Hooray for going home tomorrow! Fingers crossed!

Today was a hard day. But I’m sure I’ll have harder. Ronan was in a funk. He fought with me the whole day and kept telling me I was mean for not letting him eat or drink. I was pretty emotional and seemed to cry at the drop of a hat. I need to decompress. Why don’t I drink wine again? I’d better take up knitting or something.

We had a not so good nurse. Our first one. Everyone else has gone above and beyond for us. Woody is here now, singing to Ronan. Calming him down. He had a full day of not being able to eat. Which was a mistake on the nurses part and I have been complaining all night to anyone and everyone. Ronan’s nutrition is super important now. For him to miss all his calories today is not o.k. That nurse will not be our nurse tomorrow. He also had anesthesia and another scan. That always makes Ronan grumpy. As soon as he woke up from the anesthesia, we returned to our room and he was poked and prodded at some more. Poor guy. He is at his breaking point. We also had to do his shot tonight which hurt me more than it hurt him. He screamed, “Mama!” for about a second and that was it. We ended the night with his least favorite thing; mouthcare. My little monkey is beyond beat. Our most favorite resident doctor, Katie, came by to see Ronan but he was hibernating. She brought him a monkey which was so adorable of her. We are going to miss her when we go home. She has been with us since we checked into the ER almost 2 weeks ago. Ronan would not let anyone near him, except Katie. She has been checking in with us even though she is technically not part of our “team” anymore. She has become more than part of our team now; she is our friend and is going to make the best doctor someday.

I had a visit from a lady from my boot camp, Cecilia, whom I don’t know very well but I recognized her as soon as I saw her face. When you are sweating your butt off at 5 in the morning you don’t really have time to get to know who you are working out with. It really touched me that she came to see me, even though we hardly know each other. The thoughtfulness of people since we’ve been going though this has been amazing. I’m hoping I’ll get to go back to boot camp at least once a week soon. I’ve got to have a little normalcy in my life or I’ll go insane. There is nothing better for my spirit or soul then sweating my booty off.

Olivia and Jen came to visit so I was able to get out of the room for a bit while Woody stayed with Ronan. I didn’t go home today so I was needing a little break. He couldn’t have come at a more perfect time. We sat in the cafeteria and laughed and talked. It was good to talk about normal things with them.

I am so beyond ready to go home and so is Ronan. We are pretty much going be quarantined in our house and our backyard but that’s ok. We have decided visitors will have to stay at a minimum too; so no more Rock Band Parties for a while;) It will just be so nice to get home and back into a routine. You all know how much I LOVE a routine; even if it’s going to be much different now. The bottom line is we have to do anything and everything to keep Ronan as heathy as possible.

I’m going to try to get some shut eye so I can gather my strength for tomorrow. Our results come back from the MIBG scan. I’m thinking I don’t even want to hear the results….I may just let Woody go in with the doctors. I can’t take more information right now. All that matters is how much this boy is loved and how hard he is going to fight with us to get through this. Sweet dreams to you all and thank you a million times over and over again, for everything.

xoxo

No eating/drinking makes Ronan a grumpy boy…

I broke down in the playroom today. Ronan wanted to go there this morning so I carried him and off we went. When we got there he didn’t want to play. He just wanted me to hold him. I sat in a chair with him and cradled him in my arms like I used to do with him when he was a newborn. We sat there for about 20 minutes and he just let me hold him while he looked at the dragonflies hanging on the ceiling. Looking at his little face made the tears come pouring out. And once again, the feelings of, I can’t believe this is happening, washed over me. I immediately felt like throwing up. Since this guy was born, he has been my sidekick pretty much 24/7. He goes everywhere with me, we do everything together. He is my best friend. I just don’t understand any of this……I would have never imagined something like this could happen to us.

Ronan has another scan today. Which means no eating or drinking after 10 and that always makes for a grumpy Ronan. We have to wait until 4:00 and he will have to have anesthesia, again. This will be the 7th time that he’s had it since we’ve been here. Poor guy. He is laying beside me watching Star Wars and he’s mad because I won’t go and get him any otter pops. I hate these days and I hope 4:00 gets here really soon. I just want to take my baby home. Tomorrow can’t get here soon enough.

Day 5 of chemo… DONE!!!!

Today was a very good day. Ronan’s spirits were great and he smiled a lot. This is our last day of treatment for cycle one. Ronan did great! No side effects at all!!!!  We should be going home on Thursday, thank the lord! It will be so nice to have Ronan back home where we are all the most comfortable.

We spent the morning hanging out, and our friends, Christy and Jack came to visit. They always make us smile:) Woody came by for a bit and we talked to the doctor who will be in charge of Ronan from now on. Dr. Wood will still be here to guide us and follow our journey; but Dr. Watanabe will be the main man in charge of Ronan. Mimi Kay and Papa Charlie came and I went home for about 4 hours. It was just what I needed. I took a good 2 hour nap and a nice shower. It’s amazing how much better a shower can make you feel. While I was at home, Mimi and Papa worked their magic and actually got Ronan to go and explore the playroom that they have on our floor. He has been refusing to visit it with me, so this was a huge breakthrough. He painted a picture, drove a remote control car, and just enjoyed being a child. I could not have been happier with this news.

I had mentioned to my friend, Gay, that I was going to have to set up a preschool at home for R, since he won’t be able to go back to PVUMC this year. Not 2 hours later, she showed up at my house with a beautiful eisel for Ronan, along with a bunch of other learning supplies. Talk about an angel. I am so so so so very grateful for her friendship. She has such an amazing heart. I can’t wait for the day that my 3 boys can play with her 3 boys, all together again. My little M came to visit too! Her sister told her to stop being so neurotic about being pregnant and get down here to see Ronan. Marisa cracks me up. She Googled whether or not she should visit a hospital while she was pregnant and Google decided for her that she was too germy and could infect Ronan. That’s why she has been staying away. Once she was here, I told her to stop it and to come into Ronan’s room. Our guy nurse Danny, was here when Marisa was telling Mimi and I about her findings on Google and he just started laughing. He thought is was hilarious and informed us that there are a ton of nurses working here that are pregnant and that’s Marisa’s findings were wrong. It gave us all a good chuckle and I’m so glad to hear M is not “germy” because I’ve missed her way too much. I ended my night with a visit from my friend, Danielle. Ronan was sleeping the whole time she was here and I was sad she didn’t get to see him, but we sat for a good 2 hours and just talked. We talked about how funny and crazy life is… how you never know what your path will be… how things can change in an instant…how important it is just to be present in your day-to-day things….. We laughed a lot and talked about normal things too. I feel renewed after sitting with her. Her light and energy was so positive and I can tell she is not scared about what we are going through. She knows everything is going to turn out all right.

I’ve had a lot of people ask me why my mom is not here. I figured I’d explain that now… not that I owe anyone an explanation. My mom knows my reasonings and she supports me. First off, let me start by saying that if my mom lived here, she would absolutely be here. But to put her on a plane full of germs is just something I’m not comfortable with right now. Ronan’s immune system is so very vulnerable. The littlest thing could set him off for an infection. I can’t take any chances on that and my mom tends to get sick with a cold or something every time she comes here for a visit. Another big reason, and I’m saying this with tears pouring down my cheeks, is my mom is not a source of strength for me at this moment. I am afraid that having my mom here would make this all too real. It would make me want to fall to the floor and never want to get back up. I cannot bear to look into her eyes and see the pain she is feeling. It would KILL me. I need my mom to get a little stronger before she comes to see Ronan. For his sake, and mine. I want her here more than anything, but I have to surround myself with people who are strong enough to go through this with me right now. My mom is not there yet. I know she will be soon… she seems to be getting stronger everyday. Her time will come when I need her here… it’s just not right now.

I’m tired and it’s time to cuddle up with my little angel. Thanks for thinking of us, loving us, and supporting us. Even after all we’re going through.. I am so very blessed to have the life I do…. everyday with Ronan is a beautiful day.

P.S. Screw you, Cancer!!!

There. I feel better now;)

Friends are kisses blown to us by angels

I heard a great story today. A true story about a little boy who at age 5; was diagnosed with Neuroblastoma. And today he is in the 4th grade with a clean bill of health. I also talked to his mom and I can tell just by hearing her voice, that she is an amazing woman. She is a fighter and never gave up hope; even in the darkest of nights. You can read Noah’s amazing story here:

http://www.noahnelson.blogs.com

It’s stories like this that I need to hear right now. Stories of survivors and people who have made it through things like this. We are going to have a story like this someday. A beautiful story about a beautiful boy who beat all the odds. I know in my heart of hearts that Ronan is going to get through this. This is just a bump in the road for our family.

Whoa baby! Ronan was so mad today. I have never seen him like this in my life. I’m not kidding you when I say he spent a good 5 hours of the day hiding underneath his blanket and growling at anyone that came near him; including me. I think he may have learned this from our last roommate, Jose, who hissed and showed his “fangs” to anyone who approached him. The nurses kept asking me if he had come out to pee yet. I just kept telling them that he was hibernating.

My friend, Niki, came to visit us today. It was so good to see her. She held me in the parking lot and we cried together for a few minutes. It felt good to get that out and to be able to look her in the eyes and see the love pouring out. She loves Ro so much. He was so happy to see her  and she spoiled him with a bunch of gifts. We are so lucky we moved into the neighborhood we did because Niki lives only a few houses down and Ronan goes to school with her little girl. He really misses her and asks all the time if she can come over. Someday soon, I tell him.

Trish came tonight and brought me dinner and we sat in the dark for about 2 hours and talked, laughed, and tried not to cry. We talked a little bit about our good friend, Marisa, who is going a stir crazy that she can’t be here because she is pregnant. She is somebody I met through Tricia a few years ago and we instantly became friends. She is one of my dearest and someone who I call on for anything and everything. I know it’s hard on her because she feels so helpless. It’s hard on me because I miss my friend. I also know that we have a long road ahead of us, and there will be plenty of time for me to call on her when I need her most. Right now, she needs to take care of herself and the baby boy who is growing inside of her belly.

I saw the twins for about an hour today. They seem so big and like they have grown up so much since I have been away. I hate that I am missing out on everything with them. The only thing that is saving my sanity is my wonderful mother and father in-law. Those two boys could not be in better hands.

Have I mentioned before that I am mostly writing this from my iPhone? So please excuse all the errors, etc…. I am so anal about that kind of stuff…. so just bear with me. Ronan gets mad if I have my laptop in bed with him. He is so bossy;)

Tonight I told one of my friends, Giangi, that I truly belive it is because of all of of the prayers and love that Ronan will be healed. I know that there is only so much that medicine and doctors can do. So please, continue praying for our beautiful boy… and pass along the word to anyone  and everyone you know.

Goodnight to all of our angels out there.

xoxo

It was a Sparky kind of day

Day 4 of Ronan’s chemo has wiped him out. His counts are low so he is getting a blood transfusion as we speak. I’m watching the blood pour into his IV while he peacefully snoozes away. Still so weird that somebody else’s blood is going into my little boys’ body. Ronan has been giving all of the nurses a hard time today. Even when they just come in to check his blood pressure. He has been giving us his mean little squeal, which sound like a little piglet, and completely covering himself up in his blanket. It is so dang cute. It’s his way of telling us, he’s had enough. I don’t blame him. I’ll bet you in the week and a half that we’ve been here that we’ve seen over 30 different nurses. I can’t keep track of them all anymore.
Papa Charlie arranged for Sparky to come today. And my dear friend, Lauren, arranged for her amazing photographer friend, Sandey, to capture it all. We got Ronan up out of bed… finally… and went out into the hall of the hospital where Sparky was waiting. He also brought one of the ASU Football players with him and two of the cutest little cheerleaders that I’ve ever seen in my life. Ro was soooo excited. His little face was priceless and could have lit up an entire city. We took pictures and Ronan gave Sparky multiple high fives and knuckles. He was pretty tired so I held him most of the time but he did let me set him down for a bit to take some pictures by Sparky. Liam and Quinn were loving it. They were so cute when we put them in between the 2 cheerleaders. Trying not to be embarrassed but they were blushing from head to toe. It was a great day and exactly what Ronan needed. Thank you to everyone who made this day possible. My little tiger is waking up now and needs his mama!!

**** A very special thanks to Sandey Tenuto, the amazing photographer for taking time out of her day to come and capture this moment for us. Words cannot express how grateful I am!!!! You have an amazing gift!!******

xoxo

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Day 4 of chemo! We are kicking butt!

Ronan is in good spirits today and just started his 4th day of chemo treatments. We are going to shave his head soon…. probably in the next few days. I do not want to see his beautiful hair fall out. He is excited about it and keeps saying he is getting an army guys haircut. Woody said he is going to shave his too… and Lauren said Winston will do it with them too. I wanted to do mine…. but Woody put his food down on that one. If he wouldn’t have, I totally would shave my head for my baby. It’s only hair and it will grow back. Today, Papa Charlie used his magic to get Sparky from ASU to come and visit Ronan. He doesn’t know yet and he is going to be so surprised. Ronan is obsessed with Sparky!! I can’t wait to see our little angels face when he walks in the room. Lots of pictures to come. We will continue to pray, love, and spoil this baby. Love you all. Have a beautiful day and hold someone you love, really, really, tight.

Ronan would totally pee on the pictures…..

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I was born a fighter. It’s just the way I’ve always been. Growing up there was nothing I couldn’t say or do. Nobody could tell me otherwise. My family loves to tell the story about how when I was about 4 years old, we came to Arizona to visit my favorite Aunt Sheri. The adults were looking at some pictures and told me I couldn’t touch them because they didn’t want my dirty little paws to ruin them. When they set the pictures down, I was so mad I grabbed the pictures, pulled down my little bikini bottoms and peed all over them. Since I was little, you couldn’t tell me what to do. When my parents got divorced, I didn’t feel sorry for myself. I told myself, this is how it is and you can either be a weak little girl about it or you can suck it up, hold your head high, move on, and look forward to the future. That’s precisely what I did. In high school I listened to no one. I drove my mom crazy with my it’s my way or the highway attitude. I came and went as i pleased, I was a leader and I was fearless. I hated my stupid small town and couldn’t wait to escape because I knew there was so much more out there to explore and see. I went off to college and never looked back. I knew exactly the type of man I wanted my husband to be and I wouldn’t settle for less. I thought that kind of man didn’t exist and I was totally content on being on my own. All that changed when I met Woody. I knew on our first date that I was going to marry him. And tonight when he had his arms wrapped around me in the hospital, I felt with every fiber in my  body, that everything was going to be alright. I don’t care that every odd is stacked against us, I don’t care what the doctors say. This is our son, and he was born a fighter and nobody is going to take him away from us. I feel like screaming, “HEY YOU ASSHOLE!!! YOU CANNOT HAVE HIM, HE IS OURS AND WE WILL NEVER GIVE UP!!!” I know that he is such a special little boy; that somebody wants to take him from us. But I will fight with every bone in my body to not let that happen. And so will Woody. Ronan is stronger than the both of us put together. He has a fire in his soul and is exactly the type of little boy who would pee on some pictures if you told him not to touch them.

Today was day 3 of Ro’s “magic medicine.” He is doing amazingly well with it. But I also know this is a very mild dose. He is having a hardest time getting used to the fact that he has to take medicine orally now, 3 times a day. Along with the mouth care that he is having to do. He hates it and fights and screams when he has to take it. We have been having to hold him down while he spits it out and flaps his little arms and legs and yells, “I need a break!” He is such a little spit fire! I swear, this kid was born with all of my strong parts and all of Woody’s strong parts. I am going to be scared to see how he turns out in his teenaged years!

Lauren came to visit us in the middle of giving Ronan his medicine. She was so great at helping me. She bribed him with presents and made him laugh by putting little matchbox cars all over her head and arms. Ronan’s friends from school made him a big sign and Lauren brought gifts from a ton of people. She had a whole wagon full of stuff. It looked like Christmas around here! Lauren just sat with us and loved him, held my hand and cried with me a bit. It’s hard to hold it together around her or to even look her in the eyes because it’s like she can see right through my soul. She knows that I am trying to be so strong, even though I feel like curling up in a ball and dying.

Mimi Kay and Woody were here most of the evening and night. Mimi helped me shower Ronan which he is not loving. We have to cover up his broviac with a sticky cover and tape. It scares him because he knows we are going to have to rip it off when he is finished. It will be nice to be home in his own big shower where things seem a little less scary. Woody practiced giving an orange shots tonight with one of the nurses. We will have to give Ronan shots everyday in between the chemo treatments. I am not looking forward to that at all. I don’t think there is anyway to explain that to a 3 year old. There is so much to learn before we go home on Thursday. Our life is going to have to be totally different and we are going to have to do things 110 percent all of the time. We have to keep Ronan well, we have to keep our baby as healthy as possible.

I talked to my friend, Lisa, today. I cried when I told her about Ronan. I could tell she was in shock and could not believe what I was saying. Do you know how hard it was to say to her, “Ronan has cancer.” It was awful. It is awful. I still can’t believe it myself. I also had Ro call my step-dad to talk to him. We just spent the entire summer with him and he is devestated. I’ve lived with my step-dad since I was 13 and I have never heard or seen him cry. Today, he bawled like a little boy. It beyond broke my heart. He loves my boys so much and he has a very special bond with Ronan. We have to make it though this; I promised Ronan next summer we would take him to the San Juan Islands where Papa Jim drives the big boat to all of the different harbors. Next year is our year to go… Ronan has been too young to take but we decided over the summer that at age 4, he could go. We will go when this whole nightmare is over and our battle has been won. I’m still trying to figure out why this is happening to us. Did I do something really awful in a past life or something? Is Ronan meant to be the poster child for this disease? As I think I’ve said before, there better be a REALLY, REALLY, good reason. Because none of this seems fair. But I am not going to whine, cry, or crumple up in a corner. I am going to stand strong with my friends and family around me, until our little boy is back home and healthy again.

Our doctors

Our doctors have been nothing short of amazing here. I’ll start with our anesthesiologist, Dr. Maze. Who should be called, “Dr. Amazing” because that is what he is. I was standing in the hallway the day after we had found out kind of what was going on with Ronan and Dr. Maze saw me holding Ronan and stopped and pulled me aside to ask what was going on. I had never seen this man before in my life but as soon as he saw me, and  saw how scared I looked holding on to my baby boy, he took the time to find out what was going on. He asked who had done his anesthesia previously and I couldn’t remember and he said, “It doesn’t matter, this little “pupski” is mine now. I’m taking care of you.” This man has been there morning, noon, and night for us. Even when the nurses say he’s too busy to come, I’ll have them call him anyway and he is always there to do his anesthesia, hug me, tell Ronan he loves him, and that everything is going to be alright for his “pupski.” Last night he came up to check on us and sat with Woody and I and asked how we were holding up. He looked at us and said, “Are you two taking anytime to be together?” We both told him how that was not possible now. He then said, “I’m telling you this as your friend, you two need to take time to be together, even during this awful time.” He said it with such concern in his eyes that you know that this man is much more than a doctor; he is another one of our angels.