You belong with me

Ronan. Did you see us tonight? The 4 of us, without you? It’s hard to go to places, just the 4 of us now. I’m always looking for your big blue eyes, I’m always wishing I was scrambling to keep up with your busy little feet that never stood still. I am always expecting to hear your giggles. That Taylor Swift girl. What a girl. I was able to take your Daddy and brothers back out to her concert tonight. We were whisked off for another fairy-tale night. Your brothers were so excited. Your Daddy too. It was beautifully sad, without you. We were taken back in the middle of her concert, to the middle of the venue. The spot that we went last night where Taylor sits on a tree and it spins slowly around while she purrs out some songs. We were inches away from her and her pretty purple dress. She was singing one of her songs, “Fearless.” She locked eyes with me right as those words came across her lips. She held them there until I got teary eyed. I got her message loud and clear. She knows what I have to do. She knows what I’m about to do. All while being fearless. I made a choice to live my life that way, after you passed away. It’s part of my rebirth. I know you know that when you died, I died as well. I’m now here, trying to figure out this life all over again, like I have just been born again. I’m not sure what I’m doing, who I am anymore, but being fearless is one of the character traits I have adopted. You died. I have nothing in my life, to ever fear again. My worst nightmare, came true and I’m still here kicking and fighting. The fact that I have made it this far, means this new life, is only worth living, by being fearless.

When Taylor exited the area where she was singing, she grabbed me, hugged me and told me she was so glad we could come again. I smiled and told her thank you. She bent down and kissed Quinn’s cheek and left a big red kiss on his cheek. There is nothing better than red lips. They have always been a favorite thing of mine. She bent down and did the same thing to Liam and then looked up at your tall Daddy. She hugged him and told him she was so glad he could come, and that she was so sorry. I saw the tears in your Daddy’s eyes. He grabbed my hand and squeezed it tight. We walked back to our seats with our hearts heavy from missing you so much. We stayed for the rest of the concert. Quinn has his first crush. Woody is smitten too. He loved everything about her and he is such a tough sell when it comes to musicians. He loved every aspect of her performance from the design of the set to Taylor’s amazing talent. As we were driving home, talking about the night, he goes, “She is clearly very intelligent.” If you know my husband, you know that is a HUGE compliment. I replied, “Clearly. Do you have a Taylor Swift crush now?” He laughed and said, “Babe. She’s a young girl.” I winked and told him those young girls are the best kind. I love to give him a hard time for being older than me, even if it is only by a few years.

I’m tired tonight, babydoll. Really tired. I’m on Liam’s top bunk bed with Quinn. He is out like a light. I’m going to cuddle up next to him. Thanks, Miss Taylor, for tonight. We as a family, had a lovely time. It’s been awhile since I’ve felt that way, with just the 4 of us. I love you Ronan. I miss you. I hope you are safe. Sweet dreams my spicy monkey boy.


A Love Letter to Taylor Swift

I don’t have words tonight. I don’t, but somebody else does. My babydoll, Ro. I turning this post, over to him tonight. Because the only way to explain the beauty of tonight, is through him. Love you, Ro. I miss you every second of the day.

Dear Taylor Swift,

A love letter to you? Yes. A love letter to you, from me because I know that angels are real. And you are one of them. I watched my mama today. I watch her all the time and I know sometimes she thinks I am not around, because she cannot see me. But after tonight, I know she will know I am always around, even when she forgets because she is so sad. I watched my mama today and she was having a really hard day. I know this because when she is having hard days, she gets really quiet. I watched her as she struggled to put one foot in front of the other today. I watched her go about her busy day, trying to be productive, but she was consumed with the thoughts of missing me so much, that she couldn’t focus on a thing. She stayed out of the house most of the day and I could tell that she was so tired from not sleeping well anymore. She was so tired and sad today. She cried a lot. I heard the things she was thinking in her head. At one point, she thought she was too sad to go to your concert tonight and thought of giving her ticket to somebody else, who wasn’t so sad. My mama is thankful though, so she was instantly aware of how rude this would be and she did really want to go to your concert. But she also felt like hiding in the hole she wishes she could dig in the back yard of ours and never come out of again. She had one of those moments where she thought to herself, I wish I could go to sleep and never wake up. She quickly checked herself back into reality and spent the rest of the next few hours, taking care of my brothers.

She sat down, on the floor of her bedroom. She got out a sharpie and some paper. She cried and she wrote you a letter. She told you things in the letter like who I am, what happened to me, about our love, how nobody is listening to the sad story of childhood cancer. She told you she feels like you are an old soul like me and how we have the same sparkly eyes. She included some pictures of me in her letter to you. She knew you were worthy of hearing my story. Only certain people are. You are one of those people. I helped her make this decision today to write you this letter. She was so tired but I kept buzzing about it in her ear. She listened. She doesn’t listen to other people often, but she always listens to me.

She got to the Jobbing Arena and was still feeling really sad. I think she cried on the drive there but she is really good at wiping away tears now in the dark so nobody notices. She went with her friend, Katie, who I never got the chance to meet, but I love her so much. She takes good care of my mama. They met the up with The Blair girls and their mama. They looked so beautiful. They were all dressed up in Tu Tu’s and my favorite color, purple. My mama’s sadness, started to lift a bit. The girls excitement was infectious. They were so excited to be there and to be meeting you. My mama threw herself into the happiness of those two little girls tonight, even though her tears would not seem to stop. Somedays she can control them. Not today. And not tonight. I wished she could have known that I was right there with her, holding her hand. Her sadness makes her forget this.

Once my mama picked up the tickets she and the girls, waited in line to get into the concert. They were late to meet you for their meet and greet. A wave of panic washed over my mama as she imagined how heartbroken the two girls would be if they had missed you. It ended up being fine and they were greeted by a really nice man who whisked them off to the back area of the concert venue. Your Dad greeted them, introduced himself and took them into your meet and greet room. What a gem. My mama watched the way his eyes lit up as he talked about you. She is able to read people pretty well and it was obvious within the first couple of minutes of meeting him, how much he loves you. My mama thought to herself, “He loves his daughter as much as I love my Ro.” It made her feel peaceful. Your dad spent some time talking to my mama and the girls. He left after a while and they were left alone to wait for you. My mama had her back turned as you walked into the room. She turned around when she heard someone saying, “Maya, Maya, Maya!” Over and over again. She turned around to find you. You were the one calling out her name, rushing towards her at full speed to give her a hug. You embraced her and told her you were so sorry. My mama was stunned to say the least. She thought you had no idea who she was or who I was. You were now standing right in front of her, telling her all sorts of things like how you have been reading her blog for over a year now. How your parents read it. How her heart is broken for all of us. You kept telling her you were sorry, you cried, you told her that I was the most beautiful boy on earth. You told her how much you love the video of me where I tell her I love her. You told her how you had never seen a mother love something so much. My mama was filled with disbelief and shock. She thinks nobody is listening to what she is saying. But then it hit her, as you were telling her how sick you were over the statistics of childhood cancer that she had posted on her blog a few days ago. Holy shit!, she thought to herself. People ARE starting to listen! Taylor Swift just rambled off how she had no idea what the statistics were for childhood cancer, until she read what I wrote! TAYLOR SWIFT!

My mama is funny like that though. Here you are standing in front of her, one of the most famous girls in THE WORLD, and she feels like you are her friend that she has known forever. She didn’t feel nervous. She felt like she was talking to someone who knew me, and really cared. My mama didn’t even try to fight back the tears tonight as she was talking to you. She let you see her pain and her sadness. There were no walls up. She’s not like that with many people. She must have felt like you are a really special girl. I watched how gracious you were with your time. I watched as you had this huge concert to perform, but it seemed as thought you were only concerned about my story and the story of these other really sick kids who my mama told you she has to fight for, for the rest of her life. I watched the way you talked about me with such passion and sadness. My mama saw it too. My mama listened as you told her how you go to hospitals and visit the Oncology floor. She was so thankful. She knows you know how something so little like that, means the world to all of those kids, who deserve to have a world, but don’t anymore. Their world is the hospital, “ass-poles,” yucky medicine, weak legs, lots of pokies, upset stomaches, bald heads, pain, discomfort, no fresh air, and being trapped inside like they are zoo animals. You are the ray of sunshine that those kids need. You were the ray of sunshine my mama needed tonight. Thank you for giving her a break from her sadness and making her smile for a few hours.

I watched my mama at your concert. I watched the as she took little Elizabeth Blaire who was all decked out in her Tu Tu and held her for hours while they watched you perform in the Pit. I watched as my mama kissed her bald head several times. I watched as the people stared because they were too shocked and sad to look away. Because nobody thinks kids get cancer. But they do. And sometimes they die from it. And they shouldn’t. I watched as my mama spent most of your concert, with tears in her eyes. Out of both sadness and happiness. The sadness of missing me, but the happiness of feeling that I am really always around. I watched as she was taken back to our time together on earth when I was sick and here and how much she loved taking care of me. She never cared if I was sick. She never got tired of taking care of me. It was her favorite thing to do in the world. It was our magical time together and we fought so hard so we wouldn’t ever have to be apart. But somebody else had a different plan. A plan that involves me not being here anymore. A plan that involves my mama missing me so much, that she will stop at nothing until people start to listen so that maybe one day, another mama won’t have to feel her pain. I know she thinks she owes this to me, to carry on my name…. but I owe this to her too. She deserves to feel happiness again. She deserves to know that even though I am not here, we can still change things together. She believes in our love so much that I know she knows great things are going to start happening. They already are. This was obvious to her tonight. The world is slowly changing because of our love. You proved this to her in such a big way tonight. Thank you for that.

Thank you, Taylor Swift for being such an old soul. Thank you reminding my mama of so many things tonight. How the power of a dream, really can change the world. As long as it is a dream fueled by love, passion, strength, determination, pain, and a bit of “spiciness.” Those are the kind of dreams that move mountains. Those are the kinds of dreams that do change the world. Thank you for being a girl, who never gave up on her dreams and who is watching them all come true. My mama’s dream is me. My mama’s dream is for everyone to know our love story, so Childhood Cancer gets the awareness it deserves. So that kids start getting better treatments and survive things like Neuroblastoma. My mama’s dream is for people to start just being better people in general because they know what is truly important in life. My mama’s dream is for everybody to follow that little list that she wrote, “How to Live like a Rockstar.” My mama’s dream is to live her life, the way I would have lived mine. I need my mama to start to heal, so she can fulfill what she is here to do. I felt a piece of her heal tonight, thanks to you and making her aware that so many people are listening. People like you, who are bigger than life and who could easily turn the other way to ignore our story. But you’re not. You didn’t. You know our story deserves to be heard and acknowledged. You took such a little thing tonight, by looking into my mama’s eyes, and telling her how sorry you were, that I died. Those two things mean everything to my mama. The simplest acts of kindness, compassion and honesty. If only our world were filled with more people like you, sweet Taylor Swift. I can guarantee it would be a much better place full of sparkles everywhere.

G’nite Miss Taylor. G’nite my mama. I hope you know I am safe. I love you to the moon and back. Sweet dreams.



A Little Therapy and A Chinese Fire Drill



Ro baby. 10:30 p.m. and we are home. Safe. Tired?? Yes. Tired, but not really. You know how it goes here. Busy day, to say the least. Busy and full of distractions. I think I am going to crash and burn soon. Hopefully, not until after this little Fashion Show that has been so crazy busy. And I am more of the behind the scenes person. I have no idea how Katie has been running a business, organizing all of this, getting ready for her upcoming trip to China, etc…… She is a freaking tornado! We make a good team though. And those busy little bees of mine! Thank you for all of them as well! They are really getting things done. It’s amazing to see the passion and love that flows out of them. Plus they are ALL so SPICY! I love that so much. It makes me laugh. I have the best group of spicy girls surrounding me and “getting shit done!” Productive is an understatement. They are powerhouses!

Today. What in the world happened, today? Woke up. So tired from not sleeping the night before. Ran the boys to school, 10 minutes late. Whoops. Told Super Nate’s mom I would come to PCH to check in on them. They have been there for way too long and I have meant to get over to see them. They finally got to go home today. They were so happy about that. I poked my head in Nate’s room to find him playing on the couch with his mama. I brought him some little toys and a couple of Star Wars things. I tried not to get too teary eyed when I rubbed his bald head. It made me miss yours, so much. I talked with Beth for a while. We went over some things as I am trying to figure out the best way to help them out. I wish I could do everything but I mostly wish I could wave my magic purple wand and make this all go away for them. Since I cannot, I will do whatever else I can. Even if it is just something as little as helping them out to their car with their luggage and helping Nate buckle into his car seat. He is so sweet, Ro. And he loves Star Wars, just like you. It felt good being there today and helping out in any way I can. I know I don’t know his mama very well, but I feel like I do. Because I’ve walked in her shoes and I know how lonely it is. I know you are watching over them though. I know they are going to be fine in NYC when Nate goes in November for his surgery. But I still told her to just say the word and I would help with NYC any way I can. I mean that too. No questions asked. I am more than happy to be able to help them<3 You would be proud. You would love them. You would have been buddies with Nate. He gave me knuckles today, just like you loved to do. It made me smile.

While I was at PCH, I met up with a couple of our lovies. I spent some time with my new friend, Kathy. The Emily Center was named after her daughter, who passed away from Leukemia, many years ago. As you can imagine, we have become fast friends. She is another one of those Spicy women. They seem to be surrounding me now, Ro. I know you have something to do with that. Kathy has been volunteering at PCH for a very long time. She is starting to test out the new idea I am trying to put in place at PCH for a volunteer position. Kathy tried it out on Tuesday and seemed to be thrilled with the way it went. I loved watching the way her eyes lit up and sparkled as she talked about what she did and the way the families reacted. She said it was hard, painful, happy, sad, and exhilarating. She said she experienced about every emotion doing what she did and it was so amazingly beautiful. I sat back, listened, smiled, laughed and cried. She is such a little firework. I am honored to call her my friend.

After I left Kathy, I ran over to the clinic to see Sandra and Mia. I saw our Sharon. Love our Sharon. Mia was there to have her blood levels checked. Mia was having an off day. She was upset, sad, mad, and hurting. Once again, where is my fucking magic wand when I need it? For both her and Sandra. They so deserve a break. I just happened to have a tiny doll in my purse that stopped Mia’s tears for a few minutes. Poor baby. Poor Mama. Stupid Cancer. I wanted to whisk them both away. Off to some tropical island, where Cancer does not exist and where you would be waiting for us. I wanted to give my friend, Sandra a break today and tell her to take the day off, and I would take care of Mia while she went and did something for herself, which I know she NEVER does. But she so deserves to. She is going to Sedona this weekend, which made me so happy to hear. I hope it is peaceful for her and she is able to breathe just a bit.

I stayed with them for a little over an hour. I put “Strawberry Shortcake,” on my computer for Mia. I asked if “A,” was around. She was. I have not seen her since your service. She came and found me and just hugged me for a really long time. We talked for a few minutes and got caught up. I miss her so much. I know you do too. She misses us too. It’s so funny how many sparkly eyed people seem to be in my life now, Ro. It’s as if once you got sick, somebody just started placing all of these people in our lives. These extra special people, whose eyes twinkle just like yours. “A,” is one of our sparkles, for sure. Same with Dr. Adams. I have not seen her, since before you passed away and I didn’t ask if she was in the clinic today. I don’t know if I could have handled seeing her and “A,” both in one day. That would have been too much, I think. But I think of her often. She is a special lady, too. Very much so.

I got out of PCH around 1. I ran to meet your Daddy for lunch. After that I ran to my eye doctor for a quick appointment and then to meet your Daddy to see Dr. Rachel. I have not been to her, in a while with him. It was good. Good and painful, but I always leave there feeling better than worse; which is a very good thing. That’s all I can ask for, at this point. She is really, really, good at making sure both of what your Daddy and I are feeling, is validated. She is really, really, good at helping me explain how I am feeling and why, when I sometimes seem to be at a loss for words. I sometimes need a little help explaining things to your Daddy. She is really good at helping me do that. Turns out, I cannot do everything on my own. Sometimes I need a little help in trying to figure out this “new normal.”  It is fucking hard and a lot of work that leaves me exhausted, empty, sad and scared. Don’t worry. Not only am I trying to figure out who I am now, but I’ve got to figure out this mom/wife thing again. I still feel so utterly disconnected from them both. The self hate that comes from this, is a nightmare. I hate myself for so many things now and so much of that is the guilt that surrounds me because I have the 3 sweetest men here on earth, who just want to love me. But I am too sad to fully let them all back in. It makes me feel selfish and guilty. Clearly, I am just a bad person, right? Or so, Inferno Fuckwad Bob tells me over and over all day long. I am really starting to hate that asshole.

So, Ro. After Dr. Rachel, off to Katie’s to meet up with Liz and do a little work. After there, pick up your brothers, Luke and Lily. Take all 4 kids to Dr. Jo’s office to the KISS programs. A program for Kids who have lost a sibling. We stayed there for a couple of hours. I chose to stay in the kids room and not go to the parent support group that was going on. N0t such a good idea. It was so painfully hard for me to sit there tonight and talk about you in front of others…. and to listen to the way Luke, Lily, Liam and Quinn talked about you and what happened. Beautifully raw, innocent and painful. I couldn’t hide my tears and it ended up being way more intense that I thought it was going to be. It was good for all of them though. We did some really fun Art projects and I was surprised how easily they all opened up about you. It was pretty amazing to watch, but it really, really hurt as well. Next time, I don’t think I’ll be hanging in the kids group. It is going to be good for your brothers though. It’s a very non-forced environment. It’s more about being a kid. A kid who had something awful happen to them, but it is not going to define them. They are still allowed to be kids, while acknowledging the fact that this horrific thing happened.. but they are young and life will go on. Innocence can still belong to them. It just comes in a wiser form now.

After we left the KISS program, we drove home. I told your brothers and cousins about Chinese Fire Drills. I don’t know where that came from, but I was thinking of you and the memory just popped into my head of me being young and carefree. Your Papa Jim used to let me do them all the time with my friends. Before I knew it, all 5 of us were at a stop sign…. in our neighborhood……. safe of course. No other cars around. I threw the car in park and we all got out, started screaming our heads off and ran around the car.  They all were laughing their heads off and thought it was the best thing ever. I imagined you watching us and giggling away. I miss your giggle so much, Ro.

Luke and Lily are staying the night. We are home. Safe. Tired. I wish you were too. I hope you are. I hate this life without you. But I’ve got to find a way, to make it manageable. The Chinese Fire Drill tonight helped for about 10 seconds. 10 seconds of being without pain, is better than nothing. Miss you baby. Love you baby. I hope you are safe. Sweet dreams, Ro.


Taylor Swift loves Rockstar Ronan! And I don’t love Obnoxious Complainers! So shut up!





Ro baby. I am trying to breathe tonight. I am trying to focus on all the yummy goodness that has filled my days. Because of you, and the effect you are having on the world. I actually had a lady come up to me today and tell me that I didn’t only change her life, but I am creating a movement. A movement, Ro. I hugged her. I cried. But what is new….. I’m always crying. Those were powerful words that she said to me, as she looked me in the eyes as I watched her eyes, well up with tears. I told her it was all you. Not me. Never me. Always you.

So, I am trying to let some things off of my chest because there are people who just don’t get this, or who do get it and just choose to ignore this and are not worthy of your story. They just are not. And I have to accept that. I cannot change everybody. I cannot change the person who knows your story, knows who I am but does not care. So, she sits in front of me and bitches about all the stress in her life, like the remodel of the 1 of her several homes. Complains right in front of me Ronan! And I am so pissed at myself tonight. I sat back and pretended like I wasn’t standing right there, as if I was invisible because I know if I let myself get pissed about the all of the asshole people in the world, that I am going to wasting a lot of time and energy on negativity. I have enough Inferno Fuckwad Bob in my life to go around for everyone. Do I really need to add to it? Do I really need to let stupid shit, get under my skin? No. But it does because I am human. And I know what it means to have real things to worry about such as just trying to stay alive. Every day I pray for death because the love of my life, DIED, of Childhood Cancer. I’ve got to come up with a new plan. And it cannot consist of the berserk fantasy moment I had in my head where I ripped this ladies hair out and told her to shut the fuck up because she has all of her babies and that is all that matters. I am going to have to take a less violent approach so I don’t get my ass shipped off to tent city with Sheriff Joe. It will maybe just have to be something like, “Oh, do you know Ronan? (slip her one of your little cards) Oh you do?(because everyone that lives in our very big but very small little city does) I am so glad. He is amazing. You know he died from Childhood Cancer, right? But gosh, I am really sorry that you are so stressed out over your home remodel. I hope it turns out to be beautiful.” Kill em’ with kindness, right Ro? Either that, or just choose to look the other way. Fuck that. I’m not looking the other way anymore. People need to wake up and stop bitching about such nonsense. Your house remodel, is NOT a problem. Your nanny quitting, is NOT a problem. Your nail breaking, is NOT a problem. Kids dying, everyday IS a problem. The dad just diagnosed with Lung Cancer, who is not a smoker, IS a problem.  All of the kids around the world, who don’t have homes or families, IS a problem. Not getting to wipe your babies sweet tears anymore, because he is DEAD, is a FUCKING PROBLEM!!!

Enough with the complaining about make-believe problems. Go visit a Children’s Oncology floor and then see if you can leave there, still bitching about your problems. Actually, do not go and visit this floor. The fact that you sat and complained in front of me today, is your fucking problem, not mine. You are not worthy being surrounded by all the beauty that shines off a kids Oncology floor. You are not worthy of any of the beauty that is going to come from Ronan’s story. Do you know what I heard today, asshole lady? I met the most beautiful family. Little Elizabeth Blair who has Stage IV Non-Hodgkins Lymphoblastic Lymphoma. She was talking about her bald head and how she doesn’t have blond hair, like her mommy anymore. Her mom just looked at her and said, “But where does beauty come from, Elizabeth?” Elizabeth answered right away. She said, “It comes from here,” and pointed at her HEART. Her heart ladies and gentleman. This 5-year-old knows more than most adults. This 5-year-old knows what is truly important in life. This 5-year-old is going to grow up to be an incredible young lady. I am pretty sure she would have anyway, due to the family that she is surrounded by. But now she has that extra sparkle in her eye, that most people do not. A sparkle in her eye, just like you did, Ro. The sparkle that is going to help to change this world. And hopefully make more people, stop complaining about stupid shit and doing something that will actually help to make a difference. Even if it means they just make their kids’ lunches for school and give the nanny/housecleaner, the day off. So be it. It’s a start. Baby steps can be done. They can be done and they can turn into something much bigger.

Maybe it starts with giving the Nanny the day off, paid of course and actually driving your kids to school, yourself. Then guess what? The next thing you know, instead of spending Thanksgiving basking in too many pies and food to eat, you and your entire family, spend a few hours, in a soup kitchen. Pretty soon it starts to set in that, “Oh my god. I am so thankful. I mean really thankful. I am thinking about that family today, who is having to spend their first Thanksgiving, without their Ronan. I have all of my kids. They are healthy. I want to be a good person. Not just a good person, but a REALLY good person. Because I am thankful. And blessed. And because so many people, are not. But deserve to be. So I am going to work really hard, to try to make a difference somehow, in this world.” Or maybe not. Maybe you would just sit around Thanksgiving, obsessing about everything you are going to buy on Black Friday. Obsessing about the Jimmy Choos that are going to go on Sale at Saks. This is probably the case. So in that case; fuck off. But I really hope your contractors are not late, AGAIN! I mean really, they were an hour late and you screamed and yelled at them because that is so much of a real problem? Those paid employees can be so rude sometimes. I don’t know who they think they are. The sense of entitlement of those blue-collar workers, is just beyond me. Shut up lady. Shut up and fuck off.

Oh Ro. Sorry your little post got Hijacked tonight. I just had to get that off of my chest. UGH! I have ONE more thing to say. Hang tight, little man. DEAR PEOPLE WHO STILL HAVE ALL OF THIER CHILDREN- Please STOP. I do not want to hear anymore, “Oh… Ronan is happy. He is in Heaven. God is taking care of him, you don’t need to worry.” I’m warning you NOW. If I have to hear this one more time, it is not going to be pretty. I get that most of you mean well, but you also have all of your kids. You get to watch them play soccer, you get to hang up their art work, you get to kiss them goodnight and tuck them in bed. You get to do all of those amazing things, therefore you do not have the right, to tell me my child is in a better place. Because I can tell you, I can fucking guarantee he is not. He is not here, with me, which is the only place he belongs. So please, keep your he is with GOD and in a better place comments to yourself. It may bring you peace, but it only makes me angry. Pray for me all you want. Bring on the prayers. But stop saying the things above. I’m going to start carrying a weapon with me, like Silly String. The next person that says this to me, is going to be douched in Silly String. You’ve been warned.

On to the amazingness, RO! Moving forward. Breathing. Inhaling the smell from your GiGi that is covering my face. It smells like you. Let’s start with the darling Taylor Swift. That’s a good story to end with. Or how about the “Fan Mail,” that I am getting sent to Katie’s Shop, like the Foster the People signed concert poster. Ummm… Hello lovie who sent me that. So rad. Thank you. Or all of my Ro Baby Maya’s Mafia Fans whom I met today, by chance, who just popped into Katie’s store to buy bracelets. So sweet. I loved meeting a few of you today. The love you have for us is so inspiring. The awaking I am seeing in these beautiful people, Ronan, is very moving and powerful. Just like you.

Crap… sidetracked! I just have too many great things to blab about! Back to T’ Swizzle. Who told her about you? Because I am so very sure, it was one of your little Fairy God Mothers down here. I was contacted by her event manager. “Taylor would like to extend two tickets to her show, plus a meet and greet with her, before hand. Are you available?” Was I available? Why yes, of course. I knew with all the amazingness going on, that I wanted to see if I could work my magic just a little. I have no shame, so I asked for 5 tickets instead. Poof! My wish was granted. Now, I just had to come up with a plan to reward some very special people in a very special way. I told Katie about the email. I knew the two of us, would come up with something very yummy and delicious to do. We thought about having people bid for the tickets, to raise more money for your foundation. We knew the tickets, could have gotten a lot of moolah. But that seemed to be defeating the purpose. We have been watching how hard, our little Rockstars have been working, to raise their 200 dollars to model in the show. Then Katie showed me this FB Wall post written by Elizabeth’s mom, the little girl with Stage IV Cancer.

Oh my SWEETNESS! Holy Willy Wonka! Today was the absolute BEST!!! Today we ran, walked, skipped, piggy backed, wheeled and twirled a 5K to fight Childhood Cancer at Grand Canyon University “Pinkalicious Style!” What does “Pinkalicious Style” look like you ask? Well, let me tell you we had everything from argyle to piggy tails, rainbow to more rainbow and lipstick! You can’t forget the lipstick. And oh my, the most AMAZING, “Beauty comes from within the heart” t-shirts designed by our multi-talented long time very special friend Chris Wahl!! He designed the most perfect shirt for my most perfect little girl. E’s Team consisted of not only the most incredible besties that a girl could ask for but also her past preschool teachers, babysitters, and new friendly faces of the kindest individuals who truly give the meaning to our team shirts. Beauty comes from within the heart. Team Elizabeth showed genuine beauty today. Each and everyone of us crossed that finish line in true pinkalicious style whether it was by wagon or walking, running or riding, age 5 or age 50. Medals were made and miles were gained all in the fight against childhood cancer. And well, Lymphoma, it can kiss our determined pinkalicious butts! Because we rocked it out there today! But, that’s not all. The kids also rocked it in our front yard today. They ROCKED it GOOD! As promised, Elizabeth, Kate and Bryce were fundraising full force with their Super Duper Candy Scoop Shop featuring a Rainbow of candies and Rainbow Manicures. Although, there was no rain, they each had a pocket full of sunshine and were ready to make things happen with a rainbow of colors in Pop Rocks, Gumballs, Lemonheads, cherry rainbow and pink lemonade Swizzle Sticks, gigantic Jaw Breakers, Gummy Bears, rainbow heart cookies, and rainbow manicures. Have I mentioned Elizabeth LOVES rainbow anything? The proceeds of todays fundraising efforts will benefit The Ronan Thompson Foundation. The Ronan Thompson Foundation and The Garage Boutique for Kids are hosting a Rock the Runway Fashion Show Event. My 3 kiddos are all participating. Although they may not all model, they all 3 are certain they want to help raise money to help in the fight against Pediatric Cancer. These kiddos made BIG BIG accomplishments today! I would say a top accomplishment for each of them to date. Their goal for today was to raise $200.00 each for a total of $600.00. Are you ready for this? Are you ready to hear what my kiddos raised in our front yard to fight Pediatric Cancer? $1019.64!! In three hours, these determined children fought for their sister, they fought for their cousin, they fought for their friends, they fought for your family, they fought for our family, they fought for Ronan and all the other children who have won or lost their battles to childhood cancer. They fought hard and they fought proud! My husband and I are so completely impressed with how busy these little bees worked today. But we are not surprised at the results! You, our community, our family of friends are more than generous. We had a complete stranger drive up and give $100.00! Oh my SWEETNESS! We have a toothache tonight from all the sweetness. We are blessed, thankful, and just so happy for all the kindness, love and of course beauty that comes from within all of your hearts. So whoop there it is! $1019.64 going to The Ronan Thompson Foundation. You are beautiful, The Blair’s P.S. Elizabeth went back to school on Wednesday!!

It was a no brainer. We wanted to extend the invitation to The Blair Family, to go with us. I had Katie call them today. She said it there were tears all around. My heart fluttered. I had not met The Blair Family, until today. Until after this phone call was made. About an hour later, they came bouncing into Katie’s shop. I hugged Elizabeth’s mama tight and we both cried a little. I rubbed the top of Elizabeth’s smooth, bald head. It made me miss you so much. Turns out, The Blairs, LOVE Taylor. They already had tickets. They gave their tickets to some friends and Elizabeth’s brother and Daddy get to go as well. We are so exited to take Elizabeth, her mama, and older sister, with us- to meet Taylor and to sit in some really good seats. It is going to be an amazing night. That Taylor, has a heart of gold. Just like so many of the lovelies that seem to be coming out left and right, Ro. They all love you so much. Amazing things are happening, my little man. All because of you.

Ro baby. I wish I could tuck you in but I can’t. So I will cuddle with your blanket instead. I will go to sleep, without my Ambien because the pain is something I need to be in. I cannot mask or cover it up. I will fall asleep with my tears soaking my pillow because it is where I need to be, now. I love you so much. I miss you so much. I hope you are safe. Sweet dreams, baby doll.


Meet Mindi Finch. She has a blog. She’s feisty. She rules.


What YOU need to know about Childhood Cancer Research Funding. From the fabulous People Against Childhood Cancer (PAC2)



2010 Summary

So, where does the money go: Childhood Cancer Research Funding (2010) – People Against Childhood Cancer

Prior to Fathers Day 2007, I had not given much thought to how funding for cancer research worked. That all changed. I thought we would share some thoughts and observations based on my own experiences and our research. This only seeks to inform, raise questions and to provide a platform for discussion. Nowhere in here will we suggest what charity you should support. But, without the right amount of funds directed towards the right research, PAC2 will only continue to grow, and we really want to shut it down. Let’s just look at a few of the groups competing for your money.


  • HOSPITALS: it may be difficult to determine what percentage of a donation to a hospital would be directed towards research into childhood cancer. Donations may cover operating costs, research into other diseases, and/or childhood cancer research.
  • AMERICAN CANCER SOCIETY: In 2009 directed $0.007 (less than a penny) to childhood cancer research for every dollar of public support. (Total public support: $897,051,000 and total directed at childhood cancer research: $6,206,000. Source:ACS)
  • LEUKEMIA &amp; LYMPHOMA SOCIETY: directed $0.02 to childhood cancer research for every dollar of public support. (Total public support: $287,625,000 and total directed at childhood cancer research: almost $6,000,000. Source LLS)
  • NATIONAL CANCER INSTITUTE: it’s your tax dollars at work. Over the past five years, it has directed between 3.6 and 4.0% of its total budget, an average of $176 million/year, to pediatric cancer. Why?


When a child is treated at a hospital, the hospital incurs costs and produces a bill for the treatment. The bill covers labor, drugs, supplies, new equipment, other operating costs and, if it has a facility, some is directed to research. Obviously not all hospitals have research labs, and the size and funding varies.

Many if not all hospitals have a fundraising arm. If you are at a facility that treats both adults and children, generally funds it collects support operating costs and additions the hospital may desire, and may go towards research. Research may be into treatment of any disease you can imagine. Some may go towards cancer research, both adult and childhood cancers. So, if you give to XXX Hospital, your money is directed towards many various causes, with an unknown portion related to childhood cancer research.

With hospitals, it would seem you need to ask if you can direct your donation to the cause you want to support.

Obviously, St. Jude is likely the hospital the majority of the public thinks of if and when they think of childhood cancer. Their marketing campaign is hugely successful. The post “What if….” has the actual data on St. Jude. In summary:

  • St. Jude treats less than 4% of all the kids with cancer.
  • St. Jude received $682 million in support (donations and bequest) and $82 million in grants from NCI, NIH, and, historically, organizations like CureSearch for Childhood Cancer, St. Baldrick’s Foundation, Alex’s Lemonade Stand Foundation and Rally Foundation for Childhood Cancer Research.
  • St. Jude spent $282 million on research on all diseases, 36% of support.
  • St. Jude fundraising expenses were $135 million. ALSAC admin and general costs were $51 million.

The American Cancer Society

The mission statement of the American Cancer Society (ACS) reads: “Founded in 1913, the American Cancer Society (ACS) is the nationwide community-based voluntary health organization dedicated to eliminating cancer as a major health problem by preventing cancer, saving lives, and diminishing suffering from cancer, through research, education, advocacy, and service. With more than two million volunteers nationwide, the American Cancer Society is one of the oldest and largest voluntary health agencies in the United States. Headquartered in Atlanta, Georgia, the ACS has state divisions and more than 3,400 local offices.”

Many chose to become involved with the ACS fundraising events, including the “Relay for Life”. The funds collected by the ACS are used for many causes. The numbers, in millions:

Childhood Cancer Research – $6.2

Other Research – $143

Prevention – $177

Detection/Treatment – $129

Patient Support – $275

Management – $63

Fundraising – $222

Looks black and white to us. The numbers speak for themselves with regard to the funding for childhood cancer, but just to be clear, 0.6% of funds are directed towards research to cure the entire suite of childhood cancers.
Imagine you participate in a Relay-For-Life. You raise $1,000. $270 (27%) goes to admin and fundraising costs. Only $150 goes to any research, and only $6 of that $1000 you raised is targeted towards childhood cancer.

The Stats
Overall, Charity Navigator gives ACS 3 of 4 stars but only 1 of 4 stars for efficiency. John Seffrin, Chief Executive Officer earns $685,884 or 0.06% of expenses. Program expenses (what it spends on the programs and services it exists to deliver) are 72%, management 6% and fundraising expenses 22%. Total revenue in 2009 was $897,051,000.


#1 -Are there ways to “direct” the money raised toward your cause? The ACS site provides the following options for “Donation Designation”; cancer research, breast cancer research, prostate cancer research, colorectal cancer research and lung cancer research. But is there a manner to direct your funds towards childhood cancer if your amount raised is significant?
#2 – Why, when less than 1% of the funds are directed at childhood cancer, do we see so many childhood cancer victims in the ACS literature?

(We know we’ll hear the “well research into adult cancers can benefit children” argument. Well, most adult cancers do not occur in children. And simple downsizing of adult doses is where we are at now, and the long term consequences have been demonstrated time and again and again and againto be simply unacceptable. We need targeted childhood cancer research!)

The Leukemia and Lymphoma Society

From its website: “The Leukemia & Lymphoma Society (LLS) is the world’s largest voluntary health organization dedicated to funding blood cancer research, education and patient services. The mission of LLS is to cure leukemia, lymphoma, Hodgkin’s disease and myeloma, and improve the quality of life of patients and their families. Since its founding in 1949, LLS has invested more than $600 million for research specifically targeting blood cancers.”

We’re sure many of you have had excellent experiences with the LLS. Many chose to become involved with the LLS fundraising events, including the “Light the Night” and “Team in Training”. The funds collected by the LLS are used for many causes. The chart shows the various things supported (Year End 2009 data). The LLS has stated that almost $6 million of its $288 million in total public support is directed to childhood cancer. That equals $0.02 for every dollar of public support. The numbers, in millions:

Research – $69

Patient &amp; Community Services – $92

Public Health Education – $43

Professional Education – $9

Management &amp; General – $24

Fundraising – $45

Childhood Cancer – $6

So, you raise $1000 for LLS: $240 goes to LLS fundraising, general and management costs. $21 is directed to childhood cancer.

The Stats
Overall, Charity Navigator gives LLS 3 of 4 stars, and for fundraising efficiency, 2 of 4 stars. John Walter, the President, CEO earns $482,000 or 0.18% of expenses. Program expenses are 75%, admin 8% and fundraising expenses 18%. Total revenue last year was $277million.

#1 – Are there ways to “direct” the money raised toward your cause? I believe that national Light the Night teams raising over $100k may direct the funding? Anyone with experience?
#2 – As it is not readily apparent, has anyone seen the percentage of funds directed towards pediatric blood cancer research?

UPDATE – JULY 2009 – Here is a link to some information directly from LLS. Judge for yourself.

UPDATE – APRIL 2010 – We’re a little disturbed by LLS’s latest idea for fundraiser events. They’ve embarked on a Totally Baldacious campaign, where participants shave their heads. I know I’ve heard that one before….oh that’s right, St Baldricks has been doing that for many years solely in support of CHILDHOOD cancer research! Shame on you LLS…

UPDATE – AUGUST 2010 – from the LLS:

“LLS recently launched a research initiative focused on the long-term and late effects of today’s curative therapies – many of these quality-of-life limiting consequences impact pediatric patients differentially as children can live for decades after they are cured. LLS just committed more than $2 million to new projects in this research area, thanks to generous donors, and anticipate investing more than $5 million over the next 3 years, in order to make today’s cures safer.

We are also involved in the Alliance for Childhood Cancer – and the Pediatric Cancer Survivorship Legislation –

National Cancer Institute

The National Cancer Institute (NCI) is part of the National Institutes of Health (NIH), which is one of 11 agencies that compose the Department of Health and Human Services (HHS). The NCI, established under the National Cancer Institute Act of 1937, is the Federal Government’s principal agency for cancer research and training.

Here is the NCI total funding and the amount directed to childhood cancer over the past five years averages $176 million/year, and ranges between 3.6 and 4%. Over that same period, average NCI breast cancer funding was 24%, prostate 5% and lung 5%. During 2009 NCI did direct an additional $49 million in ARRA funds to support TARGET Research.

A portion of that NCI funding goes to the Children’s Oncology Group, through CureSearch – to the tune of $46 million for fiscal year ending Feb 2009. CureSearch then takes that funding and distributes it back to COG hospitals (more below).

Why is Federal funding for breast cancer five times the dollars per person life year lost when compared to childhood cancer funding? Why is Federal funding for prostate cancer, with a 99% five-year survival rate, nearly five times the total amount given to all types of childhood cancer? Why?

We challenge the entire paradigm of the NCI funding for cancer research. Have you ever known scientists who could manage? Think of cancer as a sinking ship, with all of us on-board. Who do we care for first? We get the women and children to safety. And we know many grieving Mom’s who would give up their seat to any child. But what we have is first class seating, funding, for adults.

And finally, consider this from our friends at KIDS V CANCER: “DID YOU KNOW? Research and development for new drugs from pharmaceutical companies comprises 60% of funding for adult cancer drugs and close to zero for childhood cancers. However, the NCI spends 96% of its budget on adult cancers and only 4% of its budget on children’s cancers.”.

Susan G Komen

Just for comparison….Susan G. Komen for the Cure, formerly known as Susan G. Komen Breast Cancer Foundation, was established in 1982 by Nancy G. Brinker. Nancy promised her dying sister Susan that she would do everything in her power to end breast cancer forever. Today, Komen for the Cure is the world’s largest grassroots network of breast cancer survivors and activists fighting to save lives, empower people, ensure quality care for all and energize science to find the cures. Thanks to events like the Komen Race for the Cure, they have invested nearly $1 billion to fulfill our promise, becoming the largest source of nonprofit funds dedicated to the fight against breast cancer in the world.

Overall, Charity Navigator gives SGK 4 of 4 stars, same as last year. For fundraising efficiency, SGK receives 4 of 4 stars, same as last year. Hala G. Moddelmog, COO, earns $532,000 or 0.18% of expenses. Program expenses are 83%, admin 11% and fundraising expenses 7%. Total revenue last year was $299 million. Course…that’s before they started suing….

Childhood Cancer Research Focused Fundraising

The largest federally funded (mostly) organization is CureSearch. The CureSearch National Childhood Cancer Foundation is dedicated to raising private funds for childhood cancer research for the Children’s Oncology Group, the world’s largest cooperative cancer research organization. CureSearch Children’s Oncology Group is a network of 230 hospitals nationwide and more than 5,000 physicians, nurses, and scientists whose collaboration, research and care have turned childhood cancer from a virtually incurable disease to one with an overall 78% cure rate.

CureSearch/NCCF is the grantee for the Children’s Oncology Group from the National Cancer Institute. They receive funds from NCI and distribute them to more than 230 Children’s Oncology Group member institutions in North America and around the world in support of clinical trials. In addition, they raise private philanthropic and non-governmental funds, which they also use to support the Children’s Oncology Group.

For fiscal year ending Feb 2009, Charity Navigator gives CureSearch 4 of 4 stars. For efficiency, CureSearch receives 3 of 4 stars. Joseph Woelkers, Chairman, earns $287,00, or 0.49% of expenses. Gregroy H. Reaman, Executive Director, Scientific & Medical Affairs earns $391,000 or 0.67% of expenses. Program expenses are 95%, admin 3% and fundraising expenses 2%. Total revenue was $56 million. Revenue included $46.5 million from NCI and $13.3 million in donations, private grants and corporate grants.

Here is a map of COG hospitals, and a list of COG hospitals.

Obviously CureSearch is not the only childhood cancer charity. PAC2 has assembled a list of wonderful childhood cancer fundraising organizations here. Please consider CureSearchSt. Baldrick’sAlex’s Lemonade StandsThe Rally Foundation for Childhood Cancer Research and all the wonderful other organizations fighting for our kids. Here’s some great groups you can contact right here at PAC2. These guys direct money only to childhood cancer related causes, primarily research. And you’ve seen the PAC2 chevron picture…Awareness –&gt; Funding –&gt; Research –&gt; CURE! you know why funding and research is needed!

Speaking from the heart, over the past 2-3 years, PAC2 has come to know, respect and believe in the great people in these organizations. We believe that they will find a cure. And we know they will work with you in virtually any capacity and are ALWAYS looking for leaders and volunteers. They will work with you directly to meet your needs. The best part is that the VAST majority (typically 80 – 90%) of any money you raise for them is directed towards cutting-edge research into childhood cancer. Period.

If we expand into other childhood cancer charities, there are so many other worthy causes that may not be research oriented but still need support; local family support organizations, the Ronald McDonald House, SuperSibs, American Childhood Cancer Organization, Make-A-Wish etc, etc. Not to mention the parent led Foundations, who may contribute to support, hospitals, or other. All needing your dollar.

Other diseases, local police, the United Way, March of Dimes, Red Cross, Save the Whales, World Wildlife Foundation, you get the idea. There are over 900,000 registered with the IRS. It must be a pretty competitive business eh?

The nature of the business is that it is a business. And we as consumers should know where our donations are going. And expect accountability. Transparency. Just like this note is attempting to be. If we’re wrong somewhere….please let us know.

In the end, it’s your call. Decide if you want $4 (ACS) or $21 (LLS) or, typically $800 (CC orgs on our list) of the $1000 you raise to go to childhood cancer research.

Research is the key to a cure.

Big Disclaimer – our thoughts, experiences and analysis of their financial data. We just wanted to inform and show the differences, raise a few questions for the community, and to say things that we think need to be said. We are NOT saying ACS or LLS is not right, they just aren’t focused on childhood cancer.

A sweet mama did this for me today. Thank you, Kristen!!

Hey everyone, The Ellen Show put out on FB today that they are looking for ‘inspiring people’ and want to hear their stories… I think this is a GREAT opportunity to flood their inbox about sweet Maya Maria Thompson and the amazing work she is doing for childhood cancer awareness!! I already submitted and I really hope you all do to! This one’s for RO!! ♥

Because you are ALL Rockstars!

You are ALL already Rockstars, for continuing to fight this fight with me. For Ronan and all the other babes out their who are fighting this fight or will sadly fight this fight, in the future. I want to hug each and every one of you and tell you thank you. I wish I knew all of your faces and names so I could properly thank you all. Words cannot even express how thankful I am. Seeing the amount of support that has continued to flood in, keeps me going and strong. I know the love I have for Ronan, is going to change the world. I love you all for believing in our love so much that you continue to scream, yell, cry, and cuss for Ro. Until things start to change and Childhood Cancer gets the attention it deserves. With the help of my amazing Busy Little Bees, we put together an idea. For those of you who are out-of-town, or just cannot make it to the event, we thought this would be a great way for you to still be a part of our amazing night.

Thank you for your continued love and support. Thank you to everyone helping in making this event as fun and sparkly as Ronan. Thank you for helping his spirit, fire, and soul, live on. Thank you for being a part of something bigger than yourselves. Something life changing. You get that there is more to life than just “this.” You get that this isn’t just about Childhood Cancer. You get it and I appreciate that so much.

Details are below. I hope you think it’s as awesome as I do. I cannot wait to see our Rockstars in action:)

Garage is accepting Submissions thru November 4th of your children celebrating their inner rockstar! All entries will be entered into a “Rockstar” montage to be played the evening of “ROCK the RUNWAY for RONAN” on November 10th. These Rockstars will bask in the glory of their photos being shown on the Garage Facebook page, The Ronan Thompson website, the Brightest Star Facebook page and YouTube. One(1) submission will be drawn to win a Rockstar VIP swag bag from the event. Each photo entry should include the child’s name(or alter ego Rockstar name) telephone number, mailing address as well as an email address. A photo caption is optional.
Photos should be sent to Donations are required and can be made at (suggested donation amount of $25). 100% of donations benefit The Ronan Thompson Foundation, a 501(c)3, devoted to finding a cure for Pediatric Cancer.

By submitting a photograph and participating in the Contest, entrant, for him/herself and on behalf of the child, irrevocably transfers, grants and assigns to Garage LLC and The Ronan Thompson Foundation, its affiliates and its respective successors, assigns, and licensees, the right to use the name, likeness, image and photograph, including any reproductions of same, in any and all media for any advertising or promotional purposes, without additional compensation, and releases Garage LLC and The Ronan Thompson Foundation and any entity acting on their behalf from any liability with respect thereto.

ROCKSTARS unite for The Ronan Thompson Foundation!


Rock the Runway For Ronan

Garage Boutique’s Annual “Fashion for Philanthropy” Event

Benefiting The Ronan Thompson Foundation

October 17, 2011

Scottsdale, AZ.

Garage Boutique is a lively place, full of kids, designer duds and good shopping mojo. But Scottsdale’s premiere children’s boutique for infants and tweens isn’t just about clothes. Owner Katie Wilson believes in philanthropy, and her young customers do, too.

This year, local kids were invited to apply to model in The Garage Boutique’s Annual Fashion Show, which will benefit The Ronan Thompson Foundation. Maya Thompson, author of, lost her 3-year-old son, Ronan, to neuroblastoma, a form of childhood cancer, in May 2011. Maya’s blog has captured the attention of millions of people around the world. The Ronan Thompson Foundation vows to change the fact that pediatric cancer is the least funded when it comes to cancer research.

Wilson said, “Garage isn’t just about style, fashion, & the cool sweet factor, but also about making an impact. My mission is to educate, inspire and empower kids to make a difference in their school, and community through volunteer work and community service. The 75 ‘Rockstars’ in The Rock the Runway for Ronan Fashion Show all committed to raising a minimum of $200 each for the Ronan Thompson Foundation.”

Maya had three main goals in mind when she started up Ronan’s Foundation. To support in research for Childhood Cancer, to help a local family once a year that has been affected by Childhood Cancer, and to help local charities such as The Ryan House and MISS Foundation. The Ryan House is a non-profit in Phoenix and helps care for families dealing with life threatening illnesses. It is where Ronan spent the last week of his life and it is where he passed away. The MISS Foundation is a non-profit and was started up by Dr. Joanne Cacciatore. They are committed to helping families in dealing with the loss of child, from any cause.

The Fashion Show is November 10, 2011 at Casa Blanca Lounge (7134 E. Stetson) in Scottsdale. Doors open at 6pm and the Fashion Show starts at 7pm. Tickets are $25, and available at: Limited tickets are available. For more information, visit our Facebook page


Thank you to all our ROCKSTAR friends and family for your generosity and support! Please remember that occupancy is limited in our venue, so if you plan on attending it is important that you purchase your tickets in the next 24 hours. Don’t miss your chance to take part in this year’s most rocking event!