very beautiful and positive. I will never give up on my vision or hope for all of this. When Ronan is well, it is something I will devote my life to. Right now, I am just going to have to take baby steps to get to where I want this to go. I’m o.k. with that. Baby steps are steps in the right direction.

After lunch I ran a couple of errands and went to pick up Liam and Quinn from school. Such a treat for me. There is nothing I love more than seeing their faces light up when they see that I am there to pick them up from school. It has always been one of  my favorite things, but now it means so much more to me because I am often not able to do it. They were very happy and excited to tell me all about their day. I love that they are doing so well in school and seem to enjoy it so much. One less thing I have to worry about.

Mimi, Papa, and Kathy stayed all day and for part of the evening tonight so Wood and I could go grab dinner. We went to Chelsea’s for a quick bite. It was nice to be out alone with him. We talked a lot about New York and our plan and have the dates pretty much finalized. Woody will take me out there and when he is not there, Mimi Kay will stay with me. Karen, Tricia, and Sarah have all offered to come out during part of the time too and I just may take them up on that. I’ve got a couple of people out there that I know so hoping to connect with them as well. The more support we have, the better. It’s going to be quite a journey.. I am going to have to gather all of my strength to get him though this next chapter.

That’s all for tonight. Very tired, hoping for some peaceful sleep without nightmares. Goodnight, friends. ❤

A long week ahead

Our weekend was a great one. Ronan is still refusing to act or look sick which makes this whole thing so much easier on us. I can tell his beautiful eyebrows are starting to go, but his full eyelashes are still hanging on. He looks so beautiful. On Friday we had family game night and just played at home. Ronan was of course thrilled to be spend the night with this big brothers. On Saturday Liam and Quinn had their basketball game. We were brave and let Ronan go. He was in heaven. His BFF Winston came to watch as well. It was their first mini reunion. They were both shy at first and wouldn’t even look at each other. Ronan stayed right on my lap. By the second half of the game, Ronan went to sit by his big brothers on the court and Winston soon followed. They sat by each other, talked, played, and laughed. I had to fight back the tears. It was hard to see but also beautiful to watch. Ronan took off his hat during the game and I could see other parents staring at him… also hard for me to see. I am fully aware of how sad our situation is but being out in public with him, seeing the look in other people’s eyes makes it so much more sad and real. I am so happy we took him out though, I think Woody is starting to realize that it is o.k. as long as we are making sure he washes his hands a lot and we don’t have him around people who are sick. We won’t be going to the grocery store or anything like that with him, but I think it is important for his well-being to get to do some of the same things he used to be able to do.

Saturday night we had Kay, Charlie, and Uncle Ron over to watch the ASU game. The Devils won, so it was a good night here. Liam and Quinn went home with Mimi and Papa because they had to get up early on Sunday to leave for the airport. They left for Colorado for the week for their Fall Break. Ronan was very upset about that, he was crying really hard as they got into the car. We finally got him settled down, but he is still talking about them and saying he wants them to come home. It’s better that they are gone and off doing something fun. Ronan and I have a very long week ahead of us. Last night Auntie Karen and Olivia came over to watch Ronan so Woody and I could go out for a bit. We were both tired but agreed we should take advantage of sneaking out for a bit. We didn’t do much… went for a drive and then stopped at Target. When we came home, Ronan was asleep so we hung out for a while and listened to Wood’s 45 record collection together. It was a very sweet date night. Simple but sweet.

Today, Ronan and I will head over to PCH around 1:00 to get checked in. We will be there for the entire week for Round 3 of his magic medicine. I am trying to have a positive attitude about it as far as staying the entire week in the hospital goes. It sucks that we can’t be at home… I know how much better Ronan does here. I will just have to keep his spirits up by bringing lots of things to read and we will have to go for a lot of walks. I don’t want his little legs to get weak again by sitting in a hospital bed all week.

Woody will be flying out to NYC on Thursday to meet with the doctors at Sloan Kettering. I am excited for him to get out there, talk to the doctors, and then I can be sure that the path we are choosing for Ronan, is the right path to take. New York is my absolute favorite city and I’m trying not to be sad about the reason Woody is going out there. It has always been our favorite place to visit together. Someday we will go back, as a family, and celebrate Ronan being healthy and cancer free.

Yesterday was the Susan G. Koman breast cancer walk in Phoenix. SO MUCH PINK! AMAZING! Pediatric Cancer awareness was last month. Did you see the sea of Yellow anywhere? Take a minute to think about that. Pediatric Cancer is the #1 killer of children of all childhood illnesses combined!

My husband is my hero

I think I have officially cracked. I’m sure I’ll have lots of times where this is the case but I think it happened yesterday. That’s where my family, friends, and husband come into play and put me back together. Especially my husband. He is my rock, my pillar of strength, my everything. I tend to overdo things in my life… this has pretty much always been a theme of mine. I’ve been overdoing everything, except the most important thing which is connecting and being present with my family. I have been keeping so busy… so overly busy… I guess so I didn’t have time to sit and truly think about what is going on. I mean, I know what is going on… but it is easy not to think about it when you have too much on your plate. This has been my coping mechanism. So the last few days, I’ve taken some time away from researching, blogging, emailing, etc…. it felt nice. Woody and I have had some good talks. Somewhere in the middle of all the chaos I forgot about my best friend; him. And I know why. It’s easier for me to not look at him in the eyes and to not see his pain. It’s easier to be too busy, because it’s hard for me to see him hurting and I don’t want him to see how scared and sad I am. But he knows…. I married one of the smartest men out there… it’s one of the reasons I love him so much. He sat me down and told me that I need to put my faith back into him and trust that he has already done all the research, talking with doctors, etc…. He did this weeks ago. I guess I just got lost in the shuffle of all of this… by obsessing. It has been my way of dealing with things. It’s not the right way and it’s not the healthy way. I see that now. I’ve got to trust the people around me more, trust the doctors, trust in all the prayers and good energy. It’s hard for me… but the person I trust most in my life is my husband. 110 percent. He is the most amazing man in the world and I know with him by my side we will get through this. Some people search their whole lives for what Woody and I have and never find it. Even though all of this, I still think I’m the luckiest girl alive. I’m going to focus more on being in the present… I can’t think and obsess about the future. I am here, Ronan is happy, and that is all that matters. We have to make the most of our good days with him because as of now, these are the good days. He is home with us and everyday I have to remember that the days we are together as a family are the best days of my life; no matter what our circumstances are. Ronan, Quinn, and Liam need to have things as normal as possible and that is going to be one of the main things I focus on. I have to bring back the balance and harmony in our lives.

After hounding Phoenix Children’s Hospital for 24 hours, we received Ronan’s CT and Bone scans back. I am just going to touch on this and say that it looks like the chemo is doing what it is supposed to be doing. It appears to be working but we will know much more next week after our second set of scans. This is very good news for Ronan and for our family. Please continue to pray for our little fighter… he has such a long road ahead of him.

Sick.Mad.Angry.Scared. This effing sucks.

I’m consumed by this. I’m consumed by Ronan’s disease. I research whenever I get a free second; doctors, hospitals, treatments, other kids, side effects, medicine’s, anything and everything I can get my hands on. I have to because I can’t look back at this and regret that I did not do enough. I can’t even focus on my twins anymore. All I care about it trying to find the answer or a clue to saving Ronan’s life. I am consumed and it is not a fun place to be. It is dark and lonely and I can’t stop. I’m like an addict and Ronan’s Neuroblastoma is my drug. I want to be able to enjoy things in my life, but I can’t. I think about him and his disease even when I sleep. I am on research overload, exhausted, and cannot focus on a thing. Every second I am away from the computer and doing something else, I am filled with too much guilt. I know there is only so much I can do… but if I stop, what if I miss something really important?? A piece of information that could somehow help us. I need to stop. I am going to drive myself crazy. I just love him so much. My heart is shattered into a million pieces and I don’t know how to put them back together. I am angry, sad, mad, scared, weak. Why him? Not him. This still cannot be real. I am so overwhelmed with everything in my life..even the simple things like Liam and Quinn’s homework at night. They deserve so much better than what they are getting at home right now. Everyone is on pins and needles. I’ve got to find a way to do things better around here. I yelled at my mom tonight. She was just pointing out the facts… like how stressful our house is. I yelled at her and asked her what did she expect? I shouldn’t have done that, but for some reason it is easy to take my anger out on her. I guess because she’s my mom and I feel comfortable enough with her to do so. It’s still not right…

I watched the evening news tonight with Katie Couric. They did a segment on Neurblastoma. The girl featured on it was Hayley Kudro. She is 6 and is towards the end of her treatment for Neuroblastoma. I sat and watched her story and cried. She is so beautiful and strong. She is really responding to her treatment and it sounds similar to what Ronan will be doing. He will be doing the immunotherapy as well as some other things that are supposed to increase his percentage of survival. I copied the story that was on the news tonight. You can read it below.

Neuroblastoma is the most commonly diagnosed cancer for babies in the first year of life. It’s an aggressive disease and less than half of its victims survive. But there’s new hope in a new treatment. CBS News Contributor and Neurosurgeon CNN’s Dr. Sanjay Gupta reports on this promising therapy that’s already saving young lives.

Kindergarten was supposed to mean new friends and ballet for 6-year-old Hayley Kudro. But she said she wasn’t eating well because of her tumor. “It filled up my whole belly,” Hayley replied. 

Instead, she’s spent the past year enduring toxic treatments for a cancer her family had never even heard of.

“We didn’t really have a choice,” said Haley’s mom, Karen. “It was do this, or lose her.”

Last year, Hayley was diagnosed with neuroblastoma – a cancer of the nervous system. It was the most aggressive form: she had a softball-sized tumor in her belly that choked her liver and pancreas.

“Without treatment it will grow and spread and kill the child within a matter of months,” said Dr. John M. Maris, of The Children’s Hospital of Philadelphia.

Hayley had the standard treatment including chemotherapy, major surgery and radiation. But she’s also receiving a drug treatment called immunotherapy – designed to rev up her own immune system to kill the cancer. The immunotherapy drug not only stimulates the child’s immune system, it attacks tumor cells.

A new study of 226 high-risk patients like Hayley found that adding the immunotherapy to the standard therapy improved the survival rates by 20 percent. It was so effective, the trial was stopped early.

Gupta asked Maris, “How often do you get to say in cancer research, ‘wow, we’ve found something that works, maybe even cures?'”

“This is one of those moments where we’ve proven a therapy makes a major difference,” he replied.

This is an expensive treatment, costing up to $40,000. Its side effects are relatively mild, just severe flu symptoms once a month during the treatment.

Immunotherapy will be added to traditional treatments in a variety of cancers including breast cancer, melanoma, and kidney cancer.

Hayley is back in first grade. Doctors believe her tumor is gone. Thanks to immunotherapy, it may not come back.

This is all I can write tonight. I have a raging headache and have been throwing up off and on for a couple of hours. Sorry for the gross details… nobody wants to hear about my puking. But this is my blog and censoring what is going on with me is not going to happen. Ronan is asleep due to not napping today and I am going to turn everything off and go to sleep too. We have a very busy day tomorrow with getting his scans done. Thanks for visiting my blog. Please help me spread the word about Neuroblastoma and send this to everyone you know. Thank you<3