Mandy the Owl, Ben with the Bald Head, and Bret the Rockstar

Ronan. I guess I’ve had a hard couple of days. So many things have happened. Everything seems to be moving so fast, yet so slow. I’ll have to catch you up on some things since it’s been a couple of days since I’ve written to you. I drove up to Sedona on Tuesday to see Dr. JoRo. I could have seen her here in Phoenix, later this week but I honestly like the drive up there and back. It’s my quiet time in the car. I don’ talk on the phone. Sometimes I listen to music. Sometimes I don’t. I am always thinking of you. I cry a lot. Here in Phoenix, I feel like I am constantly on the go. It’s a race that often leaves me exhausted and I don’t get to sit and be quiet much. I am still trying to find that happy medium of grieving for you and letting my self being absorbed in the pain; without slitting my wrists. Sometimes it hurts so much that I’m scared to sit and just let myself just be. Sometimes I don’t think I can handle the pain. I worry about what will come of it. My mind can slip into a very dark place, with the blink of an eye.

My time with Dr. JoRo was long. Grueling. Good. We talked about everything. I always find myself staring up at your pictures a lot that she has on her shelf of the thousands of books that she has read. I cried a lot. She cried too. We listened to a song together as the tears slid down both of our cheeks. There was a lot of crying. There was a lot of fucking fuck words used by the both of us. She is helping me with a little research as far as trying to figure out who we want to help fund treatments for Neuroblastoma. I don’t want any of this money to go towards a fancy hospital building and advertising. I don’t want this money to go towards building a wing of a hospital with your name on the fancy door. FUCK FANCY. This money has to go directly to the RESEARCH aspect of this disease. This money that we are trying to raise will go to the team that we believe in with our whole hearts and souls. The team that we feel will up the survival rate and ultimately, find a cure. This has to be a doctor/facility that is going about things differently. Because obviously what they are doing for this disease is NOT working. But they keep doing the same thing, over and over. If you survive Neuroblastoma, it’s by luck of the draw and nothing more. I have 2 doctors I am interested in. I’m putting their names out there tonight. Dr. Giselle Sholler and Dr. Yale Mosse. I know Dr. Mosse from Chop. She is the one who has a little piece of my heart due to her passion for finding a cure for the nasty disease. But her hands are tied by the COG. I am not a fan of the rules she has to play by. If anybody wants to throw info my way about Dr. Sholler, or anyone else, feel free to do so. I’ll take all the help I can get. I want to meet with them both. I want to see the evidence behind what they are doing, and why they think it is going to work.

Dr. Jo knows you shouldn’t have died. But you did. She is going to help me every way she possibly can. She is doing more than just saving my life. She is going to help me fight this Childhood Cancer nobody gives a fuck, BULLSHIT. We talked about your Foundation. She tried to tell me I didn’t have to do any of this if I didn’t want to. I looked at her, gave her a half-smile and told her that it wasn’t my choice anymore. I told her I am not choosing to do anything. For me, this is not something that I am choosing to do. It is something I HAVE to do; just like I have to breathe, to stay alive. She looked at me and said she knew I was going to say that, because she felt the exact same way, 17 years ago when her baby girl died and she was locked in a closet, going through the Yellow Pages, trying to find someone to help her get through losing her baby girl. There was nobody. She almost died from the pain. She swore to Chey if she lived through it, she would change this and help other parents. The MISS Foundation was born because of her pain and because she survived. She survived, Ro. And now look at all the people she is here, helping. She is saving the lives of so many parents who feel so alone. She is a walking billboard for surviving one of the worst thing that can happen to a person, but she still managed to come out the other side even more beautiful than before. Stronger. Smarter. Wiser. It changed her in a way that a person never wants to be changed. As sick as it is, the death of her child has turned Dr. Jo into someone who fucking lives on this earth, walking on water. I know she doesn’t feel this way, as she is so ridiculously humble. But this is the way I see her. To me, that woman walks on water while cussing up a storm which makes me love her even more.

After I got home from a really long Sedona day, I had a meeting to go to for your Foundation. We had to choose some new board members. As of now, our board is really small and intimate. I want it to stay this way. I need the people on it, who have walked through hell and back with me. Who you knew and loved because they are family. My sisters. The board meeting was VERY formal which was so weird to me. I got about half way through it but then my head started spinning. I lost it. In the middle of everything, I buried head on the table, in my arms, and just started bawling. I felt the hands of Fernanda and Tricia rubbing my back. I stayed that way for a few minutes. Then I just got up and bolted out of the restaurant, crying, crying and crying. Just like that. You know what I wanted to do? I wanted to run really, really, really far away. To the most dangerous neighborhood in Phoenix. I wanted to run out in the middle of traffic to get him by a car. I decided the boots I was wearing were too cute to ruin, so I sat down on a bench instead. I sat and soon Fernanda came and sat down with me. She sat and held my hand and pressed it up against the locket that I gave to her with some of your ashes in it. She kept asking me where I was. Where my head was. I couldn’t even answer her. I just sat and cried. I think we sat there for about 20 minutes. I ended up trying to gather my thoughts. The fact that I was sitting around that table last night, talking about you, like you were a business made me sick to my stomach. It was too much for me to handle and I went into it, completely blindsided. I felt like I was being beaten to a pulp. I felt like my insides were being ripped out. I felt like I wanted to just die. I went home, after that meeting, looked at Warden Woody and said, “Give me a fucking Ambien.” He tried to argue. I wasn’t having it. The running off of 5 hours of sleep, for the past 3 days was caching up with me. After yesterday and last night, I couldn’t do another night of tossing and turning. I popped that little Devil and it was lights out until 7 a.m.

Today. Groundhogs day, all over again. Met a Lovie for coffee. Cried. Our lovie, cried too. Talked. Cried. Made some promises. Took a drive with her. It felt nice. Ran to meet Miss Mandy Bee for lunch. She came wearing her Owl SPIRIT HOOD because she is that crazy, that she thinks she is a Goddamn Owl, in real life. And we are both that weird that we like to wear our animal Spirit Hoods, everywhere, just the way you and I did. I’m wearing yours now, as I sit here and write. We sat outside at America’s Taco Shop. Mandy had some exciting news about getting the word out there about you. Just as we were in the middle of talking about you and I was starting to tell her what bullshit this is, that you died of this disease because nobody’s voice has been powerful enough to make the fucking world stop and LISTEN. Why the fuck does this have to be me? This should have been somebody else, 5 years ago and then you would not have to be fucking DEAD. I started to get really upset. I started throwing a pity party to Miss Mandy Bee. Why me? Why him? I don’t want this. I want this to all go away. I want him back. I don’t want to stay on this earth. I want to die. I don’t want to fucking do this. Just as I was saying those words, Ronan…..He appeared. Outside. On the patio where Mandy Bee and I were. Ben. What the fuck. Somebody is clearly messing with me, Ronan. Ben with the Bald Head. I looked at Mandy. I seriously thought I was dreaming. Mandy watched me, she grabbed my hand. Do you want to leave, she asked? No, I said. His Dad came and sat down and said Hello. His mom came out next. She looked at me and said, “You’re Maya, right?” I said indeed I was. She asked if I remembered her from the clinic. I had forgotten her face. But I remembered Ben’s. I stood up to give her a hug. Her husband hugged me as well. We sat and talked. They looked sad. They looked scared. Ben looked beautiful. I wanted to eat him up. I wanted to spend my whole day getting lost in his dimples while kissing the top of his bald head. His mom kept saying she felt like they were upsetting me. I was upset alright, but it wasn’t for the reason that I think she thought it was. I was upset because just 10 minutes before they arrived, I sat and bitched that none of what I was doing, mattered because you are gone. I gave into the selfish Maya that sometimes comes out because the bottom line is, YOU ARE DEAD. But Ben is not. Ben is here. Ben is still fighting. Ben saved me today. I know that was a sign from you, Ronan. That was too much of of coincidence, for it not to have been. That was your way of communicating with me. That was your way of saying, “Hey Mama! Don’t give up! I’m right by you, helping you. Mama, you have to be the loud voice now. You have to take everything you are doing and keep going, for all the other kids out there. For all the other kids who deserve a future. For me, because this is what we were meant to do, together.” Ben was you today. And Ben was exactly what I needed at that exact moment. I know it was you. Thanks, Ro. I’ll keep on truckin’ until the world turns into a sea of Gold for SEPTEMBER. But PURPLE, for you. Ben gave me a big hug goodbye. I kissed the top of his head. It reminded me so much of yours.

I spent the rest of the day, lost in what had happened at the Taco Shop. I ran over to Katie’s store. I was sitting at the counter, with my computer, doing some things. Christy and Katie were behind the counter, working. Pandora was on, as always. As I was sitting there, one of your favorite songs started to play. Angus and Julia Stone, “Big Jet Plane.” I sat there, stunned. I looked up and said to the girls, “This was Ronan’s favorite song.” I covered my face and started to cry. Christy asked if I wanted her to turn it off. I told her no. About halfway through the song, my phone rang. Of course it did. Was this you too? How does this always happen, every time I seem to be having a really hard moment? Our favorite lovie always knows when to call.

I picked up. I said one word.


“Why are you crying?”

-how the fuck does he know i’m crying?? all i did was say hello.

“I’m not. I’m fine. I don’t know.”
– i start to cry, harder.

“What’s going on? Yes, you are, cut the bullshit and tell me what’s going on. Please.”

fuck. why can’t i ever pull the wool over our lovie’s eyes? i don’t want to say why i’m crying. but i did.

I think it went something like this……”Because I’m sad. Because of the song on the radio. Because of the board meeting where Ronan is a business. Because I miss him. Because of Ben at America’s Taco Shop. Because of Thanksgiving. Because I have to fucking survive Thanksgiving. Because I don’t know how I’m going to get through it. Because I haven’t slept. Because I want him back. Because I JUST WANT HIM BACK.”


“I’m sorry, darling.”

I don’t remember much more of the conversation. But by the time it was over, I had stopped crying. It was enough. It was like an invisible hug, from you.

I left to pick your brothers up from school. Quinn had a sore throat so I had made him a doctor’s appointment earlier in the day. I stopped to feed your brothers, before our appointment since we didn’t have time to go home. I went into Jack and the Box while your brothers waited in the car. It was pretty empty. There was a man at the counter. You could tell he was homeless. He was dressed as nice as he could possibly be. His shirt was tucked into his pants. He was older, probably in his 60’s. He was pulling out coupons to pay for his 3 dollar meal. He smelled awful. He needed a haircut and a shave. He was hungry. I could tell he was so very hungry. I waited my turn. I watched this man with the kind, sad eyes. He didn’t seem to notice me. I watched as he paid for his food. I watched the way he sucked down his drink like he had not had anything to drink, in days. I’m ashamed to say, in my old life I probably would have felt sad for this man, told myself you are so lucky, Maya. But it is very possible I would have just looked the other way while counting my blessings. Not today. Today, I wanted nothing more but to take this man home. Feed him. Let him shower. Give him clean clothes and a bed to sleep in. I wanted to sob for this man. I wasn’t sure what I was going to do, but I knew it wasn’t going to be nothing. I paid for my food. I watched the man, standing at a table, putting his coupons away. I took out one of your cards. I wasn’t sure how do approach this man, as I didn’t want to offend him. I walked over to the table that he was sitting at. I gave him one of the cards with your picture on it. I handed him a 20 dollar bill. He looked at me and said, “No. No. Really? Is it that obvious?” I simply said, “No. Not at all. This is not from me. This is from my son. He died of cancer. He wants you to eat.” The man tried not to accept my 20 bucks. You could tell he wanted it, but you could tell he was also a man who still had a pinch of dignity left. He told me thank you. He told me that I should save my 20 dollars and give it to the humane society. I told him I didn’t want to save an animal.(sorry. i’m am a animal lover. but these days, kids with cancer just tug at my heart a little more. today, this hungry man, tugged at my heart a lot more) I told him to please take the 20 bucks. I told him to go and do something kind for someone else. He promised he would. I believe him. He told me, that he had just spent his last 3 dollars, on his meal. I am such a skeptic of human beings, Ro; but not today. Today, I believed this man. Today, I believed in the human spirit and I believe that, because of you. It’s days like today that I know that you are making me a better person than I could have ever imagined. It’s days like today that I realized that I need to stop fighting all the little gifts you are leaving me because I know they truly do exist. And I know I am worthy of receiving them. I know they won’t bring you back but I know they will keep you alive.

I have to go now, Ro. Too tired. Too sad. Too much. I love you. I miss you. I’m sorry. I hope you are safe. I love you to the moon and back, baby boy.

One last thing. But not a little thing. A HUGE thing. Bret Michaels. Bret Michaels the kick ass Rockstar who is the genius behind the band, Poison. Bret Michaels went on the Regis and Kelly show today. He wore your F U Cancer bracelet, Ro. He is spreading the word about you. Can you believe this???? I am in awe. We so need people like this, behind your cause. We so need a voice for Childhood Cancer. Education=Awareness and Awareness=CURES. People have to start listening. Because of what that man did today, they are going to listen. I have a feeling the gorgeous woman in his life, had a little something to do with this as well. It takes a strong family united, to get things done. Today, they did this, for us. For YOU. For all the other parents and kiddos out there who have been forced into this nightmare. For all the parents and kids out there who are helpless and so scared. He helped us all today and I wonder if he has any idea, how much it means? How this could really get the ball rolling and start changing things. Because babies/kids/teens need to stop being fucking MURDERED by Childhood Cancer. So Mr. Kickass Rockstar Bret Michaels. Thank you from the bottom of Ronan’s wild and free heart. I know you know that all good things, truly are wild and free. You are an amazing man. And gorgeous Kristy. Thank you for being the raddest wild and free mama, behind this man by doing something so selfless and kind. You two, are amazing.

Ro baby. Did you ever in your life think that for only being almost 4, that you would have so much power? I always knew this. Your beauty alone moved mountains while you were among the living. Now look what it’s doing and you’re not even here, Ro. You are that special, beautiful, and magical. You will always be mine. And I will always, be yours. Forever. I love you.


33 thoughts on “Mandy the Owl, Ben with the Bald Head, and Bret the Rockstar”

  1. thank you for sharing your thoughts, words, wisdom, pain, love, anger and most of all your son with somebody who has just fallen into this dark abyss of childhood cancer.

  2. It was great to run into you yesterday Maya. Ben suggested the Taco Shop. We actually drove to another place on 11th Ave & Grand Ave, but it was closed, so we turned around to go to the Taco Shop. Yes, more than a coincidence! Seeing you was a blessing for me. Beaten down by another doctor visit of bad news, I quickly got through my tears when I got home and got on the phone to try to talk to different doctors. So, Ronan using Ben as his voice, helped both of us today. Maybe it’s all the Star Wars Wii we’re playing.

    Ben was a little disappointed that his bracelet didn’t glow in the dark. I may sound like I’m complaining, but just want to make sure that I pass on any potential messages from Ronan.

    Maya – you are making a difference in this horrible childhood cancer world. Without your blog, I might not have come up to you (which later helped pull me out of my tears) and I certainly wouldn’t have known about / posted the petition on Ben’s site. A couple of small things, but they add up and roll into big things.

    1. Nooooo!! It didn’t glow in the dark? Did he put it under a light first? Try that. So glad I ran into you. Ronan’s work at it’s finest. Please let me know if there is anything I can do. Does Ben have a webiste?? I’ll put it on my Blog for you to get the word out about your little man who reminds me so much of Ro.

  3. Maya,
    I hope you do read this comment. I tried to email you too, but I know how overwhelmed you are. If possible, I’d love to meet you soon too. There is a doctor, his name is STANISLAW BURZYNSKI. He is in Texas. There is in fact a movie about him, which is streaming on Netflix, it’s called Burzynski. You do need to see it, but you CANNOT watch it alone. RoJo needs to be with you, or a couple good friends or Woody. I don’t know if your heart can break more, but if it’s possible, this movie will do it. HOWEVER, this doctor has been treating every cancer out there extremely successful, including incurable brain cancer in children.
    I will email you privately with the same message. I would like to share this information with parents of all the children with cancer, especially the ones you know personally and talk about in your blog. THERE IS TRUE DOCUMENTED AND SCIENTIFICALLY RESEARCHED MEDICINE AVAILABLE TO THEM RIGHT AWAY.
    Please, consider this…

  4. Ronan saved me yesterday. I sat at home alone, as usual, crying. I did not know how I was going to get through the day. The pain was so deep. I prayed to Ronan to help me put my big girl panties on and do what I should and would. I did and well. It was him, no doubt. I came home and saw this pic and let it all out. I made some difficult decisions and am okay with it. Maya, I would have done the same thing with that man. I have always been that way. I can’t sit back and watch others suffer without trying. I wish I knew you better. You are my son and my hero. He thinks you and Ro are the shit. He is an old soul. He wants to come play with the boys when we come home this summer. Sweet.

  5. So many amazing things happening around you through sweet Ronan…running into Ben, at the EXACT time, the EXACT place, was no doubt in my mind something that Ronan orchestrated. And Bret Michaels wearing your bracelet…mountains are beginning to be moved courtesy of your sweet little boy with the bluest of blue eyes ever. It was so good meeting you the other night…hoping you got my note, just wanted you to know how moved I was by that brief meeting we had. Praying for you always! xo michelle

  6. I wanted to chime in about Burzynski. I have watched the documentary – as Kristina mentioned don’t watch it alone. Parts are very hard to watch. But he has done some amazing things for all cancer patients – many cancer patients, including different forms childhood cancer. It is also eye opening – the politics of medicine in this country. So much of it is about the big dollar. If I, or any of my family members, got cancer I would seriously consider heading down to Texas for advice/treatment.

    Suzanne Somers wrote a book about cutting edge non-toxic treatments and the doctors behind them. “Breakout”? “Breakthrough”? Although written by a celebrity, it is filled with interviews of these doctors who are going against the grain and successfully treating extremely sick patients who had been sent home to die – without using toxins to do it! Amazing and hopeful stuff.

  7. You are making a difference in so many ways. So proud of where you have gotten. Most people in your shoes would be lucky if they made it out of bed. I think DrJ and you posey of mafia manias are getting you going. Do take lots of time for yourself and your fabulous family. As always we send our love thoughts and prayers to your entire family.

  8. You are absolutely an amazing person! You & Ro will change this world, I guarantee you! Do you sell your bracelets? If so, I would love to know how so I can order some.

    Thank you for sharing your son with us!

  9. ❤ a most amazing entry today. Thank you for sharing. It's like reading my own thoughts from 16 years ago. I know right now there is no true or sustaining comfort in knowing that others have been there. I hope you realize how much your words hold meaning to so many other mommies, like you, who are still on the path of healing…like me. ❤

  10. Hi Maya,
    Just wanted to let you know in case you werent aware but I just noticed that Mike & Ike the candy donate to childrens cancer through Alex’s Lemonade Stand not sure what they are but thought it was something you would like to no or maybe check them out . Hope your having some ok days …

  11. Love Ben, love Bret and that Mandy dresses like a wise owl. I so wish that I knew more about doctors doing research. Part of me seriously considered going back to medical school after Sawyer died. I wanted to do the research myself and try to understand at least medically.

    It is so unimaginable to me that so many children die and there are no answers or cures. I want to the world to change. You and Ronan are changing the world. I want to help. Thank you so much. Take care. Fuck cancer.

    1. I had to read your story after the last post. You have such amazing grace. I am so sorry about your boys. I can’t imagine it happening not once but twice. The world could learn from your strength. And yes fuck cancer and fuck the death of babies. You are in my heart now too.

  12. Maya
    As you are doing the research make sure you are looking not only at new and breakthrough, but there is also merit in demonstrating advancement and new findings. Participating in COG doesn’t mean your research is limited by it.

    Whoever you end up supporting it will be worthwhile because you’re doing your homework and that is amazing.

    Press On!

  13. Maya this post broke my heart, made me smile, excited, laugh, cry… After my husband and I went to Ro’s Fashion Show we went to dinner at some little fancy Scottsdale restaurant. There was a little girl, probably four years old, eating there with her mama and possibly grandma. She was in her pajamas and had big fluffy slippers on. She was completely bald and precious. I couldn’t believe that she was there so late eating right next to me after the fashion show. It felt like more than a coincidence. These babies are out there and they need a voice. SUCKS that it is yours and for that I am so so sorry… I wish it wasn’t, but thank you.

  14. Maya im getting excited cuz soon ill be sending u ur xmas gift. Im not rich but its a very decent donation 2 ros foundation. I know u will do something amazing

  15. You haven’t posted in a while, I hope you’re doing okay! I think about you and Ronan every day. Keeping you in my prayers Maya! Much love to you always, xoxo…

  16. Worried about Inca right now. Thinking of you, Maya and Ronan’s many Lovies as you all endure a holiday with your Ro in your hearts and not your arms. FUCK FUCK FUCK. Cancer sucks and it can really just fuck off.

  17. Maya and family,
    I came across your blog today thanks to PalmerCash t-shirts. Wow. I was speechless and had to keep from crying here in my little cubical. This blog has genuinely touched my heart in so many ways. What a beautiful, beautiful little boy Ronan was. I was diagnosed with a soft tissue bone cancer at age 15, but still had to deal with the children’s hospital and was considered pediatric until the age of 21. I met quite a few children like Ronan, with a variety of different cancers that never thought twice about pain or lethargy like we would. It’s amazing to think about how those kids empower you to be your best in the worst of times. I’m now 26 and continuing to battle with an incurable disease. Reading this blog has taught me a lot in just a short time about looking at my priorities again, and seeing exactly what I have in my life. On the eve on Thanksgiving, I’m thankful for the gift of this blog, the gift of wanting to meet you all, and the gift of the pictures I’ve viewed today. When I have the money together, you can bet that I’ll give generously to your foundation, and give a lot of kids a better chance of living to the fullest for years to come. Happy Thanksgiving to you all, God bless you, and thank you again for this wonderful gift 🙂

    Danielle <

  18. I haven’t commented because I don’t know what to say. And I know the feeling of not knowing what to say because I have a brain tumor. I’m 22 and I can’t open my fucking eyes without tape because the tumor is pressing on my 3rd nerve. They tell me I’m going to live, that this isn’t terminal. But we know that living is subjective. I’m angry Maya. I had to endure 28 radiation treatments and the hardest part of it was seeing little bald babies going in to the same shit I was. I know that this isn’t right. I’ve lived only a fraction of your pain, but know that I too have seen the “other” side of life. The side that waits for MRI results. The side that gets stared at. The side that is so young, but knows far too much about how ugly life can be. I think about your sweet Ronan often. This isn’t fucking fair. I am so FUCKING SICK OF CANCER I can’t even stand it! I promise you that I will do everything I can to help eradicate this bullshit. It was hell at 22, I can’t even imagine it at fucking THREE. I am so sorry. -Kristen

  19. Thinking about you today. Sending all the love and prayers I possibly can. I hope you are surrounded with a lot of people you love today. Happy Thanksgiving to all of you!

  20. Happy Thanksgiving to you and your family, Maya. I know how hard the holidays are. I know how you can be surrounded by a room full of people and only notice that one missing person. I know how hard it is to be in a room full of people who are celebrating a holiday and you want to punch them in the face. How dare they be happy, right? Don’t they know your heart is missing? Ripped out. Stolen. How the fuck do they expect you to do anything on these days?
    I know my own pain of loss is different from your pain of loss. No one gets it but those who have suffered it. I’m sending you good wishes and a giant hug. Fuck people who think you should “just get over” it. Fuck people who think they understand your special relationship with your love. Only you know.


    ‎”A strange passion is moving in my head
    My heart has become a bird which searches in the sky.
    Every part of me goes in different directions.
    Is it really so that the one I love is Everywhere?”
    ~ Rumi

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