You must have been a beautiful baby

Ronan’s counts are still rising. He had a great day. I came to the hospital this afternoon with Liam and Quinn. The 9th floor blocked off the playroom for us so Ronan could play with his brothers. We stayed in there for about 3 hours and the boys played their little hearts out. The twins then left with Woody to go back to the RMH so Woody could shower and get some work done. I stayed with Ro for the rest of the day and evening. We played out of our room most of the day, and walked the halls shooting people and playing in the playroom. Ronan took a red marker today and colored all of his arms and said it was blood from his battles. Pretty much anything goes in the hospital as far as I’m concerned as long as he is having fun. I gave him a good bath afterwords in a little tub of water on the floor. He’s all clean now and just fell asleep as he didn’t nap today. Woody is on his way back here to stay the night so I can have some time with L and Q.

We have some scans set for Friday and Ronan will be discharged after that. They keep changing the set of scans we are having but as of now, I believe it’s the CT and Bone Marrow on Friday and the MIBG next week. That is the last I heard from one of the doctors earlier today, but that could always change. I asked New York Miss Macy if she could take Liam and Quinn for a few hours on Friday so they don’t have to sit in the hospital with us and wait. She happily agreed and I know the boys are going to over the moon about spending some time with her. It will be so helpful to us to have them off somewhere having fun, rather than sitting in a hospital.

So anybody that knows me, knows that I have been obsessed with taking pictures my entire life. Just a hobby that brings me much happiness and always has. Taking pictures of my kids is definitely my favorite subject. I have over 11,000 pics on my iphoto… so to say I’m obsessed is an understatement. All of my pictures on my iphoto are now defined to me as, this was our life before Ronan had cancer and this is now our life after. Sad but true.  Going back and looking at pictures before all of this is painful to me and makes me break down in tears. Every picture of Ronan before all of this makes me sick to my stomach as I would have never in my life have imagined this happening to him. He was such a gorgeous baby…. how can he now have cancer???  I sit and look at all of our pictures before all of this and we were such a happy family. We have so many beautiful memories and we were so blessed. I get so angry that all of that has been taken away and we have to work so hard to now find our happiness in the hardest of times. Today, as I was pushing Ronan’s asspole around the halls as well as trying to carry his gun, Star Wars guys, and his Crayola markers that he called his “Missles,” I was overwhelmed with anger. I caught a glimpse of him walking down the hall as I followed behind and he almost tripped over all of his lines. He looked back and goes, “Mom, I can’t carry my tubies and my guns.” I wanted to punch a freaking wall. It makes me sick that my 3-year-old has to worry about tripping over his lines. I am also pissed because Ronan has his 4th Birthday coming up and all I wanted was for him to be home. Instead, we will have to celebrate it in the hospital. All he wants to do is go back to Phoenix and he tells me at least once a day that he is never going to get to go back home and be with his brothers. I tell him that is not true, but no matter how much convincing I try to do, he argues with me and does not believe me. In his head, he thinks we are going to stay in New York forever and he thinks he is never going home. So much for a little boy to try to understand. Too much for a little boy to try to understand. As happy as he is, I also know that he is worried and sad and there is nothing I can do to take that away no matter how hard I try. That is my venting for the evening. I feel a little better now. Not really, but I am trying to convince my self otherwise.

I left the hospital late tonight and came back to RMH with Liam and Quinn. We went down to the common area and worked on some of their homework that their wonderful teacher, Mrs. Martin sent with them. I cannot tell you how good it felt to sit and help my boys with their homework, like a normal mom. After we worked on homework for about 30 minutes, we played the board game Operation. I have not played that game since I was a little girl. We had so much fun playing it together tonight. We are now all snug in bed and Liam and Quinn are watching CSI. A bit mature for them, but they both say they love it. My 7 year olds are now going on 30….. They are growing up way too fast:( Makes me sad.

Tomorrow is a new day. One more day closer to getting Ronan out of the hospital. Cannot wait to see Miss Macy tomorrow. Cannot wait until Friday, when we can bust Ro out of there and all be together outside of Sloan. Sweet dreams, my friends. Thank you for checking in with us. Have a beautiful day tomorrow.

xoxo

Ro baby takes Philidelphia and New York City

I am so happy to tell you tonight that I haven’t updated things in a few days due to a very busy, but fun weekend. It’s the first time that I can remember since before Ronan was diagnosed with cancer, that things around here felt very normal. We spent the weekend hanging out at home, enjoying family time. Woody and I snuck out for a date on Saturday night while Auntie Karen and Olivia watched the boys.’ We had an amazing dinner at Tarbell’s even though I ended up crying a bit in the middle of a conversation between Woody and myself. I tried my hardest to just be a normal couple on a Saturday night…. but the harder I try, the harder things become. We will never be that normal couple again. It’s just not in the cards for us anymore. Everything has changed; nothing is the same.  Not even a Saturday night date will be like the old days. Maybe it is for the better…. because I am so much more aware of the reality of the world around me. But it still stings. I now sit in restaurants and watch the people around me and wonder if they have the sadness in their lives that I do, but in a different form. Or maybe they are lucky enough to be blissfully happy. I know that the world is full of sadness, but as I sat at dinner with Woody, the feeling of complete aloneness washed over me. I sat and thought things like, I bet their baby doesn’t have cancer, or I bet their Grandbabies are totally healthy….Then the guilt washes over me for having these thoughts…. I wouldn’t wish this on my worst enemy. I was once blissfully happy but also blinded by ignorance. Now, I truly know the meaning of ignorance is bliss. What a bullshit way to find that out.

On Sunday I met Fernanda at Hava Java for some coffee. I love that when I was on the phone with Tricia right before Fernanda picked me up and I told Trish how I was going for coffee, Trish goes, “What part of the world is Fernanda saving today?” So adorable. I told her she was saving me:) We sat and had our coffee and she helped me write down all of my questions for the doctors at Chop. We talked about my upcoming week, but the thing I enjoyed most was listening to my new friend talk about the things in her world. Her kids, her funny family stories, the things she’s done in her life. One of the biggest gifts of all of this has been getting to know this beautiful woman. Through this crises, comes the gift of her. I will be thankful for the rest of my life for all the beauty that has shown it’s colors during the darkest time. Fernanda is one of the most colorful things that I have ever seen in my life. I so need color now. This black and white stuff is getting a bit dull and scary. Life is not black and white, Ronan is not black and white, and I wish the doctors in this world would start thinking this way too. I’m about to take all the crayons out of Ronan’s Crayola box and scribble up and down all of their stupid papers and statistics. They do not know my Ro baby.

Woody and I also spent the weekend figuring out our plan for the week. Since Ronan’s ANC counts don’t seem to be dropping and he looks great, we decided to take him out to Philadelphia to Chop. Ro and I are flying out tomorrow morning on a Corporate Angels flight. Woody has a court appearance he cannot miss, so he will be flying out tomorrow late afternoon. We are meeting Dr. Mosse on Wednesday to go over our list of questions with her and to just get another opinion and feel for the place. We decided since we were going to be in Philly, that on Wednesday we would take the train to New York and meet with Dr. Kusher at Sloan Kettering on Thursday. We will fly home Thursday night. It’s going to be a whirlwind of a trip, but one that we both feel is necessary. We have to be prepared as much as possible for what we have ahead of us. Arming ourselves with as much knowledge as possible will only help us decide on what path to take for Ronan. I think we both know in our hearts; but we are keeping our minds as open as possible.

Today, Ronan and I headed to the clinic to have his levels checked. Dr. Eshun thought he looked great and saw no need to transfuse him. Ronan was so excited about not having to get blood, he practically skipped out of the clinic office and to our car. We went home and played out in our backyard and got everything ready for our trip. Liam and Quinn came home soon after and their cousins, Luke and Lily came over to play for a couple of hours. It’s always a treat to have them spend time with us. Ronan especially loves it. It was a good way to get him ready for his upcoming travels. He is a little sad about having to leave Liam and Quinn behind once again. He’s not the only one. I wish they could come on these trips with us but I understand how important stability is in their lives right now. I also understand how important it is to be able to just focus on Ronan, the doctors and get the job done. I cannot wait to get back home to them already though. So glad we will have the weekend together. Ronan is set to start his 8th cycle of Chemo March 14th. Hopefully we will stay hospital free until then. It would be so nice to continue to be at home. There is no place he would rather be.

Woody said to me tonight, “Aren’t these supposed to be the happiest times of our lives?” How do you even respond to that?? I just nodded my head and gave him the best smile I could, which wasn’t much. Fucking cancer. Thanks for robbing all of us of this precious time in life. I HATE YOU.

Hope you all have been well. Wishing you a night full of sweet dreams. Happy Birthday to my Little M today too. I hope you go my message and are having a wonderful time in NYC. I miss you so much and can’t wait to celebrate you when we both get back from our trip and things settle down as much as possible. I love you, Marisa <3

Safe travels for us tomorrow! It’s going to be a very busy next few days!! G’nite friends!!

xoxo


A warning sign
I missed the good part then I realized
I started looking and the bubble burst
I started looking for excuses

Come on in
I’ve gotta tell you what a state I’m in
I’ve gotta tell you in my loudest tones
I started looking for a warning sign

When the truth is, I miss you
Yeah the truth is, that I miss you, so

A warning sign
You came back to haunt me and I realized
That you were an island and I passed you by
And you were an island to discover

Come on in
I’ve gotta tell you what a state I’m in
I’ve gotta tell you in my loudest tones
That I started looking for a warning sign

When the truth is, I miss you
Yeah the truth is, that I miss you so
And I’m tired I should not have let you go

Ooooooooooooooooo

So I crawl back into your open arms
Yes I crawl back into your open arms
And I crawl back into your open arms
Yes I crawl back into your open arms