2 a.m. with Ronan and Ava

Ronan. I had a lot to get done today. A lot of stupid, everyday stuff. I had a my little Mandy Bee, to help me get my things done. Sometimes I need help. This little Bee knows it without me even having to ask. Even if it’s just things like going to the post office, picking up dry cleaning, etc… This little Bee swoops in, drives me around, helps me with all of my little chores because some days, even the littlest things, seem like big things to me. That’s how it was today. I walked into Walgreens with this little Bee. I ran into an old friend of mine. One that has quietly been waiting for me, on the sidelines. The last time I saw her, you were sick. She’s been reaching out to me, but from a distance which I so appreciate. It was pure alignment of the stars, that I ran into her when I did. She was sitting in a chair, waiting for a prescription. It took her a minute to recognize me as I was in my best undercover Fedora Forever 21 hat like I love to wear, when I am feeling in a piss off world kind of mood. I looked at her, without saying anything for a minute. As soon as she recognized me, she got up to give me a hug. I stood with her for a while. I nuzzled into her neck and started to cry. Mandy Bee swooped into grab the items I was carrying, before I dropped them.

We fell into a rushed/emotional talk. I then said to her, “I’m leaving tomorrow. What are you doing, tonight?” We made plans to meet up and to catch up. I had a lot of shit to do, tonight, but I didn’t care. I needed some time with my Janet. We met up. It was as if no time had passed at all yet the entire world had changed. I caught her up on things. She knows the outside of my world like a lot of people do, due to reading this blog, but tonight I got to sit down with her and catch her up on my inside world. She made me laugh with her great stories of me and how we first met. I had forgotten the details as my memory is still long gone with most things in my life that happened in the past. I was telling her all of my crazy ideas about what it is I want to do for you. She just looked at me and said, “Do you remember how you met me??” I said, “Yeah. You were one of my professors. I was one of your students….” She goes, “Oh my god. You really don’t remember? You don’t remember how the course I was teaching was closed, due to it being all full of students? How you tracked me down, on campus, and begged me to let you into my class?” I just looked at her and said, “Ummm, no. I don’t remember that at all.” She goes, “Maya. This is how I know you are going to get this done. I told you, NO, that my class was full and I was not going to let you into it. You didn’t even give me an option. You somehow made me change my mind and open up one more spot for you. I did not want to. I even thought to myself, GOD, this girl is annoying. But you wouldn’t take no for an answer. And I told you no, more than once.” I smiled at Janet. “Yeah… I guess I kind of remember that now. A little bit.” The memory of this is still faint but I can remember parts of it. Janet went on to say, “You told me that I wouldn’t be sorry. You gave me some sassy pants attitude that you would be the BEST student that I had ever seen. Something in your eyes made me believe you. I knew there was something different about you. And so I finally agreed to let you into my class. And you know what, you were my best student. You sat in the front row of every class. You kept all your promises. You were my star student. One of the best I’ve ever had.”

I giggled at Janet’s memory. I guess after being in her class for a while, I also made her agree to go to lunch with me, even after she told me that she did not interact with her students, outside of school. I somehow got her agree to go to lunch with me and after that, our student/teacher friendship flew out the window. We became very close friends. The last time she saw you, we went to Chelsea’s Kitchen. I think you were still pretty little, but I remember you being such a handful even back then. In the best way possible, of course. I have no idea, where you got that from:)

Our dinner tonight turned into a 3 hour dinner. I listened to Janet tell me how proud she was of me for all I am doing. I let her words sink in. I listened to her advice as I have always admired the things that have come out of her mouth. Her words mean a lot to me. They always have. As we were leaving, some man who had been sitting by us for most of the night, was telling us goodbye. He got the gist of your story due to his overly curious mind/really wanted Janet’s phone number. He told me he was sorry about you and he thought it was really great what I was doing. I just looked at him, shrugged my shoulders and said, “I’m here to fuck cancer, in the ass.” True statement. Those are the words that came flying out of my mouth. I don’t think he knew quite what to make of my statement which in turn, made me giggle. My filter did not exist tonight, in that moment. This is just how I am. Love me or leave me. Take me as I am or let me go. I am o.k. with all of it.

I have one more little thing to say tonight. I don’t have a high tolerance, for listening to people complain about stupid shit in their lives anymore. Stupid shit such as, ” I am so stressed. I have this party to go to. I have this many errands to run. My kid has an ear infection. I didn’t get time to go to the gym. My life is so busy, stressed, awful and my kids are driving me crazy.” If you complain about this stuff, I can guarantee you, I will shut down. I will not say a word to you because I have mentally checked out. I have already written you off for the time being. I am not doing this to be mean or hurtful. I am doing this because all I am trying to do, is survive. I cannot exist in a world full of pretend problems. I don’t have the mental capacity to handle that. If you think I am being harsh or unfair… please take a second to read this. I think you will better be able to understand, what it is, that I am saying. This is from my friend, Ava’s caring bridge tonight. If I sometimes come off too harsh, jaded or unfair… you only need to read these words to understand why. My heart is sad, heavy and broken. I am so sorry to Christie, Ava, and her family. Nobody deserves this.

Please Pray for Ava

Written 7 hours ago by Chrisie Funari

i am sorry – I have bad news. This is so hard to sit here and type. I just got home from the hospital and am exhausted – we all are – nothing in comparison to Ava. Ava’s scans show that she has a lot of new progressive disease in the front part of her right brain, her esophagus/chest, pelvis and stomach area and in her spine. This is in addition to the disease she already had – her brain tumor and her tumor on left pelvis. This new disease did not show up on her scans 6 weeks ago – or on her follow up ct scan just 3 weeks ago. So, it means this new disease is growing rapidly. Ava got extubated last night at midnight. It is almost indescribable what it feels like to watch your child go through that. She will continue on daily dialysis and the goal is to keep her comfortable and keep her pain under control. Ava’s body is not able to handle any cancer treatments as her kidney’s are just not working. She has zero urine output and her legs and stomach are swollen since they are full of fluid. Her doctor said we would come up with a plan of care next week. Ava continues to be in pain so this afternoon she was hooked up to a morphine pain pump and she seems a lot more comfortable. We are so saddened by all of this and thank you for your continued support and prayers. We are taking it one day at a time.

-Is this what is going on, in your life? If not, shut up and be thankful for all the fucking soccer practices, ear infections, homework and graduations that you have going on. Seriously. I feel like I sound like a broken record. If you are going to complain about things that you should be thankful for, please be kind enough not to do it around me. Please continue to keep Ava in your thoughts, prayers, or whatever else it is, you might do. Then get up and go hug and kiss your kids because you are so fucking lucky, to have them. Reading Christies words ripped me to shreds. I know them all too well.

Ronan. Please take care of Ava. I can’t sleep tonight. It’s now 2 a.m. I have not been able to stop thinking about Ava, all week, but today she has been on my mind, all day long. I don’t like this world I live in now. I would like to go back to the world of unicorns, rainbows and puppy dogs where childhood cancer, does not exist. How many kids are going to have to go through something like this, before something is done? I am trying really hard to work as fast as I can, but it is not fast enough. This should not have happened to you, Ava, or the thousands of other kids I am hearing about. Enough is enough. I love you, baby boy. I love you. I miss you. I am so very sorry. I hope you are safe. Sweet dreams, baby doll.

xoxo