Turns out Maybelline Great Lash Mascara isn’t so great when you’re a bloody mess

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Ronan. Finally, I can sit down and have some time with you. I hate that I haven’t been able to write, let alone breathe lately. I’ve been so unbelievably busy that I swear by the time my head hits the pillow at night, I am out like a light. Such a change from how things used to be. I miss my insomnia nights where I used to stay up and write to you. Poppy has been keeping me incredibly busy. I forgot how time-consuming this whole breast-feeding thing is and your little sister has such an appetite that I swear I am feeding her around the clock. I know it’s what’s best for her and I love spending the time with her doing it, but it does leave little time to get things done around here. I’m just trying to soak it all in still because I know how quickly this time passes. Things are still going amazing with that little sister of yours. She is still a happy girl and is sleeping at night like a champ. None of us can get enough of her. I won’t let her out of my sight and she goes everywhere with me. She even went to her first board meeting the other night and didn’t make a peep as everyone passed her around to love on her. The amount of love for this baby girl blows me away. It’s like she’s getting double the dose from everyone due to the impact you’ve had on all of us, Ronan. She is so lucky to be surrounded by the most amazing souls. I can only imagine what an amazing little human being this will make her. Tomorrow, she will already be 2 months. It has flown by so fast and she is changing so much. She’s now doing really cute things like smiling and cooing at us all. Macy swears she can understand everything we are saying and she trying to have a conversation back with us. The way her eyes look at all of us while we are talking to her makes me think she is right. This Poppy girl already seems to know so much.

Your brothers are out of school. Normally, we would be in San Diego by now but this year we decided to take a little break. Your daddy was burnt out on it and I don’t blame him. One more year of going to the same spot where we always took you, without you was going to be too much for me to handle. I almost had a nervous breakdown last year. Too many almost 4-year-old blond-haired boys running about. Too many swimming pools without you in it. Too much of everything I pretty much never care to see again. It wasn’t therapeutic and it wasn’t healthy for me to be there last year and I have no interest in returning back to a place that I so desperately want to be the same, but it never will be the same again. So we are still in AZ. Your brothers have started a basketball camp which they love but it’s only for a couple of hours a day. The rest of our days have mostly been spent just hanging out having play dates, swimming, and they have helped me with a lot of things around here. We have our little, Rachel, in from NYC. I love having her here so much. We all do. Just another one of those amazing things to come from this blog and from you. She is our family and I love seeing her with your Poppy sister. Now, if I could only get her to move in and be our nanny;) Something tells me that would not be enough to keep our little smarty pants I just graduated NYC and now am working at Columbia University entertained. I am so proud of her and all she is doing. Macy calls her Saint Rachel because she is that amazing at 22. I feel so blessed to have come across this soul who is now a part of our family. We are all going to miss her so much when she leaves. Hopefully she will come out to Washington and visit us when we are there this summer.

That is what we are doing this summer. I am taking your brothers and sister to Nana and Papa’s house. It’s all your brothers have been talking about for months. I’ve been having to listening to them begging to go out earlier, but we had some things to take care of around here first. Believe me, I am just as excited as they are. I miss my parents and my childhood house where I always feel so safe and sound at, even under the shittiest of circumstances. It will be nice to have help with your sister and brothers. Washington is my place of peacefulness where I feel like I can actually breathe for a little bit. And no almost 4 year old blond boys exist. It will be nice to take a little break from the rat race that I often get caught up in here. I have lots of plans that mostly consist of no plans at all, besides spending a ton of time with your brothers and Papa Jim doing our favorite things like fishing, hiking, playing hide and seek until dark, and enjoying all the beauty the pacific northwest has to offer this time of year, including hopefully many days of rain. Please, please, please Washington rain gods, work your magic. I have been missing our rain so much, Ro.

We had a board meeting the other night. We have so many things in the works and so much coming up. A few top secret things that involve a kick ass rockstar. We still have not heard back on the petition to light the Whitehouse Gold for September. I’m not sure if that’s a good thing or a bad thing. I am still hoping for the best. After the board meeting, I told your daddy I would have Fernanda drive me home because I needed to spend some time with her. We had a lot to talk about and as always, it circled back around to you. I know you know how I am. I don’t let my guard down in front of many people. I much prefer to do all of my crying alone, and don’t often do I do it in front of others. There are only a handful of people who I am comfortable enough with to let everything out. I’ve never had a guard up with Fernanda which is why after our little pow wow, I could barely get my ass back into our house because I was seriously blinded by my tears and the fucking cheap ass mascara I wore that day. Remind me never to wear a different brand of mascara than I normally do. I came into the house, my eyes were black and stinging so badly from the mascara running in them, that I had your daddy in a complete panic. I ran to the bathroom to take out my contacts and wash my face while your daddy hovered over me begging me to tell him what was wrong. It’s the same thing it always is, Ronan. You are dead, I would give anything to have you back, I sometimes still don’t want to be here, because I just want to be with you, where are you? who is taking care of you? and why can’t it be me? Everything in my body still yearns for you, screams for you, begs for you in the worst way. Sometimes your daddy and I sit and bed at night and whisper secrets.

“Do you ever think Poppy has parts of Ronan?” he asked me the other night.
I quietly said, “Yes.”

“Me, too.” he said. “Is that wrong?”

I just told him through my tears, “If it gets us through this, does it really matter?”

I don’t think that it does, Ronan. She is parts of you without a doubt. Just like Liam and Quinn are, too. Many days I catch glimpses of you through your brothers and it helps me in a way. I see you in Quinn’s still sometimes with his mischievous ways. I see you in Liam’s strength and the way he carries himself so proud, like you always did. Poppy feels like you. She reminds me of you. I know you sent her to me to give me a little piece of you back. And some days I think you sent her to me to give me a lot of you back. I don’t care how whack-a-doodle that sounds. Thinking that way helps me to survive this insanely painful life without you here. I can’t tell your baby pictures apart. I can’t get over that she has the same little secret dimple that you had only when you smiled in the same exact spot. It gives me goosebumps and butterflies at the same time. I like living in this Poppyland. It feels o.k. again. Some days it even feels good.

Alright little man. I miss you so much. I miss you. I love you. I hope you are safe. Sweet dreams baby doll. G’nite.

xoxo

P.S. Please keep our Kassie safe while she is away on her amazing African adventure. I know she took you with her. Thanks, baby.

P.P.S. Does anybody know anybody high up at our local cable company Cox Communications?? Woody went to tour one of our Ronanld McDonald Houses here today because we are looking to help them with some of their wish list items. We would like to make some things better for the families that have to stay there. Turns out, they don’t have the place wired for cable because Cox wants to charge them full price and won’t give them a discount. Seriously? That makes me so mad. I love it when people try to make money off of people who are going through a hard time. It’s a freaking non-profit, Cox Communications. Give me a break. I might like to write them a little letter or speak to somebody who is higher up over there. Thanks, lovies for anything you can do.

xx

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Miss Taylor, how I love you so.

I wish this is what the media would focus on. Thanks to one of my little Tweethearts for sending this to me.

I love you, Taylor. Thanks for making  my day a little brighter and putting a smile on not only my face, but this sweet girls as well. I love you to the moon and back.

xoxo

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Tomorrow, we dance.

Ronan. Tonight, I am left speechless with all the things you are doing. Let’s just say it was a day full of shock, tears, screaming, hugging, and silence to process all that has been happening. There are no words to describe all the beauty that you are leaving behind.

Tomorrow, would have been your little buddy, Ezra’s fourth birthday had Neuroblastoma not killed him. Tomorrow, his mama should be throwing a party, not wiping away her tears over her son that she misses so much. We’ve been texting back and forth a bit today. I asked her what she will do tomorrow. She said, “Tomorrow, I will dance.” Erza loved to dance, just like you. You two sound so similar.

I’m going to ask a favor of all you little lovely readers tonight. Tomorrow, please stop and take the time to be thankful for all that you have, and dance while doing so. For Ezra.

This is all I can write tonight as it was a super long day in the best way possible. Probably the best day I have had in such a long time. Thank you, Ronan for your soul which is changing this world. I’ll dance for you tomorrow, to one of your favorites… Kelis….”My milkshake brings all the boys to the yard.” Or Kanye, ” Can’t tell me nothing.” And of course a little Taylor Swift, too.

I love you. I miss you. I hope you are safe. Sweet dreams, baby doll.

xoxo

“Hello, Poppy!” (only to be said in a British accent) Thank you, Ro, for bringing us all this gift. I miss you so much. You are going to make the best big brother. xoxo

Simple Acts of Beauty

I found this on my Inferno Hike today.  It had tiny bells on it and the piece of paper said this::::::
Maya: If there ever is tomorrow when we’re not together…..there is something you must always remember….you are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we’re apart….. I’ll always be with you.

Words straight from Ronan’s lips♥ Unbelievable. Thank you for making my day with something so kind and simple. Beautiful Stranger. I love you. Ronan loves you for making me smile, laugh, and cry. Thank you for Mountain Mike for telling me about this on my way down from the mountain. I may have just missed it as I was so caught up in dealing with Inferno Fuckwad Bob. See….. there really IS a reason why certain people are just randomly placed in your lives. Mountain Mike served his purpose today. Thanks, friend.

Inferno Fuckwad Bob

Ro baby. So, remember how I told you I was going to stop cold turkey, taking my Zoloft…. mainly because everyone told me not to. That I needed to slowly come off from it. I didn’t listen. I stopped taking it over two weeks ago. I did it, all by myself and I’m still here. I didn’t have any side effects. I just feel better. One less medication that I am on. I do not want to live my life with the help of Zoloft. Not that there is anything wrong with it. I just want to find another way to get through this pain and I don’t want any help from a pill. I tried this last night with the Ristoral I am taking to help me sleep. I tried not to take it. It was awful. I tossed and turned for a few hours, while lying next to your Daddy. I dozed off, here and there but the screaming in my head was too much to take. The dreams were too mean and vivid. I got up, around 12:30, and paced the house; looking for you. I took 2 of my sleepy meds and ate a bowl of cereal. I had not eaten all day long. I crawled up into Liam’s top bunk bed and fell asleep until 7 a.m. I woke up groggy, and felt hung over. Your Daddy looked worried as he could see the glazed over look in my eyes. He decided to take Liam and Quinn to school for me. It was a good thing, because I mentally was a wreck today. I don’t remember what happened next, but before I knew it, I was laying my head on the kitchen table, sobbing into your blanket, with your Urn in front of me. I went and grabbed the locket that Macy got me, that does not have a picture of you in it yet. I got out the scissors and cut open the plastic holder that keeps your ashes sealed. I found some glue, rubbed it on the inside of the locket, took my hands and picked up some of your ashes. I felt them for the first time. I kissed them and I took a little of them and sprinkled them to the inside of the locket filled with glue. Fernanda called. I ignored her phone call. I sat and sobbed with you instead. She called, again, about 20 minutes later. I picked up this time. “What are you doing?” she said. I couldn’t talk, so I didn’t say anything; I just sat and cried into the phone. “Where are you?!” she asked in her beautiful English, Spanish, and Italian accent. “Home,” I said. She said,”I’ll be there in 2 minutes.” And she was. She pulled up and I opened up the door, my face black from my mascara. I really need to freaking invest in some waterproof mascara at this point in my life. She grabbed me and let me cry all over her all white blouse. My angel.

We sat at the table for a bit. I told her what I had just done with some of your ashes. I said to her, what if these had been your beautiful blue eyes. She told me they were not. Your eyes, left long before you were cremated. I agree. She put her head down on the table with me and we sat and cried and talked. I told her I needed to get coffee if I was going to function at all today. We ran to Safeway and sat on the couch at the Starbucks. A woman came and sat down next to us. She overheard some of our conversation. We started talking to her. Turns out, she had a 2-year-old who had died, and she had lost a baby from a miscarriage as well. She told me how lucky I was to have a friend, like Fernanda… as she had nobody. All I wanted to do was take this woman home and love her. She does not have a Liam and Quinn to keep her going. She does not have a reason to get up in the morning. But she has found one…. whatever it may be. That is true strength. I told her about your website, and I gave her one of the MISS Foundation cards. I told her about them. She said she didn’t even know something like that existed. I told her to call them. I hope she will. I wish I could have done more for this woman today; but I did all I could do.

The rest of the day was a blur. Quinn went to Dr. Beth. He is so needing her now. As well as your brothers are doing in school…. which from what I can tell, they are excelling….. I know this outside help is so important for them now. I know in the long run, it will make a difference. We are choosing to face this head on, not bury it down in the ground. Their therapy is a big part of this so I plan on continuing it for as long as we need…. even if it is for the rest of their lives. I hope it won’t be, as I want them to be able to go on and live normal, happy lives. But to get them to that point, this is so necessary.

I went to see Dr. Joanne. It was a really long, intense session. I ended up being able to write out that grief worksheet before I saw her. I wrote it out this morning, in a really random, public place. I have struggled with the finding the words to fill it out all week. I have carried that worksheet all over with me, and when I sat with it today, the words to the questions just came pouring out. It took me only a few minutes to answer the 5 or 6 questions. One of the things I had to answer was, if I had to Name my grief; him/her, I’d call him/her…… ??? What???? I had to come up with a name for my grief. The name, Inferno Fuckwad Bob, just flew out of my head. That is what I wrote. I named my grief, INFERNO FUCKWAD BOB. I have no idea where in the world this name came from, but it is perfect. Dr. J sat with my sheet of paper and asked if I thought I could read it out loud to her. I told her No. She asked if she could read it out loud. I said yes. So she did. I think I cried while she was reading my words. I think I bawled pretty much the entire time I sat and talked with her today. When she got to the name of your grief part, hearing her say that out loud, made me laugh. She giggled a bit too, and told me she had heard some interesting names for Grief in her time, but this may have been the most interesting. It was at that point, that I knew that there was no other name in the world for my pain, my hurt, my grief. Inferno Fuckwad Bob, it is. I hope he is not always so present in my life, but for now he is; and I cannot ignore him.

After our session, I came home, threw on my hiking clothes and drove to The Inferno. I ran my butt off up the mountain. I saw Mountain Mike again, which was strange because I was there much later in the day than I usually am. He was coming down as I was running up. I took out my headphones to say Hello. We chatted for a minute, then he said for me to keep going as he didn’t want to keep me. As I got to the top of the mountain, I took my time to talk to you. I didn’t see the Eagles today, but that was o.k. I did some stretching and breathing. I put my headphones on full blast and got ready to run as fast as I could down the mountain. Just as I was getting ready to run, I got this text from Dr. Joanne.

Goosebumps ran down my spine. I had gone into the bathroom, after I left her office. I just needed to wipe down my face and dry my eyes. I was in the bathroom for maybe 30 seconds. I am always intentionally leaving your bracelets places…. on my hikes, random restaurants, grocery stores, etc….. It never even crossed my mind to leave one in the bathroom of her office building today. But she found one, in the sink. I asked her if it was the naughty or nice version. It was the naughty. I thought I was totally out of all of those, but apparently one found it’s way to Dr. Joanne. So random. So something you would do. I have hesitated about giving her one…. just not wanting to overstep my boundaries as I know not everyone is comfortable with the F word. I guess you had other ideas and know she is deserving of wearing it. Because she is a badass:) I am so glad, baby. I thought so too, but you made it happen. Thank you for that and for making me smile so big after seeing that text from Dr. J.

As soon as I turned my headphones up as loud as they would go, and starting running as fast as my legs could possibly carry me, without falling on my face, another little thing happened. I have decided one of the ways you are communicating with me, is through music. I had my iPod blaring, and you had decided what my playlist was going to be. From the time I started running, until I stopped at my car, these are the songs that came on, in this order. Pearl Jam, Given to Fly. Coldplay, Fix You. Band of Horses, No One’s Gonna Love You, and it ended with Katy Perry, Firework. I mean really, Ro. That was so sweet of you. It made me smile, cry, smile, laugh and blow kisses up into the sky. I love you so much, baby. I miss you so much.

The rest of the evening was spent at home with your brothers, Daddy, Danielle and Dave stopped by with their new puppy; Bash. We sat outside and played with him. Such a sweet, simple night. I often feel you around when Danielle is with me. She is one of the people in my life that makes me feel peaceful. I needed that tonight. Thanks, D. Love you.

Alright, my “not spicy, little monkey boy. I’m going to try to get some sleep. Really want to do boot camp in the a.m. but have not been succeeding in waking up for my 5 a.m. booty, boot camp call. Maybe tomorrow. I love you to the moon and back. I hope you are safe. G’night my love.

xoxo

On to the next step…. Transplant here we come!

Wasn’t a lifetime ago that I was sitting in the cafeteria with Auntie Karen, E.J. Tricia, Max and Woody as we went over all the options for Ronan? Wasn’t it a lifetime ago that I had to leave the table because I was hyperventilating and Tricia followed me and I told her there was no way I could do this?? How could it be possible that so much could change in the blink of an eye, and here we sit 5 months later with everything on paper, telling us the results from Ronan’s scans.

Bone Scan- No definite focal abnormality

Bone Marrow– No definite focal abnormality

PET-CTMIBG– Still has a small amount of activity in his knees, pelvic bones, shoulders, and spine but it has greatly diminished.

MRI– No abnormality in the brain.

24 hour urine test- negative for Neuroblastoma

This is good news. This is a huge victory for Ronan. But I still cried. I cried because I am his mother and I just wanted everything to be gone already. The doctors did not expect Ronan’s results to be any better than this, due to how tough this cancer is. That is why we will do the Stem Cell Transplant, Radiation, and Antibodies. Yesterday was a hard day though. I called Fernanda first… because it was her words I needed to hear. She let me cry and then told me all of the reasons why this is happening, how fucked up it is, but how this is Ronan’s journey, and I cannot compare it to anybody else’s because he is so different. She told me how lucky we are that he is responding so well, as unfortunately, some children do not respond at all. He is on his own path and is going to do this his own way. She is so right. I felt better after talking to her and made a couple other phone calls. I was running late to my hair appointment and was a mess by the time I got there. My sweet hair girl, Katrina (the one who shaved Ro’s hair for me) knew something was wrong as soon as she saw me even though I told her I was fine. 10 minutes later I was bawling in her chair as she wrapped her arms around me and held me. I told her about the scan results and what we had coming up. She is the best and is so good at letting me vent. Thanks, K<3 Love you.

Don’t even get me started on the fucking Audiology test yesterday. We had to finish it up and when we were done, the asshole Doctor looked at me and started saying things like, “Definite hearing loss, it’s permanent and will never come back. You may want to consider what kind of quality of life you want for him.” I wanted to reach across the table and strangle the mother fucker. The way he delivered his “news” was harsh, cruel, and just plain rude. I felt like I was sitting back in Dr. Robinson’s office for the first time having Ronan’s eye looked at when I ended up walking out of the appointment. I tried to argue with him, but his results are his results, he said.  WTF ever. I will not be going back to see him again. We know Ronan is going to have high pitched hearing loss, and big deal, we can deal with that. This guy made it sound like Ronan’s life was now going to be completely ruined. This is not the way you present your findings to a mother who’s child has cancer. We’ve got enough on our plate as it is and this is the last thing I’m concerned about right now. I’m made my complaint and will continue to do so against this asshole. If you are going to be so cold and ruthless, you should not be working with children.

Ronan has been in a happy mood since we got home yesterday. This will be his last weekend here for awhile so we are going to soak it up. He has no idea yet what is coming up next. How do you explain to a 3 year old that they will be going into isolation for god knows how long?? You don’t. I will tell him on Wednesday night, as little as possible and try to explain it in the most kid friendly way I can. I have a lot to get done before Thursday and thankfully my therapist squeezed me in on Tuesday. I’ve got to get myself ready as well as Ronan. We will meet with Dr. Adams on Tuesday to go over everything. I am excited. Excited that we are moving forward and that Ronan is doing so well. I am excited to get this Stem Cell Transplant done and give my baby a whole new immune system free of this evil cancer. He is going to have another birthday to celebrate once he gets his immune system. He will be the boy  with the most birthdays ever;)

This weekend we have the twins’ basketball game, my mom and I are having lunch with my dear friend, Lisa, Woody and I are going to Tricia and Max’s tonight, and tomorrow night all of my sweet girlfriends are kidnapping me for a dinner out send off. So excited to see them all!!!! It is going to be a great weekend and I am going to enjoy every second of it.

I hope you all have a wonderful weekend!! Thanks for checking in and spreading the word about our little Rockstar!

xoxo

GRRRR… New York Miss Macy! Mama Bear is in full effect. LMAO!!!!!! I totally think this will keep me warm in the hospital!! Love you my crazy friend!!

Deep breaths, Patience and Xanax

Fork em' Devils!

What a long day. We don’t know anything yet but should know the results by tomorrow afternoon/evening. Now Dr. Eshun will meet with a team of doctors to go over the results of all the scans combined, with a fine tooth comb. Waiting is the hardest part. Sleep is going to be extra difficult tonight. UGH. I hate these nights.

Today, we started out at the clinic just doing Ronan’s normal labs. He needed to get blood, but we did not have enough time to do it before we had his MIBG scan. We will go back tomorrow for a transfusion as his counts were a little low. We did have some time to kill in between the clinic and our scan time so we went to the car wash and ran home for about 15 minutes. We then headed back to PCH to get ready for Ro’s scan. He was in a pleasant mood today and was excited as always to see Dr. Maze. We brought him a coffee and Ronan introduced Dr. Maze to his favorite show that he was watching on his iPad, Max and Ruby. Dr. Maze and our favorite of his helpers, Angela, were eating Ro up like always. We had some fun play time with them before it was time for Ronan to get his “sleepy medicine.” We did the usual, I held him, and Dr. Maze injected him. Ronan cried out his usual, “Mama, Mama, Mama!” I put on my brave face and gave Dr. Maze the look he knows so well now, which is, take the best care of my baby ever. I don’t even have to say the words anymore. He knows and he does. So thankful.

I walked myself out to the waiting room where Auntie Karen and Fernanda sat waiting for me. I am so glad they were there to keep me company today. They kept my mind occupied and I am so happy the two of them finally were able to meet. I am so used to going to PCH alone and by myself and I never realized how much work it is for me. Today, after Ro came out of anesthesia, Fernanda went and got my car for me so I didn’t have to walk all the way to the parking garage while carrying my bags and Ronan as I usually do. Today was easy and I am going to try to make myself take the help from my friends more often. It makes all the difference in the world. They kept my mind busy and my spirits happy. Thank you both for today…. I know I tell you all the time, but I love you so much. Ronan woke up a little grumpy and just wanted to get out of there asap. That is precisely what we did.

We came home to Mimi and Papa helping Liam and Quinn with their homework. Ronan was starving so I made him his favorite scrambled eggs and he scarfed them down. Woody came home soon after and we snuck out just the two of us for dinner. It’s been so long since just the two of us have gone out alone. It was nice to just sit with my husband and try to be as normal as possible. I caught myself laughing easily at his funny stories and we got caught up on our plans for the weekend. It was a very nice, much needed night together. My mom comes into town tomorrow until Monday and I am so very excited to see her. It should be a busy, fun, weekend <3

Fernanda sent me a text tonight that melted my heart. She said one of her little boys’, Brando, who is four, was at school today and a little boy asked him where his mommy was. Brando told the little boy that his mommy was at the hospital helping a little boy grow back his hair. That is one of the cutest things I have ever heard and filled my heart with so much joy. Fernanda is doing so much more than that; she is teaching me what it truly means in life to be an amazing person to the core. What it means to live a life full of passion, laughter, and love with just the right about sass to go with it. Fernanda is the kind of women who can light up a room with her quick wit and bright eyes. I told you she has the same sparkle in her eyes as Ronan and I find so much comfort in that. Even though what we are going through, sucks balls, I am so thankful for the beautiful souls that I am surround by. If not for this, I would be missing out on all the loveliness that has surrounded me for so long, but I just didn’t know how beautiful it truly was until now. Everyday is a combination of heaven and hell…. it’s a beautiful, tragic love story to the fullest.

Deep breaths tonight. Hot Yoga at 5:30 a.m. Yes, please. I will be there and I will be focusing all of my energy into my Ronan baby like I always do. We need some good news tomorrow. Please.

G’nite and sweetest dreams to you all. Love you for checking in on us and loving our little Ro so much.

xoxo

Why hello beautiful boy

Today was actually a wonderful day. Wonderful as in we only had to go to the clinic for the standard blood tests and to have Ronan’s broviac dressing changed. We got to see our favorite nurse, Sharon, which is always a treat. Ronan told me today that she is his favorite person to see at the clinic. So sweet he is. This morning he woke me up at 7 a.m. on the dot demanding scrambled eggs, pronto! I tried my best to put him off as I was so cozy in bed but he wasn’t having it. I got up, made him his eggs, and got Quinn ready for school. Liam is still at Mimi and Papa’s due to not feeling well. After Quinny got off to school, I spent the rest of the morning cooking for Ronan and making him food about every half an hour. He is constantly hungry which is a very good thing, but leaves me exhausted and I don’t get much else done around the house. We headed out to PCH and had a chance to talk to Dr. Eshun about Ronan’s scans. He overall seemed pleased with everything but does not want to give us any concrete statistics until we get the MIBG scan done. This will be the most telling of all of the scans. Thursday cannot get here soon enough. After the clinic visit, Ronan was begging me to take him to Chelsea’s Kitchen for lunch. We met Woody there and watched as Ronan chowed down some of Woody’s French Dip, french fries, and his Grilled Cheese Sandwich. I had my favorite, the Ahi Tuna Tacos. Most amazing things ever. I could never get tired of that place. Ronan was happy to be out with his mom and dad and it was a gorgeous day spent with a gorgeous boy who is feeling wonderful. You have no idea what it does to my heart to see him so happy and carefree. Forget the fact that his life has been overtaken by cancer; today none of that mattered. Quinn came home from school and cousin Luke came over for a couple hours to play. The boys played baseball outside and ran around like crazy. I felt like a normal mom for a minute… making them after school snacks, helping with homework, doing laundry, and getting to hear all about Quinn and Luke’s day at school. It’s days like today that the cancer cloud that hangs over my head disappears for just a short amount of time. It is the most wonderful feeling in the world. I made the boys’ dinner and as soon as Woody got home, I headed out to my gym to get in a quick workout. I’d better try to get in as much exercise as possible before transplant starts because I know once that starts, all of my workouts are going to be gone for awhile. Not looking forward to that but I will just have to suck it up and keep telling myself that this isn’t forever. Soon we will have Ronan back and our lives will return to being somewhat the same; but with much more appreciation for anything and everything that comes our way. After going through something like this, the little things are going to seem so less in our life and we have learned what truly matters. I am grateful in a way for this lesson and I have all the faith in the world that Ronan was put here on this earth to teach us these things and to help us change the world. He has such a special journey planned for all of us and we are going to follow his lead. I have learned to just go with my gut feeling with most everything in my life and it always turns out right. I will follow Ronan to the end of the earth and back and feel so lucky to do so. He is the most amazing little boy. Never in my life have I known someone so strong, brave and beautiful and he is all of this at only the age of 3. Just imagine what he is going to be like as an adult. I cannot wait to see what life has in store for him.

I have learned that my days now are filled with both sadness and beauty. I am o.k. with that because I try so hard to make sure the beauty outweighs the sadness. Maybe Ronan was born such a beautiful boy for this purpose… because this has always been what his journey in life was meant to be and being so beautiful, would help me get through this?? Never has a more beautiful boy existed and I am not just saying this because I am his mother. I am not biased, this is the truth and I now know it was for a very special reason. All I have to do when I am feeling too sad or scared is look into his big blue eyes and my fears melt away. The look in his eyes tells me over and over that he is going to be fine. I truly believe that with every part of my mind, body, and soul. Everyday, I am finding things I am thankful for and it reminds me how precious life on this earth is. Ronan is a gift and I am so happy I get to share him all with you.

That is all for tonight. I am going to hot yoga with Stacy at 5:30 a.m. in the morning. Told you I’m taking full advantage of my freedom and what better way to start my morning than drenched in sweat and tears. Love you all my dear friends. Sweet dreams of peace and happiness.

xoxo

Love my name
Love left dry
Frost or flame
Skeleton me
Fall asleep
Spin the sky
Skeleton me
Love, don’t cry
Love, don’t cry
Love, don’t cry
Skeleton me
Skeleton me

Soon comes rain
Dry your eyes
Frost or flame
Skeleton me
Fall asleep
Spin the sky
Skeleton me
Love, don’t cry
Love, don’t cry
Love, don’t cry
Skeleton me
Skeleton me

Skeleton me

I get by with a little help from my friends

There is no better way to start a Sunday morning than meeting up with my girlfriends at Taylor’s for breakfast. Tricia, Bethany, Fernanda, and Stacy all came prepared with everything we needed to talk about as far as getting things in the works for transplant. These women, I swear could rule the world. Smart, compassionate, funny, beautiful, and savvy are just a few things that come to mind when describing them. Fernanda came armed with a lot of printouts about questions we need to have answered about the isolation period and we put together a pretty good game plan. It was a little overwhelming but I know not to worry too much because these girls have it all under control. There is no way that they will not have everything and more covered. We started lists of everything from who will do laundry to the schedule for Liam and Quinn, to who will sneak me in coffee when I need it. There is nothing these girls will miss and I could not have more peace of mind with whom I am leaving things in charge of. Fernanda has read over 60 blogs of other Neuroblastoma moms and knows everything we need to do and ask.

As we were leaving Taylor’s I was getting into Tricia’s car and she looked over at me and called Fernanda a real life Superwoman. She hit the nail on the head with that one. Fernanda is a even better than Superwoman… she is my version of a Spanish Superwoman with sass, spice, brains, compassion, and just the right amount of  a fiery attitude to help me kick ass through this. Then there is Stacy. The most loyal person I have ever met who loves me like I am family. Who knows just how to calm me down by just giving me a look. If there is ever a time that I feel overwhelmed or panicked, all I have to do is look in Stacy’s eyes and I know everything is going to be alright. She is the type of person who will bend over backwards for you, without ever asking a thing in return. She gives with her entire heart, no questions asked, and fills me with the peace and calmness that I so need in my life right now. And Bethany. You look up the definition of Grace and Beauty in the dictionary, and you will find Bethany’s picture. She is somebody that I have known almost my entire life, just not well at all until now. She is guarded but wears her heart on her sleeve. I am honored that she has slowly let me into her life as it takes a lot to earn Bethany’s trust. She is the most amazing mommy, wife, friend and someone who I would trust with my life and the life of my children 110%. Last but not least, there is my Tricia Boo. My best friend for 6 years now and we have the kind of friendship that dreams are made of. It’s been a six year love story and now she has basically given up everything to help me through this. She is the Godmom to Ronan and my saving grace. There is no way I would be able to get through this without her. Sitting at breakfast this morning I felt so fortunate so be surrounded by these women. One of the biggest gifts I have received on this journey is finding out what people are really made of. The people that are in our lives, right now, at this moment, are pure gold. They are my hidden treasures whose hearts keep me filled with courage and strength. I am beyond blessed.

I think I just wrote a love letter to my sweet girlfriends above… I could seriously write a book on each and every one of them. You know how else I know I am beyond blessed?? Because I just took the time to write about those 4 girls above and I have a handful more amazing girlfriends who I could go on and on about as well. You all know who you are and I love you so much. I will never be able to thank you enough for all you are doing for me, for Ro, for our family. I will simply tell you everyday how much I love you and how thankful I am that people like you exist in the world and I treasure you all so much. Thank you for being the truest friends alive in the purest way possible.

After breakfast, Trish came over and we sat down with Woody to go over everything. We started an online calendar to get the ball rolling on what exactly needs to happen and to figure out which days/nights I will be in the hospital and which days/nights I will be at home. Seeing this on a calendar defiantly makes me feel better. Having something to look at helps to calm my nerves. I feel like we are starting to put a very good plan into place. The thing with cancer is everyday is different and you never know what to expect, but at least this gives me a little something to hold on to. I thrive in structure and with a good plan in place I feel like I will be able to fully focus on Ronan if I know who is doing what on this day and at this time.

Today, the boys’ played with their cousin Luke for most of the day. We also had Luke’s sister Lily over to play as well. She was such a little trooper, keeping up with a house full of 4 crazy boys. I took her up the street for some girly time and we got mani and pedicures. Lily is 8 and is just as sweet as her brother. I never get little girl time, so I was in heaven. She is darling and I loved spending time with her today. We both got glitter nail polish on our toes and Lily got pink on her nails with a little flower design. I would steal those kids every weekend if I could:) It is adorable to see this new relationship flourish between cousins.

After Luke and Lily went home, I could tell Liam wasn’t feeling well today. He took a big nap which he never does and woke up with a sight fever. I sat and held him for a bit but we had to call Mimi and Papa to pick him up so he could go and stay at their house for the night. We can’t take any chances around Ronan if Liam does have something. I hate that I can’t take care of my little guy who isn’t feeling well. I mean, that’s supposed to be my job… I’m his mom. We don’t have a choice though, we cannot have Ronan getting sick with anything before transplant. Off he went and Woody, Ro, Quinn and I walked down to Jay’s house to watch the Superbowl. We had a great time and Jay was the master of the BBQ making the best steaks ever. We hung out, watched football, ate, and played catch outside. Ronan got tired around half-time so I brought him home. Quinn and Ro are fast asleep now and Woody is having some boy time with Jay and Mark. He needs that so much. I am so happy that Woody’s best friend now lives right around the corner from us. It has been nothing but great for all of us.

Alright, xanex is kicking in. I must get a good night sleep tonight…. I have so much going on this week and if I am not sleeping, lord knows what I will forget to do or what I will mess up. I’ve got to try to start sleeping more at night…. otherwise my brain turns into mush and I cannot focus or remember a thing. Hope you all had a great weekend. It was one of the best weekends we have had in a very long time. Goodnight to all of you out there… sweetest dreams possible.

xo

Look at the stars,
Look how they shine for you,
And everything you do,
Yeah, they were all yellow.

I came along,
I wrote a song for you,
And all the things you do,
And it was called “Yellow.”

So then I took my turn,
Oh what a thing to’ve done,
And it was all yellow.

Your skin
Oh yeah, your skin and bones,
Turn into something beautiful,
And you know
You know I love you so,
You know I love you so.

I swam across,
I jumped across for you,
Oh what a thing to do.
Cuz you were all yellow,

I drew a line,
I drew a line for you,
Oh what a thing to do,
And it was all yellow.

Your skin,
Oh yeah your skin and bones,
Turn into something beautiful,
And you know,
For you I’d bleed myself dry,
For you I’d bleed myself dry.

It’s true, look how they shine for you,
Look how they shine for you,
Look how they shine for…
Look how they shine for you,
Look how they shine for you,
Look how they shine…

Look at the stars,
Look how they shine for you,
And all the things that you do.

An old soul

Ronan had his clinic visit this morning. His levels have dropped just as we were expecting. We are so used to this chemo thing now that we know where his counts will be. What I didn’t expect wash his platelet counts to be so low. They were 10,000 today. WHAT?!?! 10,000 and not a bloody nose in sight? How is that possible? Since we started this chemo journey, anytime Ronan’s platelets drop lower than 20,000-30,000 we are guaranteed that he has the dreaded bloody noses that we cannot control. I told “A” today that maybe it’s due to having the tumor out of Ro. She smiled and I know she doesn’t think there is any correlation between the two, but I am going with what I have been saying all along…. He really is a brand new boy. He was so sweet as we were waiting at the clinic today. He sat and talked to me about all of the nurses who take care of him. As “A” walked by, he goes, “She’s so nice, Mom.” The he told me how much he loved Sharon and Kristin. He is so full of love today and is just so grateful, even though he is feeling so crummy. His ANC is at 60… which means his immune system is almost wiped out. I’m expecting it to hit 0 tomorrow. We will have to keep a close eye on him…knock on wood no fevers or bloody noses. It would be so nice to stay out of the hospital until Transplant time.

I spoke with Erin from Transplant today; she is basically Dr. Adams go to girl as far as scheduling and preparing us goes. She told me to expect to start Transplant on February 15 or 16th. Assuming all of Ronan’s tests come back with the results we are wanting to see. She didn’t see any reason why they wouldn’t, but he has to have everything from his heart, liver, and kidney checked to make sure they are functioning properly before we can get the green light. He has those tests scheduled for February 9th. So far, every time he has had his organs checked, everything has looked great. It is amazing how much the human body can take. After we get the green light for transplant, we will then be randomized to see if Ronan will have two transplants or one. You know we are hoping for two…. even though I am scared shitless at what this is going to do to my little guys body. Woody keeps saying we’ve got to throw the kitchen sink at Ronan’s cancer… and two transplants is definitely throwing the kitchen sink at it. If Ronan’s cancer comes back, it will be because we didn’t kill all of the cancer cells the first time around. Two transplants we feel, will increase the chances of killing all of his cancer.

I am trying to mentally prepare for Transplant/Isolation. I am wracking my brain for everything that I can possibly think of to keep myself and Ronan happy during his stay. I’ve been trying to think of it more like… If I were stranded on a desert island rather than… if I were trapped in a solitary confinement… what would I need?? Something tells me George Clooney may not be realistic. So far, I’ve come up with easy things such as: my computer(duh) my camera, movies, books, my coconut water (have I mentioned that I am OBSESSED with the stuff??) my yoga mat, Ronan’s favorite toys, Art supplies, his favorite bedding, his Wii and PS3. We will have to set up Skype to keep in touch with Liam and Quinn. I am trying my hardest to turn this into something really positive. Not many people get the opportunity in life to just simply “be.” I am hoping something really good will come out of this and it will make Ronan and myself even stronger. It will be a time for great reflection and learning. Tricia and I were laughing the other night because I told her I was going to study Buddhism while in Isolation. She told me she was going to make me a little sign to wear around my neck that says, “Cannot speak,” due to respecting the silence that comes with this religion. The image in my head totally made me laugh. Don’t think I’ll take it that far, but I love her for making me laugh.

I talked to my NYC Miss Macy today. That crazy pants. She texted me to see if the boys’ would like a King Cake from Nola. She is going there on a business trip soon and wanted to ship the boys one. I had no idea what a King Cake even was so I listened as she Googled it and explained it to me. I also told her that I needed her to come stay with me in Isolation. I was half joking and told her I needed her purely for selfish reasons. She told me to say the word and she would be on a flight if that is what I needed to keep me sane. I told her that we would save her visit for when we are finished with this Stem Cell Transplant and that way, we can all enjoy Miss Macy to the fullest. We are going to have such a reason to celebrate! I know Ronan is going to soar through this transplant with flying colors. He is so tough and has done so well with everything else, how could he not.

For now, I am going to soak up being at home with the boy and Woody. These past couple of days have been so sweet. I am thankful every second of the day, for all the blessings we have in our life. Ronan being the biggest one of them all. One of the night nurses that takes care of Ro whenever we are admitted to PCH says the same thing to me every time she comes in to check his vitals. She always tells me that she can tell Ronan is an old soul. This always makes me smile because I have known this since the day he was born. He has always been different; almost like he has been here many times before. He just has that look in his eyes that tells me not to be scared, not to worry, because everything is going to be alright. Looking into his eyes, I know this. This cannot turn out any other way; he has way too many hearts to break and way too much trouble to cause.