Tag: Home

The silence scares me because it screams the truth

A week. It’s been a week of sharing a room. Hospital beds. Hospital clothes. Hospital T.V. Hospital seconds/minutes/days/nights. Hospital tears. Hospital depression. Being home last night for the entire night with my twins felt so good that it hurt. I took them to breakfast this morning and we looked just like the perfect little family. Just another mom with her sons’ on a gorgeous Sunday morning, happy, smiling, laughing. Nobody in the restaurant knew the reality of my life. They didn’t know that soon my horse-drawn carriage was about to turn into a pumpkin. They didn’t know about the 3-year-old that I have with cancer who was waiting in his hospital bed for his mom to return. That’s my reality everyday and nobody knows the pain and sadness that comes with it. It hits me hard during times like this… when I get a second of my sweet life back and then have it ripped away from me once again. I fucking hate hospitals. I fucking hate RSV season. I fucking hate cancer and all the time it is stealing away from my family life. How lovely that I was able to go home last night and spend 30 minutes with my husband and try to act normal the way a husband and a wife do, but then that turns into him saying to me while looking at an old picture of our 3 boys… “I just keep thinking, did he have cancer then? Fuck. How long has he had this?” That in turn makes me cry and I get to sit and stare into my husbands eyes as he watches me cry because some days are harder than others. Today is one of those days. Do you know why my little 7-year-old who was exhausted from the days events stayed up until midnight  with me last night insisting we finish watching “Talladega Nights?”  He told me he didn’t want to go to sleep because he didn’t want the time with me to end. I couldn’t agree more and he is so right in the way he is feeling. Just pile that on top of the things that are ripping my heart out at the moment and smashing it on the floor.

Today, I couldn’t pull my shit together and had to have my friend, Gay, come and sit with Ronan so I could get out of the hospital for an hour and cry my freaking eyes out. The tears wouldn’t stop pouring and I thought getting out of the hospital would help; but it didn’t. It’s was one of those day. Bloody, bloody, Sunday.  Sarah the Saint stayed with Liam and Quinn all day today so I could come back to the hospital and Woody could go to the office and work for the entire day. Ronan has been a handful with a lot of energy, but is still not wanting to leave his room. He keeps talking about going home and wants to know why he can’t because he says he is all better. I try my hardest to explain things to him as simply as possible but he doesn’t get it. None of this makes sense to him and it shouldn’t.

We still have our baby roommate, with no parents in sight. The nurses have been working non-stop tending to him. The second they try to put him in his crib, he starts to cry and will not stop. Poor thing. All he wants is to be held. Makes me sick to my stomach. Reminds me to be thankful. Thankful. Thankful. Thankful. Things could be so much worse. Ronan’s counts were still around 50 today. The same as yesterday. They have got to be higher tomorrow… I don’t expect a major jump, but in the low 100’s would be nice. We just want to go home. We have isolation coming up soon and this is cutting into our time with Liam, Quinn, and Woody.

I’m being rotten tonight and I know it. Time for a positive attitude adjustment. I feel better after my day of tears. Guess I just needed to clear my head and let some things out. I’m going to snuggle up with Ro now and do my favorite nighttime activity which is to watch him sleep and wonder what that sweet little soul is dreaming about. I hope only beautiful things. G’nite dear angels out there. Thank you Sarah and Gay for your help today. I don’t know what I would do without you two. Love you.

xoxo

My friend, Sandra, is one bad-ass MoFo <3

I’m dedicating my post to my new hero tonight, Sandra Foutz. I’ve talked about her little girl, Mia, several times on my blog. She is fighting brain cancer and I met her husband at PCH when he ran me down because he recognized Ronan from this blog. I’ve become good friends with Matt and Sandra; they are an amazing family. When this all happened to Ronan, I begged Woody to let me shave my head. I begged Liam and Quinn and ultimately I didn’t do it, because just talking about it to the twins upset them. I had to make the right call… they are 7 and are scared enough. They are just now starting to pick up on the whole being different thing and I guess a mommy with a shaved head was too much for them. I respected that, but my inner badass so wanted to do it. I did not; but Sandra did. Her husband, Matt just sent me a picture of her and I started bawling. She looks so beautiful and I can see the strength in her eyes. Sandra, you are amazing and Mia is so lucky to have you as her mom. I am going to keep this picture of you on my phone and look at it every time I am feeling weak and sorry for myself. You are my hero and I love you.

Ronan’s ANC counts jumped from 30 yesterday, to 200 today. That is great news and looks like we are getting out of here tomorrow. Keeping my fingers crossed… they want his ANC at 250 before we can leave and I am expecting that Ronan’s counts will be much higher tomorrow. I guess we were meant to be here this week. Ronan had another bloody nose and I spent from 7 this morning until about 10 a.m. pinching it. They transfused him again with platelets and that got it to stop. I ran home to shower and rest a little bit. Mimi stayed with Ronan for me. My friend, Niki, came and took me out into the world today to run errands. It was a good thing; I really needed her company. We ran into A.J.’s for a couple of things…. I about had a breakdown in there. I couldn’t focus on what I needed to get, felt like I was in a fog, and couldn’t think straight. I think I scared Niki…. it’s hard for her to watch me struggle. That’s how big her heart is. She was patient with me and helped me through it. We also ran to get pedicures together which was such a treat. I’m going to miss her so much when I’m gone:( I’m going to miss a lot of people. I’m looking at New York as though I am there to do a job. I know when we get there I will be o.k. I will be focused, determined, and strong. There is no time for being weak; it’s show time and it’s time to get this tumor out of my baby.

I am trying not to worry about our plane situation too much. I am leaving it in Woody’s hands and I have faith that things will fall into place. Woody is supposed to call Mr. W tomorrow to let him know we have the green light on being discharged, for sure. Praying that it all works out. I was having so much anxiety here tonight that I spent an hour and a half organizing our little room, disinfecting anything I could… even the floors, bed, and couch. You know you’re going crazy when doing things like that calms you. It is the only thing that gives me a feeling of control. I felt an instant sense of calm and relief when I was finished. Ronan sat and helped me and cleaned all of  his Star Wars guys. Then he insisted on throwing them all across the room for me for 30 minutes and basically played fetch with me because he is all hooked up and cannot get them himself. The things we do as mom’s:) I was happy to do it for him though; anything to make the time pass by a little more quickly. Ronan spent the rest of the  night tonight up to all of his old tricks. Bouncing off the walls, causing trouble, being sassy… all which tells me he is feeling great. One of his favorite nurses, Arica, was here and he spent a lot of the night giggling and laughing with her. She is sooooo great with him and he adores her. I am going to miss the nurses here so much. They are angels and I have such respect for the job they do; it is such a hard one but they do it so well. We are going to miss our favorite male nurse too, Danny. Love him. He is really great with Ronan. We will be excited to get back to them in January.

I’m am going to try and cuddle up with my little bug; despite the loudness of our room tonight. Oh, what I wouldn’t give for a private room! G’nite to you all. Please keep us all in your thoughts and prayers so we can get this show on the road and get to NYC already! Hugs and kisses to you all.

P.S. A very Happy Birthday wish to my dearest, sweetest, dolly, LIZ!! Happy 21st my LOVE! I hope you had a beautiful birthday and can’t wait to spend time with you in NYC!!

And P.P.S. To my new NYC friend, Macy!! I can’t wait to meet you. Thanks for being so helpful and sweet, even though we are strangers! So glad you reached out to me on here and so glad to have a friend in New York. Love it even more that you are an Alumni Sundevil! Our friendship was so meant to be!

LIZ AND RO

Overwhelmed, Insomnia, Anxiety and more

I’m overwhelmed. What do I want to do when I’m overwhelmed? Go into hiding; hence the ignoring phone calls, blog, texts, facebook, etc…. Sorry to those have been calling and I’ve been MIA. I was so ready to leave for New York today. SO READY. I don’t know how much more of this anticipation/anxiety I can take. I told you all I am a die hard plan queen. When things don’t work out; I become an instant anxiety ridden freak. This is me now. Also, hating the fact that we are just sitting in the freaking hospital, when Ronan has not had a fever now for 2 days, but they still insist on keeping him on these fucking antibiotics even all the blood cultures are coming back negative for any kind of infection. I know, I know, better safe than sorry. I just don’t like my baby having to get more medicine than he needs; and especially when he does not need it. It’s hospital rules, I get it. But my inner rule breaker just wants to take him off all of this crap and take him home. We also need his ANC to come back up; hopefully his numbers will be even better tomorrow.

Woody is working on getting the plane situation figured out. I feel bad for Mr. W…. he is trying his best to work it out for us; but time is money, people. Woody is supposed to call him on Wednesday to give him the for sure word on when we can leave. The doctors have been going back and forth on it. Sooner rather than later please. Mimi and Papa have been coming to relive me during the day; and I do the night shift. It helps so much. Except for the fact that I miss my twins like CRAZY. I’ll never stop resenting the fact that I don’t get to be around them very much anymore. Thank GOD for Woody. He wins the best dad of the year award, hands down. He is giving me the best gift ever just because I know that Liam and Quinn are in the best hands, with the best dad in the world.

I don’t have much more to say tonight except thank you to everyone who has been checking in, dropping of meals (Kati- thank you so much for last week and tonight) I wish I could give you all a big hug. We are hanging in there, we will get to New York sooner or later. I just keep telling myself everything happens for a reason. Even though I have come to despise that stupid saying because there is no reason that my baby should have cancer.

G’nite to all of you beautiful people out there. Sweet dreams.

xoxo

P.S. Because I don’t have a lot to say tonight; mainly because I’m scared of the thoughts in my head; I’m going to leave you with an email from my precious Susie who lives in Colorado. She was in town over the weekend and got to spend some much needed time with us at the hospital. It was the first time I have seen her since Ro’s diagnoses. It meant the world to me. We had the best time, talking, laughing, hugging, and crying. I miss her so much and she will always be like a sister to me. She is so great about reminding me of how strong I am and that I can do this. A piece of my heart will always be with her no matter the distance between us. I love you JYD.

Hi Mama- 

I just wanted to send you a quick note to tell you how much this morning meant to me.  You are absolutely the strongest woman I know.  Seeing you at the hospital with Ronan was pretty fucking intense.  Although I’ve been hearing about everything from the beginning and have been reading about it everyday since, nothing could have prepared me for seeing you two in that setting.  It was scary and very real.  Ronan is a darling angel and I hated seeing him stuck in that bed. With that being said, you are doing EVERYTHING you need to in order to kick this shit and that is apparent even from hundreds of miles away.  I know that very soon things will be back to normal.  Maybe not before you briefly glimpse hell (during isolation for 30 days amongst other hurdles) but very soon nonetheless.  I love you so much Maya.  You are a wonderful mama and your love alone can conquer all of this.  It has to because I said so and I’m the JYD mother fucker!
Stay strong and know that I think about you EVERY SINGLE DAY.
All my love,
Suz

Magic Medicine… Round 4, Day 3

I slept in my own bed last night. Woke up around 3 a.m. though…. couldn’t sleep. Saw that my dear CC was up on Twitter, so, we text messaged for a while back and forth. She couldn’t sleep either. Just shows how connected we are. I finally fell back asleep around 4 a.m. and slept until 7 a.m. That felt nice. I got Liam and Quinn up and ready for school and I got ready to go to my therapist appointment. For those of you who have been asking who I am seeing, and I haven’t been answering… I’m sorry. I asked her today if it was o.k. to give out her name and she said it was. Her name is Sarah Matheson and there is a link to her on the right side of this blog. She is amazing at her job and comes highly recommend. I heart her.

After our session, I went home to pick up my parents who arrived from Washington State today. It was great to see them and they were both anxious to get over to the hospital to see Ronan. I packed up what I needed for the night and off we went. Mimi Kay and Papa were here with Ronan and they stepped out to give us some space. Ronan was so happy to see his Nana and Papa. This is the first time that my step-dad has seen Ronan and he was trying so hard to be brave. He did great for the first few minutes, but then I noticed him with his back turned away from us and I could see the tears pouring out of his eyes. I wanted to die right then and there. I wanted to sit and cry with him, but I gave him the space and time he needed to feel what he was feeling. Broke my heart though. My step-dad, means the world to me and he loves my boys, so much. They are his entire world. I hate this. I hate that he is hurting because Ronan is hurting. I would give anything for this to be me and not Ronan. My mom and Jim will be here until Saturday and Ronan is upset that he can’t go home to be with them. I hate that Jim had to see Ronan in the hospital, all hooked up to things and acting and looking so quiet and frail. This is not the way Ro looks at home. Once again, it’s our reality and pain is a big part of it. Ronan is so pissed that he can’t go home that I went into the bathroom for 30 seconds to wash my hands and I came back and he had untwisted one of the lines that he is getting fluids from. The fluids were pouring out everywhere and I said, “Why did you do that?” He looked up at me and goes, “Because I’m going home.” Little devil. I turned off the machine and called in our nurse to redo everything. What a little smarty pants. I have not clue how he knew just what to do to take off his line. He is too smart for his own good. I’ve known this about him since the day he was born. He’s always had that look in his eye like he knows so much more than we all do.

He has done well with this round of chemo. Seems a little tired and his spirits are a little low. But expected.. kind of fits the gloomy hospital setting. He of course misses his home and brothers. Makes me so sad for him. I try to do my best to keep him happy, entertained, and things fun for him. But try watching your 3-year-old be depressed; it’s not easy. Today, he doesn’t want to go to the playroom or anything. I also think his stomach is not feeling well. He threw up a little today… this dose of chemo really hits them hard with the nausea. He is on round the clock anti-nausea meds…. but I can tell he is still not feeling well.

Woody is going to come back here tonight and bring my mom, Jim, Liam and Quinn. That will make him so happy. Hoping for a peaceful night with him and that these next few days pass quickly so we can get back home.

All around me are familiar faces
worn out places, worn out faces
Bright and early for the daily races
Going nowhere, going nowhere
Their tears are filling up their glasses
No expression, no expression
Hide my head I wanna drown my sorrow
No tomorrow, no tomorrow

And I find it kind of funny
I find it kind of sad
The dreams in which I’m dying
Are the best I’ve ever had
I find it hard to tell you
I find it hard to take
When people run in circles
It’s a very very, mad world, mad world

Children waiting for the day they feel good
Happy Birthday, Happy Birthday
And I feel the way that every child should
Sit and listen, sit and listen
Went to school and I was very nervous
No one knew me, no one knew me
Hello teacher tell me what’s my lesson
Look right through me, look right through me

And I find it kind of funny
I find it kind of sad
The dreams in which I’m dying
Are the best I’ve ever had
I find it hard to tell you
I find it hard to take
When people run in circles
It’s a very very, mad world, mad world
Enlarge your world, mad world

What am I doing?? Not sleeping.

UGH. I should be sleeping. I can feel myself getting tired. I tried to sleep. I really did. I cuddled up with Ronan and he was sooooo snuggly. He soon fell asleep. I did not. As soon as I started to drift off, the nurses started coming in and out. Checking his fluids, blood pressure, giving him his anti-nausea meds, and they finally started the chemo around 1:00 a.m. This means we will be here until Saturday now. I’m not complaining. I’m not going to have a breakdown like last time. I am seriously thankful that we are moving ahead. I am thankful that he is strong enough to start round 5. One more round after this, which we will do in New York City, and Ronan will be finished with all of his chemo. I think it is going to be bittersweet. I have learned to depend on the chemo just for the fact that I know it is killing his cancer. Being off of it seems a bit scary to me. All of the unknown of all of this is scary. I just have to remember deep breaths and one day at a time. This baby is so precious to me. I guess I have such a strong bond with him because he is my last baby. Even though I would have 10 more if Woody would let me;) Kidding, but I do love being a mommy and having babies. I think it is the greatest gift on earth and I am so proud to be the mommy to 3 amazing boys.

I am a little freaked out by something. Maybe not freaked out, but I don’t know how to explain it…. So I’ll just tell you. Every summer, when I am in Washington I take my journals home with me and write my heart out. I write about things we are doing, funny things the boys have said or done, what I am feeling, etc….. I take my time in Washington and just purify my soul. It is very slow paced there, very peaceful, very quiet and I have a lot of time to reflect on things. A few weeks ago, I remembered something I had written in one of my journals while I was in Washington and I couldn’t remember if it was real or not. I went and dug it out and sure enough, in my writing, there it was. I remember waking up in the middle of the night, grabbing my journal, and scribbling down, “This is going to be the hardest year of your life. If you can make it through this, you can make it through anything.” I’ve been thinking about this non-stop now, since I went and re-read it. It is freaking me out. How in the world did I have such a strong feeling about something that it caused me to wake up in the middle of the night and write it down. I don’t know what possessed me to write such a thing, but it was written in early August. Ronan was diagnosed August 12. I never thought this would be what I was up against. But it is… and I’m not sure what this all means; but somehow I knew it was fucking coming. And I know I have to fight my hardest and pour everything I have into Ronan, Woody, Liam and Quinn. Ronan will beat this, we will survive this as a family, and we will win. We will have a positive story to tell after all of this is said and done. Ronan is the strongest little boy out there, and I know if anyone can beat this, it is him. He is fighting everyday and will never stop. I, as his mommy, will never stop. The outcome of this will be beautiful and life changing. It just has to be.

2 a.m. O.K. Really going to try to get some rest. Thanks for listening to me, thank you for being my outlet. G’nite, again<3

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.

“I soooo happy, mama”

Last night, we were able to leave the hospital. Ronan was fast asleep in his hospital bed and about 10:30 p.m. the nurse came into the room and said we could leave. I gathered up our things, managed to carry our bag, Ronan’s blankets, and pick up my baby boy and carry him to the car. He woke up just as we were waiting for the elevator, wrapped his arms around me and said, “I soooo happy, mama. I love you soooo much. I sooooo proud of you.” The tears welled up in my eyes and I felt like my heart was going to explode. It is things like that, that make all the bad parts of what we are going through, disappear.

Today, I am so thankful for so many different things, big and small. I am thankful that I have such a strong mother-in-law. Anyone who knows my mother-in-law, knows what an amazing person she is. But it is her strength as she is standing by our side through all of this that makes me love her, adore her, and look up to her more than I could have possibly imagined. I think she is possibly the strongest women I have ever met in my entire life.

I am thankful for my all of my dear friends. My Niki, who loves to leave me long voicemails, pouring her heart out to me. The fact that after a 5 minute phone conversation she can tell by the sound of my voice if I am having a weak moment or if I am doing o.k. And if she can tell that I am not doing well, she’ll call me back up to leave me a message or listen to me vent, cry, or not even talk at all. My Tricia, who is flying to NYC just to hold my hand through this. Who knows what it means to be a real friend, even in such an awful situation. She fills me with encouragement, hope and love. For the phone conversation I had with my Susie today, who doesn’t live here but because of our friendship and bond, it doesn’t make a difference in the love we have for each other. She is so understanding, supportive and knows just how to make me laugh when I need it most. My dear Kotalik family. They too will be in NYC with us and they have no idea how much that means to me. We are going to need all of the love and support we can get out there.

I am thankful for my strong husband, who refuses to give up this fight. Who questions the doctors every move, decision, and treatment option. For my amazing, strong twin boys. Their smiles and giggles light up my world. The way they treat Ronan, love Ronan, and take care of Ronan. They are so brave and beautiful. I love to see the way Ronan lights up as soon as they walk into a room. The bond the 3 of them have is like nothing I’ve ever seen before. Their souls are connected and it will forever stay that way.

I am thankful for an amazing lady named Dr. Adams. She is the doctor who is in charge of Ronan’s stem cell transplant and when we met with her yesterday, we were prepared for a fight with the things we are requesting for Ronan and how we are questioning everything. She could not have been more compassionate, loving, and open minded. She listened, stated her opinions without being too overbearing, and agreed to listen to what Dr. Kushner from Sloan Kettering had to say regarding Ronan’s stem cell harvest. I know from listening to her and looking into her eyes, that she wants nothing but best for Ronan. She is amazingly brilliant and it is so nice to completely trust someone with the life of your son. I trust her 110%. She has poured her entire life into something she believes in and is passionate about. I will forever have the utmost respect and love for her.

I am thankful for the little things too. The fact that we have a house, food on the table, and the means to get Ronan the best treatment possible. Thank god for insurance. I am thankful that tonight I am going to go out to enjoy my husband and friends to the fullest. After this past week in the hospital, I really need some time with Woody. Everyday, I find myself humbled and thankful for pretty much everything in my life. Some things are new, some are old, but all are important. The thing I am thankful for most though is another day looking into Ronan’s big blue eyes and another night sleeping with him snuggled up beside me. He is such a precious gift to our family. We as a family will never be ungrateful for the petty things in life again. Ronan has put everything in perspective. What a big job for such a little boy.

P.S. Some have you have asked what we are going to NYC for. We are going there to have Dr. La Qualia, from Sloan Kettering, resect the tumor that is in Ronan’s abdomen. He is one of the  very top doctors at doing this and has been given the nickname of “The surgeon of the Angels.” They say he has a gift; a magic touch. We only want the very best operating on Ronan. He is our best shot at saving our baby and getting all of the Neuroblastoma out of his body. He knows what he is doing, knows what to look for, and has been recommended by everyone we have talked to. So NYC, here we come. <3<3<3

Have a beautiful weekend my beautiful 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

TGIF!

It’s the weekend! So excited to spend it with my little family. Today was a typical day for us. Big boys went to school and Woo went to work. That left Ro and I home alone. We spent the day enjoying playing outside, carved a pumpkin, and I took him to the drive through car wash that he loves to go to. He was really giggling and laughing when we were getting our car washed. He loves to watch the colored soap spray all over the windows. It was cheap entertainment and a nice little break from being stuck at home. He took a nap and I worked on some things for his website. It’s been fun doing the research on it and figuring out what I want it to look like. It’s been a good distraction for me to say the least. I talked to my friend Laurie today for a bit to get caught up on Baby Jack… the little boy who is a few months ahead of Ronan with his treatment for Neuroblastoma. She sounded so great and Jackers is doing amazing. I am always amazed at her strength and positivity. She is a good role model for me and Jack is such an inspiration. They are an amazing family and so deserve all the good things that are coming their way.

Liam and Quinn came home with their “report cards” from school today and they were so excited to show me. They both ripped them open and we went over what they said. I could not have been more proud of them. They are becoming such little men. We played outside and waited for Woody to come home. Woody and Uncle Jay came home around 4:00 with pizzas and beer. They stopped at A.J.’s and brought home a bunch of things for “Game Night” at the Thompsons. They started a game of  Risk with Liam and Quinn about 3 hours ago. I kept Ronan busy so they could play and it is still going on. Ronan had a nosebleed tonight so I tended to him and after about 20 minutes, it finally stopped. I was praying that we wouldn’t have to go to the hospital. Hoping it won’t start up again in the middle of the night. I know his platelets are starting to dip down but I think if I can keep him sleeping, he should be fine. He had a rowdy day.. lots of running and playing.

Not sure what else this weekend has in store. Liam and Quinn have a basketball game tomorrow but we won’t be taking Ronan. Now that it is turning into that time of year when the flu hits, etc…. we won’t be taking him out at all. Time to put him back in his bubble. I am going to have to get very creative as far as keeping him busy at home. Thinking some paint supplies and lots of arts and crafts are in our very near future. We have been working a lot on his school stuff and he is still fighting me on it a little bit; but I know he is learning. I hear him repeating things when he is playing and he thinks I am not listening. Stubborn little boy.

I’m going to have to say that my husband has been extra amazing lately. If that is even possible. I have no idea how he does all he does. I am so impressed by the way he is handling everything. Keeping his law firm going, being such an amazing daddy, and doting on me 24/7. If anyone is carrying the weight of the world on their shoulders, it is him. I am so thankful to be married to such a strong man who can take care of his family. There is nobody in the world who I respect and love more then him. After all that we are going through, he has kept the best attitude and positivity. He really is one of a kind and I will forever stay madly in love with him. I am thankful that my 3 boys have such a strong male role model in their lives. I know how important that is in forming what type of men they will grow up to be. Thanks Daddy Woo<3

Throughout this journey I have come to see things in such a different light. Life will never be the same again for us, but I honestly think it can be better. I have such a new appreciation for the littlest things. It is a life full of nothing but pureness and simplicity. It’s like we have been given a new chance to soak up all the things we do have and enjoy them to the fullest. Life is too short to be unhappy or worry about petty things. We are making the most of what we have, right now, in this very moment. There is no point in worrying about the future because it is the here and now that matters most. A hard lesson to learn, but a beautiful lesson indeed.

I am going to leave you with a quote that I came across today when I was doing my website research for Ronan. <3<3<3 LoveLoveLove<3<3<3

Be who you are and say what you feel, because those who mind don’t matter and those who matter don’t mind.  ~Dr. Seuss