Posted by rockstarronan on January 23, 2013
Ronan. Hi. I love you.
I’ve still been really tired, but really busy. I’ve tried to take it easy. I had dinner last night with Tricia and Marisa. My two oldest friends from my oldest most perfect life that no longer exist. It has been hard to be around them since going through all of this. Hard because I know they loved you in a way that a lot of people didn’t just because of the fact that they knew you so well. It’s hard to see that raw pain in their eyes that looks a lot like my own. They both know about this baby. Marisa was one of the first people I called to tell. She is my go to gal on all things related to pregnancy. She was ecstatic over the phone, but it was even better to see her in person. She gave me a long hard hug with tears in her eyes. She gave me the listen here talk which consisted of things like, “Now, I’m here to tell you, we need to be a part of this baby. You can’t push us away anymore. I am here to say, I will stalk you at your doctor appointments, your house, the hospital…. you have to let us be a part of this. We all need this. This is such a good, positive thing for all of us. Our friendship needs this. We are not going anywhere. We are taking over.” I giggled, got teary eyed and quietly listened to my friend do what she does best which is be a jewish mother hen/best friend. I told her I knew. That of course I would let them be a part of this. I miss them so much. I told Marisa I know she has stepped back and given me my space, but I never thought she went away. Believe me. I know what it feels like to have people go away, Ro. A lot of people that used to be in my life, have. I don’t know if it’s due to the uncomfortableness of this. Due to not knowing what to do/say/or how to act. Due to me pushing. Or a combo of all things. It doesn’t really matter. All that matters is I know who is here for the long haul. The good the bad and the worst. I’ve always known our Little M was in this for everything, no matter what. I have missed my friend so much. It was a 3 hour dinner that was very much needed. I could have stayed tucked in our little table all night long with the two of them. It was a really, really good dinner. They talk about you so much, too. They are not afraid to speak your name. I so need that. I means everything to me.
Your Liam asked me today how a baby got inside my stomach. Ummm…… this was is not a story I am ready to explain to my 9-year-old. I just reacted with the first thing that came to my mind which was, “A stork.” Liam looked at me and goes, “What’s that?” Crap. Kids don’t know about storks these days. I said, “It’s a bird that leaves a baby on the porch of the house.” Liam rolled his eyes at me and goes, “That’s not true.” “You’re right, that’s not true,” I said. I then responded with, “I asked Ronan for a baby. I told him I thought it would be really nice for all of us if we could have a baby in our family.” Shit. I hope this works I thought to myself in my head. Liam just looked at me and goes, “O.k. That was really nice of him to do.” YES! I smiled at your brother. I couldn’t believe that answer worked. Saved by your Romazingness once again.
Holy hell. I am so glad this secret is out. I have hated keeping this in. It’s a breath of fresh air to be able to talk about things on here! I was so nervous to post for some reason. You all are the SWEETEST. Your kind words have truly made my night. Thanks for all the support and love, with everything. I can’t believe I have not gotten any nasty comments yet. That NEVER happens! It’s nice to know that the kind-hearted people out weigh the mean/sad people by far. You all are truly the best. Oh, and thank you to the man that came up to me today at Chelsea’s Kitchen. He was someone I didn’t know, but said he recognized me and wanted to tell me how this blog has changed his life and made him such a better dad. I never get dad’s that come up to me! It’s always moms. It meant so much to me and truly made my day. Thank you Chelsea’s Kitchens stranger:)
That was yesterday, Ro baby. Today, is here and I am beat. I woke up today, so tired. I didn’t sleep well last night. Too many things swirling through my head. I had another golf lesson today. My giant boobs are becoming a handicap and interfering with my game. Just when I was getting really good…. my professional golfing dreams might have to be put on hold. My sweet instructor tried to convince me otherwise though. We talked a lot about you today and this new baby. She said she was sick to learn of all I had been through. I told her I knew, that everybody was sick over the loss of you. My lesson was great but my energy was zapped after I left there. This baby does not like the heat. I came home to try to rest. My phone kept buzzing with text messages and emails. I had too much to do to slow down for the afternoon so I sucked it up and got a lot of things done. I was on my way over to see Katie when I pulled over to stop at A.J.’s to get us some drinks. I got a text message from Robyn, Ezra’s mom who has now become someone that I treasure so much, that knowing she is in pain, the same way that I am, destroys me. Ezra’s fourth birthday is this Friday. She should be planning it not thinking about what she is going to do, on his birthday to survive the day. She should be playing with her twin 2 and a half years olds, not just one of them. We both decided that life should not go on after this. I told her this life is a death sentence, where we are forced to stay alive. I went to go into the store, reached for my wallet and pulled out a bag of your ashes instead. This caused me to go into complete hysteria and have a total breakdown in my car where I couldn’t breathe or stop screaming and crying through my tears. I forced myself to go into A.J.s. I didn’t have my sunglasses to hide my blood-shot eyes but I didn’t care. Iced Tea’s or bust. I made it out alive, but I went in armed with my FUCK YOU stamp that my friend from Australia, Ali, sent me. I was going to stamp it on anybody that got the way of a grieving mom who should have been carrying a 5 year-old on her hip, not his ashes in her purse.
I spent the rest of the day with Katie and a got a surprise visit from Mandy Bee who just happened to stop by The Garage while I was there. We caught up and made some plans for a little event we are doing on September 20th. I’ll talk about that later as I am wiped out tonight from this day. G’nite baby doll. Sweet dreams. I miss you. I love you. I hope you are safe. Have a good party with Ezra on Friday. I know you two will do something extra spicy. I miss you so much.
Posted by rockstarronan on August 29, 2012
Calling All RUNNERS! The Ronan Thompson Foundation is an Official Charity of the Arizona Rock ‘n’ Roll Marathon! Want to be a part of the Rockstar Run on Jan 20, 2013? $165 entry fee and $1,000 minimum fundraising requirement (easy!). We’ll register for you and even get you a fancy fundraising page. Details to come! You can do the half or the full. Thank you for all the love and support! Let’s all run for Ro and these kids, together!!
Posted by rockstarronan on August 12, 2012
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.
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.
Posted by rockstarronan on May 26, 2012
The update is we are coming home tomorrow. I am scrambling, have been scrambling for a couple of days now, mentally, I was not ready to go back to Arizona. I feel like I’ve taken these past couple of days to get my mind wrapped around coming home. I feel like I am ready now. Who am I kidding, I am not ready at all. Everything about this trip has been so positive and I am beyond sad to leave earlier than expected, but we cannot fight the COG on this. The COG is the Children’s Oncology Group and they are who is charge of Ronan being on study. We have to stay on study, we want to stay on study, because we really are hoping that Ronan is going to be chosen for 2 stem cell transplants, instead of one. If we go off of study, we won’t have any chance of getting a second transplant, and after the research we’ve done, we really feel like this will increase his chances of survival. So, in a nutshell, the COG is bigger than the doctors and we just have to follow their rules. Hard for me because I really just want to give them the middle finger. I just want what is best for Ronan, and as I said before, I feel like letting him heal fully here is what he needs. But things change and now we are coming home.
Also, Ronan has developed an infection in his broviac line. He has been spiking fevers the past few days and they thought it was just due to surgery, but they tested his blood and one of the cultures came back positive. This is a minor bump in the road considering all we have been through. It is something that Sloan has under control and has been reassuring me that it is something that is treatable with antibiotics. Well, they started the first dose of antibiotics last night and as I was holding Ronan, I looked down and his entire head was red and he started itching it like crazy and screaming bloody murder. I looked at Mace and Tricia who were both white as a sheet and said, “Call the nurse, he’s having a reaction.” Sure enough, I was told, he had developed what they call “Red Man Syndrome” to the Vancomycin. The nurse came rushing in and told me they would start him on Benadryl to get rid of the reaction. I was pissed. I wanted to know why in the world I wasn’t told that this could possibly happen, and I was informed that it happens to about 60/70 percent of the kids that get this antibiotic. Gee, I wish somebody would have told me this little piece of information, just so I could have been aware of it instead of being scared to death because I did not know what was going on with my child. What if he would have stopped breathing or something?!? We were soon able to get it under control and thank god for Dr. Maze, who I was texting during this entire thing. He took the time to calm me down and explain everything to me. We had a not so good nurse last night who did not seem to know anything and seemed very nervous about all the questions that were flying her way. Other than that, the nurses have been incredible and so has the care. Last night was rough but we got it under control and were able to get Ronan settled down and back to sleep. His fevers have stopped and we will get one dose of his antibiotic tomorrow at 7 a.m. with the Benadryl before, which takes 2 hours. We will hop on our flight after we see Dr. La Quaglia and as soon we land in Phoenix we will have to go right to PCH so we can check in and get Ronan’s second dose of the antibiotic. He has to have it twice a day for about 10 days. All of the doctors here have reassured me that we can still start his chemo, even with the infection, as long as his fever does not come back. I’m even more mad about having to leave here now. How mad is Ronan going to be knowing that we are going home, but don’t really get to go “home” and he has to stay at PCH for about 10 days. It would have been so much easier to stay here. STUPID COG. If you can’t tell I’m a wreck. My anxiety is through the roof and my nerves are shot after these past couple of days.
I sent out an email yesterday to somebody who shall remain nameless, asking if there was any possible way they could fly us privately back home. Part of my panicking was the thought of putting Ronan on a flight. Within the hour, I got an email back, and then a phone call saying, absolutely, they could get us back to Phoenix on their private jet. No worries that is was so last minute, no questions asked, they were just so happy to help. I cannot say thank you enough to you, SB and Mr. B. You have just given us such an amazing gift in helping with keeping Ronan healthy. Thank you from the bottom of our hearts and I can’t wait for the day that I can personally thank you with a big hug and one of Ronan’s famous smiles. We are beyond grateful that there are such kind people in the world out there like yourselves. O.K…. SB….. I know you said no more thank you’s so I’ll stop. After one more huge, THANK YOU!!!
Last night was one of the most heart wrenching/fucked up/hilariously funny nights that I have ever had in my LIFE. Tricia and Macy (who now by the way are in LOVE with each other;))stayed at the hospital with me until about 1 a.m. Macy picked up Thai food (which was to die for) and we got some bottles of Sangria to go and smuggled them into Sloan. While Ronan slept, we ate, talked, laughed, cried, and laughed some more. Macy and Tricia got to see what my world is like on a day to day basis. Macy was bawling half of the time which in turn made me cry and our poor sweet roommate…. she had a crisis with a bloody nose, throwing up blood, and she was scared to death. She is the most beautiful 11 year old girl that I have ever met and she is fighting bone cancer. She has had 17 rounds of chemo and surgery on her leg. It was a privilege to share a room with her and her amazing mom. I tried to help with the bloody nose situation, since I have been there many times with Ronan. I went over and I tried to explain it to her and to calm her down but I wanted to just curl up and die. Her mom was on her bed holding her while her little girl sat and told me how tired she is of being sick, how much pain she is in and how scared she is. I started bawling, and when I finally went back to my side of the room, Tricia and Macy were bawling as well. In the 3 days that we spent with this little girl I heard her talk about all the things she appreciates in life and how she is so thankful for her “good days.” She is wise beyond her years and stronger than most adults. One of the most beautiful, inspiring, souls I have ever met with an amazing family who will no doubt, get her through this. Tricia, Macy and I bonded over so many things last night and Macy is now without a doubt, a friend for life.
I got all of our stuff packed up today while Tricia stayed at the hospital with Ronan. I came back to Sloan and Trish ran out to do some things. She is probably in the middle of cleaning our room at the RMH so we can be all ready to go tomorrow. Thank you, TT~ I don’t know what I would do without you. Macy came by to say good-bye to us and left me with a card. After she left, I opened it up and started to cry just from the words on the front of it. I’m an emotional wreak tonight. Ronan is depressed and told me tonight with his lip quivering, that he misses his brothers so much. Tomorrow is going to be awful. All Ro wants to do is to be home with Liam and Quinn but he can’t. I’m not even sure that the boys’ can come to PCH to visit due to it being RSV season. UGH. I don’t even want to think about how much Ronan’s heart is going to break going from one hospital to the next. Poor baby.
Tonight I say good-bye to New York with a heavy heart. I’m scared to go back to reality and back to my real world… I’m scared I’m going to lose the Maya that I have found while being in this city. As crazy as this sounds, this trip was one of the best trips of my life. Knowing that Ronan came here with a big job to do and it was so successful and positive, is maybe why it seems so hard to leave. I’m sure most of this is just my anxiety speaking. It will be wonderful to be home surround by my sweet twins, amazing husband, family and friends. I have missed you all dearly. I’ve just got to figure out how to keep this momentum going that I have found in this city. I will forever be in love with New York, Sloan Kettering, Dr. La Quaglia, Dr. Kusher, and the whole team of Neuroblastoma doctors. I will be back here next year to run the Marathon with Ronan in remission and waiting for me at mile 16. I love you New York! I feel so blessed to have had you heal myself and my baby!!
Goodnight world. Thanks for all of your love and support!!!
Posted by rockstarronan on January 9, 2011