Blowing kisses to the heavens above

Today, was a great day. Woody worked for a few hours and I took care of Ronan. We spent the day getting him to do normal things like walk around, pee, and drink. He is in a lot of pain; even though he won’t really tell us. He has such a high pain tolerance, but I can tell by the look in his eyes that he is hurting. We are working on getting his lungs to function as well as they are supposed to be. This means he is doing treatments like blowing bubbles and blowing into a little machine for us. He is wiped out from today and his demeanor has been very serious and business like. He knows he has a job to do.

After Woody was finished working, he came back to Sloan. Dr. Kusher stopped by for a visit and I have totally fallen in love with that man. (Not really, but you get what I am saying) First of all, to say the man is a genius is an understatment. Not only is he brilliant, caring, funny, and nice… he also really cares about his patients their parents. He stood and talked with Woody for a good 30 minutes about Ronan and he is elated at the way he is responding to treatment. He told us that Sloan is always an open door to us should we choose to come back her for radiation or whatever else. I talked to him a little bit about running. He runs in Central Park every morning. A.M.A.Z.I.N.G. Woody asked questions and Dr. Kusher gave him an answer to everything. He also said we could take Ronan home this weekend since he is doing so well and do Round 6 of chemo at PCH. We have decided to just stay here and finish it. I want to make sure Ronan is totally healed before heading back to AZ and taking him home on Saturday, just to check him in to PCH for Round 6 just does not make much sense. We may as well just stay here and get it over with so that way, when Ronan can go home, he can actually stay home for awhile.

After Dr. Kusher left, I ran out to go back to RMH. I put on my running clothes and ran to Central Park in the dark (sorry Marisa… stop with the panic attacks;) I got in about 8 miles. Tonight, while I was running I felt like such a weight had been lifted off of my shoulders. I looked up at the sky, said thank you and blew kisses to the heavens above. It was the most gorgeous run. To be in the middle of a park, surrounded by beautiful buildings and lights in the distance; and for such a busy city, my run was so quiet and peaceful. It was heaven on earth tonight. I am going to miss New York so much. This city has been such a positive experience for all of us; I feel like a new person and I know Ronan does as well.

After I ran I went back to RMH, showered and packed my bag for the night. Ro is asleep and Woo is playing on his laptop. I am going to snuggle up to my hubby now and watch a movie. What a perfect way to end this perfect day.

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

Sushi, Sake, and Cancer

I’m having a ton of anxiety again. Not sure why, it just seems to come and go in waves. I have not been able to run in 2 days… maybe that is why. Running seems to help me get rid of some of this nervous energy. May take a trip to the gym later…  I am really missing my Central Park but it is covered in about 10 inches of snow. Woody has been working today, I have been taking care of Quinn and Ronan while Liam has been hanging out with Woody and then met us down in the playroom. I took Quinn and Ro to eat at the pizza place nearby. Have I mentioned how much Ronan has been eating?? It is insane. I think he eats more than our family, put together. Here is an example of the lunch we just had. Me: Bowl of Tortellini soup. Quinn: 1 slice of pizza and some Fetuccine pasta. Ronan: 3 slices of pizza (they are huge) bread knots, and half of Quinn’s Fettuccine. Not to mention he had just eaten an hour before. I swear he is eating every hour on the hour. It is so great for him; he dropped a little weight during our last round of chemo. I bet you he has put it all back on and then some. Pizza seems to be his favorite as he is eating it at least 3 times a day.

I am trying to let Liam, Quinn, and Ronan soak up as much time together as possible before the twins have to leave. I know Ronan is going to be devastated when they go back to Arizona. Just the thought of it makes me tear up. I hate that they have to be a part, but I also know it is going to be easier on me. It takes a lot to entertain 3 little boys’ who are away from home. Liam and Quinn have been such troopers though; we have been dealing with a little bit of behavioral issues which has thrown me for a loop. It’s mainly my Quinn. I know where it is coming from. He is nervous, scared, and is trying to adapt to our new life but having me gone a lot of the time is hard on him. He is becoming more independent though. I notice little things that I see him doing on his own that he used to not be able to do. I sit back and watch him and wonder, when did he learn how to do that?? Wasn’t I supposed to be there to see it??  I’m trying to do my best to address the things going on with Quinn; we have been doing a lot of talking.

I’ve been emotional the past few days. Being away from our own home is hard…. we are basically in a little studio apartment. Lots of “stuff” in here which is about to throw me over the edge. This whole blizzard thing has left us pretty much inside the RMH all day. About to lose it. It’s a funny thing how whenever I seem to be at my breaking point, my friend Charisma calls me. It’s like she can sense it. She called today and we had a good chat for about a half an hour. She does that type of thing often…. when I am feeling overwhelmed or sad, ring ring, and it is always her. It was good to hear her voice today and I always feel better after our talks. Love you, CC.

That was from earlier today. Guess what time it is?!?! 2:30 a.m. which is what I call the witching hour around here. I wake up at this time every night like clockwork. I just woke up from a very vivid dream which involved Ronan and his cancer. Cancer never fucking sleeps around here; I swear I never get a break from it. Tonight, I was able to get out a bit. I took all 3 boys’ over to Kay and Charlie’s place and then I went and walked the city for a bit. It was a mess but I really needed the walk and alone time. Woody was on the phone with clients and ended up meeting me for some sushi and sake. We sat, I tried to eat a little bit, and we talked. I was in a funk today and he knew it. We talked a lot about Ronan…. at one point I looked over at him and said, “Did you ever think in a million years we would be here?” He of course said no. I told him how I always pictured our life and it was either something happening to me or him that I imagined dealing with. Never was it one of our kids. We had a nice time together but no matter what we do, it’s like a big black cancer cloud is hanging over our heads. Fun times I tell ya. We then walked back and picked up Quinn and Ronan. Liam stayed the night with Mimi and Papa. On our walk back, Quinn was telling me how much he loves New York and wants to go to Columbia University to be a doctor. It was something so little, but it made my night. He told me that this is his favorite city ever…. he is such his mama’s boy:) Ronan would not sit in his stroller and was running through the snowy city, and was laughing and laughing. It was such a perfect moment. We got back to the RMH and everyone was pretty tired since it was so late. The boys’ and I crashed out and Woody stayed up dealing with some airline issues. He needs to get back to Phoenix and we are trying to figure out his travel dates for everything now that it all got screwed up due to the snow. He was supposed to go back on Sunday; but obviously that didn’t happen.

On Wednesday, we should have all of Ronan’s scan results back. We also meet with Dr. La Qualia which I am super excited about. I talked to my friend, Pam White tonight and I think she is more excited than I am for me to meet La Qualia. He saved her daughter’s life. She gave me a picture to give to him of her daughter; she keeps him updated on her by sending him pictures of her beautiful little girl. I can’t wait to give it to him.

That is all for now. 3:30 a.m…. have to try to get back to sleep so I’m not a zombie tomorrow. Love you all. Hope you are having the sweetest dreams.

xoxo

Christmas 2010

This  post was from last night. We have been having Wifi problems at the RMH. That’s why there have been lack of updates. I’ve missed you all and hope you had a great night last night. We had a beautiful time together and now the city is covered in a blanket of snow. Below is what I wrote last night. Love to you all.

Silent Night…. Holy Night…. All is calm… All is bright….

This is the lullaby that I have hummed to Ronan since he was born. I’m not sure why, but I hum or sing it to him every night before he goes to sleep. Since he was diagnosed, I’ve stopped singing it to him. I’ve taken the most beautiful song, and turned it into something crazy in my head, telling myself that I don’t want it to ever be a silent night because that means my baby will be up in heaven and not with us anymore. I’ve only told a few people about this… Tricia, Marisa, and Charisma. Charisma is the one who told me she understood, but really thinks the song is not about what I have turned it into. It has always been my favorite Christmas song; until now. What we are going through is so scary to me that I have taken one of the most beautiful things and turned it into something ugly and sad. Sometimes I feel as I don’t have control of the feelings and thoughts I have. How can I?? My baby has cancer; nothing will ever be the same.

We had a great Christmas morning. We stayed in our room, opened up gifts, and the boys could not have been happier. We were all together as a family and it was such a beautiful thing. As they were busy playing with their toys, I bundled up and braved the 29 degree temperature and headed out for my Central Park run. I ended up running 10 miles and it was beautiful, brisk, hard, and just what I needed. Before I came on this trip, I was telling a good friend of mine how I came here to run the NYC Marathon a couple of years ago and how I would never do another one again because it was so hard. He looked at me with a sparkle in his eye and goes, “Oh, you’ll do another one…. Just you wait and see.” As I was on about mile 7 tonight, I thought to myself… I am so coming back here when Ronan is all better to do this marathon again. I imagined Ronan waiting for me at the finish line, so proud of his mommy. I will run it for him, and for NYC. This is the city that is going to heal my baby and is healing his mommy as well. There is no place I’d rather be right now. Funny how this city feels like such a second home to me already. That is because it is full of all things magical, miracles, and it is all about taking that tumor out of Ronan. January 3rd cannot get here soon enough.

Tonight was bittersweet. I have been doing o.k. here at the RMH, but tonight my emotions got the best of me while we were doing the whole Santa thing with the boys and all of the other families here. They do such a beautiful job and are so generous with the gifts. I was standing up next to Woody and the boys, just kind of soaking it all in. Then the tears started and I couldn’t get them to stop. It was all too much. The room was full of the most beautiful kids, who are fighting so hard for their lives, but are still so happy. Then there were my 3 babies sitting there together; like it was just another Christmas. Woody pulled me down next to him and let me cry on his shoulder and tried to comfort me by whispering to me how lucky we are to all be together and that’s all that matters. He keeps telling me that together, we can get through anything. Team Thompson, as he likes to call us. He is such a good man. After awhile, the tears stopped but after the boys’ got their gifts I took Ronan up to his room. For one, he wanted to go, but two, I felt an anxiety attack coming on. Still not doing well in big social situations I guess.

I am fighting everyday to be brave and strong. Sometimes, this all still becomes too much. This will never become easy for me, everyday is a struggle. Imagine living everyday of your new life full of hurt, and watching everyone around you hurt as well. It is so hard, so unfair, but I know I just have to keep moving forward. I’m very thankful to be married to such a strong man. I would fall to pieces every second of the day if it were not for him.

That’s all for tonight. Time to cuddle up to my little boo and kiss that sweet, bald head of his for the millionth time today. He is our Christmas miracle, and he is the sweetest Christmas gift I have ever received. He is teaching us so many lessons along the way.

Love you all. Hope your holidays were so very, very blessed.

xoxo

HOPE.LOVE.FAITH

Tomorrow is a big day. Huge.  I should be sleeping….but I am so nervous I can’t. We check in to Sloan at 9:30 and Ronan will his anesthesia, they will do bone aspirations on the front and back of him, and then the CT Scan. Please continue to pray and send great thoughts his way. I KNOW the scans are going to come back with amazing results. I have faith that what we are doing is working and Ronan is so strong; he is going to beat this disease and we will never look back.

Tonight, I took a look at my family and stepped back a bit. I know this is my blog and I sit here and talk about how hard this is on me….. but I hope you all know that I know this is hard on our entire family. Sometimes I feel selfish for going on and on about me…. but to talk about how badly this is hurting everyone is too much for me. It is evident that everyone is hurting and suffering from this. It breaks my heart to watch my family have to go through this and see how scared and sad they are. Everyone puts on such a brave face but as I sit back and watch certain situations and observe… it’s like a slap in the face. I wish I could take away everyone’s pain and sadness. I would give anything to just have my 3 boys, home with Woody and I, under the same roof with everyone healthy. I am hurting; but there are so many other people who are hurting too. I am trying my best to be a good wife, mom, daughter, friend, etc….. Sometimes I don’t know which direction to turn and it is all overwhelming. I’ve been doing a lot of talking to Quinn; I miss Liam who has been staying with Mimi and Papa. I HATE that because of this disease, my 3 little guys can’t be together like they used to be. Tonight, I am just sad. But tomorrow, I will be brave.

 

I love you all. A special I love you tonight to one of my favorites, Liz. You know why; and you are the truest of the true. Please pray extra hard tonight and tomorrow for our little Rockstar. I will update you when I know something. Thank you all.

Feathers, Glitter, and all things Sparkly

 

 

 

Today was a very productive day. My sweet, dear, Fernanda stopped by for a coffee drop off and a visit. She went over my “To do” list with me and helped me decide how to tackle it. We also talked about our little project we have in the works… she has an amazing business mind. More on that when we are further on down the road. Let’s just say the two of us, when Ronan is well, are going to change the world and make the most amazing things come out of this. It is a good, heathy distraction for me right now; something I am very excited about and I am so honored to have Fernanda by my side ❤ It’s so amazing to me, how you know someone through the years, and then something like this happens and your relationship either truly blossoms or bottoms out. Out of this, I have found a very special friendship that had always existed, I just never knew it until now.

After Fernanda left, one of our angels who writes on my blog a lot, but I have never met before, came over to help me out with some things. My new friend, Rita, came and did the mounds of paper work that has been looming over my head like a dark cloud. It took her around 3 hours and I am so grateful for her and her organization skills. There is no way I was going to be able to tackle that project this week. My mind is all out of whack and paperwork is something that has become totally overwhelming to me. Thank you so much, R. You saved my life today:) And Ronan loved having you here! I can’t believe how openly he welcomed you into our home. I am very thankful for that.

I cleaned out our pantry, caught up on all of our laundry, paid some bills, and cleaned and organized all of Ronan’s toys. If I leave here with things like that not being done…. I will drive myself crazy thinking about it. Stupid OCD. I will feel so much better going to New York and knowing that everything is organized and put away where it is supposed to be.

Ronan was a happy little boy today. He did a lot of playing by himself while I got things done. He snuggled up in my arms and we took a good nap together. Snuggling with him is one of my favorite things in the world. He fits so perfectly in my arms. Liam and Quinn came home from school and spent it playing with Ronan. I am trying to let them soak up their time with him as much as possible. They are such good big brothers. I am so excited to spend Christmas with them in New York. I have not done a thing as far as Christmas shopping goes this year. All of the gifts, cards, “stuff,” just seems so meaningless. Woody came home all excited about the gift he has gotten for me and I didn’t mean to burst his bubble, but I told him I didn’t want anything. That is not true; the only thing I want this year is the best doctor in the world operating on my baby. And he already got me that. I couldn’t ask for more at this point. I know I am going to have to get some things for Liam and Quinn, but I think I’ll leave that up to Woody. I can’t focus on stuff like that this year. One of my most favorite things about Christmas is sending out our annual Holiday Card. Not happening this year. Makes me sad; but I’ve got bigger fish to fry. I’ll send you all one on my blog, how bout that;) Think of all the trees I’ll be saving!!

We have a pretty good plan in place for New York. Woody, my in-laws, the twins, The Kotaliks, My mom, my oldest friend, Sandy, whom I have known since I was 5, and Tricia will be coming in and out. Trish and my mom will be with me on my birthday<3 So happy about that. I’ve got a few tricks up my sleeve as I always do as far as ways we will celebrate once Ronan’s surgery is successful. One of them involves glitter… and lots of it. I’m obsessed with anything sparkly and glittery and I used to be a very fun girl. I’ve been thinking of ways we can celebrate and make this milestone something to remember in a very positive, fun way. Trish and I went shopping for hats to wear in New York and I bought a silly feather white feather headband to wear on New Year‘s Eve. Who cares if we’ll be at the Ronald McDonald house…. we will still have sparkles, glitter, and feathers galore. This is our journey and I cannot wait to say goodbye to 2010. Remember how I told you about “Earmuffs??” Or maybe stop reading here….. You know what I’m going to say to 2010?? Adios Mother Fucker! Worst year of my life. 2011 is going to be all about getting Ronan better and healthy.

I heard “Iris” by The Goo Goo Dolls on Pandora tonight. It made me think of Ronan. Cheers to you, baby boy.
And I’d give up forever to touch you
Cause I know that you feel me somehow
You’re the closest to heaven that I’ll ever be
And I don’t want to go home right now

And all I can taste is this moment
And all I can breathe is your life
Cause sooner or later it’s over
I just don’t want to miss you tonight

And I don’t want the world to see me
Cause I don’t think that they’d understand
When everything’s made to be broken
I just want you to know who I am

And you can’t fight the tears that ain’t coming
Or the moment of truth in your lies
When everything seems like the movies
Yeah you bleed just to know your alive

And I don’t want the world to see me
Cause I don’t think that they’d understand
When everything’s made to be broken
I just want you to know who I am

I don’t want the world to see me
Cause I don’t think that they’d understand
When everything’s made to be broken
I just want you to know who I am

I just want you to know who I am
I just want you to know who I am
I just want you to know who I am
I just want you to know who I am

P.S.  I totally heart Neil Young and  Johnny Cash. They bring me peace and sing us to sleep every night. Goodnight to all of you beautiful souls out there. Wishing you all health, peace, and happiness. Love you ALL. So thankful for all of you and how you are always keeping us in your thoughts and prayers. Ronan is a fighter, there is not a soul out there like him. I PROMISE you, he will get through this. I can feel it in every fiber of my body and soul. And through this journey, I’ve come to find out how true and right my insights are in regards to my life. I BELIEVE.

A picture is worth a thousand words… and a thousand tears

Last night, I took a picture of Ronan, and it took my breath away. He doesn’t even look like the same baby anymore. Cancer has taken over and completely changed his appearance. He is skinny, pale, his eyebrows and eyelashes are gone, his bald head and sunken in eyes are heart wrenching. After I looked at the picture, I immediately went into my room and started to cry. Woody came in after me and I said to him, “Is he dying?” Woody immediately grabbed me and told me to knock it off, that although his appearance is changing, his spirits are not. He was so happy and active yesterday. He ran around all day telling us all how happy he was and how much he loved us all. He played a lot of football and is still eating a ton. He did get sick in the middle of the night last night. This is a huge reason of why I have him sleeping in bed with me. I never know when something like this will happen and the last thing I want is my baby boy to be alone in his bed, scared, and not having me right there to take care of him. He was upset, but after I got him and everything cleaned up he told me thank you and went back to sleep. His manners have become so beautiful. Everything is thank you, you’re welcome, bless you, or his favorite; thank you so much. It is adorable. My favorite is when he says to me, “I love you, so much. I love you the most.” He tells me that a lot. The “I hate you’s” have become less and less. His temper tantrums seem to be settling down as well.

We have a busy week ahead. I’ve got so much to get done before we leave for New York. I said to Woody, “How in the world am I going to pack for over a month in New York?” Luckily, we’ll have a washer and dryer, so that will help. But it’s still a lot to wrap your head around. Woody has been trying to talk me into a Christmas Tree and doing lights on the house. I told him no way. I just want to deal with Christmas when we get to New York and soak it all up then. We will make is special for Liam and Quinn but a tree this year seems pointless. Talk about doing it up in New York…. I’ll be there for Christmas, my 9 year anniversary, New Years Eve, and my birthday. Ronan’s surgery is all set for January 7th now. I am ready to get this show on the road and this freaking tumor out of his abdomen.

It was great having my mom and Jim here. They were so helpful and I am glad I was feeling better and didn’t freak out on my mom like last time. It was good for her to see that I am “feeling better.” Whatever that means. I think it means my medication is working. I feel more balanced and stable I guess. The boys’ loved having Jim here. They did a lot of playing and laughing. It was good for everybody…. I only wish they could have stayed a few more days so they could have spent a little more time with Ronan outside of the hospital. I am trying to talk my mom into coming to New York for a few days to spend it with us. I really hope she will.

I hope you are all having a great weekend. I think of you all often and thank you again for all of your love and support. Enjoy your Sunday and count your blessings!!

xoxo

Magic Medicine….Round 5, Day 4

Whooo hoooo!!! Time for the Ronan’s done with Round 5 Happy Dance!!  Everybody, stop reading, and get up and do it!! Yay Baby!! He will be coming home this afternoon. Yesterday, he was sick to his stomach again and had a pretty hard day. At one point he looked up at me and had little tears sliding down his cheeks and goes, ” I just want to go home. I miss Quinn, Liam, Daddy, Nana, Papa Jim, Mimi, Papa Charlie, and Santa Claus.” Ahhhh! I wanted to snatch him up and carry him out right then and there. Instead, Woody came around 4:30 and pretty much forced me to leave the hospital. I was kicked out by my own husband who knew I needed a break. I came home and slept and showered and woke back up around 6. I was beat. Mimi and Papa came and relieved Woody and stayed the night with Ronan. Thank you for that. As soon as I was up, I headed out to see what my mom, Jim and the boys were up to and I started going through the mail. There was a huge box by my door and I saw that it was from the clothing company, Fore!! Axel & Hudson. I set it on my counter and my mom and I opened it up. OHMYGOSH! Denise, if you are reading this- I don’t even know what to say. When you said you were putting together a box for Ronan, I expected a few things! Not your entire line and ALL of your hats! My mom and I were dying and just kept pulling more and more things out of the box. Ronan is going to be the most stylish little cancer patient ever! Thank you so much! Not to mention they sent a check to help with our trip to New York. I hope one day, I get to meet all of you behind all of this so Ronan and I can give you a big hug. You are going to make his day when he comes home and see’s all of his new, adorable clothes and hats. Don’t even get me started on the quality of the clothing. So beautiful and soft. You will forever be my favorite little boys line and I hope to throw a ton of business your way. Your hearts are amazing. So THANK YOU THANK YOU THANK YOU. I want to try to call you today to tell you thank you on the phone. I had no idea my one little email would turn into something so amazing. And if any of you reading this are on Facebook or Twitter…. go find their page, and become a fan or follow them. They did a great little write up about Ronan.

Last night, I hung out with the twins, my parents, and Woody. We watched the ASU vs U of A game. Nice work, DEVILS!!  The boys’ were in heaven and set up a “party” in their room which consisted of drinking Coke (OMG at 7:00 at night) and popcorn. It was too cute so I let it slide. I snuck out around 8:30 and walked to my friend Niki’s house for a little couch time. It’s my favorite couch in the world. Her husband, Mark, was home as well so we sat and talked for about an hour, then Woody came down to join us. Cheers to the 4 of us being together! It was a very nice, cozy evening with dear friends. Just what I needed.

I’ve got to go and get ready and head over to the hospital. We are bringing Ronan home today. Yay for that. Love you all. Fore!!! Axel and Hudson… You are going to help me change the world and the way it ignores childhood cancer. Thank you again!! xoxo

Welcome to hell

Can I even blog about today/tonight? I don’t know. It was that horrific. And I don’t mean to sound like a whiney baby… because it takes a lot to break me. But if I have to hear one more fucking “beep, beep” from the machine Ronan is hooked up too, and then wait 10 minutes for the nurses to fix it I’m going to crack. I’ve learned how to fix it myself. If I have to watch “Finding Nemo” on the lame T.V. one more time, I am going to crack. If I have to listen to Ronan yell and scream and hit me all day, I am going to crack. If I have to listen to our roomates blasting “Telemundo” one more night, I am going to punch someone. If I have to stand up and hold Ronan for 2 hours, because he won’t let me sit down, I am going to crack. If I have to have him stay up all night because he naps so much during the day, I am going to crack. I have just spent the past 6 hours in hell. He has been yelling, hitting, throwing things, and there is nothing I can do about it. Anybody who knows me, knows that I am one of the calmest people on the planet. But I am about to break. I have no idea how I am not huddled up in a dark corner somewhere, sobbing hysterically. I’m sure I’ll be there soon enough. I cannot take another day/night like a today but I have no choice because I am his mother. I find myself saying things in my head like, “How did I get here, this can’t be happening,  this cannot be my life.” But it is and I can’t escape it no matter how hard I try. Tonight, I seriously texted Woody and told him to please check me into a mental ward. How much can one person take? How much more of this before I seriously do go insane? I thought I was strong… but now I’m not so sure. This is all way too much on days like today. I want my loving, sweet, happy, baby boy back. I can’t take the anger and pain within him that he does not know how to deal with besides take it out on me. I cannot take not seeing Liam, Quinn, and Woody. I am completely alone in this and I know that. I am alone with my thoughts, feelings, pain, sadness because nobody can save me except myself. I am fighting and I am fighting hard, but nothing is easy. I cannot even find the strength to eat or sleep. Food has lost all appeal to me, I live off of coffee and water and gum. I ate lunch today for the first time in a few days and then threw it up later after having Ronan attack me for an hour. Too many details?? Sorry. It’s the truth and the truth hurts. I don’t want pity or sadness from anybody. I just want you to know what it is like to live the life of being the mother to a child who has cancer. I want this story to have an effect on people everywhere because NOBODY should have to go through this hell. Science and medicine are waaaaay too advanced to still be dealing with this bullshit. Where is all the funding for childhood cancer? Where is all the awareness? No child should should have to feel this pain and suffering. I will never understand why Ronan was chosen. I don’t care if the outcome is amazing when he does beat this. My child will just have walked from hell and back, and I right there with him, holding his hand and never letting go. So, is this heartbreaking enough? I hope so. Because something has to be done. I never get to look at Ronan anymore and feel happy and carefree. I now look at my son and see his innocence taken away and the anger in his eyes. The pain I feel from this I cannot even put into words. I will survive this. I have to survive this. Ronan knows I will never give up on him… he can hurt me over and over and I will take it because I have no choice.

This is all I can write tonight. I see a dark corner calling my name. Sweet dreams <3<3

Pink: One foot wrong

Am I sweating?

Or are these tears on my face?

Should I be hungry?

I can’t remember the last time that I ate.

Call someone

I need a friend to talk me down

But one foot wrong

And I’m gonna fall

Somebody gets it

Somebody gets it

Put one foot wrong

And I’m gonna fall

Somebody gets it

Somebody gets it

All the lights are on

But I’m in the dark

Who’s gonna find me

Who’s gonna find me?

Just one foot wrong

You’ll have to love me

When I’m gone.

Does anyone see this?

Lucky me

I guess I’m the chosen one

Color and madness

First in line I put my money down

Some freedom

Is the tiniest cell it’s hell

But one foot wrong

And I’m gonna fall

Somebody gets it

Somebody gets it

Put one foot wrong

And I’m gonna fall

Somebody gets it

Somebody gets it

All the lights are on

But I’m in the dark

Who’s gonna find me

Who’s gonna find me?

Just one foot wrong

You’ll have to love me

When I’m gone.

Some people find the beauty in all of this

I go straight to the dark side, the abyss

If it’s bad

Is it always my fault?

Or did somebody bring me down?

Or did somebody bring me down?

Did somebody bring me down

One foot wrong

I’m gonna fall

I put one foot wrong

And I’m gonna fall

Put one foot wrong

I’m gonna fall

Somebody gets it

Somebody gets it

Just one foot wrong

All the lights are on

But I’m in the dark

Who’s gonna find me

Who’s gonna find me

Just one foot wrong

You’ll love me

When I’m gone.

Have to love me when I’m gone

Love me when I’m gone

You’ll have to love me when I’m gone

You’ll have to love me when I’m gone

Clinic Day

Ronan and I went off to the clinic this morning to do his usual Monday checks of his blood and platelet levels. Poor little guy is having bad tummy aches from the chemo last week. A lot of diarrhea and him saying his tummy hurts. I talked to “A” about this and she said it is a normal side effect from the chemo and to just watch him. She expects it to last most of the week. If it goes into next week, then we will have to do something about it. As for now, we just have to make sure he is staying hydrated. His counts are dropping, but still look o.k. We will expect them to continue to bottom out until the end of the week, then hopefully they will start to come back up. After the clinic, we went upstairs to meet with Dr. Jan who is one of the psychiatrists at the hospital. We only got to meet with her for about 10 minutes due to Ronan’s tummy hurting and him not wanting to be there. She is trying to help me work on some boundaries with Ronan.

We are still waiting to hear the finalized dates for New York. We should know in the next couple of days. It is going to be here before we know it. I am trying to mentally prepare for everything. As long as I have all my ducks in a row here, I should be fine.

Today, I spoke with Lin Sue Cooney from Channel 12 news. She has been playing phone tag with Woody since last week. They want to do a story on Ronan and our family and asked if they could come to our house to shoot tomorrow early evening. It was very last minute, but I am not going to turn down that opportunity. I will let you all know when it is going to air when I find out. I am assuming they will have to edit, etc…. Either way, I am honored. Channel 12 is the only local news channel I watch. Watch out world, this is just the beginning! Little Ronan is going to bring so much light and hope to this disease…. he will be the poster child for it. We have to find a cure. Everyday I hear of more and more babies not surviving. It is gut wrenching to read about and rips me to pieces. I try to stay away from stories like that, but it’s like a bad car accident…. sometimes you just have to look. As much as I try not to, it is a horrific reality check for me and keeps me focused on what we need to do to keep Ronan kicking cancer’s ass.

Tonight we played a lot of baseball outside. Ro has been running around like mad. There is no stopping my little guy. He runs circles around his 7-year-old brothers. I’ve never in my life seen a child like him before. He is so strong willed and determined. I dream about the day that he can just be carefree and happy and not have to live the life of going back and fourth to and from the hospital.

My sweet friend, Jules, brought over dinner tonight and it is always a treat to see her. We tried to catch up for a bit but it was busy around here with homework being done and Ronan wanting attention. We sat and ate dinner as a family, watched a little football, and Ronan fell asleep around 8:30. He didn’t nap today so he was tired tonight. After he fell asleep, I ran to the grocery store so I actually have food in my house. Ronan has been quite upset that there has been a lack of string cheese around here. We are all stocked up for a while. It’s amazing how much food 3 little guys go through. I seriously need to buy stock in Gatorade.

My friend, Gay, is coming over tomorrow to help me get ready for our channel 12 news story. She is going to help me put away all of our Halloween decorations and things like that. That women is a force to be reckoned with. I am SO lucky to have her as a friend. I hope someday after all of this is over to take a big trip with my very special girls to celebrate them and all they have done for me. A girls trip will definitely be in order and way overdue. We have so many plans for when we are done and over with this bullshit. So much of it is just going to consist of being together as much as possible and enjoying every little second of being healthy and free. Our lives will forever be changed, but we are going to change them for the better. This won’t get the best of our family<3 Nobody can take that away from us.

Last Friday night I went down to my beautiful friend and neighbor, Niki’s for a few cocktails and girl time. Tricia and Jen joined us too and I cannot tell you how good it felt to just be with them. We sat, talked, laughed, cried, and laughed some more. I swear this is the first time I have really laughed in months.  And I mean, laughed so hard that you can’t breathe and your stomach aches and hurts. It felt so good to feel something other than pain. I know I am surrounded by amazing friends when they can get me to feel that way and to just let everything go, even if it is just for a few hours. To my Niki, Tricia,and Jen…. thank you for being the beautiful souls that you are and the sisters I was meant to have. You have no idea how much that night meant to me. The only thing missing was our Lindsey and Marisa. ❤ ❤ I thought about them the whole night though and it felt like they were there in spirit. I love you all.

To all of you keeping up with Ronan and this blog, I think about you everyday and I am so thankful that you are touched by his story. It is going to be a long journey but it is going to be worth the ride. Sweet dreams, friends. Be thankful for what you have, who you are, and all the blessings you have in your life. You never know when something could take it all away<3<3 I pray that none of you ever have to experience what we are going through… we will walk this walk for you and hope you take the lessons along the way.