Treasure each day, because you don’t know how many you’re going to be given

There was a reason we didn’t start chemo this week. It was because we needed to be together this Thanksgiving as a family. It truly was one of the best Thanksgivings I’ve had in my life. Woody and I started off the day by making a big breakfast for the boys’ and Uncle Ron came over to join us. I then headed out for a good 5 mile run. It was fabulous. The sun was shining, people were out and about, and it made me feel so happy. I came home, showered and got the boys’ ready to head over to the Kotalik’s for our Thanksgiving feast. Karen, of course outdid herself. The food was to die for and the company could not have been better. I am so lucky to call them family. We spent a lot of time outside playing football and basketball. Ronan was entertained by Karen’s youngest daughter, Olivia, who is such a doll with Ronan. She adores him and is so good to him. It was sweet to watch. I got to spend some time with Liz, who I call my soul sister. She is almost 21, and is a huge part of my heart. We sat and caught up for a long time. She will be coming to New York as well and is so excited. I am so lucky and blessed to have the Kotaliks… Mimi Kay has the best friends.

We took the time on our drive over today and each said what we were thankful for. I said I was thankful for this moment in time, for my boys and Woody, and our amazing support system.Woody said he was thankful for being together and how proud he is of Liam, Quinn, and Ronan who are growing up to be such amazing boys. Quinn was thankful for our family. Liam was thankful for Christmas to be the next holiday and for each other. Ronan was thankful for Star Wars:) So cute.

Liam and Quinn are in a Fantasy Football league this year and as of now, they are the number one team. If they win, they win 600 dollars. Craziness! Tonight, we were talking about what they would do with the money if they won and Quinn goes, “Maybe we could donate it to Ronan’s Foundation.” I wanted to melt on the floor right then and there. He is so thoughtful and kind. What a big thing for a 7-year-old to think of. It made me so proud of him.

I am thankful for so many things everyday. I still get sad about what we are going through; but we are getting through this one day at a time and counting our blessings. We finding so many little things that make our lives happy. I am trying my hardest to stay positive and I mostly get sad for Ronan, Liam, and Quinn. It’s hard to watch your babies worlds change at such a fast pace. You can’t ignore the pain in their eyes…. but we have a lot of talks about our feelings and I think that helps. I talked to Quinn tonight about what he is scared about. He said he was scared that he was going to get cancer too. I assured him that he will not, and neither will Liam. In the back of my mind, I was thinking, what do I know…. if it can happen to Ronan, it can happen to anyone. He felt better after I promised him he was not going to get it. I know he sits and thinks about these things and it’s my job to fish it out of him so we can talk about it. I feel like I’m doing a good job with that and so is Woody. I can’t do this alone. I thought for a long time that I could and it was easy to try to tackle everything by myself. But I missed my best friend too much. I need Woody and I need us to be a team. We are again; and things have gotten so much easier. I couldn’t ask for a better man to go through this with. Once again, I am beyond blessed.

I’ve been thinking all day about all the beautiful things in our life. The fact that we have 3 boys is a miracle in itself. Those 3 boys, are everything to us. I am thankful that after being with Wood for 11 years that he is still my best friend and the man I love. Some people never know that feeling. I am thankful that Woody still looks at me like the 21 year old girl he met 11 years ago. He still loves and adores me and treats me like I am his princess. I am thankful that we are still each others true loves. I am so thankful for Woody’s parents and I don’t know how we would manage going through this without them. I am thankful for all of my family. There is not a day that goes by that I don’t miss them. I am thankful for all of my friends. They are the truest and purest souls put on this planet. They would not be in my life if they were not. I know for a fact, that I would not be able to get through this without them. I am thankful for the pure kindness of strangers. I had no idea how beautiful people can really be…. without having agendas. I am thankful for everyday that I get to look into Ronan’s beautiful blue eyes and how he loves to kiss the spot on the back of my neck and I do the same to him. We call it our sugar spot. I love it when he lets me give him “sugar.” The days that he smiles and is happy mean everything to me. His good days make all the bad days go away. I never knew I could love so deeply in my life. I am so full of love for my family that I feel like I could burst.

It is our love that is going to get us through this. This little boy is not going anywhere. When I was running the other night I looked up at the sky and prayed and prayed for Ronan to beat this. He belongs with us forever.

P.S. To my Liz Kotalik. I love you like a sister. I am so proud of you and the amazing woman you have become. Soul sisters forever and ever. My heart belongs to you.

Have I mentioned how much I love music? It feeds my soul. Cheers to The Pretenders tonight. Love you all. Sweet dreams and all the blessings in the world.

Oh, why you look so sad?
Tears are in your eyes
Come on and come to me now
Don’t be ashamed to cry
Let me see you through
‘Cause I’ve seen the dark side too

When the night falls on you
You don’t know what to do
Nothin’ you confess, could make me love you less

I’ll stand by you, I’ll stand by you
Won’t let nobody hurt you
I’ll stand by you

So, if you’re mad, get mad
Don’t hold it all inside
Come on and talk to me now

Hey, what you got to hide?
I get angry too
Well I’m a lot like you

When you’re standing at the crossroads
And don’t know which path to choose
Let me come along
‘Cause even if you’re wrong

I’ll stand by you, I’ll stand by you
Won’t let nobody hurt you
I’ll stand by you

Take me in, into your darkest hour
And I’ll never desert you
I’ll stand by you

And when, when the night falls on you, baby
You’re feelin’ all alone
You won’t be on your own

I’ll stand by you, I’ll stand by you
Won’t let nobody hurt you
I’ll stand by you
Take me in, into your darkest hour
And I’ll never desert you

I’ll stand by you, I’ll stand by you
Won’t let nobody hurt you
I’ll stand by you
Yeah

Won’t let nobody hurt you
I’ll stand by you
I’ll stand by you
Won’t let nobody hurt you

I’ll stand by you
No, no, no, no, no
Take me in, into your darkest hour
And I’ll never desert you
I’ll stand by you
I’ll stand by you

Have you ever looked fear in the face and said I just don’t care?

Ro is still in the hospital due to a low ANC count. His numbers jumped up today, which tells us he is on the up and up, but they still need to get up higher before we can come home. He is in a lot of pain due to developing Mucositis which is a side effect of the chemotherapy. It is kind of like ulcers in the mouth. Although we cannot see it inside his mouth, I can tell they are more along the lines of down his throat. He has not been wanting to eat anything so he is getting nutrition from his broviac line. We won’t be able to go home until he starts eating and everything is healing. It will take his ANC levels to come up to heal the sores. It has been a rough couple of days at the hospital and I needed a break. I called in Auntie Karen tonight so I could sneak out and Woody and Quinn came and relieved her after the ASU game. They are sleeping there tonight. I came home and caught up on laundry and straightening up the house. It feels good to have all of that done. I will have to be back at the hospital early so Woody can run home and meet with a client. It’s one big shuffle, but I am grateful for the break and quiet tonight. Hopefully, Ronan will be feeling better tomorrow and we can bring him home in the next few days. Thanks for keeping him in your thoughts and prayers. It’s hard to see your baby in pain when there is nothing you can do about it.

So, my last little post caused quite a stir in regards to a comment. I don’t want to touch too much on that but I just do want to say that all opinions are welcome here, good and bad. Everyone is entitled to their opinions but nobody is entitled to judge me. Yes, I may get on here and rant and rave about things that I am upset about and how I am feeling, but the reason I do this is because when I am living my new life, I am strong and brave and most of the time nobody even knows when I am breaking down. I only choose to let a few close friends see this side of me. Somedays I have really hard days and yes, Ronan and my twins see me cry, but I am not the kind of mom who is going to hide my feelings from my kids. I grew up in a family that feelings were not really talked about and everything was always “fine.” I hope my boys will grow up knowing that we are a family who shares all of our fears, feelings, and opinions. I don’t want them to ever think it’s not o.k. to express how we are feeling. As far as my “personal relationships” suffering… I really disagree with this. If anything they have gotten stronger. I am working on making them stronger. The people that have bailed out on me and our situation, were never real friends anyway. I have been nothing but honest in the way I am feeling and if they can’t handle it, then they are not meant to be in my life. The people who have had their feelings hurt, know that they can talk to me and we can work it out because they are the people who truly love me. To walk away from me and all of this…. well, I think that speaks for itself.

On a happier note…. I have made some new beautiful friends on this journey. We are in a club all our own and I feel so LUCKY to be part of this club. The fucking cancer sucks club has some of the most beautiful souls I’ve ever met in my life. These people know who they are, and they are family now. I am very thankful to have their shoulders to lean on. And I know they know I am there for them too. To my Laurie tonight. I love you. I love your tears, your honesty, your smile, your Jack, and the friendship that we will have for the rest of our lives. You are the light of my life and one of the brightest stars in the sky<3<3

Pink: If God is a D.J.

I’ve been the girl with her skirt pulled high
Been the outcast never running with mascara eyes
Now I see the world as a candy store
With a cigarette smile, saying things you can’t ignore
Like mummy I love you
Daddy I hate you
Brother I need you
Lover hey, “Fuck you”
I can see everything here with my third eye
Like the blue in the sky

If God is a DJ
Life is a dance floor
Love is the rhythm
You are the music
If God is a DJ
Life is a dance floor
You get what you’re given
It’s all how you use it…

I’ve been the girl with her middle finger in the air
Unaffected by rumors, the truth: i don’t care
So open your mouth and stick out your tongue
You might as well let go you can’t take back what you’ve done
So find a new lifestyle
A reason to smile
Look for Nirvana
Under the strobe lights
Sequins and sex dreams
You whisper to me
There’s no reason to cry…

You take what you get and you get what you give
I say don’t run from yourself, man, that’s no way to live
I’ve got a record in my bag you should give it a spin
Lift your hands in the air so that life can begin

If God is a DJ…If God… say If God is a DJ, Then life is a dance floor so
Get your ass on the dance floor now

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. <3 <3 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. 

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. <3

Knock on wood

Today is day 8. Every time Ronan starts his chemo treatments, his blood levels are supposed to drop after 7-14 days. Which means, less energy, his immune system is low, etc…. Nothing yet. I took him to the clinic yesterday and his blood levels were still good. He has been full of energy and has been running around non-stop. Let’s hope this continues. Woody and I can’t get over him and how great he looks, for being so sick. None of this makes sense at all. I am just taking this as another great sign that Ronan is going to beat this and pray we continue to sail right through this. For dealing with something so difficult, he has been a champion…. not acting like a sick kid at all.

We have been taking advantage of being at home and doing normal things. The boys’ have been playing together non-stop. The love my 3 boys have for one another is so powerful and moving. It’s helping us win this battle. Last night Ronan cuddled up in Quinn’s bed and fell asleep with him. I left him there all night and only got up a few times to check on him. He slept peacefully the whole night through and woke Quinn up around 6:30 this morning to play. Ronan was upset that the boys had to leave for school this morning but I kept him busy. We ran some errands and I even took him into Target. Shhhhh! Don’t tell Woody;) I took him in to grab a few things, the store was empty, and I didn’t let him sit in a shopping cart. Poor kid has been begging me to take him for weeks now. We were very careful and I sanitized his hands about every 5 minutes. It made his day. He just wants to do normal things, like we used to do. So we did<3 And we will continue to do things as “normal” as possible. I am getting used to the looks of pity when we go out into public and Ronan doesn’t want to wear his hat. It doesn’t seem to bother me as much anymore. Heck Ronan doesn’t even care or notice, so why should I??

As of now, Ronan’s surgery is scheduled for the end December. I have a nice little story about the exact date of his surgery. I was telling my new friend, Pam, who has the little girl, Victoria, who is a cancer survivor, when it is going to be. As soon as I told her, she got a little quiet and goes, “Oh my god. That is the date that Victoria’s surgery was.” Same surgeon, Dr. La Qualia and everything. Another one of those good signs that I’ve been seeing during through this entire journey. We both got goosebumps and I got teary eyed. So Christmas in New York it will be:) Just wish it were under different circumstances but we are going to make it the best Christmas ever. As my dear Karen keeps saying, it’s one step closer to Ronan’s wellness.

Our next round of Magic Medicine does not start until November 1st. Until then, if all goes well, we will just be making visits to the clinic twice a week and we will be home the rest of the time. There truly is no place like home. Tonight, we went for a walk down to the our neighbors house. Ronan ran the entire way, only turning back to catch the football we were throwing. We had a great walk with our friends and enjoyed the cooler weather. It was the perfect evening and I was so happy that we were all together as a family.

I fell asleep early tonight, cuddled up to Ronan. Only wish I could sleep the whole night through…. ended up waking up in a panic and now my mind will not be still. Too many unknowns and worries keep me up. How do you sleep when the baby right next to you has cancer?? I woke him up to tell him I love him a few minutes ago. I tell him that 100 times a day. None of this has gotten any easier, but it has become our new way of life. This is not a life I would wish on anyone, but it is our life now and we will make it as happy and beautiful as possible. To be any other way would not be fair to Ronan or the twins. I know how important consistency and security is in a childhood. Especially in little guys who are 7. They will remember most of what we are going through so we have to make sure we make this as positive of an experience as possible.

Woody came home tonight with his hair buzzed super short. So sweet and cute of him to do. Ronan loved it and kept wanting to feel the top of his head. His long eyelashes are starting to go, as well as his eyebrows. His eyelashes are still there, but they are not as thick as they used to be. It just makes him that much more beautiful. Every feature on that child is beyond perfection.

So, if you don’t hear from me this week it’s only because I am taking full advantage of my healthy baby and being home. This week has been spent playing catch up on all the things I am behind on from being at the hospital all last week. It is amazing how far behind I can get on things around here.

Sweet dreams, friends. <3

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.

It will always be Maya and Woody or Woody and Maya

My feelings have been getting hurt a lot over things lately. Things that normally wouldn’t bother me, but they do now. I’ve been struggling with all of these new feelings and have felt guilty  thinking I was being selfish and mean for having them. I now know that these feelings are normal because of what we are going through. I found a guideline today while reading the online handbook. It made me feel as if maybe I am not losing my mind. If anything, I am more in tune with what is the appropriate way to act when handling our situation. Most people do it with such grace and ease…. some not so much. I wish I was more “guy like” and could just brush certain things off. I’m not that way at all. I sit and think about things too much and it is a waste of time and energy. I’ve got to let some things go and spend time on things that are important to me now. I can’t be dealing with other B.S. That’s all I’m saying about that because as I said before, it’s not worth my time and energy. I know what is true and what is not.

Today, I got a call from one of our nurses, “A.” Yes, that is really what she is called. Her real name is something else, but she has been called just “A,” ever since she was about 4 years old. She called to tell me they have set up Ronan’s scans. His first one will be this Thursday and his second one will be next Thursday. My stomach dropped just hearing that they are set up. I know I have been waiting for this but I feel like the not knowing part is almost easier at this point. It’s like I am in a protective bubble and when those scan results come back, it’s going to pop. We are hoping that the results will show that the shrinkage of his tumor  is about 20-25%. We are praying and praying hard. What we are doing has to be working. Ronan will have to be put under with anesthesia both days. I hate that part but I know Dr. Maze will take good care of my little seal. He won’t let anything happen to him so that makes me worry a little less.

Tonight, Woody and I were able to get out for a few hours. We went to meet our friends, Kenny and Stacy Frakes for dinner. As we were walking to AZ88, holding hands… I closed my eyes for just a second, took a deep breath, and pretended that we were on one of our normal weekly dates that we used to have and that none of this was happening to us. It was just Maya and Woody and nothing else mattered or existed. For those 10 seconds, I felt such bliss and happiness. I felt connected with my husband and it felt really good. We met our friends, who we have not been out with on a double date with in a good 5 years. Which is so sad. Another one of those times in your life where you get too busy and always say you are going to meet up and never do. What a waste of years without good company. Kenny and Stacy are the kind of friends where 5 years can go by without seeing them and then 5 years later you meet up and pick right back up where you left off. Woody and I had the best time with them tonight. We got to act like a couple again and enjoy being out with our friends. We talked about everything from Ronan to Bob Dylan. Tonight was an absolute joy in every way. I also love that Kenny and Stacy are not the kind of friends who run away and disappear after something like this happens. If anything, it made them want to see us more because they truly care and love us. We knew them before were married, and have always held them close to our hearts. I am so glad Ken got in touch with Woody and we set something up. It was so healthy for us to do something like that. I actually saw Woody enjoying himself tonight. I have not seen that side of him in 7 weeks. It was beautiful, refreshing, and made me all warm and fuzzy inside. We need to take time to do things like that more often. I was not ready before… but I feel like I am now. Woody and I are the foundation of our family. We have to love, cherish, and take time for each other. We are going to try harder to work on that. This won’t break us or our family.