Tag: raw

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

If you haven’t cried, your eyes can’t be beautiful

Today, my soul is crushed. I can’t take losing another friend while going through all of this. Especially this friend. I love her too much. But I hurt her feelings, and her feelings are valid. I just hope she understands that my actions are not my own. I did not intentionally mean to hurt her, leave her out, or break her trust. Yes, I may blog and write about all the fabulous dinners and lunches and things I am doing with my friends. But these things are not as fabulous as they sound. Most of the things I do happen very last minute, and it is usually very close girlfriends who are banging on my front door to drag me out of the house. Sometimes, I have a nice time, and sometimes it is all I can do to force a meal down my throat without crying the entire time. Trust me; my life is not as glamourous as it sounds. I am just very lucky to have the girlfriends I do to try to take my mind off what my world is now. To this friend; and you know who you are; bottom line is I love you and I refuse to lose you. I don’t care about any of the things that you think are important to me. They are not. You are. So please, hear me out and don’t walk away from this or me. I’ve also said it before and I’ll say it again…. It is very hard to be my friend right now and I get that. But you never need an invitation to come and see me or go to the lunches or dinners I do. Your invitation is always waiting with open arms. Just call me. Text me. Invite yourself. I would never say no. I am proud to have you as my friend and in my life. Please don’t leave me. I know this is not too much for you too handle, because I know the type of girl you are. I need you, I love you, and I’m sorry. I have known you for over half of my life and I will make this right because I know your heart is true. One of the most beautiful qualities of true friendship is to understand and to be understood.

I wrote that earlier today, while Ronan was napping. My friend called me and we talked, cried, and expressed how we are both feeling. We were adults about it and worked it out. That is what true friendship is about. She is not willing to say peace out and neither am I. We are both learning important lessons along the way and growing. Our friendship hit a little bump in the road, but that is also the ultimate test. It is something we both know that we can fix because she loves me as much as I love her.

I hate days like today. I hate days where I can’t stop the tears. I’m supposed to be stronger and this is supposed to be getting easier. I think I’ve cried more tears in the past few months then I have in my entire life. I know, I know, I know…. positive thinking, everything is going to be o.k. I tell myself these things a hundred times a day. Ronan asks why I am sad and I say, “I’m just sad that you are sick. I don’t want you to be sick.” He looks at me with his big blue eyes, wraps his arms around me and says, “I don’t want to be sick either.” Then he holds me and lets me cry. He is so wise for being only 3 and just looking into his eyes, I know he is going to be fine. I just hurt for all he is going to have to go through to get to that point. I hurt for a million different reasons…. are you all tired of my whining yet?? Debbie Downer is here to stay for a while and I get that you all may not want to listen to it over and over…… I am in the process of getting a new website built and I will focus one blog on just Ronan, and one on my feelings and what I am going through. I get that everyone does not want to hear the things I am feeling all of the time. It’s not much fun to read. But I started this blog and I’m not going to stop writing how I feel. If anything, maybe I’ll help another family who is going through something like this know that they are not alone. I know their pain all too well.

Today, my friends Niki, Heidi and Christy stopped by just to say hello and catch up. Ronan sat on the couch with me and fell asleep while they were here. It was good to spend some time with them. My dear Christy also took the Claude necklace that she gave me to get fixed. It has been through some rough times and the back was falling off. I wear that thing whenever Ronan has anything done. I rub it and talk to it a lot. Sounds silly, but it works for me. My other friend, Gay, came by to pack up my Halloween stuff. Ronan was tickled to see her. She sat and played with him for an hour and he giggled the entire time. You can tell she is a mom of 3 boys; Ronan adores her. After she left, Ronan took a good nap and let me hold him. I think he knew I was having a rough day so he didn’t put up a fight about it like he normally does about napping. He woke up demanding to go to the grocery store and pitched a fit when I told him we couldn’t. Too many germs out there right now that I don’t want to expose him to. He wouldn’t give up on it and the madness went on for a good hour. He is so stubborn and when he wants something, there is no talking him out of it. As soon as Liam and Quinn came home, I took them all to get shaved ice to try and get Ronan to forget about the grocery store. Worked like a charm and he was happy as a clam. I then went to pick up my dry cleaning and got to see my favorite friend, Halle<3 She is my dry cleaning lady and about the sweetest person on the planet. She always puts a smile on my face:)

Ronan is hitting bottom. His energy is zapped and I can tell his levels are dropping. We go to the clinic tomorrow so we will see where is numbers are. He does not often sit still and watch T.V. and that is what he did today. Today has been a quiet day for him and he has been very needy. I know it is because his “Magic Medicine” is doing it’s job and killing the cancer. It is a very good thing that he is responding the way he is to all of this. We need him to get sick before he can get better.

My mama

I had a good talk with my mama today. I know I don’t mention her on this blog often enough and I’m not sure why. Every source of strength, hard work, compassion, and love that I have inside me as a person, I got from my mom. You want to know why and how I am such a good mom? It’s because of her. She raised me to always make the best of things, always give people the benefit of the doubt, and that your family comes first. She is the hardest working woman who never asks for a thing; but is always there to help others. I picture her in my head at least a few times a day, working in her butt off in her cafe, all while supporting us and what we are going through by talking about us, thinking about us, and loving us. She eats breathes and sleeps for my brother and I; and for her Grandbabies. I couldn’t ask for a better mom and it breaks my heart that she is there and I am here; especially when I can tell in her voice that she wants nothing more to be a daily part of being here and helping in any way she can. When I am having a hard day, or I am feeling sorry for myself, I often think of my mom and how strong she is. It helps me to pick myself back up and move on while thinking about all of the positive things that are surrounding us right now. I wouldn’t be who I am today if it weren’t for my mom. I cannot wait until the summer when Ronan is in remission and we can do what we do every summer which is spend some time in Washington with my family. It is one of the things my boys look forward to most in life. Our summers in Washington are magical, innocent, and pure. There is nothing like watching the simplicity that comes from my boys spending time with my mom and Jim.

My mom knows that sometimes I am not so good with words and expressing how I feel to her, but I feel like after going through this, it is becoming easier for me. My mom also knows when I don’t have the words; not to ask or push me. She knows when the I need her most, I will ask. She is silently walking through this with me and respecting my boundaries which is something that I really need right now. So even though I don’t say it enough; I love my mom very much and am thankful for her everyday of my life.

Today was a quiet day around here. I swear I went into a sleep coma for about 3 hours. It was a combo of staying up way too late last night and being wiped out from the hospital. I feel like I got caught up on a little sleep which is always nice. We spent the rest of the day watching football and playing outside. I even went for about a 4 mile run. It was so cool and perfect out tonight and I am happy that running is finding it’s way back into my heart. It was just what I needed tonight. Ronan has been running around like crazy, wrestling with his brothers and just enjoying being a 3 year old. I spent about an hour on the top bunk of Liam’s bed tonight just reading to all 3 of my boys. Then Quinn read a couple of books to us. It was priceless and some very special time together that we all needed. Ronan seems to be feeling well but I know next week is going to be when his levels drop. He is usually wiped out after day 13 of being done with his chemo treatments. Today is day only day 6. They say the chemo hits them the hardest 7-14 days from the time you start it. We go to the clinic Monday and Thursday and I will be keeping a close eye on him. Hopefully we won’t have another bloody nose disaster.

I hope you all have a blessed weekend full of laughter and love. Squeeze your babes extra tight<3 Goodnight, friends.

Magic Medicine, Day 3 Round 4

Headphones on: check. Music blaring: check. Baby sleeping: check. Tears out of the way for today: check. Today, was overall a good day. Ronan slept in until 9 which is very unusual, but he had a rough night. From about 2-4 he was up and throwing a tantrum. He kept throwing himself on the cold floor, insisting he was hot, and he was mad that he was “hooked up” to all of his medicine. He would not let me touch him, hold him, and kept screaming for me to leave. Finally, he fell back asleep. Mimi and Papa came around 9:30 so I could run home and sleep/shower. The sleep part never happened, but it felt nice to be home for a while. I also got to see Liam and Quinn for about 5 minutes which was a treat. I miss my boys. I came back to PCH and played the rest of the afternoon/evening with Ronan. Trish came by to bring me a coffee and say hello. Ronan was not happy to have her here at first. By the time she left though, he was yelling to her as she walked out the door, “Love you! Thanks for coming! See ya later, alligator!” It was the cutest thing. The “thanks for coming” part melted my heart. The nurses were all cracking up standing outside the door listening to him say his goodbyes. He doesn’t talk much around here, so they got a big kick out of hearing him yell all of those things to Trish. I was going to take Ronan downstairs to meet Mimi as she was dropping off some things to us. I asked the nurse to make sure it was o.k. and I got a big fat NO. Apparently, if you are hooked up to chemo, you have to stay on your floor and I guess they have gotten pretty strict about enforcing those rules. As soon as I told Ronan he couldn’t go downstairs with me, it was meltdown city. We were in the hallway and he started screaming, hitting, and crying. I had about 5 nurses run out to see what the commotion was. This lasted about 20 minutes and finally he calmed down and fell asleep in my arms. His little meltdowns always make me cry. I hate that he does not have the words to express what he is feeling.

New York is right around the corner. I’m anxious to get it out of the way. I am excited to go… I couldn’t think of a better place to spend a month, even if it is under the circumstances we are dealing with. I have the best friends and family who will be flying out to help me out and to give me a break. I cannot wait to meet Dr. Kusher and La Qualia…just to be in the presence of such amazing Doctors makes me feel so thankful that we are fortunate enough to have Ronan in the best hands.

I am hoping that Ronan stays asleep tonight for the rest of the night. We were told today that we will be able to go home tomorrow around 9:00 p.m. Yay for that. We will start Round 5, November 22. I can’t believe how all of this is flying right by. Please keep a special little girl in your prayers tonight. Her name is Mia. A few weeks ago, Auntie Karen and I were walking Ronan around downstairs, and a man chased us down and asked if this was Ronan. He said he recognized him from my blog that he follows. His little girl, Mia, is here now completing another brain surgery. I spoke with her mom on the phone tonight and it sounds like everything went well. She needs lots of prayers and love send her way too. So many kids do. Our roommate, who I will just call, S, went home today. I missed it and I am so sad that I didn’t get to say goodbye. Mimi was here and told me that the dad was anything but nice. After listening to the way the dad was talking to his son (who he hasn’t seen in over a week) Mim went over and told the dad how proud he should be of his little boy, how polite and well-mannered he was. The dad replied with some snarky comment about how he doesn’t seen that side of him. UGH. I would like to punch that guy in the face. That little boy could not have been any sweeter. It makes me sick to think that he dad does not appreciate how amazing of a little guy he has. The poor kid has been here alone the entire time and never once complained about a thing. I am going to keep him in my prayers for the rest of my life. We have a new roommate now. He is 19 and seems really nice. He is quiet which is always a bonus.

My sweet Charisma rocking a Rockstar Ronan bracelet. And seriously, could she be any more gorgeous? Love her. Email us at rockstarronan@gmail.com if you want one. They are 5 bucks. She is wearing the “nice” one which says, “Rockstar Ronan” “Our little hero”…. I also have a “naughty” version which says something not so nice about cancer….”F*cK You Cancer.” I rock the not so nice version. Alright.. seriously going to try my best to get some rest now, while Ronan is resting. Whooohoooo for almost being done with Round 4! Only 2 more rounds of chemo to go!!!! Goodnight to all of you beautiful people out there. Please spread the word about Ronan and childhood cancer in general. Together, we can make a difference!

P.S. 96,874…. as of today… this is the number of blog views I’ve had. AMAZING! I am stunned that so many people are taking the time to read Ronan’s story. Thank you to each and every one of you! xoxo

Truest intentions, purest of hearts

I need to get my shit together today. My house looks like a bomb went off in it, I can’t stop crying, and I think I just picked my nightgown up off the floor and beat the crap out of my bedroom wall with it. Don’t worry. Ronan didn’t see this… he was playing in the other room. He did hold me though, while I cried in his lap. He patted my head and held me. I needed to let some things go today, and I did. Everyday is so different from the next. I never know waking up what the day will consist of, how I will feel, or how Ronan is going to act. The inconsistency in my life makes me nervous and anxious. Today, I have had a pit in my stomach the entire day and I can’t seem to get rid of it. The reality that surrounds us is overwhelming at times. Thank god for good friends who I can call on. My friend, Gay, called me right when I needed her most. My friend, Pamela White (who has been a GODSEND) let me vent and gave me advice…. Little Jack’s mom, Laurie, always puts me at ease. Just hearing her voice and the updates on Jackers helps me get though the days. To people who are walking to the end of the earth and back for us, to the people who refuse to let go of my hand, to the people bringing dinners and helping with Liam and Quinn, to the people who know just how to make me smile…. Please know how thankful I am for you. The fact that you are walking though this with us and supporting us so much, means the world to our family. We are so lucky and thankful for all of you. It speaks volumes about the kind of people you are in the way you choose to live your life and I will FOREVER be thankful, humbled, and amazed<3 You all have changed my life and the way I view the beauty of family, friends, and strangers. You have taught me to question everything and accept nothing but the best for me and my family.

Last night I went out for dinner with 3 of my dearest friends. I was able to let go a little bit and live in the moment surrounded by strength and love. I went to the best restaurant in town, Tarbell’s, with my friends, Niki, Jen, and Lindsey. The place was packed, food was amazing as always, and the service was above and beyond. And it has nothing to do with the fact that I was with the bosses wife;) I sat with my 3 darlings, for 3 hours. We shut the place down and I left there feeling extremely blessed to have spent the evening surrounded by those 3 incredible women. They are more than friends to me; they are my sisters. I would trust them with my life and the life of my children. They are the type of friends who would never let me down or let me fall without picking me back up. I need them more than ever at this time in my life. I get that I am asking a lot from my friends right now…. but my true friends, are the one’s I have to ask nothing of; they just give and do because  they have the inner strength to see me through this. Their intentions are true and pure… there is no bullshit or superficialness. I worship them and if the tables were turned, I would be there for them in a heartbeat. They know this of me… they get the bigger picture of all of this.

Once Liam and Quinn got home I put everything that has been going on inside my head, on hold. I made them a snack, took them for shaved ice, and we went outside and played in the backyard for 2 hours. We took every ball in our house and put it in our big, grassy yard and played soccer and dodgeball. Ronan had a BLAST. He ran, kicked and threw his balls for an hour straight. The strength and power that boy has when it comes to anything physical is insane. He is so coordinated and fast. We took a bunch of glow sticks when it got dark and shaped them into frisbees and threw them up in the air and at each other. It was an evening full of laughing and playing. Woody came home, scarfed down some dinner (thanks Jules) and took Liam and Quinn over to The Village for basketball practice. My poor, tired, husband. He worked so hard today.. and I can tell he is exhausted. But he will never let us down or complain about anything. He came home with a smile on his face and a big kiss for me and off to practice they went. Love that man.

I feel like a kept woman with Ronan. Seriously. The little man decides my every move. I’ve got to get some control back with him. My sweet Sarah, whom Ronan LOVES… came over to peel me off my floor today. Ronan threw a fit about having her here. I can’t win. I need help, want help, ask for help…. but Ronan is so territorial of “his house.” He wants nothing to do with visitors and ends up slamming doors and screaming in his room the entire time someone is here. And Sarah is like family to us. He let her stay for a little bit after I bribed him with a toy and we played Star Wars with him. Sarah took over with the playing and I was able to get a few things done around here. Then we “locked” Sarah in the laundry room (that was the only way he would let her stay) so she could fold my laundry. Sarah the Saint. She has been so helpful to me and I know she would do whatever I needed her to, if Ronan would just relax a little. I have a list a mile long of things I need to get done before we check into the hospital for Round 4 of chemo on Monday. Tomorrow, we go to the clinic and I am hoping to help in Liam and Quinn’s classroom for their Halloween party. That leaves me Friday to get everything done. The weekends are usually pretty busy around here and I don’t want to spend my time getting caught up when I could be spending it with my boys.

So tired tonight… but one last thought….All of his kisses mean that much more. Every smile, laugh, hug, I love you, that come from Ronan, wash away all of the sadness and anger that I feel… for a few moments. It doesn’t last long, but it is oh so sweet.

“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” -Dr Seuss (Thanks Dana)

A breath of fresh air

I spent today enjoying everything to the fullest. Woody and I made a big breakfast together for the boys, Mimi and Papa; who came over to take Liam and Quinn to get their flu shots. I ran some errands alone which was nice. I then met Woody over at The Village to watch Liam and Quinn’s basketball game which was the highlight of my week. Danielle, her amazing boyfriend, Dave, and Trish came to watch as well. It was such a great game and I found myself laughing and cheering the entire time. The twins played awesome… it was like a switch flipped and all of a sudden they get it. They were hustling up and down the court, throwing great passes, guarding their guys, they each made a basket and played with the most heart that I have ever seen them play with. I was grinning ear to ear watching them and seeing how much fun they were having. The most beautiful sight that I have seen in a long time. I loved sitting with my sweet friends too and hearing them laugh and cheer right a long with me. Liam and Quinn were so excited to have an audience<3 I wish I would have recorded it all but it will forever be engrained in my brain. There is nothing like watching your kids flourish at something they love. My heart is sooooo happy today. I feel like a whole new person…. well, maybe more like the older version of myself;  someone that I love and miss so very much.

After the basketball game, Trish and I went to Chestnut Lane for some lunch and girl talk. There is nothing like time with my bestie. It was nice to catch her up on some things that have been going on and to get to talk about our Marisa who just had her sweet baby boy, Max. I am so excited to see her and meet the newest little member of our inner circle. I am going to try to go to the hospital tomorrow to check in on them and to give Marisa the big hug that I have been saving for her. I’ve been missing her so much. Trish and I ran a couple of errands over at the mall and then we parted ways. It felt good to be out today, with her by my side. I even managed not to be bothered by being out in public. I am feeling stronger than I have in a very long time. I’m chalking it up to a very big weight being lifted off of my shoulders and the fact that Woody and I have really been enjoying each other lately. I have been missing spending time with him, doing all the little things that we used to do. Even just cooking breakfast together this morning was so therapeutic.

Tonight Mimi, Woody, and I all made a big turkey dinner together at our house. The boys played board games with Papa while we got everything ready. Ronan was pretty tired but ran around the entire night. He didn’t nap today so he finally fell asleep around 8. His energy amazes me. He had a few tantrums today…. I hate seeing him so angry. I know that anger is usually a secondary emotion so I am wondering what the first one is that he is feeling…. could be fear, or even pain. I hope he is not hurting physically and that is what is causing him to be so mad. I ask him all the time if he is hurting and he always tells me no. He has such a high tolerance for pain though so I can’t always trust what he says. I just pray that his little body is not hurting… that would break my heart. He is going through enough with everything and if he is feeling any of this, well, I don’t even have words to express how that would make me feel. All I can do is pray, watch him, and take the best care of him that I possibly can.

I am going to curl up with Woody and watch Saturday Night Live in a bit. Auntie Karen’s close friends daughter, Emma Stone, is hosting tonight. (GO EMMA!!!)You all should watch if you stay up that late. She is such a talented little thing and I love watching her in movies. She was amazing in “Zombieland.” One of my favorites:)

I hope you all have a beautiful weekend full of love and thankfulness. It is easy to get caught up in things that are not worth our time or energy, but it is even easier to just let some things go and live a life full of being true to ourselves. I know days like today are not going to come along very often for me for a while. I am going to have more bad days than good; which is a huge reason why I will forever cherish and remember today. The feeling of complete happiness is so easily taken for granted, but so easy to achieve when you know what really matters most in life.

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. ❤

Angels waiting in the wings

I am amazed at the people who have come out of the woodwork to help us. People that we know and complete strangers just because they are touched by Ronan’s story. I put something out into the universe today… and I am getting amazing responses. People who are willing to go above and beyond to help us any way they can. It is people like this that the world needs more of. Selfless people who stand by their word and pour all the energy they have into helping out people like us. I’ll never look at the human spirit the same again.

All has been pretty quiet around here. Ronan is still storming right a long. He had a few fits today….bouts of anger and hitting me for no reason. Well, I guess he had a reason…. his reason. He was that angry that Liam and Quinn were not home. He likes to take it out on me and when his little temper hits, I bear the brunt of it. Not fun to see or watch. He’s like Dr. Jekyll and Mr. Hyde. I never know what his moods are going to be like. I am doing my best to discipline him but sometimes nothing works and I’ve come to find out I just have to let him let his anger out. He’s got to be angry about a lot and I know he is having a hard time processing what he is feeling. It’s heartbreaking. I keep telling him that we will get through this and he will get better. He talks all the time about getting his “Iron Man” out. I don’t blame the kid.

We go to the clinic in the morning and then Mimi Kay and Kathy are going to watch Ronan so I can get some things done. It will be nice to get out of the house and take a break from Ronan. I am meeting my friends Jen, Bethany, and Trish for lunch and to go over some things for Ronan. I am so lucky to have girlfriends who are willing to drop whatever to see me and work on some ongoing projects with me. All of their support has been keeping me going.

I can’t believe the holidays are right around the corner. It’s my favorite time of year to live here. I am hoping to take Ronan to a pumpkin patch this week or next. We will of course talk Liam and Quinn as well. Last year we lived at the pumpkin patches and I took all of the boys half a dozen times. We are a pretty active family and I love taking my 3 little guys off for adventures. It’s been awhile since we’ve done anything like that. Ronan seems to be feeling just fine so a pumpkin picking we will go.

I’m still trying to find my balance and where my life fits into all of this. Before this happened, my life consisted of a daily routine of healthy outlets. I’ve let all of those things go and can’t seem to get back into them. I miss my workouts, running, hiking, boot camp, etc…. Any time I have free from Ronan, I find myself feeling guilty. I feel like I need to be with him 24 hours a day. I know that’s not realistic or heathy, but time away from him feels selfish to me. I know I need a break and I am going to try to start doing some things again. To be quite honest, I feel like if I put myself back out there, there world is just going to swallow me whole. It’s that whole anxiety thing that I’m now dealing with I guess. I feel safer trapped inside my little bubble with my little guy by my side. It is something I will continue to struggle with but I will also continue to work on. There has got to be a happy medium somewhere… it’s just going to take work to find my new comfort zone.

It’s 3:10 in the morning now. I’ve been up off and on all night long. I finally feel like I am tired enough to sleep a few hours. Thanks for reading this, thinking of us, and praying for our family. Love to you all<3 Goodnight, friends.

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