No news is good news, yes??

I find it impossible that I am even still standing after today. Let alone, writing this post. I’m not sure how I’m even awake at this point. I didn’t much sleep last night and we woke up early to get Ronan ready for his day. He was mad that I woke him up from his peaceful slumber and even more mad that he had to drink his contrast before we could head to the hospital for his CT scan. I power talked him though it, although he fought me the entire time. Ronan is such a hard headed little boy and after battling with him almost the entire day, I am mentally beat. There was a lot of distracting, playing, bribing, and threatening today to get him through what we had to do. I have am so glad to be in our bed and over with today and am not looking forward to tomorrow at all. Scan days are always brutal and I know 110% that I would have crumbled today had it not been for Fernanda. She was such a big help.

We arrived to the clinic and were told that Ronan needed platelets again because his were still very low despite the platelets he received yesterday. We had plenty of time before our CT scan was scheduled so we went and got his platelets started. While we were getting them, Ronan fell asleep on the little couch next to me. Fernanda and I sat and watched him sleep and quietly talked. We both tried to block out the sounds of the screaming boy next to us who was about Ronan’s age. The poor thing must have screamed bloody murder for a good half an hour. I felt so helpless and so sad for the child and parents. I told Fernanda sometimes watching the parents go through this is almost harder than watching the kids. It is a lose lose situation for everyone involved and never gets any easier to see.

After Ronan was finished with his platelets, we headed down to get his CT scan done. I must have been told by 5 different people that he needed to be ready for anesthesia, even though I told everyone that he didn’t need it today. We got down to the CT room and sure enough the nurse came up to me and on her piece of paper says the word, Anesthesia, in big red letters. As soon as I saw this I told her that Ronan would not need anesthesia today. She looked at me like I had three heads and said that she wasn’t told this but that we could try it without, first. We went back to the room and I put Ronan on the table as he clutched onto his Star Wars guys. I had prepped him all morning for how he had to hold still and how it was going to be a piece of cake, just like radiation. He understood the drill and was very excited that I was able to stay in the room with him this time, unlike RT where I had to leave him all alone. The whole CT scan took about 10 minutes. He held so still and I acted out a scene from Star Wars for him with his Clone Troopers and told him all about the secret mission they were going on with him. He smiled the entire time and listened with his big eyes looking up at the CT machine. I was so proud of him; once again. He truly amazes me with how brave and strong he is. When we finished, all the techs told them how great of a job he did and he gave them all knuckles as he walked out the door. Such a little Rockstar, my Ronan.

I’m not sure where the rest of the day went. We had to wait around forever to get Ronan’s MIBG injection for tomorrow’s scans. We ran out for a bit and went to Dylan’s Candy Shop which I am totally over at this point. Four trips there, in the past 3 weeks for overpriced candy and you cannot even move in the store due to it being jam packed with people. If I never have to see that place again, I will be so happy. And this coming from me, an avid candy connoisseur, is huge. I’m done with that place. After Dylan’s, Fernanda was about to pass out from being on the “Maya diet,” which consists of not eating, so I took her to 4 carrots to eat. I pretended to eat a half of a sandwich for her, but she busted me and gave me a very stern but loving talking to about my lack of food. Ronan and Fernanda ate which was all that mattered to me. I did take a small Fro Yo to go and ate the whole thing for her. That’s the best I could do today.

I asked a few times if Dr. Kushner would read the results of the CT for me today and I got put off which I kind of expected. Everybody reassured me that if there was something that was not good, he would have come to talk to me. I hope they are not eating their words tomorrow. I’m going with the no news, is good news approach tonight so I can hopefully sleep a little easier.

We got back to the RMH later this afternoon and Fernanda hung out for a while. I practically had to force her out the door and told her to get some rest even though she tried to say she was coming back later this evening. I was not having it as she needs her rest too. My friends, Ed and Diane who are in town with their two little boys came by to see us. We had been looking forward to seeing them all day. They came armed with enough toys for Christmas. Ronan was in heaven not only because of the toys, but even more so because he had two boys to play with. He should have been wiped out from today, but he ran around here and played with those two until 9:45 tonight. It was so good for him and made him so happy. Thank you, Ed and Di. You two and your boys were just what we needed after a long and hard hospital day. I am so blessed to call you my friends.

Alright my dears. This is all I have tonight. I hope you all had a beautiful day full of many blessings. Tomorrow is a huge day for us and I am going to be channeling all of your strength and love. Sweetest dreams to you all.

xoxo

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.