Tag: Dr. Yael Mosse

You should all be so proud. You helped us do this. Thank you for your continued love and support!

 

tumblr_lckqu3II8E1qzwhhno1_1280

 

 

 

RESEARCHERS TO DEVELOP ALK-BASED IMMUNOTHERAPY FOR NEUROBLASTOMA

The Ronan Thompson Foundation and Solving Kids’ Cancer award $100,000 grant to fund new therapeutic to treat children with neuroblastoma

New York, New York – November 30, 2012 – The Ronan Thompson Foundation and Solving Kids’ Cancer have announced a charity partnership to jointly sponsor breakthrough clinical research of a new therapeutic antibody for neuroblastoma. Together, they will award $100,000 to the Children’s Hospital of Philadelphia (CHOP) with the goal of improving survival for children with neuroblastoma, a deadly cancer that usually strikes infants and preschoolers.

This promising research will be conducted by CHOP physician-scientist Yael Mosse, M.D., who garnered international attention for her discovery of a mutation in the ALK (anaplastic lymphoma kinase) gene that occurs in some neuroblastomas. Changes, or mutations, in the ALK gene play a role in the growth of cancer cells and has also been linked to lung cancer and lymphoma. Researchers believe that an ALK antibody will directly target the tumor cells and also help the immune system to attack the cancer, reducing the risk of a future recurrence. The plan is to use the ALK monoclonal antibody in combination with an ALK inhibitor to benefit more patients. The ALK mutation only occurs in about 10 percent of neuroblastomas, but ALK expression is found on 90 percent of neuroblastomas. Recent early-phase research conducted in the lab showed that an antibody targeting ALK expression kills neuroblastoma cells.

“By working together, we can make the world a better place for children and their families who have been affected by neuroblastoma by bringing together the best doctors, research and treatments,” said Maya Thompson, the Founder of the Ronan Thompson Foundation. “We are very excited to be partnering with Solving Kid’s Cancer in supporting the work of Dr. Yael Mosse and her colleagues at CHOP to help find a cure for this disease.”

Work is now under way with an industry partner to generate and screen potential anti-ALK antibodies with the goal of commercial production. The Ronan Thompson Foundation and Solving Kids’ Cancer will commit the $100,000 joint funding to develop the antibody and required testing to bring this promising new treatment option to the clinic for children. The hope is that a small-scale clinical trial will quickly prove the therapy’s safety and effectiveness for use in trials throughout the U.S. and Europe.

“This collaboration is an example of pediatric cancer charities coming together to quickly bring the best, most innovative treatments to our children and ultimately improve survival for this deadly pediatric cancer,” said Scott Kennedy, the Executive Director of Solving Kids’ Cancer.

 

 

 

A Poppy Shower? O.k. Only if tradition does not exist.

 

Ronan. I survived your 18 months. It rained. Of course it did. It was a hard day with a lot of tears but I didn’t die. If pain alone could kill me, I would have died about a million times by now. I’ve been busy but not in my normal way of running around like a chicken with it’s head cut off. I’ve been doing a lot of things around our house, which you know kills me. I’ve been spending a lot of time with your brothers and daddy. We have gone out to eat a couple of times, as a family. “Table for 4 please,” never becomes easier to say. I always have to say it fighting back tears. I told Rita yesterday that being pregnant makes me suicidal. I was kind of joking but kind of not. I feel really alone and isolated with this pregnancy. Like I am the only mother in the world who has lost a child and is now carrying another life inside of her. I know there are other mothers out there, who have gone through this as well. But they are not really in my inner circle, unless you count Dr. Jo. So for the most part, I am alone in this. Nobody else that I am in contact with, knows what this could possibly feel like. Instead this pregnancy is filled with a lot of happiness from the outside world. As if this will fix everything. It doesn’t. It will not. I know this baby will bring a lot of smiles, but my smiles will always come with tears; for the rest of my life. The pain behind my eyes, will never go away.

I have been trying to plan our second annual Macegiving. You know since last year I banned Thanksgiving at our house. We made our own day and it revolved around your Auntie Macy and doing whatever the hell we wanted. No formal Thanksgiving Day existed. Macy will fly in, just as she did last year to save us from this wretched holiday. Maybe this year, I feel as if I have more to be thankful for, but I still think it is bullshit that I have to sit around a table, without you. Last year, I wore my “Fuck Cancer,” shirt. I shot a bb gun. We ate Chinese Food, let off fireworks and beat the shit out of a piñata. This year will be more of the same but I will cook some pies. I love cooking pies and miss it so much. We will have friends come and go through out the day. Nothing formal or stuffy. No fancy clothes or fake smiles required. No prayers or sitting around a table together saying what it is, we are thankful for. Our day will be tough, as all holidays are, but thankfully we have some great friends to help us get through it. The best fucking friends on the planet.

Poppy is growing like crazy. So is my stomach. Never in my life have I eaten healthier, not because I want to, but because she requires it. I’m a healthy eater anyway, but Little Miss Poppy, has taken it to a whole new level. No meat, not much candy, no fast food, nothing greasy or processed. I’ve been living off of humus, fruit, veggies, some cheese here and there. The other day, I went to a restaurant with Stacy and Fernanda. Fernanda ordered a burger, Stacy the French Dip. “I’ll have the veggie platter, please.” They both looked at me like I was crazy. “WTF? I know! This Poppy only wants really healthy shit!” With all of you boys, I totally remember eating burgers, ice cream, etc… Stuff that you are supposed to enjoy when you are pregnant. Maybe it’s because she is a girl, that I want none of that stuff. I find it funny. I wonder if the second she is born, that I’ll be dying for my meat and candy galore again. Right now, sign me up for the beets, cauliflower, humus, apples, and whatever healthy stuff I can get my hands on. I even went to the movies a couple of weeks ago with Rita and pulled out cauliflower from my purse. It didn’t even seem weird to me until she pointed out that it was totally weird. Your little sister is quirky already and I kind of love it;) She is already taking after me.

Last week I got the news that the trial we funded with Solving Kids’ Cancer for Dr. Mosse at CHOP is a go. We sent our check in and I could not be more proud. Proud of you. Proud of us. Proud of all the people out there, sending us there hard-earned money. A dollar here, a dollar there…. It all adds up. I am so proud to be partnering up with another AMAZING childhood cancer foundation. Believe me, I have researched them ALL. Solving Kids’ Cancer is the best of the best. I cannot wait to collaborate with them for the many more things that we have in the works. Together, we are going to change this game, big time. I kept my word to Dr. Mosse. I said from the very beginning the first thing we funded, would be with her. Although she never treated you, Ronan, she navigated us down this road and at the end of the day was the only person to look me in the eyes and say, “I am so sorry. We as a medical community, have failed you.” Those words, one of the worst things I have ever had to hear, came across not in a sharp and hurtful way, but full of compassion and true sadness. Her eyes were full of the dignity and grace that you deserved and that we as parents, so needed. I believe in the work she is doing. I believe in her as not only a doctor, but a human being. I know what she is doing, will make a difference. I am so happy to support her in any way that we can. Thank you all so much, for making this happen. This would not have happened, without you.

Tonight I went to Chelsea’s Kitchen for a little pow wow of a dinner. I met up with some of our lovies for an impromptu meeting about some things we have in the works. We talked about some foundation things but also some personal things. I have some of my closest girlfriends who want to throw me a baby shower. I’ve been fighting them on it but I know I am not going to win. We sat tonight and talked about how they know the “traditional,” baby shower, won’t fly for me. “Please, I don’t want to sit around, drink punch and open gifts. Please, I don’t want to play the jelly bean game where you guess how many of them are in a baby bottle. Please, I don’t want to have everyone guess how big my belly is with a string. I will throw up and run out of the room if any of that takes place.” Please I just want my Ronan back, too. Can’t I have Ronan and Poppy both? I cannot. At the end of the night the girls came up with some ideas for this very non traditional baby shower which I will know nothing about as I am just showing up. All of their ideas made me laugh and seems very Maya like which means it goes against the norm of everything baby shower required. My anxiety is a lot less now. I am so thankful for the friends I have, who understand that a traditional shower would only send me screaming out of the room, crying. I am thankful for the friends who embrace the me for being me and love me so much. I am thankful that they are still here and were brave enough to never go away, even when I know I was not capable of being a friend to anyone. I am thankful for them loving me and never judging. Because they understand that nobody has the right to judge a grieving mother. It’s because of their gifts that I will forever spend the rest of my life, giving them what I have left. Which at times, may only be a little or it may be a lot. Either way, they do not care. They love me enough to stand by my side to know that when I am ready, I will come back. I feel like I have in a lot of ways. I am so glad they waited for me. I am so glad they never gave up, even after you left Ronan. They are still here and still fighting. That is also because they love you, so very much. I know there was a time in my life when I thought I didn’t need anybody. All I wanted to do, was push everyone away. The friends that are still here are the one’s who never stopped fighting for you, for me, for us, for our family. I will forever be so thankful for them. I now know that I very much needed them all so badly. I would be so sad, if they had gone away which they easily could have done but chose not to do. Thank you to all of you, who are still here. I love you so very much.

Alright little man. I am beat. Poppy is still making me pretty tired. I am dreaming so vividly but still not seeing you which I don’t understand. I talk about you, watch everyone else talk about you, your death seems to be in my dreams all of the time, but never your little face. I would give anything to see it. I think about you all of the time. You would think this would mean I get to see you in my dreams too. I don’t. I hardly ever do. I miss you. I love you. I hope you are safe. Sweet dreams, baby doll.

xoxo

 

Hellllooo June! Nice to see you!


It’s not the critic who counts

It’s not the critic who counts,
not the man who points out
how the strong man stumbles
or where the doer of deeds
could have done them better.

The credit belongs to the man
who is actually in the arena,
whose face is marred
by dust and sweat and blood,
who strives valiantly,
who errs and comes short
again and again because
there is no effort without
error and shortcomings,
who knows the great devotion,
who spends himself in a worthy cause,
who at best knows in the end the high achievement of triumph
and who at worst, if he fails while daring greatly,
knows his place shall never be with those timid and cold souls
who know neither victory nor defeat.

– Theodore Roosevelt, 26th US President

My marathon is Sunday. As in, this Sunday. I stuck by my words and did not train at all. I did a few runs, here and there. But in no way shape or form, did I train for this marathon. I saw an opportunity, and I ran with it. I wanted to raise enough money, to help fund Dr. Mosse’s trial at CHOP. I did not want to have to throw a normal fundraiser, to do this. I took this on as a personal challenge to myself, to see if I could actually get this done. I did it. We raised enough money, in just a few short weeks, to do this. It was a lot of money. I am over the moon about succeeding. None of this would not have happened, without all of you. All of you who believe in me, so much, that you donated what you could donate. Whether it was 1 dollar, or 5k…. the bottom line is, I have a world of support surrounding me that will continue to help me move these mountains. The impossible will be done because I have the most amazing group of people, supporting me at all times. This would not exist without this blog. This is what makes every backlash, every “you are doing the wrong things,” the “stop putting all of this out there,” SO WORTH IT. It is so beyond worth it. I always said Ronan’s Foundation is not here to be conventional and like every other foundation out there. There are some amazing ones out there, do not get me wrong…. but I know Ronan’s will be different. Ronan’s is his and mine and nobody is going to take this story away from us. May the bridges I burn, light the way to something else so extraordinary, that the normal human in the box thinker, cannot even see yet. I can see it. I’ve always been able to see it. My eyes are Ronan’s eyes. I see everything through my child’s eyes, and today, they are not blurry. Today, my soul is on fire. Today, I am so proud of who I am, who I am becoming, and who I hope to achieve to be. I am proud of all of my mistakes as they are my mistakes to make and I try my best to learn from them. To grow from them and they help me cut to the chase with a lot of bullshit in life that I am just not dealing with anymore. I am thankful to my parents for giving me the gift of an open mind and an open heart. I learned all of those things, from them. Now, all I have to do is run this marathon and finish this marathon. I am going to try my hardest and try my best. I will finish. It is going to be ugly, but I will finish. No matter how bad my time, sucks. All I care about is crossing that finish line and making you all proud. This is a also a personal test to myself. If I can do this, I can do anything I set my mind to. I am going to run the entire marathon thinking about Ronan. About our love and our loss. About how this is all for him and always will be. I have no doubt this marathon will be filled with so much pain, determination, courage, strength and fire… that it can and will be achieved. I do not doubt my heart at all. I will not only carry Ronan with me, but all of the other babes I now know and love. Ava will be heavy on my mind as well as a sweet little girl named Charlotte Rose Kelly, who passed away from Neuroblastoma as well. Her mom reached out to me and sent a very generous donation to help us fund Dr. Mosse’s trial. She says I give her strength with my words. Once again, this would not happen without this blog. I am so thankful for you, Patrice. That you are able to see my light in the darkness of all of this. I will run extra hard on Sunday, thinking of you and your sweet baby girl. I am so sorry that you know what this pain and my tears feel like. I wish it was not this way, for any of us.

I knew that the first thing that I was going to fund was going to go to Dr. Mosse. Your daddy asked if I was sure about this because there are a lot of people that need support and money for research. I looked your daddy in the eyes and said to him, “Without a doubt, 110% this is who this money is going to.” It is the least I can do for her. This is not about just the research for me. This goes much deeper than that. This is about a person, who had a very hard job to do, in telling 2 parents that there was nothing that could be done for you, Ronan. This is about a person, that had the courage, grace, compassion, and dignity to look us in the eyes and tell us how truly sorry she was. This to me, Ronan, is PRICELESS. I am doing this for her, because of what she did for us. Although, she never had the privilege of taking care of you, she took care of me in the only way she could have, instead. By giving me the gift of looking me in the eye. I will always be so thankful for that. So, Sunday is going to be here before I know it. I am not running in a new pair of shoes. I will wear the purple one’s that I always wore, with you. I will wear my NYC Yankees hat, because it is always what I wore, with you. Those 2 things have been with me though out your treatment and after. I will never throw them away although my purple pumped up kicks have seen better days. I am not running in anything else. I know you will be there with me, pushing me when my body is ready to give up and quit. I am going to need you, little one.

I just wanted to say thank you to everyone who donated and made this possible. This could not have happened, without you. Thank you for not giving up on me no matter how many times I have “offended,” you. Thank you for being able to see past that and finding it in your hearts to see beyond the things that may appear on the surface. Thank you for not forgetting that this is about a sick little boy, who never hurt a fly and did not deserve any of this. Who could be angry at a child and turn away from that due to words that I may write? Take my words away and if you can still picture Ronan’s face and are filled with anger or disappointment due to the things that I have said, then I freaking feel sorry for you. I don’t want your support anyway. Go give it to some other charity like “Save the Unicorns of the World.” Because that right there, will cure childhood cancer. This is about something so much bigger than my words. This is about a life of a child that deserved better. This is about the life of all of the other babies, kids, and teenagers who are diagnosed and will fight cancer while everybody else, tries to looks the other way. This is about awareness. I must be doing something right if I have almost 2.7 million hits on this blog. I have to think that most of you, are still here because you believe in good over evil. Because as I have often said before, there will be beauty that comes of this. No matter how ugly it may get. If you are still with me, I thank you so much for not looking the other way. I thank you for being brave enough to laugh with me, cry with me, scream with me, get mad at me; but you still find it in your hearts to never give up on this story and to never give up on Ronan. I love you all. See you on Sunday, 26.2!

P.S. That quote above was sent to me today, by one of my former lovies of the month, Kassie. I think I will print it out, and read it every freaking day. Thanks, Kass. Once again, I would not know this kind soul, without this blog. I will never regret any backlash because all of the beauty that has come from this, so outweighs it all.

xoxo

A city where the happy is too loud so let’s go away to the cold beach

Ronan. What is today? Sunday I think. The days are lost for me. The day you left me is almost here. May 9th. Your day of death. Not the day you “flew away to the heavens above,” not the day you “went to be with Jesus,” not the day you “went to a better place where you are an angel now,” not the day that you became “free,” not the day that “you went home.” I am not about to soften this blow with any of that bullshit. It’s fluff and fluff does not work for me. May 9th. Your day of death. The bloody hell worst day of my life. Period. I would actually like to take May 9th and make it a National holiday. I would like May 9th to be National F U Cancer day. I think that is appropriate since it is the day that cancer stole you. I am not taking your day and turning it into something fucking pretty, happy, light, and filled with angels from above. FUCK THAT SHIT. I am going to take the day that you left me and rename it and make it the name that it deserves. I think I will wear black all day long. I think I will try not to die from the pain of physically feeling, with every cell in my body, that you are not here. I remember our last moments together. They are a part of my soul now. They fill me with things like anger that I never knew existed. They fill me with things like a fire and a drive that I never knew I had. They make me want to take on the world because I know I can change this. I know we can change this. I know the power of our love can take the worst thing possible, and help others. But I am not doing this the nice way. I am not playing by the fluffy rules. There is nothing sweet and fluffy about having to dig your babies ashes out of his urn to place them in a plastic baggie, so you can take him on a trip with you. Anybody that says otherwise, can fuck off. Because it is simply not true. It’s bullshit and something no parent should ever have to experience. Especially not in this day and age when kids die from cancer, due to lack of funding alone. I don’t understand this. I will never understand this. I will never understand why this is acceptable. I will never understand why all of these kids are swept under the rug. I will never understand so I will spend the rest of my life, trying to fix this. This is what I am here to do, Ronan. I am not doing anything else.

I may have had a mini freak out last night in our hotel room. We landed in a big city. A big city is not where we need to be right now. I knew that planning this trip. I can do a city, all alone, and badass, any other month, but not this month. We went to dinner in this big city last night. It was all I could do to stay in the restaurant and not flip the fuck out. There were sooooo many happy people, everywhere. Happy and fancy. All dressed up. All happy and carefree. Nobody in that restaurant, had a dead almost 4-year-old. That I am sure of. “Their happy, is too loud.” I know what that feels like. I feel like that, all the time. It makes me sad and stings my eyes. Please bring him back. Please. I beg over and over in my head. I WILL DO ANYTHING. This never works, but I will continue to try for the rest of my life. I left the restaurant with Liam. We had a little foundation business to attend to. We had to get a picture of my fake training, for Palmer Cash, as they were my sponsor for the day. Thanks Palmer Cash. Everyone needs to check them out. They make the raddest tee shirts out there. Liam happily snapped my pics and laughed at my goofy posing/fake running. You see, I am not only doing this to make some money for your foundation, but I am also doing this to help us get through May. My life kind of depends on it. This was my idea as I knew we were going to need a way to get a laugh and some smiles on this trip. A light-hearted but heavy-hearted way to make some money to get Dr. Mosse’s trial funded, seemed like the way to go. So far, so good. I have had a blast and it is a healthy, good distraction.

We were all tired from our long day of traveling. We fell asleep pretty early. I ended up waking up, and having a mini freak out session/panic attack which caused me to slam two Ambien and send some insane text messages to your Mr. Sparkly Eyes. Well, not insane, but intense. I am always the most intense when I am the saddest/on the verge of jumping out of our 7 story hotel room. It was the Ambien that knocked me into a black coma of oblivion, not the soothing words of everything is going to be alright that I needed to hear. No words last night could have saved me. I know myself well enough to know when I am not capable of handling things on my own. Last night, when I woke up in that hotel room, only to find your daddy and brothers, and you were nowhere to be found.. well, what can I say? Nothing. What do you say to that? How can words comfort that? They can’t. They didn’t. I chose to escape instead. I am not perfect. You know how I hate our little frienemy. But on nights like last night, I don’t have a choice. The 7th floor jumping out of our hotel window, to splatter on the streets below, did not seem like a better option. Ambien won. Again, but not always. Not always is good enough for me, as of now.

I woke up this morning, all bright-eyed and bushy-tailed. No trace of black oblivion coma, existed. Up, showered, packed, Starbucks, hit the road, let’s get outta this big city. We met up with some friends. Good friends. Forever friends because of the unthinkable bond that we share. The one of a dead child, due to cancer. It was good to see them. So good. It actually felt good. It felt like home. I am so glad we are here. Getting out of Phoenix was the right thing to do. We watched their little boys’ Lacrosse game. God, you would have loved that game. It is so a sport you would have kicked ass at. Since you cannot be here, to kick ass at this sport, I now feel like I should do this for you. I am dreaming of a woman’s Lacrosse team as we speak. How awesome would that be? Your brothers want to play as well. The thought of that, put a smile on my face. I told them I would look into it once we returned home from our trip. They are both so excited. I am excited too. They are such good little boys. Almost too good. I need to rough them up a bit. I think Lacrosse is a good start.

After the Lacrosse game, we all went to lunch. I sat back with our friends and watched the way the 4 of our boys became fast friends, laughing and giggling together. 4 boys but there should have been 6. 6 would have been much better. 6 would have been absolutely perfect in this so-called imperfect world that does not exist if you have all of your kids, healthy and living. Healthy and living and there should be nothing to complain about, ever. Not the spilled milk, not the ” I don’t have enough time for myself because my kids keep me too busy,” not the messes made, not the arguments that are had, not the strong-willed child that throws a fit over everything, not the “I am too tired because my “sick,” child kept me up all night.” Please. I would give both of my arms for those problems. I would give my life for those problems. Those are not problems. Those are “you are so fucking lucky.” So shut up, suck it up, and be grateful. Stop making everything so much more complicated than it really is. Because at the end of the day, it’s not complicated at all. If it is, fix it. Are you laying with your child, as he takes his last breaths? If you are not and you are still complaining about this shit I would really like to punch you in the face. I cannot tolerate a life of complaining of nothingness. I don’t tolerate it. Which is why I may have such a big problem with being out in the real world now. Complainers are everywhere. I don’t do well with them.

If good days existed in my life anymore, today would have been one of them. We left our friends and headed off to our new destination. As we drove to our hotel, I spent the majority of the car ride, quite, with tears streaming down my face. Everything in our lives has changed. Even a 45 minute car ride. I hid my tears from everyone, as not to upset your brothers. I was so thankful to get out of the city. A cold, beachy destination seems to be much more fitting. A sleepy little town, where it seems as problems do not exist. I know this is not true. But due to the fucked up things that go on in my head, I have convinced myself that if we had live here, you would not have gotten cancer and died. Case in point, conversation with your daddy in the car.

Me: “I’ll bet nothing bad ever happens here.”

Your daddy: “That is not true. Bad things happen everywhere.”

Me: “Well, I’ll bet kids don’t get cancer and die here. I’ll bet if we would have lived here, Ronan would not have gotten cancer and died. It’s just too perfect.”

Your daddy a.k.a. the voice of reason and also the voice of you are clearly insane: “People get cancer everywhere, living here would not have changed Ronan getting cancer.”

I huffed and puffed. A small part of me thinks that if we had indeed lived in this small little sleepy town, that you would still be here. It’s my pretend world and I can live in it if I want to. I choose to live in it. Most of the time alone. Sometimes not. Either way, I don’t see myself leaving it anytime soon. It is the pieces of pretend that give me a break from our reality.

I chose to see you today. Running on the beach. Diving into the freezing ocean like I know you would have. Carrying your little red sand bucket. Giggling everywhere. Yelling, “Quinny! Mama! Quinn just threw sand at me!” Then throwing the sand back. I would have chased you like the wind today. I would have loved every second of cleaning you off. Throwing you into a warm bath where I would make sure you felt safe, clean, loved and warm. I would have put on your sweet little pajamas and tucked you into bed with me, where you belong. Nowhere else. Certainly not this nowhere that is here now. Certainly not this nowhere of crying myself to sleep because I am so sad I got to do none of those things with you today. I know you want to be here doing them, just as badly. I can feel it. I am sorry. Forever sorry.

I might have to end this now. I think it’s really long and I’m too sad, to continue on. Today was as good of a day, as it could have been. Your brothers happiness is proof of that. There happiness is how I judge good days now. I very rarely know happiness of my own. I’m o.k. with this. As long as I get to see it through them. I love you. I miss you. I hope you are safe. G’night baby doll.

xoxo

Five Dollar Friday!!!

 

 

We are sooooo close to getting this trial for Dr. Yael Mosse at Chop funded. Do you want to help??? Do you have 5 dollars to make me holla?!?! Skip the Starbucks today! Let’s save some kids!!!

The donations have been pouring in thanks to the power of Facebook and social media in general! I am so humbled, proud, and filled with RoLove that I could explode. Thank you so much to all of you who have donated already! It’s because of all of you, that we will do this!

If you have not donated, there is still lots of time to do so. Come on peeps! If I can run 26.2 miles, without training, 5 bucks is nothing! It would mean the world to me. Ronan would be so proud.

Thanks lovely little blog readers! And Happy Star Wars Day, Ro baby. I know the force is with you. I love you.

xoxo

http://theronanthompsonfoundation.com/donate

I miss him

Ronan. What a day. How I miss the simple days of chasing you around. Laughing as you would pick all the flowers around our neighborhood from other people’s yards, thinking you were so naughty for doing so. I let you think you were being naughty, just to make you giggle and to let you feel like you were breaking the rules. Gosh, how I loved to embrace your little spicy rebellious ways. You weren’t naughty. You were innocent. You were a child. You were mine. You were the best thing that’s ever been mine. I honestly still cannot believe you are gone and that I don’t get to chase you around anymore. There is not a second of the day, that I do not miss you. Not one second.

I sat at the TGen conference all day again today. I don’t know what in the world happened, but I spent most of the day wiping tears away from my eyes. In a room full of scientists, doctors, researchers….. all there for pediatric cancer. I was only there, for you. The biggest reason of all. I did my best to soak up everything that was being said. Neuroblastoma was only touched on a few times but I found that when it was being talked about in charts, graphs, statistics…. was when it was all I could do not to crawl under the table and curl up in a ball. I didn’t want everyone in that room to see the data that was being presented in front of their faces in a scientific form. I know it’s important to them Ronan and I am so thankful for all the hard work that’s going into this disease, but it’s not enough. I wanted the data to show your face instead. I mean, I think your big blue eyes are the most compelling piece of evidence ever of why this disease deserves to have a better outcome. It was actually all I could do, not to run up to the podium and hijack the speakers talk. I imagined it. A dozen times. I imagined myself, slapping your picture up on the screen. I wouldn’t have needed to say much as your eyes say it all. I think my eyes do too. But if I would have said something, it would have been something like this:

I’m not a doctor. I’m not a scientist. I’m not a researcher. I’m not even a nurse.

I’m a mom. I’m a mom whose heart is broken into a million pieces because this little boy, was mine. But he was stolen from me by childhood cancer. Please work harder because there is a reason you are here. Please make this about more than just science. Please let him be one of the reasons that you will work harder. Please fix this, so someday another mother like me, does not have to stand before you, wearing her child’s ashes around her neck. He deserved better. He deserved to be mine, for much longer than almost 4 years. He should have been mine, for the rest of MY life. I should have been his, for much more than almost 4 years. Almost 4 years, will never be enough.

I know they are not the most compelling words, but today they were the only thing I could muster up in my over active imagination to say. My brain/emotions are fried. As I said before, I don’t think I need any words. Your picture is enough. How could anyone look at your face, and not be broken-hearted? The combination of your beauty and my sadness is more than enough, baby doll. The ultimate sacrifice.

Candice from TGen was kind enough to make sure I got to meet Dr. Sholler today. I actually got nervous as I went to not shake her hand, but to give her a hug instead. It’s so funny to me how the medical community are just not big huggers. It almost seems to make them uncomfortable. It actually makes me laugh. It seems to completely throw them all off. I think I need to spread the RoLove around. I think it’s a big part of the missing piece of the puzzle of this sometimes detached from emotion reality that these doctors live in. Dr. Sholler was not expecting it, but she smiled and seemed o.k. with this crazy girl hugging her and trying to find the words to tell her thank you. I think I stumbled on a few things. I remember telling her about you. Showing her your picture. Handing her your Rocard. I called her a maverick and an outside of the box thinker….. I don’t think she knew quite what to make of me. I was hoping she wasn’t thinking, “Who is this crazed stalker with purple hair??!” because that’s what I totally felt like. I am so glad I finally got to meet her. She told me she was sorry about you. You know that speaks volumes in my book. Simple words that go such a long way. I look forward to hearing her speak tomorrow. I look forward to watching what she does in regards to Neuroblastoma. She’s very eager which I like. Eager and passion are both things I feel from her. So, let’s keep watching and learning more Ronan. She has our attention. She’s had it for a while. Oh, and I saw Dr. Eshun again today. He tried once again to shake my hand and laughed as I grabbed him for a hug.

Today, while I sat in the room full of absolute brilliance everywhere, I noticed there were 2 things missing. Well, 3 actually but I’m only going to talk about 2. Dr. Mosse from Chop. I emailed her and told her I was there and that I wish had been there, speaking. She emailed me back to tell me that some of her colleagues were there, and she was sorry she could not attend. She also told me she hoped I was o.k. She made me smile so for that moment in time, I was o.k. I sent Dr. Jo a text to tell her that this conference desperately needed her there. Fo shizzle. There is a missing layer to all of this and it is only something that Dr. Badass JoRo can deliver. It has nothing to do with science. It’s Humanity. Depth. Compassion. Pain. Beauty. Rawness. Realness. That woman has such a way with words, that she could have no doubt brought every person in that room, to their knees begging to know her secret. Her secret has nothing to do with her fancy degree. Her secret is not something you can get at med school. Her secret is beyond this world and she is the only one that can posses it. She is doing amazing things with it. Romazing. I’m just sorry it fucking has to be this way. It shouldn’t be, because of this beyond fucked up fuckery that she is surviving. Everyday, she is surviving Ronan. She is surviving all while making this world a better place. Not many people can say that about themselves. Not many people would want to. Not even her. Trust me. Nothing is worth this pain.

In the middle of my noyoucannotsoblikeafuckingbabyinfrontofallthesepeopletantrum…. I sent your Mr. Sparkly Eyes a text message. I don’t even know what I said but I’m sure I was on one of my usual rants about F U Cancer to him. He simply responded with an, ” I miss him.” I read his words Ronan and FUCK. I felt like I had the wind knocked out of me. It was game over. I know he misses you but for some reason, it hit me really hard today. In a conference room full of people, alligator tears were uncontrollable. I took a minute to get myself under control and just told him, ” I miss him for you too.” That was all. Nothing more needed to be said as those words were enough. Sometimes the simplest words, say it all. I know what needs to be done. I trust in you. I will be your Rovocate for the rest of my life. I will make you both proud. I will never stop fighting for all that was taken away from you. For the love that was ripped from my arms. I promise I won’t give up until our RoLove, changes the world.

O.k. little man. That’s all for tonight. I love you. I’ll be sorry for the rest of my life. I can’t wait for the day that I can see you again. And no. I don’t need to believe in a fucking GOD for this to happen so people need to stop saying that. I believe in you, Ronan and you are more than any GOD could ever be. I miss you. I hope you are safe. Sweet dreams, little man.

xoxo

P.S. Thank you for all the Roideas today. Through my sadness, grief, pain…. the ideas would not stop flowing. Pediatic Cancer is about to get FUCKED!

Back to a reality I don’t want

Ronan. I am not content to go back to my old life, before you disappeared. The safe little life of an Arizona housewife. Thinking of going back to my life, before all of this, makes my skin crawl. Nothing will be the same again without you. That means everything has to change. I’m not sure what exactly that means yet but there now lives this fire in me that cannot be tamed. I died when you died. I say that all the time. I will never be the same person that I was, before all of this. I’m not sure I even liked that person. Well, I guess that’s not true. Sometimes I tend to be too hard on myself. I did like the person I was before all of this and I should stop and pat myself on my back every once in a while. I know I was a good person but being a good person will only get you so far in life. It can’t fucking cure cancer or save our troops. But I was doing a really good job at that life or so I thought because my life revolved around the love I had for our family and look at what that accomplished. I got 3 amazing little human being boys out of it. Including you. And you were totally the raddest kid that ever lived. At least in my eyes and that was enough for me. But looking back, I do see a person who had settled because everything was so safe and sound. Just the way I had always wanted my life to be. Coming from a childhood that was really unstable…. I swore to myself when I got married and had kids, I would never make them endure the things I had to. I met your daddy, had you boys and got very comfortable living inside of our little bubble. I just never thought the bubble would burst in the worst way possible. By one of my kids dying. I was the lucky one with an amazing husband and 3 beautiful boys. I so knew it was all too good to be true and it was only a matter of time before something happened. I just always imagined it would be something like getting breast cancer or your daddy getting prostate cancer because those are the things you hear about in the world. You don’t hear about babies being diagnosed with cancer. It’s the biggest dirty little secret out there. It’s a secret that nobody wants to talk about, even when it happens to them. It is the dirty little secret, that people just want to ignore. I hate to be the fucking cancer grim reappear here, but if I were reading this, and I had not lost a child from cancer….. I would be so fucking scared. I would be so scared that this could happen to me that I would have no choice but to take that fear and channel it into helping to be a part to change the face of this disease. Because as we know, kids can get cancer at any age of life…. even teenagers. I think about this all the time. What if I did not choose to speak up about this and Roforbid, Liam or Quinn ended up developing childhood cancer later in their life. And I had watched you die from it, but did nothing about it which in turn, resulted in the same awful treatment/statistics/outcome for Liam or Quinn. Could you even fucking imagine? That would be so unacceptable. All of this is unacceptable. You dying is fucking unacceptable. And not speaking up about this is totally unacceptable here to help be a change in this so that someday, this does not have to happen to another child and another family. I know I don’t have a choice unless I just choose to throw in the towel and slit my own writs. And trust me, I’ve come pretty close to the edge Ronan. I still think about it all the time. But what good would that do anyone? It wouldn’t. So, I’ll sit here and fight instead. I’ll continue to fight for you little man until you tell me, enough.

The more I’m learning about childhood cancer, the more pissed I am getting. Why is it, that our children are getting the short end of the stick? I know any parent out there would agree that if they had to choose between themselves getting cancer or their child getting cancer, they would choose themselves. And if you choose your child, then you should not be a fucking parent. Or if you can answer this question and you are not yet a parent, but want to be a parent someday…. and you choose your child getting cancer over you…. you need to reconsider having a child. So, if we are all in agreement that we would rather have this happen to us, then our child or future children, why in the world is pediatric cancer the LEAST FUCKING FUNDED??? Because of lack of awareness. Plain and simple. If people everywhere, were aware….. things would be so different.

It’s been a lot of work being here. Not emotionally, because emotionally I feel stronger then I have since losing you. It’s been a lot of cancer/foundation busy work. I’ve been working my ass off, leaving the apartment at 7 a.m. and not returning home until really late at night. I wish I could say I’ve been living the high life of an awesome 30somthing New Yorker. Hardly. I’ve been eating, drinking, and sleeping everything childhood cancer related. I met with Dr. Mosse yesterday. She was kind enough to let me eat up much of her afternoon. It was strange seeing her but in the best way possible. I don’t want to go into too much detail about what went on, but to me that woman walks on water. I could sit and give you the run down on our 3 hour conversation about cancer, but it was so much more then that. It was a conversation full of more then science and statistics and to me, that meant the world. I knew it from the first time I met her when I watched the way you easily slid into her arms when she went to pick you up and exam you on her table. The words I sent to Fernanda after meeting Dr. Mosse for the first time, in the middle of your treatment will haunt me for the rest of my life. Before we left CHOP, you were running ahead of me with your daddy. I sent Fernanda a text that simply said, “It’s her. She’s going to save my son.” But then you know, we got “sold,” on Sloan. Your daddy swears the outcome would have been the same no matter which way we went because your disease was that bad. All I know is if that is the case, I would have rather had you in Dr. Mosse’s care then Dr. Kushners. I will never forgive myself for not listening to what my HEART told me. I ignored it and that was so wrong of me. So Ro… what’s the lesson in all of this? I think it is this: Dr. Mosse couldn’t save you, but she is going to save other kids who are in your same position. And even if she can’t right now, because this disease is so hard to figure out, at least she will do everything she can and she will do it with compassion, grace and dignity. I will support her. She owns a piece of my heart. The tiny piece that I have left. I don’t want to say never…. but as of now, Sloan Kettering and Dr. Kushner will never get support from us. Unless he makes some serious changes. I straight told Dr. Mosse yesterday that if I ever saw Dr. Kushner again, that I would kick him in the balls. I know, so appropriate of me but I know she understands. I’ll bet she’s never had a parent tell her that before. I so love being such a rule breaker. The other lesson here, Ro. Is to always listen to your heart. I am a huge believer in this. Even if things don’t turn out as you’d hoped or planned, knowing that you stayed true to yourself is something that you can never regret.

After I got home from Philly, I met up with a lovely little blog reader of mine who actually volunteered at Sloan while you were being treated there, Ro. I never met her, but she remembered you and your daddy and the way you ran around the halls of Sloan with your gun like you owned the place. Rachel has been a huge lover of yours and so when she heard I was coming to NYC she told me she would love to meet up with me. She got in touch with me a few days ago and we decided to meet up last night even though I was beat from the day I had with Dr. Mosse. I am SO glad I didn’t just go home after getting off of the train. Rachel met me at Penn Station and we headed out to grab some food as I was starving from not having eaten all day. We got to know each other over sushi and I fell head over heels in love with this 21 year old student who goes to NYC. She wants to be a pediatric oncologist and has so much heart and passion. She is funny, quick witted, caring and she put my crazy skydiving ways to SHAME! Talk about being fearless. The girl cliff dives, for breakfast. We spent the next 4 hours or so, hanging out like and I felt like she was my long lost little sissy. Although at one point I was reminded of what a mom I am because I said to Rachel, “Text me when you get home, so I know you made it safely.” She laughed and said, “You are such a mom.” I smiled and said I knew. I can’t wait to see her again. I am so impressed with the drive and heart of this amazing girl. I know what I was up to when I was 21 and it wasn’t trying to save a bunch of babies with cancer. She reminds me of a mini Dr. Mosse. Rachel actually shadowed Dr. Mosse for 3 weeks and was able to back up every good thing I had to say about her. Another little piece of the puzzle that is falling into place, right baby. I don’t believe in much in life anymore but I do believe in signs. And I have been seeing so many of them. All from you.

Today, I went over to meet up with Scott from Solving Kids Cancer. I feel like I am on the right path as far as educating myself on anything and everything that is childhood cancer related. I’m doing the best I can with my grief brain that still exists. There are so many pieces of the puzzle to consider and I have to make sure I am stepping back and looking at the bigger picture here while examining all the small details as well. As I have said before, I am not here to raise 100K for childhood cancer I am here to raise 100 million dollars or more. And I will not be flying in a private plane with it. I am here to do some serious damage. The world of pediatric cancer is not Vegas people; but the world seems to think that it is acceptable to gamble with your child’s life like it is. So all these parents are forced to gamble and the sad truth is, everyone loses in one way or another. When your child dies, not only does a parent lose…. every single person around loses. The loss of a child is so much more heartbreaking then losing a parent, aunt, uncle, grandparent, and don’t even get me started on the dog or the cats of the fucking world. Losing a child is the deepest pain that one can ever experience. It goes against the nature of everything that we know to be true. Turns out life is one big fat fucking lie and everyone is eating it up like it is free ice cream day at Hagen Dauz. I’m so full of this “life,” bullshit that I will continue to throw up everywhere until people stop gorging themselves to death and decide to wake the fuck up and actually make a difference in this society and this world. Has anybody taken a look around lately? Does anybody care that there is a fucking war going on and it’s not just in Iraq. There is so much more to worry about in life then missing an episode of your favorite television show.

Ro baby doll. I’m on a plane back to AZ. This trip was more then I could have even dreamed of. I found so many things here that I thought were lost forever. The biggest part of my trip was feeling like I found a bit myself again and feeling the strength that I know I have because of you. Turns out the time alone was much more needed then I realized. I’m an introvert by nature and I’ve always embraced this. New York City and the introvert Maya do really, really well together. New York City, is my heaven. I smiled so much on this trip and I smiled over the simplest things. Things like opening up my blinds and seeing the dark angry sky pouring buckets of rain on the sidewalks below. I didn’t even have to force that smile, Ro. It just happened. It felt so strange yet so good. It’s hard to live a life where more fake smiles exist then real ones. I came on this NYC trip with no expectations and I can tell you, my faith in humanity has been restored. How due to the kindness of some really generous people, I was reminded that there are a whole lot of people, that believe in me and no matter how important they are in this world…. they don’t need to take the time to scream it from the rooftops. They don’t need the recognition of what it is they are doing, which is helping others in their day to day lives. They don’t need their name splattered all over a magazine cover or in the papers. They just make things happen and do kind things because they are in a position to do so and that’s it. Those are the BEST kind of people in the world, Ronan. The one’s who do because they can. The one’s who are grateful for all that they have so they live their lives, quietly giving back to others when they are in a position to do so. I know these people know who they are in my life and I hope they know that they truly do make the world a better place. I am honored and so grateful for the quiet important people in the world. Especially the few quiet people of New York City who helped to save a bit of my sanity by being so generous with their time, smiles, lives, love, ears, and living spaces;) Thank you my little NYC lovelies. You all SAVED me.
I love you Ronan. I will never be better from losing you. This reality still takes my breath away. I’ve just got to keep on holding on to whatever it is that I have left. I have to keep moving forward for you. I keep telling myself you have a bigger plan for me, for you, for us. I’m just going to continue to follow my heart and listening to you. You will forever be my greatest teacher in life. I am so thankful for that. Sweet dreams little one. I love you so much. I hope you are safe. G’nite baby doll.
xoxo

Oh and P.S. Dear Assholes of the world who continue to talk about my language on here. I feel like a broken record but shut the fuck up and go away. If you do not like my language, then stop reading what I am writing. Take your small mind, elsewhere. Go save the unicorns, leprechauns, and fairies of the world. Nobody is holding a gun to your head and making you read this. YOU OFFEND ME BY BEING OFFENDED! It’s not like I’m standing in your front yard, screaming obscenities at you. But if I knew where you lived, I would be. I would do all while I held up a huge poster of a picture I have a Ronan which shows how badly his little body was beaten up by childhood cancer. And if you were still offended by my fuck words, instead of the picture in front of your face, I would have to beat you down with my sign the way that childhood cancer, beat my little boy black and blue. So, in the words of some genius out there…. “Fuck you you fucking fuck!!!!!!” STUPID FUCKWADS!!!!!!!!!!!!!!!!!!!!! And really, to sit there and say that because I say the fuck world a lot, I don’t have morals. WOW! That might just be one of the most awesome things I’ve ever heard. Well, if living a life full of morals means living a life the way you do, by judging other people then I am glad I don’t have fucking morals. I hope you like how the shit that you eat for breakfast, tastes. I’m going to stick to my breakfast of champions. It’s called waking up everyday and not getting to cook eggies for my 3 year old son anymore because he is dead from cancer. So instead of not cooking eggies, I’ll just sit around and say the fuck word instead. All while I don’t drink, do drugs, or abuse my kids. All while I try to figure out how to make this world a better place by helping to fight for these cancer babies and their parents. So sorry that offends you, asswad. Sweet dreams to you though. I hope your dreams of little puppies, are nice.

xoxo