Tag: Solving Kids Cancer

The day you died, the day you were born and the day you died again because you were put in a urn. Happy should have been 7th birthday, my spicy Ro.

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Ronan.  I didn’t die from the fuckwad of May dates that I had to get through.  The day you died. Mother’s Day. Your birthday, which was also the day you were cremated. And the day we had your celebration of life aka a bullshit word I think I let everyone around me make up when it should have just been called “the most fucked up reason for a funeral” because that is how I really feel about it.  We went away for May.  It was as good of a trip as it could possibly be, despite the circumstances.  We went to New York and spent about a week out in the Hamptons with our dear friends who are pretty much the only reason I got through everything alright.  On the day you died, I didn’t sleep much.  I tossed and turned the night before and sent my same text that I send every single year around 3:20 in the morning to Mr. Sparkly Eyes because he was the first person I texted after you died and I’m weird with my rituals like that.  I said what I always say which is how I hope he never forgets how much you loved him.  How thankful I am for him and the role he played in your life and how I will never forget how above and beyond he went for you and continues to do so in this life now.  He called me a few hours later and I ran outside, barefoot so I could talk to him without waking up the entire house.

“Are you o.k.? That is a stupid question. I know you are not.”

I told him it was ok, that I was as o.k. as I could possibly be. I didn’t cry this year when he called for some reason.  I just let his words sink in and took his advice which was basically, “You don’t get to stay in bed today because that is not fair to Ronan or your other kids, so go out and do something.” I told him I would and I listened again as he told me how sorry he was.  I thanked him for calling and told him to please go and do something for you today, besides work.  He said that he would.

We spent the majority of the day, outside in the cooler temps by the ocean.  We played in the grass, rolled down hills, climbed to the top of a lighthouse, watched Poppy go to town picking flowers and ended the night by jumping in our freezing cold pool.  We were pretty much surrounded by friends the entire time we were in the Hamptons and it is because of this that our days and nights were actually filled with smiles and laughter.  Poppy kept everyone on their toes with her constant dancing to Pharrell Williams, “Happy.” A couple of years ago I know hearing this song would have thrown me right over the edge.  Now I am able to dance and sing to it and I know that is all because of her.  How can one not feel happy watching a one year old pump her little arms and rock back and forth on her chubby little legs to the beat of this song? Impossible even when you have an almost 4-year-old in an urn and kissing that goodnight is the closest you will ever get to kissing his little body again.

We spent your birthday in the city.  We started it off by grabbing pizza at your favorite place which is right by the Ronald McDonald House.  We then walked through the city a bit and went to see our good friend, Scott at Solving Kids’ Cancer.  Your daddy hadn’t met Scott before but they talk a lot on the phone.  I was beyond excited for the two of them to meet because 1)Scott is amazing and 2) They remind me a lot of each other. Of course they hit it off and seeing the two of them together made me smile on your beautiful day. I stepped out of our “meeting” and ran across the street to meet up with a favorite editor of mine in the literary world.  It was so good to hug her and catch her up on this book/life/fuck cancer/she couldn’t believe it was your 7th birthday.  She was so good about checking in with me to see that I was alright the entire time we were together. Our time together was so nice and I was so glad I got to introduce her to your daddy since he hears me talk about her so much.

After our impromptu meetings, we continued to do all your favorite things in the city.  Poppy took the streets by storm of course and I did my best to let her have a little freedom, while trying to keep her safe from getting run over by the crazy NYC taxis.  It was the first time in my life that I understood why those parents put their kids on leashes; because I totally wished I had one that day.  Instead, I chased your sister down the sidewalks as she took off without looking back at all and after a minute I would have to grab her from behind, pick her up to keep her out of harms way, all while she screamed bloody murder for me to put her down.  She seems to have turned a corner since turning one and I’m not sure there is any going back.  Miss Independent EXTRA spicy Poppy it is.  I, of course wouldn’t have it any other way.

We walked as much of the city as we could.  Stopped for a little pit stop in Central Park so Poppy could actually do some real running.  I plopped down in the grass, exhausted from a beyond mentally exhausting day.  Your brothers ran all about and your daddy took your sister to play on the playground while I stayed behind, laying in the grass and looking up at the sky.  After about 10 minutes, all the tears I had been holding back came pouring out and I just gave in and let them, not caring who would see.  My little, Rachel, came walking over soon after as she had been trying to find us in the park.  Just in time for me to bury my head in her lap while telling her, “I haven’t been very spicy today” as the snot dripped out of my nose and tears plopped out of my eyes and on to her jeans. She stroked my hair and said it was alright.  I cried for a few minutes more and then got up to decorate the most beautiful tree with a ton of your Ronan bracelets.  I had to do something spicy, so I climbed up the tree and sat there for a bit.  I can’t remember the last time I’ve climbed a tree and I wonder why.  It was lovely up there and so something you would have done.  At this time, it was getting dark so we parted ways with Rachel and ended up back at your favorite pizza place, one last time.  We had one last thing to do which was our random act of kindness so we bought a ton of gift cards at the pharmacy next door and I took your brothers and marched my little butt right back into that Ronald McDonald House where we spent so much time.  I told them I wanted to drop them off to give out to the family’s that were staying there.  I had a flashback of you in the lobby there, right when we arrived and you were wearing your cute little warm hat, standing on the luggage carrier giving me the biggest smile as if you trusted me with your life because you knew I was going to get you better and fix all of this.  I’ll never forget the look in your eyes as they sparkled so bright and were full of such hope, trust and love.  I’m so sorry that you will never get to be 7 and instead you will be always almost 4. I’m so fucking sorry.

Ending this now with some words I read a while ago and I like to read them again when everything seems to be lost in the world, but I know it’s not because once upon a time, you were mine and I was yours.  You always will be mine, even if you are not here but somewhere else where I know I will see you again.  I wish knowing that made things hurt less, Ronan.  Sometimes this pain is all too much.

I miss you.  I love you.  I hope you are safe.

On this day, you read something that moved you and made you realise there were no more fears to fear. No tears to cry. No head to hang in shame. That every time you thought you’d offended someone, it was all just in your head and really, they love you with all their heart and nothing will ever change that. That everyone and everything lives on inside you. That that doesn’t make any of it any less real.

That soft touches will change you and stay with you longer than hard ones.

That being alone means you’re free. That old lovers miss you and new lovers want you and the one you’re with is the one you’re meant to be with. That the tingles running down your arms are angel feathers and they whisper in your ear, constantly, if you choose to hear them. That everything you want to happen, will happen, if you decide you want it enough. That every time you think a sad thought, you can think a happy one instead.

That you control that completely.

That the people who make you laugh are more beautiful than beautiful people. That you laugh more than you cry. That crying is good for you. That the people you hate wish you would stop and you do too.

That your friends are reflections of the best parts of you. That you are more than the sum total of the things you know and how you react to them. That dancing is sometimes more important than listening to the music.

That the most embarrassing, awkward moments of your life are only remembered by you and no one else. That no one judges you when you walk into a room and all they really want to know, is if you’re judging them. That what you make and what you do with your time is more important than you’ll ever fathom and should be treated as such. That the difference between a job and art is passion. That neither defines who you are. That talking to strangers is how you make friends.

That bad days end but a smile can go around the world. That life contradicts itself, constantly. That’s why it’s worth living.

That the difference between pain and love is time. That love is only as real as you want it to be. That if you feel good, you look good but it doesn’t always work the other way around.

That the sun will rise each day and it’s up to you each day if you match it. That nothing matters up until this point. That what you decide now, in this moment, will change the future. Forever.

That rain is beautiful.

And so are you.

 

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

 

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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

New York Fuckin City and Cancer is an Asshole

 

 

Ronan. I’m here. Back to the place where we were basically told there was nothing left we could do for you. Back to the city that was supposed to heal you. Well it didn’t. I’m hoping it will heal me a little I guess. I’m not giving up on this city. I’m not going to let it make me so bitter and sad so that I can never return here. I’m here and this city is still as lovely as ever. A perfect place for an insomniac like me.

I’ll admit it, I was a little nervous and sad to leave tonight. I had a moment when I was saying goodbye to your daddy and brothers before went through the security line. I gave them lots of hugs and kisses. Liam was being so stoic and brave about me leaving. Quinn had tears running down his cheeks. Your daddy looked sad as well. It killed me to leave them but as I have said before, I don’t have a choice. This is something I need to do. As I was sitting in the airport, waiting for my plane I thought to myself, “What in the fuck are you doing? You are leaving everything and everyone behind that you love to go to a big city where you know, nobody. Who in the world do you think you are?” Then I remembered, I am your mama. I can do anything. I may not know what the fuck I am doing; but I’m not going to stop until I figure it out. I owe this to you and I owe this to myself. I told you I died when you died. I know this. I have to do things like this in order to live again. I don’t know why it is that you wanted me to come back here again and at this specific time, but your little voice in my head has been too loud for me to ignore. I know you have a bigger plan for me and I know this is part of it. So here I am. I’m here and listening to you in every way possible.
Hi little bug. I fell asleep shortly after what I had written above. It must have been about 5 a.m. when I finally passed out. I woke up around 9, made some phone calls, showered and headed out into this big, beautiful city that I love so much with no destination in mind. I walked for a few hours. It’s cold, crisp, and the city is covered in snow. I didn’t go anywhere special but I just let myself get lost in my surroundings. I called your brothers and daddy to check in. I didn’t have anything specific planned but some things came about anyway. I met up with a lovely man named Scott. He is one of the men who started up Solving Kids Cancer which is based out of NYC. I touched based with him a couple of months ago to let him know I was coming out here and that I would love to meet him and pick his brain. So we ended up meeting later this afternoon. It’s so strange this little shitty fucking club of ours that we now are a part of. As soon as he walked in, I got up and gave him a hug. I have never seen this man before but I felt like I’ve known him forever. We slipped into an easy but difficult conversation. The one where you sit across from this stranger and you have no guard up and no filter because you notice he has the exact same sad eyes as you. So you sit and talk about your dead children, your alive children, your friends, your life before and your life after. No topic is off-limits. You sit and talk about how your kids got the short end of the stick and you say the word fuck a lot. You talk about how you know you have no choice but to change the face of childhood cancer. I felt myself breathe and exhale easily today, while in Scott’s company which I never do. He has so much love for his little boy, that was taken away, and I know he is going to fight this fight as hard as I am. He is not going to stop until things start changing. It was nice today to feel like I was not alone in this big fight. It was a day that I very much needed and I appreciated it so much. He let me pick his brain which I loved. He is smart and you know I always appreciate that. He totally has his PH.D in this childhood cancer thing. I’m sorry he does. I so wish he did not. I wish that for both of that but as we both know, wishes don’t fucking come true.
After my afternoon, I ran back to the apartment to change as my friend, Kelly, told her husband I was here and he texted me to see if he could take me to dinner. She is still back in Oregon and Derrick is living here while Kelly gets things packed up for their big move. I have not seen Derrick since the summer we spent with them, over in San Diego. The summer where you and their little girl, Grace, fell in love. I’ll never forget that summer, Ro baby. You and your little tan beach body. You and Gracie spent so much time together playing and loving on one another. It was such a good summer. It was good to see Derrick. He and Kelly have been such good friends. So supportive from a distance. We had a nice dinner and he showed me where he works now at MSNBC. We got caught up and talked about you a lot. Seeing him made me miss Kelly and our old life, so much. Our old life when you were here and healthy. Derrick sat and told me how strong I was to keep going on and pushing forward. He told me there is no way he would be able to do what I’m doing. I just told him that I don’t have a choice. I’m not going to just curl up in a ball and not fight for you and all the other babes out there who are dealing with this or who may be dealing with this in the future. I’m not here to sit back and do nothing. I’m still your mama, Ronan. I’m not brave or strong or a fighter. You are. All I’m doing is being your mama, in the only way I can now. After Derrick dropped me off, I changed my clothes and headed out for my most favorite thing in the world. My dark and dangerous Central Park run. It was so cold and the entire park is covered in snow. I ran a fast paced 6 miles. It felt so good it gave me a chance to clear my head from the things that had happened during the day. I took some time to think about you, a lot. Like I always do.
GOD FUCKING DAMN IT. I have not been on the computer at all. I have purposely been avoiding it. I just got on my Facebook to check my messages. I just found out that Coach Bemis passed away. The dad of the 2 most beautiful girls who came in to get some Fuck You Cancer bracelets a few months ago. I just happened to meet them and said hello.  It was there that they told me that their dad had been diagnosed with Stage IV Lung Cancer and he didn’t even smoke. I have been following his story even since. I didn’t know things had taken a turn for the worst so fast. I’m so sorry girls. I wish I could hug you and take this all away. I’m not going to say anything stupid like, “He’s in a better place,” because I fucking hate that. All I can say is that life is not fair. There are too many good people who are taken away and it will never make sense. All I can do is scream, “FUCK YOU CANCER!!!!!!!!!!!!!!!!!” for you. And cry for you and hope that if there is something else beyond this world that your dad will get to hang with Ronan. I don’t know what to make of any of this. When in the fuck did life get so hard? I mean, I know life is hard…. but this is beyond hard. This is beyond the petty everyday bullshit that people bitch and complain about. Try outliving your child. And Coach Bemis. He has a family that now is supposed to sit here and figure out how to go on without their dad? The most beautiful family. Who can justify this? You can’t. It’s just the fucked up life that we live in. You can’t make sense of any of this so people need to stop trying. Sometimes, there just are no answers. For as much as we want them, there will never be an answer that can justify any of this. I’m sorry Makenzie and Brianna. So fucking sorry.
Ro baby. It’s Monday now. I got up early this a.m. to go meet up with another Mama, Gretchen who lost her little boy, Liam to Neuroblastoma too. Just a year ago, today. Guess what else I found out about Liam? That he was born the day after you were. He was born on May 13th. I know that wherever you are, that you are friends. He sounds so much like you. I got to give Gretchen the hug that I’ve wanted to give her for so long now. I got to meet another person who has the same eyes as me. She started up Cookies for kids’ cancer. She is taking her pain and channeling it into something so unbelievably beautiful. All because of the love she has for her child. And because she knows that she does not have a choice because when the day comes, that she does get to see Liam again, she is going to be able to tell him how she did make a difference in the lives of others. How she did stand up and fight for all of these other innocent kids. How she stood up and fought for him and she never stopped just like the way, I refuse to stop for you. I’ll never stop fighting for you, Ro. You give me the strength to do this. What choice do I have? This is my way of taking care of you now. I’ll always be your mama. That will never change.
So, now I’m on a train to Washington D.C. I got invited on a little adventure that I jumped at the chance at all because of you. I am taking you with me, just like I took you with me everywhere. Oh, how we loved our little adventures so much. It’s going to be a good one. I can feel it. This trip is exactly what I needed. It’s been a whirlwind of calmness and craziness that I love. That I’ve needed because I tend to get stuck in a rut in AZ. I often feel like I can’t breathe there. I am really glad I listened to you and fought for this trip. Thanks for being such a constant, strong voice in my head.
I love you baby doll. I miss you so much. I hope you are safe.
xoxo

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A Rebel with a Cause and A Death Hike

Ronan. One of my blog readers called me a rebel with a cause. I LOVE this. I am a rebel. But a nice one. Unless you fuck me over, the way cancer has…. then you don’t want to mess with me. I do have a cause. A big one. It’s to stay here and keep going for you and all the other babes out there who are suffering from childhood cancer. I see your face in every single one of them. Why is America ignoring them? Why isn’t there more of a voice for these kids who are suffering from childhood cancer? Why isn’t the government stepping up to the plate? Why aren’t the schools taking a more pro active roll on educating our kids with awareness? Isn’t it their kids, that they are “educating,” who are sick and dying? You were one of their kids. And you got cancer and died but now life just goes on. You are just a dirty little secret, a pretend little boy, who got cancer, which they quietly acknowledged, but Shhhhhhh!!!!!!!!! Nobody talk about it. Forget it happened. A gold ribbon means nothing. It won’t ever happen again. Ronan who? The parties must go on! Doesn’t anybody wonder about you? Or the mommy who is home, crying because she is aware that it is the day of the schools Holiday Program and you should be there. But you’re not so I will sit at home with your Urn and pretend that you are there, singing whatever holiday song they are singing. As long as it’s not that fucking Silent Night song. I hate that song. I’ll never sing it again.

I was being obsessive today. Fuming about the lack of awareness that childhood cancer receives. I get that these things take time, but the statistics of childhood cancer, sicken me. The fact that things are not changing, is something that I am not o.k. with. I’m posting something below that is from a website that I go on frequently. It’s a foundation called Solving Kids Cancer. I’m meeting with one of the founders, Scott, in New York this January. Below are a few things about childhood cancer, that I hope makes you all mad. It makes me sick to even have to post this. But this is real people. It’s not make believe. It’s important. It makes me want to go shoot some more guns and punch a lot of things.

Pediatric Cancers:

Are not preventable and do not result from lifestyle choices
Are difficult to detect – children present with these cancers after they have already formed and often metastasized
Are the leading cause of death by disease in children
There are currently no real solutions for these deadly childhood cancers

There has not been a significant breakthrough in the deadliest childhood cancers in 30 years

One of the deadliest childhood cancers which has not seen therapeutic advancement is neuroblastoma
Is the most common cancer in infants
Because there is no system for detecting neuroblastoma, most children present at Stage 4 with metastases1
Despite aggressive treatment, the survival rate of advanced stage neuroblastoma in children >;1 year of age is only 30%2,3
Current neuroblastoma relapse survival rate: 0-10% (rates vary by institution)
Therapies being used are often adult hand-me-down agents that are overly toxic for children. These agents are also not aimed at treating the unique pathology of children’s cancers

Number of effective therapies available to all children with these deadly forms of cancer: 0
There is no standardized treatment for deadly childhood cancers — the only option children have for treatment is participation in clinical trials

Translational research transforms scientific discoveries arising from laboratory, clinical, or population studies into clinical applications to reduce cancer incidence, morbidity, and mortality.

The Translational Research Working Group (TRWG), National Cancer Institute (NCI)
The status quo is unacceptable

In today’s clinical research landscape, progress is too slow and promise too rare

Average time for a therapeutic discovery to be tested in humans: 5 to 7 years
The possibility of discovering appropriate therapies can be limited by accepted research standards (eg, large scale, multicenter, single-treatment, placebo-controlled, narrow eligibility criteria)

Basic research generally receives more funding than translational or clinical research

Existing ideas need to be identified, prioritized based on viability, and progressed into therapeutic development in humans
The usual players are not in the position to solve the problem alone

Pediatric oncologists are, justifiably, focused on treating their patients, not necessarily on developing and prioritizing new therapeutic discoveries

Research scientists and academic institutions have everyday demands which prevent them from investigating many promising basic research ideas

Rewards in this field are given for scientific discoveries, not practical applications of these discoveries
Pharmaceutical and biotech companies are not incentivized financially to develop treatments in small populations such as children with cancer

Conventional nonprofit organizations are not necessarily designed to progress therapeutic development

Parents are forced to become experts in their child’s treatment

With their child’s well-being as their first priority, parents bring a valuable perspective of ethics and a sense of urgency to clinical research
Children cannot advocate for themselves like adults with deadly or debilitating diseases can

To date, there has not been a single group, institution, or research entity effectively and solely dedicated to the task of solving kids’ cancer

Children need help now

You know what else, Ro? Lots of other bad news. While progress against leukemias and lymphomas continues, five-year survival rates for almost all solid tumors in kids and teens haven’t budged over the past 10-20 years. Funding is the number one issue. The NCI’s budget is $4.8 billion, and the total for grants that have anything to do with pediatric cancer is $173 million. Want to know a dirty little secret? Drug companies don’t want to cure cancer. It’s a big money making business, baby. Drug companies want kids to die from cancer. In 20 years the FDA has initially approved only one drug for any childhood cancer • 1/2 of all chemotherapies used for children’s cancers are over 25 years old. • 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.

WHY IS THIS ACCEPTABLE? WHY ISN’T AMERICA ANGRY ABOUT THIS? THIS CAN HAPPEN, TO ANYONE!!!!! If I were a parent, reading this, and I had a child who was healthy as one can be, like you WERE, I would be scared to death. I would be so scared because childhood cancer can happen at any age. I would take a stand so I could be a part of making things change so that childhood cancer gets the awareness that it deserves. So that someday, the survival rates will increase and treatments will be better and not so toxic. So that kids are given a chance to overcome this shitty hand they were dealt. It should not just because they were the lucky ones. This is my rant for tonight, Ro. I’m so mad. Sad. Jaded. Scared. Disappointed. Heart-broken. Always heart-broken.

Alright. My day. I don’t remember what I did except miss you. I read a lot of articles on childhood cancer. I read up about some doctors. Treatments. Funding. Etc….. I already know most of it. But now I’m getting my fucking Ph.D in this childhood cancer thing. Do you think they will give me a cap and gown when I graduate? Can it be purple? With a star on it? That would be nice. I won’t graduate until I’m on my death-bed and I know with my entire heart and soul, that I’ve done everything I could possibly do. Whatever that means. As long as I make you proud, that’s all that matters in the end.

So, after my day at the Starbucks office, because it is too painful to be in an empty house, I came home. Your brothers had cub scouts so they were with Mimi and Papa. I decided to go on a hike up Camelback. It was later in the day than I usually go, but I was determined to do Echo Canyon today. It was about 5:00 when I started. I hauled ass up the mountain with my music blaring. I didn’t even stop for a break for water like I usually do. I was partly in a hurry, because I knew it was going to get dark soon; but I had no idea how quickly that was going to happen. As I made it to the top, I went over to my favorite tree because I brought a bunch of your bracelets like I always do, to hang all over it. The tree was empty except for I noticed one rubber black bracelet hanging on it. I took it off of the tree, curious as to what it said. In yellow letters, it read, “Believe in yourself.” Tears welled up in my eyes. Was this from you? How is it, that on the day that I decide to hike Camelback, that this bracelet was just hanging there, like it was a gift from you. I froze and closed my eyes. I put the bracelet on and continued to decorate my little tree with about 20 of your purple bracelets. I wasn’t really paying attention to how the sunlight was disappearing and how there was only one other person at the top of the mountain as I was too caught up in my tears. I headed down Camelback. It usually takes me about 25 minutes to get down. I was about half way down when through my tears, I noticed that it was almost pitch dark. Um FUCK. I didn’t have a flashlight with me. I didn’t have a head lamp on. Nobody else was around. I couldn’t even see to navigate where I was. I got lost at one point. It was the first time, since losing you that I was really scared about the situation I was in. I decided to try to stay calm. I started talking out loud to you while trying to figure out how I was going to get down this steep mountain, in the pitch black, without breaking my neck. I said things out loud to you like, “Ronan. You know I wouldn’t be in this situation, if you were still alive. I wouldn’t be doing things like this. I would be at home, with you, where I belong.” Somehow, I made it down basically a cliff, to a little less steep terrain. I used the light from my iPhone which was better than nothing. Without this, I am certain I would have seriously injured myself or died. While I was in the middle of my Hike of Death, I stopped just to take it all in. The darkness engulfed the mountains which were illuminated by the moon, stars, and city lights. It left me breathless. It was so stunningly peaceful and quiet. It was so perfect and beautiful. I felt like I was looking at the inside of my soul. Uncharted territory. Risky. Dark and dangerous, but deep down so beautiful if you just stop to look at what is really there. If you are not afraid of the dark, the beauty will find a way to shine through. I was afraid of the dark at first. But then I just decided to embrace it and trust in it. I made it down safe and sound, but I’m not sure I’ll be doing that again, anytime soon. Or ever. I walked into our house tonight and I said to your daddy, “Well that was really stupid of me.” I think he almost passed out. Not from the dangerous thing that I had just done, but from hearing those worlds out of my mouth. I laughed at his reaction. Then I got sad for laughing because it just felt wrong. I wonder if it will ever feel right again.

I got a phone call today, Ronan from that Rockstar friend of yours. Bret Michaels. A phone call that once again, had me crying because I just cannot believe how much people believe in you. A phone call that filled me with hope that people really are going to start to listen and childhood cancer is not going to be ignored anymore. Bret is going to help make sure of this and he’s doing it for all the right reasons. There is no hidden agenda. He just wants to help because he can. He can’t ignore those big blue eyes of yours. I question the person, that can. There must be something wrong with their soul. Bret is not just talking the talk. He’s walking the walk. Or rocking the rock because he is that freaking AWESOME. After I hung up, I seriously walked over to the mirror that hangs in our entry way looked at myself. I looked at my eyes. They looked different. Like they had a fire behind them. A little voice in my head said to me, “You are strong. You are not weak. You can do this. You are doing this because YOU ARE STRONG.” I’ve never heard those words before, from within myself, until today. The voice in my head sounded just like yours, because it was you. It’s always you.

So Ro. That’s my story for the day. I would like to thank you for getting me down the mountain. You and Taylor Swift. I was listening to her with my headphones on. She sang our song which made me keep going. Because the stakes are high and the waters rough. But this love is ours. I love you my spicy monkey boys. I miss you. I hope you are safe. G’nite baby doll.