Month: November 2010

We live in a beautiful world

What a beautiful day. Today was filled with such beauty I almost don’t even know where to start. First, I just want to say that our prayers of finding a private plane to get us to and from New York City have been answered. I can’t believe all of the responses I got today from people who were more than willing to help us out. We can now breathe a big sigh of relief thanks to some very special people. Also, I got a call from somebody that I don’t even know today, whom I am just calling, S. She offered to let our family use their jet to get us to NYC and was so gracious and happy to help. We have decided to go with a bigger corporation, but I just want to say a special thank you to this family for stepping up and offering to help us. They don’t want to be recognized in any way… and that right there speaks volumes about the type of people they are. S, I cannot wait for the day I get to meet you and give you the biggest hug in the world. You are an angel and I will never forget your kindness and generosity that came from the truest place of all; your heart. So, thank you again; You and your family will forever have a special place in my heart.

I spent the day at home with Ronan and I actually got to cook dinner. That in itself was such a treat. I have always loved to cook and I was so excited to spend the day doing so. Ronan helped me add the ingredients to my beef stew; and loved every second of helping me. Woody was so happy to have a meal that I had cooked myself. He even told me he thinks it was one of the best things I have ever made. That made my night. After Wood came home and we sat and had dinner I put on my running shoes and headed out in the dark, cold night. Oh my goodness. I am so happy that running has found it’s way back into my heart. Geez, all it took was my little guy getting cancer. Sad but true. After I ran the NYC marathon a couple of years ago I started up the “I hate running club.” I have been a member of this club ever since completing that marathon. Well, now I am happy to say, I no longer belong to this club. Before all of this, I would have never ran in the dark alone. Now, I don’t care at all. It’s like I have nothing to be afraid of because all of those fears that I had before were so silly. I know what real fear is now and it is so much bigger than running in the dark. I blasted my music, ran so hard and so fast for a good hour. My calves burned, my chest burned, and it felt good. I thought of so many things during my run. I kept telling myself, every time my feet hit the pavement, it was one step closer to getting Ronan well. I pictured so many of my family and friends on Thanksgiving…. and imagined them all being happy and thankful this year. I know you all are going to be thankful for so much more than normal. I am happy to be able to give that gift to you. It makes me happy to think of all of you and all the beauty you have in your lives. It gives me peace. I thought a lot about New York and getting that fucking tumor out of Ronan’s abdomen. I can’t wait to just get it out of him. I am going to ask for it too. Call me crazy, but I want to see that thing. I am obsessed. I hope the doctors will agree; not sure if it’s something they will be o.k. with but I am going to ask. I thought a lot about all of the medication I am on now. I would like to say a big fat thank you for the inventors of Zoloft, Xanex, and Clonazepam. I never thought I would be one of those “people,” but I am and I am not ashamed. I am thankful that about a month after being in all of this, that I knew I needed help when I found myself locked in Ronan’s dark closest rocking back and fourth crying my eyes out. I am thankful that I was brave enough to admit that I needed something to help me get though this. So thank you, Zoloft for keeping me more steady and even keeled. I can now actually go into a grocery store and not flip out. I have not taken the Xanex yet…. saving that for when I really need it. And Mr. Clonazepam. I can finally sleep at night; peacefully. Before Mr. Clonazepam, I was lucky to get 2-3 hours of sleep a night. That in itself was enough to make me crazy. Sleep deprivation can really mess with your mind. I feel a little bit like the old Maya. A girl who used to be crazy strong and could have ruled the world. I need her back to get Ronan through this, and if it takes being on this stuff for a while, then so be it.

Ronan is going to beat this. There is no doubt in my mind. Tonight, he was jumping off of the ladder to Liam and Quinn’s bunk bed onto the ground into a pile of pillows below. And your telling me this kid has stage 4 cancer? It’s crazy to me. Nothing can stop him and his spirit. He must have told me 50 times today how much he loves me. We had a great, fun day together. Tomorrow, we will go to the clinic to have his levels checked. Praying that he can start his chemo tomorrow. It’s time to get this show on the road, people!

Sweet dreams to you all my dear friends. Please never forget how beautiful this life is; even during what seems like the darkest hours. I am so thankful for all of you<3

This is from my sweet friend, Jen… beautiful song and beautiful lyrics. Thanks baby.
Rascal Flatts – I Won’t Let Go Lyrics

It’s like a storm
That cuts a path
It’s breaks your will
It feels like that

You think your lost
But your not lost on your own
Your not alone
I will stand by you
I will help you through
When you’ve done all you can do
If you can’t cope
I will dry your eyes
I will fight your fight
I will hold you tight
And I wont let go

It hurts my heart
To see you cry
I know it’s dark
This part of life
Oh it finds us all
And we’re too small
To stop the rain
Oh but when it rains

I will stand by you
I will help you through
When you’ve done all you can do
And you can’t cope
I will dry your eyes
I will fight your fight
I will hold you tight

And I wont let you fall
Don’t be afraid to fall
I’m right here to catch you
I wont let you down
It wont get you down
Your gonna make it
Yea I know you can make it

Cause I will stand by you
I will help you through
When you’ve done all you can do
And you can’t cope
And I will dry your eyes
I will fight your fight
I will hold you tight
And I wont let go
Oh I’m gonna hold you
And I wont let go
Wont let you go
No I wont

Rainbows and Shooting Stars

Although I was ready to check into the hospital today; I wasn’t really mentally ready. I left my house early this morning feeling overwhelmed with things that I didn’t get to this weekend. The piles of laundry, the bills, the dishes, my unmade bed…. silly things that could have easily waited; but it was still driving me crazy as I rushed out of the house this morning. So, not getting to check in actually turned into a good thing in a way. Ronan and I got to run some errands, I got everything done in the house that needed to be done, I got to spend some time with Liam and Quinn, and I went on a very dark and cold run with my friend Lindsey. Oh, I so needed that run tonight. It felt so good to be out pounding the pavement with my friend. Today was a very, very, good day. Not only was I happy to have another day at home, but Ronan was in one of the best moods that I have seen him in, in a very long time. That made me so happy. I am now caught up on almost everything. My mind is at ease and I will pray that we can start his treatment on Wednesday. I am ready to get cycle 5 over and done with. I could care less that we will be in the hospital on Thanksgiving… I will just be thankful to be with my baby while he gets his “Magic Medicine,” and that we are one step closer to closing the chapter on his chemo treatments.

Last Saturday, Ronan had his first sleepover at Mimi Kay’s since being diagnosed. The twins stayed over as well and it was so nice to have some adult time with Woody. We met our friends, Pam and Larry White for dinner. Can I just tell you, how in love I am with these two people?? They have been through what Woody and I are going through and have come out the other side, stronger than ever. Woody is in love with them too and that says a lot. It was so nice to be out with them and laugh and listen to their words of wisdom. They are full of great advice and are such fun and loving people. Friends for life; forever. I am so thankful for my pediatrician, Lindsey Campbell, for giving me Pam’s number. She has impacted my life in such a positive and healthy way. Her husband is amazing too, which is always a bonus;) I am looking forward to lots of happy and fun times with them in the future.

I cannot believe New York is less than 2 weeks away. I am so thankful for my support system who is coming out so I won’t have to be alone. Woody will still have to be here, working. We don’t have a choice, he has a law firm to run. Thank god for family and friends to help me out. I know I could handle it on my own, but it is always nice to have an extra pair of hands. I’m excited to get out there, get Ronan settled, and make the most of this. He is so excited to go and keeps talking about how he can’t wait to see Santa Claus. Tricia is coming out for about a week before Ronan’s surgery. I am hoping Ronan is feeling well enough that we will be able to let him enjoy all the wonderful things New York has to offer. Well, as much as he’s allowed without exposing him to too many germs. Is that even possible in New York?? We are going to make it possible…. we are going to make this as positive as of an experience as possible. I will do anything just to see my baby happy. He is not going to be happy about being away from Liam and Quinn, but I will get him through it by looking forward to the reunion they are going to have when Liam and Quinn do come to New York. That is going to be a glorious day:)

I am feeling more peaceful today than I have in a long time. I know that can change in an instant but I took today and soaked in Ronan’s happiness and love. It does a mommy good to see him this way. His happiness equals my happiness. Also, we have been having a lot of time as a family and that means so much more than it used to. There is not a day that we have together that I take for granted. So today, I exhaled and kind of just let all of my worries and pain go. I deserved a day like today, without the guilt. I tried to focus on our main objective which is getting Ronan healthy. I have to be stronger for him, I have to keep it together a little better than I have been. Not only does he need me, but Woody and the boys’ do as well. I have a lot of people counting on me and I cannot let them down. I love them all way too much. I know days like today are rare in my life now; but I am still so very thankful that once in a while, they appear. They are about as rare as seeing a shooting star or a rainbow; and when I do get a day like today, a feeling of happiness and peace washes over me like I’ve never felt before. I am thankful that I can still feel some sort of happiness insight of all of the pain.

Hoping for a peaceful night sleep tonight so I am going to snuggle up with my little Boo. Thank you all for keeping up with us and sticking with me even at my weakest moments. I love you all. xoxo

Leaving on a jet plane…..

I haven’t put this out on my blog yet….. mainly because we were not sure of the exact dates of needing to be in NYC for Ronan’s surgery. We have talked to our doctors at PCH, and our doctors at Sloan. They would like us out in NYC by December 4th. Ronan’s surgery is set for December 20th, but they want us out there early to do scans, another stem cell harvest, and to get us acclimated. I have put in a request to a company called Corporate Angels to fly us privately out to NYC. We will not know very last minute if we get a flight or not…. they basically want to be our backup plan and for us to have other options. Getting Ronan to New York safely is so important as far as staying on track for treatment. To expose him to airports, people, a commercial airplane has great risks due to his immune system being so low. If he were to get sick with something, it could throw off everything and delay all of his treatment plans. If any of you know anybody who would be willing to donate a plane, along with fuel…. please contact me. My email is mayawoody@gmail.com. I know this is very last minute notice…. but we just got the dates confirmed. Thank you for any help you can give us…. it is so important to not compromise Ronan’s treatment plan in any way and we feel like getting him to New York on a private plane is our best bet.

As far as chemo week goes…. we didn’t get to start today as planned. His counts are still too low. I will take him back into the clinic on Wednesday and hopefully we will get to start then. Delaying his chemo is not something we are happy about, but pushing him too much is not worth the risk. Please continue to keep him in your thoughts and prayers. He is feeling great and is still a very happy little boy. He is thrilled to have a few more days at home:)

Love to you all!!

I heart Neil Young

I am a child, I’ll last a while.
You can’t conceive
of the pleasure in my smile.
You hold my hand,
rough up my hair,
It’s lots of fun
to have you there.

God gave to you,
now, you give to me,
I’d like to know
what you learned.
The sky is blue
and so is the sea.
What is the color,
when black is burned?
What is the color?

You are a man, you understand.
You pick me up
and you lay me down again.
You make the rules,
you say what’s fair,
It’s lots of fun
to have you there.

God gave to you,
now, you give to me,
I’d like to know
what you learned.
The sky is blue
and so is the sea.
What is the color,
when black is burned?
What is the color?

I am a child, I’ll last a while.
You can’t conceive
of the pleasure in my smile.

Happy Friday!

My Grandpa Jack passed away Tuesday night and I don’t even have the tears to cry about it. He was my favorite Grandpa and I always looked forward to seeing him whenever we went back to Washington. I would take the boys every summer to his house and we would sit and talk to him. When we were there last August, I took Liam and Quinn to visit him in his new nursing home and he didn’t even know who I was. That made me very sad, but now that he is gone, I just feel numb. I am in so much pain from what Ronan is going though, that anything else that comes my way, doesn’t hurt at all. I know if it were not what I am going through right now, I would be crying non-stop and on the first flight to sit with my Dad and Aunt Sheri and the rest of the family at his funeral. I don’t have it in me to be there with them, or to leave Ronan. So to all of my family reading this, please know that I wish I could be there and I love each and everyone of you. RIP Grandpa Jack, so happy you get to be with Grandma Bonnie now.

So, last night I saw via Facebook that my little cousin, Shannon, had a modeling gig going on pretty close to my house. She models for a lot of different things, but the event last night was for a company called “Bella Legs.” You can check out the website here: http://www.bellalegs.com. My cousin, Shannon, has the best legs in the world and is a perfect model for this company. I really wanted to get out and support her so I called up a couple of girlfriends and asked very last minute, if they wanted to go out with me. My two friends, Lindsey and Jocelyn, dropped everything to take me out. You have no idea how much that meant to me. We got to the event and I got to spend some much needed time with Shannon and her Dad, Roy, who I am very close to. It felt so good. Throw in a few Coors Lights, girlfriends, and family…… best night in a very long time. I got to have a nice long talk with Roy, which is always so good for me. He loves me so much and vise versa. We talked about my Grandpa, my Dad, and about Ronan. He knows Ronan is going to be o.k. and kept reassuring me of it. I know this too but it is always nice to be reassured. I ended up meeting the owner of Bella Legs and she couldn’t have been sweeter. I asked her if she ever did charity events and she said absolutely. Cancer, has unfortunately been a part of her life. I gave her my info and she said she would love to put together something for Ronan. I am so excited for this plan to come into action. Two of my favorite things, fashion and Ronan:) After Roy and Shannon left, I got in my girl time with Joss and Linds. Those two make my heart sing and being with them is always a blast. I so needed a night out to relax and little and have some heart to hearts with my friends. It was a night full of fun and beauty.

Ronan is back to being his normal, happy, hyper, self. He has been running around all day and I couldn’t even get him to nap today. I went to Liam and Quinn’s school for their Thanksgiving Day feast. I was so happy to be able to go. It was a little overwhelming… I still don’t do well in big social situations. I found myself taking a lot of deep breaths and trying to focus on my sweet little guys. They were so happy to have me at their school. I don’t get to spend much time there:(

Tomorrow, we go into PCH for a check of Ronan’s kidneys, which is just a precaution. Then we will have his blood levels and ANC counts checked. I can tell his immune system is spiking up just due to the way he looks and is acting. We have to make sure they are high enough to start chemo on Monday though. Here we go again! Trying to mentally prepare for next week in the hospital. I can do this…. if I survived last week, I can survive the week ahead.

Gosh! This post has taken me forever to write! I started it on Wednesday and kept getting sidetracked. Just a combo of being busy and tired. Today, we went to PCH to get Ronan’s labs done. We also had to go over to Nucular Medicine to have a 5 hour GFR test done. It is basically a test that measures Ronan’s kidney function. It is standard protocol when going through chemo. It was a long day though. Ronan’s platelets were very low, so we got a transfusion while we were there. If they don’t come up by Monday, we will have to postpone our chemo week. I think he will end up being o.k. We go to the clinic Monday at 9 a.m. to have his levels checked and if all is well, we will check right into the hospital for our week of chemo. Ronan and I left the house at 7:30 this morning and did not get home until 4. He has been running around all evening, playing with his brothers. His home is his favorite place in the world… I am so happy we get to spend the weekend here.

Happy Friday night to you all. I hope you have a beautiful weekend. xoxo

Home. Tired. Thankful.

Hard morning. As soon as Dr. Wood came into our room, I looked at him and said, “We HAVE to leave today.” He didn’t put up a fight at all, even though Ronan’s ANC levels are still low. I think he heard about our night and saw the pure look of panic and terror in my eyes. Mimi Kay and Papa came to help me pack up our things. I was a wreck. Something happened with our little roommate…. he was taken into surgery this morning and his mother came back up to the room sobbing and crying. The nurses were crying with her and I thought for sure the boy had died or something. I went over and sat with the mom while rubbing her back to try to get her to calm down. She didn’t speak a lick of English. So I sat and cried with her, not even knowing what had happened to her baby boy. The nurses can’t tell me anything, but I heard them say he was now in the Picu (pediatric intensive care unit). In that moment, it didn’t matter that I did not know this lady at all, that she didn’t speak any english…. I totally felt her pain and sadness. I wish I could have made her feel better. I kept trying to tell her it was going to be o.k. I would have given anything to speak spanish so I could have communicated with her. It upset me to see the nurses so upset too. That’s how I really knew something was wrong. I am going to pray for that little boy and his mother tonight and hope they are all right. How scared she must have felt and alone. She had nobody there with her. I am so lucky to always have my friends and family around me when I need them most, even when I think I can do this on my own… I can’t.

After we left PCH I somehow managed to drive myself to my therapist. I think I slept for about 3 hours last night. First I saw the “good doctor.” The one who can prescribe meds. Yup. I’m there now and I have no shame. I talked with him for about an hour and had a good cry. He is a brilliant man who I feel very comfortable with. After seeing “The good doctor.” My therapist squeezed me in for a visit last minute. I had some time to kill before I had my appointment with her so I called up my BFF Marisa to see if I could come for a very overdue visit. I have not seen her since she had baby Max and it has been killing me! I drove to her house and it felt so nice to be there. I stared at little Max in his bassinet and the tears poured. So many things were going through my mind, but most of all how happy I am for Marisa and her new healthy baby boy. It felt so good to give her a hug and spend time with her and her new baby. He is so tiny and sweet. I sat on her couch and she fed me an apple and I held Max and fed him a bottle. I had some time with Gracie girl too who is Ronan’s age. Oh, how I miss being around them. Gracie is a total mini Marisa and is a riot to be around. It was one of the best afternoon’s I’ve had in a long time.

I then ran to see my therapist. Very much needed. I had a lot to talk about and the banter back and fourth between us is a force to be reckoned with. I can be myself and love the fact that I know she is never judging. Love this women. She is helping me with the little baby steps I need.

This is all I can write tonight. Except to say to please keep our friends’ little boy, Jack, in your thoughts tomorrow. He is getting a bunch of his scans done to determine how much of the cancer is gone in his body. I just know it is going to be ALL of it. I have a really good feeling about it. Love you all. Night.

Thanks DD for this tonight. I love you more than words.

Vega 4 Lyrics to Life Is Beautiful :

Life is beautiful
We live until we die

When you run into my arms,
We steal a perfect moment.
Let the monsters see you smile,
Let them see you smiling.

Do I hold you too tightly?
When will the hurt kick in?

Life is beautiful, but it’s complicated.
We barely make it.
We don’t need to understand,
There are miracles, miracles.

Yeah, life is beautiful.
Our hearts, they beat and break.

When you run away from harm,
Will you run back into my arms,
Like you did when you were young?
Will you come back to me?

I will hold you tightly
When the hurting kicks in.

Life is beautiful, but it’s complicated,
we barely make it.
We don’t need to understand,
There are miracles, miracles.

Stand where you are.
We let all these moments pass us by.

It’s amazing where I’m standing,
There’s a lot that we can give.
This is ours just for the moment,
There’s a lot that we can give.

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

Hospital Days and Nights

After a much needed nights sleep in my own bed, I woke up refreshed and ready to face today. I got to the hospital around 8 a.m. so Woody and Quinny could go home. Today, Ronan has been resting a lot. He is still in a lot of pain and is mad at the world. When he is awake, he is throwing things and grabbing his little cheeks. He won’t let me hold him or even come near him. We are pretty much keeping him on continuous pain medicine and that seems to help. His ANC dropped again, from 31 yesterday to 18. They told me yesterday that this could happen. It just means the chemo is doing what it is supposed to be doing, which is wiping his entire immune system out. As much as it sucks, I am thankful because he is responding to the treatment. Some kids do not respond at all and nothing works. The fact that it is kicking his butt, gives me much hope. It’s hard on him to be here and it’s not fair that this is now his life. But this is how it has to be for awhile and I know he is young enough, that when he is older he won’t remember any of this. I on the other hand will never forget. This experience changes my life and the way I view things daily. All that matters is getting him well. I could care less about the things that used to be important to me… they seem so insignificant now. This baby boy is the other half of me. I swear going through this makes me feel like I am pregnant again with him and he is back in the womb. That is how protective I feel of him.

Ronan is still sleeping. He’s been sleeping for about 3 hours now. They gave him Benadryl because of the platelets he received today and that has knocked him out. I hate seeing him so lifeless and tired. That is not my little guy and it breaks my heart. I am hoping he will feel good enough to go to the playroom when he wakes up. I’ve got to get him out of this stupid room. He has been in here since Thursday.

The little tiger finally woke up and played in his bed most of the day. He has been watching a lot of Star Wars and Mickey Mouse. He has also been playing with his Star Wars guys. Thanks Matt for bringing some new guys by… he is in heaven. He hasn’t wanted much to do with me today. He’s been telling me things like, He hates me, he’s telling Santa Clause on me, I can’t go to New York with him, etc….. the list could go on and on. He has been hitting a lot too. Somehow, I’ve kept it calm, cool, and collected. I know he is hurting and is mad about the pain so he takes it out on me. It’s fine, I’m his mama and that’s what I am for. I tried not to be too sad about it today. I just kept focused on him and tending to his every need. He is still awake and playing Star Wars but he is starting to get sleepy. That big nap today has kept him up late tonight. I’m tired and am hoping to get some rest soon. I’m not sure how many more days we are going to have to be here…. all depends on how fast his immune system comes back up. I may as well just move into PCH, we have to be back here all next week for Round 5 of chemo. I can do this…. we are almost done with the chemo part. Seems so weird that it went SO fast.

Time to snuggle up with Ronan. Sweet dreams to you all my dear friends. xoxo

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

Back in the hospital. Boo.

I could tell yesterday that Ronan wasn’t feeling well. He started to act tired and was not acting like his active self. I took him to the clinic today and his counts came back on the lower end and his platelets had dropped to 28,000. We expected this, it means the chemo is doing it’s job. They said they would transfuse him if his platelets were under 30,000 so they did. We would like to avoid another bloody nose incident if possible. After the transfusion, he spiked a bit of a fever which is a big uh-oh around here. It could have been a reaction from the platelets, but it could be something else like an infection. His ANC (annual neutrophil counts) were at 0, which basically means he has no immune system at all. Because of the combination of the fever and his ANC being so low, they admitted him into the hospital. He was not happy about it but is too weak to put up much of a fight. While we were at the clinic, I stepped out for a bit while Mimi Kay sat with Ronan as he slept. I ran over to the Picu to visit my new friends, The Foutz family. Mia is fighting cancer, but a different kind than Ronan. I think she has had 4 brain surgery’s so far and she is only 5. I brought her a new Barbie, a Hello Kitty purse, and some cute Paul Frank pajama’s. I got a little smile out of that sweet little soul and that made my day. She is having another surgery tomorrow so PLEASE keep this little girl in your thoughts as well. I sat and talked with her dad, Matt for awhile who I LOVE. He is funny and cracks me up. He is a badass just like his little Mia. His wife, Sandra, is going to come up in a bit to visit. I have talked to her a few times and feel an instant connection. They are family now, a beautiful family and they will get through this just like we are going to.

I had a breakdown in the clinic today while Ronan was asleep. I hate seeing him not feeling well. My most favorite nurse in the WORLD, Sharon came into the room as I was sitting there crying. She sat with me and we talked for a bit while she hugged me tight. She saved me in that moment and I will never forget it. Today, I feel like banging my head against the wall and never stopping. I told Sharon that when all this is said and done, hopefully we will have raised enough money through Ronan’s Foundation that I am going to donate a lot of it to PCH. You know what I am going to donate it towards?? I am going to make them put in a padded screaming room somewhere in the hospital. With punching bags and everything. Why don’t hospitals have those?? They should be mandatory. I could have used that room today and I’m sure a ton of parents feel the exact same way. Fucking cancer. I can’t even talk about our roommate. If I do, I’ll crack. Let’s just say the spit has to be sucked out of her mouth and cannot even walk. This scares me shitless. Did cancer do this to her?? Must have, because that is what the floor we are on is dedicated to…. I’m dying to know what happened, but too scared to ask. My mind is freaking out and once again I hear myself saying over and over how lucky we are that Ronan is only dealing with this. Am I ok?? Yes. No. Absolutely not. I’m not o.k. and I may never be o.k. but I can put on a good show. A great show. I will smile for my husband extra bright, be the best mommy in the world to my twins and act like everything is A-o.k.  because that is the only fucking choice I have. I will vent on here because it is my escape, I will talk to my therapist and my friends, but I will stay strong in front of the people who need me most. Well, I will try my hardest… sometimes, I have no control over the things I am feeling.

Ronan is worrying me. He hasn’t been eating much and has lost some weight. I know it’s because his stomach is upset but the last thing I want is to have to have a feeding tube put in his nose. OMG. Could you imagine how pissed off he would be about that one?? I’ve got to get him eating. I don’t care what it takes… I’ll let him eat McDonalds 10 times a day if I have to. He has to start eating… I will do whatever it takes. I have got to get his counts to come back up and this fever to go away so we can get him home again. His little spirit is so crushed when we are here. He wants nothing more but to be back at home with his Daddy and brothers.