All posts tagged september is childhood cancer awareness month
Posted by rockstarronan on October 26, 2012
Ronan. It is amazing to me, that because of one girl, the entire world seems to know your name now. I am getting so many emails, blog comments, phone calls, and all I am hearing is how much people are inspired by you. How better the world is going to be, because of you. I am trying my best to keep up on everything but today, I made myself stay inside of our house so I could try to get caught up on some things. I didn’t happen. I am so beyond beat that I am thinking I may have a baby vampire growing inside of my belly, because it is literally sucking the life out of me. I’m not used to this. I don’t do well with anything that slows me down and I am having a hard time just letting myself be with all of this. I’m not going to lie. I am scared about this new baby. I worry a lot about not feeling attached to it yet. I think that is normal, after you go through such a heavy loss. But this being pregnant thing only seems to make me miss you more and more. My heart feels a thousand times more heavy then it has in a very long time. Part of this doesn’t even feel real to me yet. And then there is that part of me that still thinks this baby is just going to die, because I know that can happen. I am trying to stay calm and relaxed, but I am consumed with constant worry and sadness. I worry about things like, what if I don’t love this baby, as much as I love you? Is that awful to say? It sounds awful. But in my mind, I cannot imagine loving something as much as you. As of now, anyway. I worry that I won’t be able to be a good mom anymore, because I am so sad. I am trying so hard with Liam and Quinn, but it doesn’t come as easily to me as it used to. I think that is still the grief part of all of this.
Somebody said to me, “You are famous now.” I just replied with a simple, “No I’m not. I’m just a sad mom who lost who son and who would do anything to have him back. I almost threw up at that famous word. Famous because my son died and some beautiful girl wrote a song about him? No. Not famous. Just a mom who is in a very sad world now and someone very sweet decided to do something very beautiful because she has such a wonderful heart. I’m not sure quite what to do with all this attention. I just want it to all go to the awareness that childhood cancer needs, deserves and wants. I want our story to inspire kids to become doctors, who will do everything they can, to change the awful statistics, outcomes and treatments of childhood cancer. I want our story to inspire nurses to go into pediatric oncology, because these kids deserve to have the best people taking care of them with the biggest hearts. I want our story to inspire people to become child life specialists who really will make a difference in bringing a smile to a child’s face. I want our story to impact people in such a way that they follow their hearts and listen to their dreams no matter how many people try to stop them or hold them back. I want all this “fame,” to go to where it deserves to go to. To the real heroes of this story, the kids battling cancer. That is what I want. This spotlight is not for me, but them. This scary world where childhood cancer gets such little support and funding. Childhood Cancer is the number one disease killer in children. I know this the hard way. I am reminded of this every second of every single day. This HAS to change for these other kids. Why is it acceptable that we are just throwing away our future? You would have grown up to be something so amazing, Ronan. I just know this. But now, I’ll never get to see this. I will never get over this or “get better,” from this. You don’t get better from losing a child. You learn to live with it and fight on because you are left here to change this for others.
- Nationally, childhood cancer is 20x more prevalent than pediatric AIDS.
- Pediatric AIDS receives 4x the funding that childhood cancer receives.
- In one month there are 2x as many deaths from childhood cancer as pediatric AIDS for the entire year.
- In the U.S. almost 3,000 children do not survive cancer each year.
- Over the past 20 years, only TWO new cancer drug has been approved for pediatric use – Clofarabine (Clolar-Genzyme) in 2004 for ALL and Tenoposide (Vumar/VM-26-BMS) in 1990.
- Only 3% of the National Cancer Institute Budget goes toward Pediatric Cancer Research.
- September is Pediatric Cancer Awareness Month, which nationally goes unrecognized.
- The federal government recently cut the budget for Childhood Cancer Research.
- Currently there are between 30 – 40,000 children undergoing cancer treatment in the U.S.
- Young patients often have a more advanced stage of cancer when first diagnosed. Approximately 20% of adults with cancer show evidence the disease has spread, yet almost 80% of children show that the cancer has spread at diagnosis.
- Today, up to 75% of the children with cancer can be cured, yet some forms of childhood cancer have proven so resistant to treatment that, in spite of research, a cure is illusive.
- As a nation, we spend over $14 BILLION per year on the space program, but only $35 million on Childhood Cancer Research each year.
- There are 15 children diagnosed with cancer for every one child diagnosed with pediatric AIDS. Yet, the U.S. invests approximately $595,000 for research per victim of pediatric AIDS and only $20,000 for each victim of childhood cancer.
- The National Cancer Institute’s (NCI) federal budget for 2003 was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%.
- Research funds are scarce as most money is diverted to well-publicized adult forms of cancer, such as breast and prostate.
- In 2005, the American Cancer Society provided only 2.5% of funded grants, or 1.85% of dollars spent on research to pediatric cancer
If somebody had changed these things years ago, you may still be here. Now you are not here, and it’s my job to help do this so maybe someday another little boy or girl does not have to die from Neuroblastoma. Maybe if this disease gets the attention it deserves, breakthroughs will be made and the odds will not be stacked against these kids. That’s my hope for all of this anyway. I am moving forward with my plan. It’s a big one and if I actually sat down to think about my dream and what it is, I’m wanting to do… it might scare the shit out of me. Unfortunately, I don’t have time to sit down and be scared or worried that I am taking too much on because kids are dying left and right. That is unfucking acceptable. You died. That is the most unfuckingacceptable thing of all.
I am tired in a way that I don’t remember being tired in my life, ever. Did I mention that I am not a fan of being pregnant? I never have been. I would rather fast forward and give birth a thousand times than feel like this. I hope there comes a point where I get my energy back again. I don’t like being slowed down in any way. I am trying my best to listen to my body. My mind is restless but my body is exhausted. I woke up last night to one of the worst dreams that I’ve had in a long time. That any memory I had of you, was totally and completely gone. Like you had been erased from all of my thoughts, visions, and dream. It felt so real. I woke up with my pillow soaked with tears, scrambling to find you. I then had to remember that you died as I tried to put together in my head, what it was like when you were here. Please don’t let me forget I thought to myself. Please. My memories of him are all I have left. I would die without them. I spent the rest of today being completely thrown off by my dream of not being able to remember you. I’m still in a funk from it.
I fell asleep early tonight, but I’m up now. I would give anything for a solid, peaceful night of sleep. I would give anything, for a lot of things like having you back here. I miss you. I love you. I hope you are safe. Sweet dreams, baby doll. I wish you were here.
P.S. Fuck Cancer you fucking fuckwad for murdering my baby.
Posted by rockstarronan on September 12, 2012
It’s September 1st. The first day of Childhood Cancer Awareness Month. I’m aware in a way that I wish I never was.
Ronan. I had a productive morning. But now I can’t do anything, except sit her and sob and miss you. I don’t have these days a lot, but when I do, I just have to give in and allow them to come. I love you baby doll. I miss your little voice, so much. I know you miss mine, just as much. I hope you are safe.
Posted by rockstarronan on September 1, 2012
Posted by rockstarronan on August 31, 2012
Posted by rockstarronan on August 31, 2012
Ronan. Hi. I love you.
I’ve still been really tired, but really busy. I’ve tried to take it easy. I had dinner last night with Tricia and Marisa. My two oldest friends from my oldest most perfect life that no longer exist. It has been hard to be around them since going through all of this. Hard because I know they loved you in a way that a lot of people didn’t just because of the fact that they knew you so well. It’s hard to see that raw pain in their eyes that looks a lot like my own. They both know about this baby. Marisa was one of the first people I called to tell. She is my go to gal on all things related to pregnancy. She was ecstatic over the phone, but it was even better to see her in person. She gave me a long hard hug with tears in her eyes. She gave me the listen here talk which consisted of things like, “Now, I’m here to tell you, we need to be a part of this baby. You can’t push us away anymore. I am here to say, I will stalk you at your doctor appointments, your house, the hospital…. you have to let us be a part of this. We all need this. This is such a good, positive thing for all of us. Our friendship needs this. We are not going anywhere. We are taking over.” I giggled, got teary eyed and quietly listened to my friend do what she does best which is be a jewish mother hen/best friend. I told her I knew. That of course I would let them be a part of this. I miss them so much. I told Marisa I know she has stepped back and given me my space, but I never thought she went away. Believe me. I know what it feels like to have people go away, Ro. A lot of people that used to be in my life, have. I don’t know if it’s due to the uncomfortableness of this. Due to not knowing what to do/say/or how to act. Due to me pushing. Or a combo of all things. It doesn’t really matter. All that matters is I know who is here for the long haul. The good the bad and the worst. I’ve always known our Little M was in this for everything, no matter what. I have missed my friend so much. It was a 3 hour dinner that was very much needed. I could have stayed tucked in our little table all night long with the two of them. It was a really, really good dinner. They talk about you so much, too. They are not afraid to speak your name. I so need that. I means everything to me.
Your Liam asked me today how a baby got inside my stomach. Ummm…… this was is not a story I am ready to explain to my 9-year-old. I just reacted with the first thing that came to my mind which was, “A stork.” Liam looked at me and goes, “What’s that?” Crap. Kids don’t know about storks these days. I said, “It’s a bird that leaves a baby on the porch of the house.” Liam rolled his eyes at me and goes, “That’s not true.” “You’re right, that’s not true,” I said. I then responded with, “I asked Ronan for a baby. I told him I thought it would be really nice for all of us if we could have a baby in our family.” Shit. I hope this works I thought to myself in my head. Liam just looked at me and goes, “O.k. That was really nice of him to do.” YES! I smiled at your brother. I couldn’t believe that answer worked. Saved by your Romazingness once again.
Holy hell. I am so glad this secret is out. I have hated keeping this in. It’s a breath of fresh air to be able to talk about things on here! I was so nervous to post for some reason. You all are the SWEETEST. Your kind words have truly made my night. Thanks for all the support and love, with everything. I can’t believe I have not gotten any nasty comments yet. That NEVER happens! It’s nice to know that the kind-hearted people out weigh the mean/sad people by far. You all are truly the best. Oh, and thank you to the man that came up to me today at Chelsea’s Kitchen. He was someone I didn’t know, but said he recognized me and wanted to tell me how this blog has changed his life and made him such a better dad. I never get dad’s that come up to me! It’s always moms. It meant so much to me and truly made my day. Thank you Chelsea’s Kitchens stranger:)
That was yesterday, Ro baby. Today, is here and I am beat. I woke up today, so tired. I didn’t sleep well last night. Too many things swirling through my head. I had another golf lesson today. My giant boobs are becoming a handicap and interfering with my game. Just when I was getting really good…. my professional golfing dreams might have to be put on hold. My sweet instructor tried to convince me otherwise though. We talked a lot about you today and this new baby. She said she was sick to learn of all I had been through. I told her I knew, that everybody was sick over the loss of you. My lesson was great but my energy was zapped after I left there. This baby does not like the heat. I came home to try to rest. My phone kept buzzing with text messages and emails. I had too much to do to slow down for the afternoon so I sucked it up and got a lot of things done. I was on my way over to see Katie when I pulled over to stop at A.J.’s to get us some drinks. I got a text message from Robyn, Ezra’s mom who has now become someone that I treasure so much, that knowing she is in pain, the same way that I am, destroys me. Ezra’s fourth birthday is this Friday. She should be planning it not thinking about what she is going to do, on his birthday to survive the day. She should be playing with her twin 2 and a half years olds, not just one of them. We both decided that life should not go on after this. I told her this life is a death sentence, where we are forced to stay alive. I went to go into the store, reached for my wallet and pulled out a bag of your ashes instead. This caused me to go into complete hysteria and have a total breakdown in my car where I couldn’t breathe or stop screaming and crying through my tears. I forced myself to go into A.J.s. I didn’t have my sunglasses to hide my blood-shot eyes but I didn’t care. Iced Tea’s or bust. I made it out alive, but I went in armed with my FUCK YOU stamp that my friend from Australia, Ali, sent me. I was going to stamp it on anybody that got the way of a grieving mom who should have been carrying a 5 year-old on her hip, not his ashes in her purse.
I spent the rest of the day with Katie and a got a surprise visit from Mandy Bee who just happened to stop by The Garage while I was there. We caught up and made some plans for a little event we are doing on September 20th. I’ll talk about that later as I am wiped out tonight from this day. G’nite baby doll. Sweet dreams. I miss you. I love you. I hope you are safe. Have a good party with Ezra on Friday. I know you two will do something extra spicy. I miss you so much.
Posted by rockstarronan on August 29, 2012
Please somebody come dressed like this.
It’s going to be the BOMB! Tell all your friends! Hope to see you there!!!
Posted by rockstarronan on August 19, 2012
Ronan. I saw your Dr. JoRo today. It’s been way too long. It was a catch up session and a pow wow session combined. She wanted to know what’s been going on, if I’ve had quiet time, how I’m feeling, etc….. I told her today that I think I have decided that I’m not going to kill myself. She hardly flinched when I told her this as I think she already knows this. I guess I’ve known this for a while too….. but sometimes I think it would be nice to take the easy way out, so I wouldn’t have to deal with any of this pain. I get tired of it. But then I think of your face and how unfair that would be to you…. not to mention your daddy and brothers. And Dr. JoRo and Sparkly. And a whole lot of other people who love me. I could never be so selfish to actually do something like that. But I do think about it. Not a lot, but it does comes up. I’ll bet you it comes up with any parent who has lost a child. I’ll bet it is just part of this process. It almost seems natural due to being left here, expected to survive such extreme circumstances while everyone else goes on with their day-to-day lives. I won’t ever be able to go back to the day-to-day normal life that existed before all of this. Every single thing I do involves thinking about you, missing you, and hurting for you. Whether it be folding the laundry or how I am plotting to take over this world with my evil plans that often involve the fuck word that I love so much and seems to offend so many people. Bahahahahaha!!! That was my best, evil laugh. Fucking fuck little dude. People are sick and want to see me fail. I fully get that. It’s just the way this world works. I don’t have much to say to that because it’s not really worth my words. I just feel sorry for them and the things in life that they choose to HIDE behind. What a pitiful life. All I’m trying to do here is spread the RoLove and maybe help save some cancer babes lives while I’m at it. But I understand how that could seem so evil as I am not doing this the traditional route. I’m choosing to do this my way or the highway and anybody who has a problem with that can SUCK IT MOTHER FUCKERS!!!!!!!! Traditional is not my style when it comes to, “Oh, I’m sorry, but my son died of cancer so let’s just sit back and be nice about it while I shut the fuck up and don’t be vocal about it so things don’t ever change.” Gag me.
People are scared of different. They would rather sit back and judge and hide instead. Uhhhh…… hate to break it to ya, but nobody normal, ever really changed the world. It’s always the rule breakers, the outside of the box thinkers, the passionate ones, the one’s who don’t take NO for an answer, the one’s who FIGHT back not slink away, the “crazy,” ones. It’s not the let’s play it safe guys and do everything the same exact way, that everyone else is doing, or let’s just not do anything at all. That won’t change a thing. I’m not here to follow anyone’s else’s lead, unless you are a rule breaker too, then we can talk. I’m here to listen. I’m here to be inspired. I’m here to watch the way some other very inspiring people are doing things differently in life. I’m here to grab onto the hands of the people who are willing to do things differently as well. It will take an army to change things, I know this which is why I am sitting back and quietly observing a lot. It’s as if I’m seeing a whole new world of people out there. They are so beautiful that it’s blinding. In a good way. It’s feels so good to be blinded by the sparkling lights of the human soul.
Do you wanna know one of the sparkling lights that I am blinded by every single day? So much so that she is in my daily thoughts because I love her that much. My Dr. JoRo. In my dream of all dreams, and I have many, she is in each one of them. I would walk through fire for her. If money were no object, I would give childhood cancer funding and her MISS Foundation, everything I had. The fact that she has to work so hard, for the funding she gets, which is not a lot for all she does, is such bullshit. Everyone should be supporting her. She is saving the lives of all these parents in the world who are just tossed out into the streets, so scared and vulnerable. She is fighting the good fight and how in the world isn’t EVERYBODY supporting her? She is not doing this to make money or line her pockets like so many other organizations out there. Ummm, hello…. Dr. JoRo does not even take a salary from the MISS Foundation. She is THAT kind of a human being. She is an anomaly in this world. She could give a flying fuck about making money for herself. She wants to help others and that’s it. There is no hidden agenda. What you see is what you get and what you get. And what you get is one of the SMARTEST, KINDEST, PASSIONATE and BADASS souls that I swear to you Ro, has ever existed. She is my Gandhi. I need you to watch over her. I need her to be here with me for a very long time because we have a lot of work to do, together. I know Chey is watching over everything she does so she really is in the best hands possible; but I know you are helping out now too. I know you are the one who led me to her. Yes, I got your little sign. The JoRo sign. It’s not a coincidence that her middle name is ROse, baby. I know that. Thank you.
I not only go into Dr. JoRo’s office to talk about death, grief and all things painful. We also talk a lot about life things, which was probably one of her biggest clues that I had decided not to off myself. I guess when you are talking about the future, it means you are less likely to kill yourself. At least in my case. I’m not the grief expert or anything, but this would seem to make sense. Today, I went in there and we discussed an email I had shared with her that I had written out. Today, I went in there with “I have an idea. A really, really big idea….” I have a lot of these ideas in my head that I am so excited about, I want to scream them from the rooftops and go jumping right in, but I understand it is easier said then done. In my mind, everyone should just hear my ideas and say, “Yes! You are a genius! Here is your 100 million dollars! Let’s start saving all these cancer babes!” Dr. JoRo quickly brought me back to reality in the most tender, caring way. By saying, “I absolutely think you can get this done, but let’s cross off X,Y, and Z to get there first and I will help you. This has to be a really well, thought out plan. So, let’s sit down with this dream of yours and figure out what it is we need to do, to make it happen.”
I like a plan. A plan says your serious. And I am serious in the most serious way possible; with everything I have. With everything that is you. But I understand there has to be logic, rules and structure in place as well. I can play by the rules with some things, but I will keep it extra spicy for you too of course just to put your little spin on things. Lots of big dreams all inspired by you and all the other kids and families we’ve been touched by. Cancer peeps and non cancer peeps. It’s amazing to see the movement you are creating.
There is no dream that is big enough for you, Ronan. I promise you that. I promise you, we will get this done. This is what you want. I know it. I love you. I miss you. I hope you are safe. I’m going to try to get some sleep. My new motto is, “I’ll sleep when I’m dead.” I said this to your favorite lovie the other night. He didn’t laugh. He didn’t like it. He thinks I need my sleep. I will try to listen to that voice of reason of his that seems to be the one I listen to. And yours. Although, I feel like yours is always pushing me not to listen and to break the rules. You are so spicy. G’nite baby doll. I love you to the moon and back. G’nite little RoFriends. You are the best for believing in us and for letting Ro make you better people. I love you.
Posted by rockstarronan on February 28, 2012