Tag: awareness

This is all because of you! Thank you so much!

 

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Thank you to everyone who voted and for the awesome people at Parents Magazine for being so supportive and wonderful. If you can, pick up the June issue of Parents Magazine to see our amazing award!

I love you Ro. For you. Always for you.

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Let’s hear it for 5 dollar Friday!

 

 

It’s so easy! It’s 5 dollars! We are so very close to having Dr. Mosse’s trial funded. There’s only 16 days left, until I run 26.2 miles, without having trained for it. There is still plenty of time to donate to this great cause. Let’s save some kids! Every dollar counts and together, we can make a huge difference!

http://theronanthompsonfoundation.com/donate

Thank you so much!

xoxo

Dear Mr. Andrew Fuckwad Becker of the American Cancer Society

Yes, I called you Fuckwad. You have really, really pissed a lot of people off. I would really hate to be you right now. Actually, you know what? I’ve changed my mind. I would trade places with you, in an instant. Do you know why? Because when I was trying to find a picture of your pathetic face tonight, to print out and attach to my punching bag, I read that you have 3 children. 3 healthy children. I too, had 3 children. 3 boys to be exact. Now I have just 2 boys, among the living. I had to have my 3-year-old son, Ronan, cremated, just 8 months ago because he died from childhood cancer. It sucks to be you because of the ignorance you have chosen to display and the backlash you are going to receive. But it really, really sucks to be me because I have a child who is dead. So therefore, I would trade places with you in an instant. I would rather have my head on a platter, with 3 healthy kids, whom you get to tuck in at night, then to have to be the parent of one who has died from this “rare,” disease called childhood cancer.

Have you even given any thought to all the kids who suffer and die from childhood cancer? This rare disease of childhood cancer which is actually in fact the NUMBER 1 CAUSE OF DEATH BY DISEASE FOR CHILDREN! I really doubt it because I’m sure you are too busy hiding behind your big, fancy desk in your big, fancy suit. I have given a lot of thought to all the kids who are suffering or who have suffered from childhood cancer. One in particular, my Ronan. My Ronan who was the love of my life. Who was the most beautiful little boy who ever existed and I’m not just saying this because I’m his mom. Anybody who knows of Ronan and our story, will tell you this. A lot of people know about Ronan because he was that amazing. Did I forget to mention that I too, have a blog? I do, all because of Ronan. As of now, I have 2,264,051 million hits on this little blog of mine. They all know about Ronan, and now, they are all going to know about you too. I am going to post your words below, just so my little blog readers can get an idea of exactly what you have written. I’ll let them decide for themselves, if you are indeed the fuckwad that I have called you out as being tonight.

Bald Barbie Demand is an Over-Reach

We apologize if the below post offended some of our readers. We realize that in our zeal to highlight an issue that deserves debate, we may have sounded insensitive. This post was written to provoke debate about the proliferation of products marketed to raise awareness, and we think asked legitimate questions. We believe discussions like this can help focus all our efforts more closely on our shared goal of defeating cancer.

You may have seen in the news that a Facebook campaign is underway to pressure Mattel, the maker of Barbie Dolls, to manufacture a bald Barbie. Cancer is one of, but not the sole reason for this campaign. The group’s Facebook page notes,

“We would like to see a Beautiful and Bald Barbie made to help young girls who suffer from hair loss due to cancer treatments, Alopecia or Trichotillomania. Also, for young girls who are having trouble coping with their mother’s hair loss from chemo.”

To the extent that this effort is about fighting cancer, we should ask ourselves what it accomplishes, who would benefit, and while we’re at it, how about asking if a bald Barbie could in fact do more harm than good for kids and parents, not to mention Mattel.

In a world already littered with cancer totems such as rubber bracelets and pink everything (a limited number of which are from ACS initiatives) , do we need one more thing whose function is to “raise awareness” about cancer? Is raising awareness worthwhile? Over at Mary Tyler Mom, who herself is the mother of a child who died from cancer, the answer is a resounding “no.” She makes the excellent suggestion that a donation of $10-$20 to support cancer research would make far more of an impact than buying a doll.

We know that funding more research is key, and every dollar helps, but who would benefit from sales of these dolls? Would it really be about fundraising?

The downside to raising awareness has been well documented by activists in the breast cancer arena. Awareness of breast cancer, for example, has been so thoroughly achieved, and many women are so afraid of the words breast cancer, that about one in 20 who are diagnosed with LCIS, a condition that may lead to breast cancer, are choosing bilateral mastectomy; the surgical removal of both breasts.

This isn’t to say that awareness doesn’t have an important role in defeating cancer. It can be incredibly important when it comes to informing people about ways to reduce risk or about getting recommended screenings regularly. But there may be better ways to attack childhood cancer. Just like radiation and chemotherapy, awareness must be deployed thoughtfully and carefully.

Childhood cancer is exceedingly rare. I would also argue that cancer is rare among the age group of women likely to have daughters young enough to play with Barbies. Women have about a one in 50 chance of developing any kind of cancer before the age of 40 . Which brings me to the claim that bald Barbies can help improve the self-image of little girls who are faced with having lost their hair, or seeing their mothers lose their hair. If they are mass marketed, many of these dolls will end up in the hands of girls who luckily aren’t likely to be touched by cancer in themselves or their mothers. But could they end up being terrorized by the prospect of it in a far outsized proportion to their realistic chances? There is no reason to create this sort of fear. It’s why we don’t see advocates calling for lightning strike dolls.

My final concern is the no-win position Mattel finds itself in. Last year the company went above and beyond, and made one bald Barbie for a four-year-old who was going through chemotherapy. Now the company risks a severe backlash of ill will if it does not accede to the demands of the social media mob. After all, what is more sympathetic than a little girl with cancer? How could this corporation be so unfeeling as to not make the major investment required to put a new product on store shelves? What happens when the next group demands a custom Barbie to represent its social concerns?

Sadly, some 1340 children under age 14 are projected to die from cancer this year. Each one is a tragedy, and they and their families deserve sympathy and support, but it is critically important to pull back from this exercise in consumer bullying and ask whether the need this movement is rising to meet is as big as imagined, and whether it will result in any meaningful support reaching those who need it.

You totally fucked yourself from the get go when you used the word, “pressure,” in regards to the Facebook campaign to get Mattel on board to make a bald Barbie. Couldn’t you have chosen a nicer word? Who the hell pissed in your cereal this morning to get it off to such a bad start? Nobody is pressuring Mattel to do anything. Some women, came up with a beautiful idea and simply put it on the table. It was such a beautiful idea, that a lot of people have decided to get behind this idea in regards to trying to make it happen. That’s how you get shit done, you presumptions asshole. It’s called passion. It’s called a vision. It’s called a dream. Things that you obviously have no idea about. Things that my Ronan and so many other kids out there will never get to feel because they are being murdered by childhood cancer. MURDERED you Fuckwad!!!!!! Chew on that for a while. Try to swallow that pill without choking on it. And it’s all due to the lack of funding that childhood cancer gets. Because its too sad of a story, because bad things don’t happen to good people, and because their are too many people looking the other way. This is all such bullshit. These kids are our future. We as adults should be screaming the loudest and the hardest for them. They should be the one’s getting the MOST funding out there. I would have traded my life, in a second for Ronan’s but he never even stood a chance and I’m blaming this on our greedy, self absorbed society. Share the fucking wealth. Give these children a voice and a chance! None of them deserve any of this. It’s time to stop looking the other way. I now know this, the hard way. I now know this because I am living proof of what childhood cancer can do to the sweetest most innocent child. I will have to live with this for the rest of my life. I vow to fix this epidemic in this society. So someday, another Ronan won’t have to die. What do you plan to do about this Mr. Andrew Fuckwad Becker? Besides be blinded by your ignorance? I really hope you choose to wake up and be part of this change. I really hope you take this opportunity to take this wrong and turn it into a right. I really hope you change your insensitive ways. I really hope you prove me wrong and make me eat my words to you.

With your pea sized brain, Mr. Asshole Fuckwad Becker, you asked 3 little questions. The first being, “What would having this Barbie made, accomplish?” Look dude, I’m no rocket scientist, but are you even serious with this question? My 8-year-old could this answer question, in his sleep. A better question my be, what WOULDN’T this accomplish? It could accomplish SO MANY THINGS. It could bring the awareness to childhood cancer that it deserves so that one day, maybe a parent will not have to watch helplessly as their child dies. Awareness=Funding and Funding= CURES. The survival rate of breast cancer is proof of that. Even if the making of this Barbie, only accomplished something so small, which is actually huge in my eyes, such as making one child smile…… well that is good enough for me.

Your second question is actually a good one because so many people are so unaware of where the money goes in which they are so generously donating. So, where would all the money go? I have no idea and I don’t care as long as it goes 100% to the research that is actually going to make a difference. As long as it may actually save the life of a child. I selfishly want it all to go to Neuroblastoma, which is what my Ronan died from. It is actually one of the least funded pediatric cancers, but in my mind it should be the one funded most. Obviously I am biased because of my Ronan, but if you had been his parent, you would understand. I have a question for you, Mr. Asshole Fuckwad Becker. Where does all the money go that the American Cancer Society raises? To CEO whom I’m hearing, makes about a million dollars in compensation per year. I know where it doesn’t go. To helping fund and support pediatric cancers. This makes me really sad. I have friends who worked really hard to raise money for the Relay for Life this past year. I will NEVER in my LIFE, support this organization unless some serious changes are made such as supporting childhood cancer. I am not going to support an organization that uses the money to pay overhead, salaries, fringe benefits and FUCKING TRAVEL EXPENSES. I will NEVER support a organization like yours again, Mr. Andrew Fuckwad Becker. I hope my lovely little blog readers will choose to follow my lead on this one. They are pretty amazing and I also know they are pretty pissed so I am not worried about them. I know they are able to sleep at night due to knowing that they are going to help be the change in childhood cancer that we so need. It takes an army, you know. And I have a really, really great army behind me. You, on the other hand may need a long, exotic vacation somewhere in order to sleep again. Please be sure to have an extra margarita, on me. But I won’t be paying for it out of my son’s foundation. I’ll be using that money, to actually make a big dent in this neuroblastoma world. Because due to my son dying, I get to make the world a better place. Lucky, aren’t I???

Your 3rd question is just as stupid as your first. Pull your head out of your asshole, and think about this. I’m pretty sure by now, you can come up with the reasons why the making of this doll, would not harm anyone as long as the proceeds go to the right places. I never knew making a child smile, could hurt someone. Childhood cancer has been ignored for long enough, which is why children are still dying from it. If you are too ignorant to answer this question tonight, Mr. Asshole Fuckwad Becker, I’ll make it easy for you. Ask yourself this. WHAT IF IT WAS YOUR CHILD???????? Awwwwww!!! Did a lightbulb just go off in your head? Did a tear just slide down your cheek?! I doubt it. Because you don’t have a child with cancer and you never will. But guess what? I hate to be the bearer of bad news but it can happen to you. It can happen to anyone!!!! I wouldn’t wish this on anyone or any child. But FUCK. If something like this does ever happen to you or anyone that you know, you are going to feel like the worlds biggest prick; and rightfully so. I hope you know by your little post today, we can all read between the lines. What you are actually saying is, “DON’T RAISE AWARENESS! KEEP KILLING OUR KIDS!” Way to go, Mr. Fuckwad Andrew Becker. I hope you feel like a winner tonight.

Alright Mr. Asshole Fuckwad Becker- I’m going to end this post tonight. Trust me, I could go on and on and on about your dumbass post but I’ve grown tired of you. I’m going to let my lovely little blog readers, handle the rest for me. I’m sure your inbox is being bombarded with emails at this very moment. You’ve now taken my night, and hijacked the writing I get to do to my dead son, due to this “rare disease.” For that alone, you can go and fuck yourself. And no sweet dreams for you. Only for Ro. Always for Ro.

Sincerly in the nicest way possible,

Maya M. Thompson

Ronan’s mama

TO ALL MY LOVELIES,

Here is some more information about our dear new friend, Mr. Asshole Fuckwad Becker. Feel free to let him know your opinions, whatever they may be. I’m sure he’d love to hear from you.

Andrew Becker is Director of Media Relations. He is the New York-based member of the national media relations team. His work includes all patient and family services offered by ACS, as well as global health, corporate finance, and supporting the overall brand. Before joining ACS, Andrew spent a decade using his political communication and public relations training for good instead of evil. He was involved in the first few years of the American Legacy Foundation’s truth campaign, as well as other tobacco prevention work, and counts projects for NIH and the Ad Council among his proudest professional achievements. Andrew is a father of three, so he expects to be working for decades to come. E-mail him at andrew.becker@cancer.org.

Because Kids get Cancer, too.

 

Ronan. September 1st. Childhood Cancer Awareness Month. How many people out there, are aware? Not enough. Or if they are aware, they are choosing to ignore it. Assholes. If everyone was AWARE and not IGNORING it, you may still be here. I truly believe that. Was I that unaware Asshole? Totally. Do I wish I still were? If it meant having you here? Absolutely. I would give anything to have you back. You know this. I would sell my soul do the Devil in a heartbeat. It would be so much better than being trapped here, without you. But someone else had other ideas. I don’t like it, but I have to start to accept it; a bit more and more, everyday.

Otherwise, I am going to turn into that bitter mama who is mad at the world. Who has EVERY right to be mad at the world and to turn her back on everything. I don’t want to end up this way, but sometimes it seems like it would be so much easier than to continue on this fight. I know I don’t have a choice, Ro. I know I have to make a difference even when people tell me that I DON’T have a responsibility to anyone but myself, your brothers and your daddy. I know this is not true. I know I still have a responsibility to you. I have to make a difference because this is what you would have wanted. I know you want me to find a bigger purpose in this world than just worrying about if my ass looks big in my LuLu Lemon gym shorts and what to cook for fucking dinner. I know you want me to leave your mark, everywhere. I have no choice but to honor you in the biggest way I can. That means that I will fight this fight until people start to listen. Until huge companies, start to honor Childhood Cancer, the way they do Breast Cancer. Until people stop turning their cheeks because it can’t happen to them. Fuck you. It can. I hope it NEVER does. But I hope if it does, you never have to walk in my shoes because I am going blaze the trails so that Childhood Cancer does start to get the attention and funding that it deserves. So that one day, there WILL be a CURE. So beautiful families, don’t have to watch helplessly as their child dies even after they have done all they can do. The best they could have done. The best will never be enough, because you still died, Ro. I will always feel the guilt of this inside of me. I will never understand why my love was not enough to save you. It should have been. But it wasn’t because Childhood Cancer is that ugly. That real. That scary, that it can change everything in the blink of an eye. But don’t worry. If you choose to ignore it, it cannot happen to you. Bullshit. I am like a flashing, neon sign now people. If you cannot stand to hear this story, because it is too sad, than stop reading, because you are NOT worthy of knowing this beautiful love story. You are not worthy of watching the beauty that is going to come out of losing the most beautiful boy in the world. If you are strong enough to be here, I thank you from the bottom of my heart. I love each and every one of you. I need your help, more than ever. You are all going to help in this fight for Ronan and thousands of other children, who deserve a voice. I feel so blessed that Ronan has touched your lives, even if many of you did not know him. If you are not going to be the loudest cheerleader for me, Ro, or thousands of other precious kids who are going through this…. just knowing that you feel like I have made you love your babies, your family, friends, appreciate the little things more…. still means so much to me. Just knowing that it is because of my Ro, that you feel this way… makes me feel like I am capable of making this world a better place.

I know I have a big job ahead of me, but I feel as if my head is becoming a little clearer, more and more everyday. I feel like the fog is being lifted. I’ve stopped all of my medications. All of them. Even the sleepy meds. Cold Turkey, YO! Just because everyone told me I couldn’t do it, and I shouldn’t do it. Well, I did. I am finally starting to feel free again. I am taking Melatonin to help me sleep. I should have listened to my Mr. Sparkly Eyes at the beginning of all of this as he was always suggesting it. Of course, I had to learn the hard way. Thank GOD for Stacy and for bringing that bottle over to my house the other night. Don’t get me wrong…. my sleep is still not wonderful. I still toss and turn. I still wake up, screaming and crying for you. I am still having very vivid, and mostly awful dreams. But it’s not any worse than it was while I was on my prescription sleeping pills. And at least this Melatonin, is a natural substance. I am a fighter and I will fight though this. I refuse to become one of those moms who ends up going through something awful and becoming addicted to prescription meds. No judgement at all. I just know that is not for me. It is not the way I want to live this life. I want to feel, as painful as it may be. I don’t want to be numb.

I’m in the best place I can be, as of now. It’s not good and I know this. I know I am being hard on myself which is why I’ve named this phase of grief, the Phase of Torture. I am doing a lot of things that are not good for me. Not eating, pushing myself on my Inferno Hikes, throwing up a lot if I do eat, second guessing everything we did for you, mentally beating myself up…… But I am here, I am getting up out of bed, I am being a good mom to your brothers, I am being honest, I am going to a lot of therapy, I am feeling. I AM FEELING. I have not felt for a very long time. I was numb and in shock. I still have those feelings some days, but they are less and less.

Ro. I fell asleep about an hour or so ago, but now I am up again due to my dreams. I hate them. They never involve you, and they are always so scary, sad, and mean. Kind of like my everyday life without you now. Where are you and who is taking care of you? Who is brushing your teeth, rubbing your little back, and singing Twinkle Twinkle Little Star to you? It’s not me. I hate this.

I’ve written to you for days now. Not being able to finish. I have too much to say, too little to say, too many scary things going through my mind, that I don’t want to say. I’m feeling tired, sad, and angry. I’m trying to do my best, to stay positive. Walking through this life without you by my side is utter torture. You spent 4 years attached to my hip. Trying to go on with you gone now, hurts so much. And some days, I just don’t want to do it anymore. I just want to be with you again. I’ll never understand, why it had to be you…. why did you have to be the one to be taken away. Who would be so cruel to do such a thing? I don’t want this life lesson. I don’t want to be grateful for all the little things because I don’t have you anymore. I just want you back. I think I may have to throw up now. We are all here, tucked away in our quiet house for the night. You are not with us anymore and everything about our lives is so different, in the most awful way. I wish I really had an arm missing, or half of my face…. anything but you.

This weekend has been a blur. Lots of family time. We had Kenny, Stacy and the kids over last night. Always good to be with them as they are like family and they just get it. They know how much we need them and they have been such amazing friends to us. I was in a foul mood, talking trash to your Daddy….. being a tough ass. I had a good talk with Stacy, who tried to reason with me a bit. There was no reasoning last night and I usually listen to her. I told her how I didn’t understand how I was just expected to go on and just go about normal things now. Like how could I possibly go on a trip with your Daddy in a few weeks? A trip. Are you fucking kidding me? This is a trip we’ve taken together for years now… and I am supposed to go in a few weeks. Is everyone on crack? This is NOT a normal year. Normal things do not exist yet. Will they ever again? No. But I need some time. I cannot just be thrown back into this life, and be expected to do things that I have done before, in the past, when you were among the living. You just left this earth. I am still here, and trying to figure out how to navigate my way through the fucking grocery store. How am I supposed to hop on a flight to Vegas in a few weeks??? It seems like a sick joke to me. I tried to go to the race tracks in Del Mar over the summer and almost had to be hauled off to the loony bin because I could not handle all the obnoxious people, smoking everywhere, in their stupid hats and clothes. And going to Vegas, during a normal year has never really been my cup of tea. I can stand that place for about 24 hours, on a good day. Can you imagine how I would freak out, going there this year…. it gives me anxiety just thinking about it. If I go, I’m going to wear a shirt that says something like, “My son just died, but let’s gamble anyway.” WTF people?!?! I just want to be left alone. I just want my time to grieve for you. I don’t want to go to Vegas, I don’t want Thanksgiving, I don’t want the weekends anymore, I don’t want to pretend like this is getting easier….. because it is not. Why is everyone acting like just because it’s been almost 4 months, that I need to be moving on, and starting to feel better. I WILL NEVER FEEL BETTER. That I can guarantee you. Do you know what a good day for me is like now? Let me just tell you. A good day now, is a day when my throat does not feel like it is going to close up and I am going to just suffocate to death. A good day is when I can actually swallow, without it hurting. A good day is when I can actually eat a meal, and keep it down. A good day is when I can put on a happy face, and check off some of the things on my shit list. I’ve come up with a new saying that I have adapted. Fake it till you make it. Yup. I’m faking it everyday that I am up out of bed and being productive because I don’t want to be at all. I don’t want any of this life without you.

Did you know Ro, that my mind is so distraught from losing you, that I cannot remember any happy memories of you? My mind cannot even go there. The PTSD is real and it is part of what I am going through now. I’ve talked to all of my therapists about it. They all agree.

 

PTSD can cause many symptoms. These symptoms can be grouped into three categories:

1. Re-experiencing symptoms:

  • Flashbacks—reliving the trauma over and over, including physical symptoms like a racing heart or sweating
  • Bad dreams
  • Frightening thoughts.

Re-experiencing symptoms may cause problems in a person’s everyday routine. They can start from the person’s own thoughts and feelings. Words, objects, or situations that are reminders of the event can also trigger re-experiencing.

2. Avoidance symptoms:

  • Staying away from places, events, or objects that are reminders of the experience
  • Feeling emotionally numb
  • Feeling strong guilt, depression, or worry
  • Losing interest in activities that were enjoyable in the past

Things that remind a person of the traumatic event can trigger avoidance symptoms. These symptoms may cause a person to change his or her personal routine. For example, after a bad car accident, a person who usually drives may avoid driving or riding in a car.

3. Hyperarousal symptoms:

  • Being easily startled
  • Feeling tense or “on edge”
  • Having difficulty sleeping, and/or having angry outbursts.

Hyperarousal symptoms are usually constant, instead of being triggered by things that remind one of the traumatic event. They can make the person feel stressed and angry. These symptoms may make it hard to do daily tasks, such as sleeping, eating, or concentrating.

It’s natural to have some of these symptoms after a dangerous event. Sometimes people have very serious symptoms that go away after a few weeks. This is called acute stress disorder, or ASD. When the symptoms last more than a few weeks and become an ongoing problem, they might be PTSD. Some people with PTSD don’t show any symptoms for weeks or months.

I relive what I went through with you, over and over through the day. I don’t have any other memories of you as of now, besides you being sick, you dying, and the love we had for each other. I am trying to work past this but as of now, I’m stuck. Maybe that’s why I cannot dream about you. I’m stuck in such an awful place in my mind, trapped in between awful memories, and my reality, which is Hell on Earth.

I went Inferno Hiking at 1:00 today. Nobody else was on the mountain. It was nice but I hardly remember any of it. I have decided that the reason I love it so much is because it is so painful. So hot that my socks burn the bottom of my heels. It is dangerous and it is the only time during my days that I have to let go of the memory of you not being here. When I am on my run, down the mountain, I have to stay so sharp, so focused on what I am doing…. because one wrong step and it is goodbye Maya, hello broken arm and face plant into the sharp, burning rocks. Bring it on.

I know you know about my intuition that I have had my entire life, Ro. But here is just another example. As I was driving home from The Inferno today, I started thinking about the neighbors that we brought flowers to, on your Random Day of Kindness. I was getting close to their house and I was beating myself up, because when we met them, they told us about their baby girl that they had lost. Their sweet baby girl, whom never even made it out of the hospital. I knew that she passed away sometime in August and I started getting really mad at myself because I could not remember the date, and I had really wanted to put a card in their mailbox, just to let them know I was thinking about them. It’s September now, so I knew that the time had passed and I was so disappointed at myself for forgetting. As soon as I got home, I parked the car and went to get the mail. I pulled it out, I saw a letter addressed to me, from our neighbors. That is weird, I thought to myself, as I had just spent the past 4 minutes, thinking obsessively about them and their baby girl. I ripped open the letter and it was from the wife. She had taken the time to write me a beautiful letter, more about who they are, who their kids are, and how the daughter that they lost, would have been 22 this year. I started to sob. It was such an honest, beautiful, and kind letter. She wrote to me about how she had read my blog before meeting me, and that I had seemed so strong from my words. But then when she saw me, face to face, that I seemed so fragile. She gets it. She knows why I look that way. It’s because she is a mother, who has lost her little girl. It’s almost like a secret handshake that we have. She can easily see the pain in my eyes, when others cannot. Getting that letter today, reminded me that for as fragile as I am…. I still cannot give up on this life. That I cannot give up on myself. I am on to something with the way I have some of these things in life figured out. I need to listen to my instincts a little more and trust in myself that the path that I am on, is going to lead me to where I was meant to go. As much as I want to fight this stupid life now… I have too much to go on for. You are still my number one reason for living. You are keeping me alive, Ronan. You will take me when you are ready and I just need to trust and believe in that. It is the only thing I trust and believe in anymore.

I’m going to go baby. This has turned into a novel. I hope it even makes sense. I love you so much. To the moon and back, forever and ever. Sweet dreams little one. I hope you are safe.

xoxo

This made me laugh. I will take a laugh wherever I can get it:)

 

The Lack of Warning Signs

A few of you have asked what the warning signs of Ronan’s cancer were. I’m thinking there are some newer readers out there, who have started reading this blog, without going to the beginning of Ro’s story. Or maybe I never explained it well. I never re read what I write and I can only imagine the jumbled mess of words that I probably display. When I write, I don’t think. I just feel and my fingers just kind of take off, without thought, letting my feelings do all the work. Thanks for sticking with me, throughout this journey of love and pain. I don’t know if I tell you all often enough, but the love that you have for my baby, for my family, for me, for my crazy writing; means the world to me. So thank you.

I am going to recap for those of you who are wondering what the signs were. For those of you who will now fear everyday that your child could be next…. because sadly I’ve learned this can happen to anyone. I will forever be pissed at the lack of knowledge I had for Childhood Cancer before all of this. Every parent should be informed and aware once they have children. If I had been aware, would we have caught this sooner? I’ll never know, because unfortunately, nobody can give me a straight answer. They don’t even know what is the cause of this awful disease. And there are too many people in the world who don’t care enough to fight and find out, because it is so rare. Or because it is too painful. Bullshit. Even if only 50 kids a year were diagnosed; which is not the case….. that is way too many to still be dealing with the nobody knows in 2011. Around 800 kids are diagnosed a year. 800 kids who survive by chance, not because there is a cure. It’s pure luck. My Ronan deserved to be lucky and I’ll never understand why he wasn’t. I would give anything to have him be the poster child for this disease, because he survived it. Not because he is dead and now I have to take his name and my pain and turn it into something positive. I have to take the death of my child, my baby, my soul mate and give everything I have to this so maybe, someday, people will start paying attention to kids who have cancer. Just maybe, I can help be a voice to save another Ronan out there; so another mom won’t have to find out what it’s like to sit in her dead child’s bedroom and sob while holding a bag full of his ashes. That is the only physical form I have left of Ronan now. His body, his eyes, his fingernails, his sweet little lips, the nape of his neck where I used to get my “sugar,” from. They are in a bag that looks like sand. All because of Childhood Cancer. All because Doctors, Science, Medicine, and Awareness has failed in 2011. Nobody wants to pay attention to Childhood Cancer. I guess it feels better for people to focus on things like Education because seeing a child with cancer, is too hard to handle. Ignorance is bliss. Best saying ever.

So, my friends. The signs. The Warning Signs. There really wasn’t any. Fun huh. I had taken the 3 boys to my parent’s in Washington State, just as I had every summer since the twins were born. We spent almost all of July there and returned to Phoenix at the beginning of August. We had the BEST time. We spent most of our time, doing simple things, like playing outside, fishing, enjoying time with my beautiful 70-year-old, youngest ever, stepfather; who is a big kid himself. He ADORES my boys and the time they have with him every summer, has always been one of my favorite things to watch in life. Ronan was eating normally, sleeping normally, running around like his crazy self. It was a few days before we were heading back to Washington when I took the boys and made them put on button up shirts, as I wanted to get a picture of them for our annual Christmas card. I spent an hour or so, snapping pictures of them, which has always been another one of my favorite things to do in life. As I was finishing up, going through the pics, I noticed Ronan’s left eye. It looked a little off in the picture that I had taken. Here it is:::

I assumed it was just some dust, allergies, or a bug bite. We had spent a ton of time outside and any of those things could have easily been the culprit. We returned to Phoenix on a Saturday, a few days after this picture was taken. Ronan’s eye still looked not quite right. Woody noticed right away. We made a doctor’s appointment for Monday morning just to check it out. The thought that it could have been Cancer, never even crossed our minds. Our lovely doctor, thought Ronan just had a cyst on the inside of his eyelid and refered us to a Children’s Opthamologist I took him that next day and ended up walking out in the middle of the appointment with her because of her rudeness and lack of concern/compassion that she had for my child and a mother who was scared shitless. I was panicking while trying to stay calm. I threw Ronan in the car, with his eyes still dilated and found another Child Opthamologist to see Ronan that next day. They had originally told me that they couldn’t see him until September. I told them that was not acceptable, that something was going on, and he needed to be seen that next day. They listened and we saw Dr. Cassidy the next day. He knew that something was wrong right away and sent us to PCH for a CT scan. Even at this point, I didn’t think Ronan had Cancer. I mean, really? That doesn’t happen to kids in this world. Especially not my Ro. I was about to learn in a very hard way; that it in fact does. More often than people realize.

So, that is it peeps. The warning signs, which really were none. But guess what??? Doctors can test for this kind of cancer with a simple urine test. YUP. It’s as easy as that. But once again, the bullshit answer to that is not enough kids are diagnosed. And I’m sure insurance doesn’t cover it. I’ll always wonder if Ronan was born with this. What if we would have caught it earlier… would he still be here? Most kids that are diagnosed with Neuroblastoma, are a Stage IV, because it is a silent killer due to the lack of symptoms. The lovely lack of symptoms, but you test for it by peeing in a cup. I am not an expert on why this isn’t done. I’m sure there are 100 different reasons. I am just a mom. Another mom, who has lost a child to cancer. But I was never given a choice as to whether I wanted my child tested for this or not. I can guarantee you, if I had been educated, and given a choice, all 3 of my kids would have been screened for this disease. Just like when they test for Down’s Syndrome when you are pregnant with a child. I was always given a choice for that and I always chose yes. I would have chosen yes, if Childhood Cancer would have been put on the plate. Would that have changed the outcome of all of this? I don’t know. But I should have been given the choice as a parent, to make that decision myself. The Medical world has a responsibility to make people aware. They are not doing it, so it’s parents like me who have to do it, until things change in a very drastic way. To them, Ronan is a statistic and nothing more. They just killed one of the most beautiful things to have ever touched this planet. And now, I have to figure out what to do with all this because I will never come close to feeling peace again in my life; unless something is done.

G’nite my lovilies. G’nite my Ro. I may be too tired to write to you tonight. I love you to the moon and back and hope you are safe.

P.S. You all know what a pink ribbon means. Did you know a gold ribbon is for Childhood Cancer? I didn’t, before all of this. Did you know that September is Childhood Cancer Awareness Month? I didn’t. I am embarrassed, ashamed, and failed as a parent because of my ignorance is bliss life that I indulged in for so many years.

P.P.S. FUCK YOU, CANCER!!!!!!!!!!!!!!!!!!

xoxo

Beautiful weekend, beautiful friends

What a great, long weekend. We spent it pretty low key. We really just hung out at home, watching movies, playing outside, and getting ready for the upcoming week. On Saturday, Charisma, and her family, who had been in Tucson for Thanksgiving, drove up for the day to see us. We spent the day watching the boys play, Charisma and I went and got pedicures while the Woody held down the fort, and then we went to Chelsea’s Kitchen for dinner with some of the girls. I can’t tell you how nice it was to spend some time with my friend. I miss her so much and will never let so much time pass again before seeing her again. The boys really get along with her son. He is such a sweet soul like his mama. Ronan was very playful with her and had no problem warming up. I was surprised considering the way he usually is around people. I am happy CC got to see how “healthy” he looks. He was running around, happy as a clam the entire day and night. It was a great day and night. I was sad to see her go… wish I could keep her with me here forever;) Ronan’s favorite soon to be doctor, Katie, also came by the house for a visit. At the beginning of all of this, when everyone was poking and prodding at Ronan, because they didn’t know what was wrong yet…. Dr. Katie is the only one Ronan would let come near him. She sat in on the surgery when they removed the tumor out of the left orbit of his eye. She is family to us now and it was so good to see her. Ronan is still talking about it this morning. He keeps telling me he loves Dr. Katie and wants to know why he can’t see her at the hospital. So cute and sweet. Thanks Katie for the visit. It meant so much to us to be able to see you. Your being there for us during the hardest time in our life is something we will always be grateful for. You were the only one who put my mind at ease.

Tomorrow, we go into the clinic and we will have Ronan’s platelets checked. We need them to be above 75,000 in order to start his chemo week. Praying that they are. I’m stressing that this is now going to throw off our whole New York plan. We will know more tomorrow depending on if we get to start this round or not. It’s not good to let more than 6 weeks pass in between chemo treatments. I just cannot imagine that he will not be good to go….. he looks and is acting like he is feeling great. He’s been so loving to me lately. I know a lot of it has to do with being home and with Liam, Quinn, and Woody. Today, I sat on the couch with Quinn and Ronan and watched all of the new version of “Alice in Wonderland.” Quinn and Ronan loved it. I couldn’t believe Ro sat through the entire movie. About every 20 minutes he would wrap his arms around me, smile up at me and give me the biggest kiss. It was so sweet. Liam and Woody spent the day watching football and playing some G.I. Joe PS3 game.

Everyone is tired tonight and we all need a good nights sleep to get ready for the week ahead. Last night, I made the mistake of coming home from my evening out and I didn’t take my medication that helps me sleep. I was trying to prove to myself that I was so tired, that I didn’t need it. Big mistake. It was the worst night of sleep. I tossed and turned all night long and had the most horrific dreams. I won’t be making that mistake again. It’s not worth it at this point in my life.

Good morning! I fell asleep soon after writing that last night. Ronan was way too cuddly for me to stay awake. A good night sleep makes such a difference. Boys are off to school and Ro playing Star Wars in his room. I’m ready to check in to the hospital. Fingers crossed. I’ve had our bags packed and in the car for a week now. I have Ronan all prepped and he knows that we have to go in today. He seems fine with it. I’ve come to learn that if I prepare him for things, he adjusts better to the situation. I hope you all have a beautiful Monday. I will keep you posted on if we are admitted today or not. Love to you all!!

xoxo

Magic Medicine… Day 2, Round 4

That stupid pit is back in my stomach today. It is the worst feeling. Makes me not want to eat, not want to sleep…. it’s like a dull, empty pain that comes and goes. And when it is here, it is a constant reminder of what we are up against. Before all of this, I didn’t even know what an Oncologist was. Yup, I was that naive. I thought the last thing we were going to hear is your child has cancer. I still think this is some kind of a sick joke. But staring at my baby’s bald head, as he peacefully sleeps… I am reminded that it is not. And it is more painful than anything I’ve ever felt in my life. When I was driving back to PCH today, after running home to shower and take a power nap… I thought to myself, how in the world can I ever go back to a normal life? A life before all of this? In a weird and twisted way, I have come to love our new life. It is a new life full of getting Ronan well and keeping him alive. He is still here. He is still alive. He is still mine. I am so thankful for that. I remember at the beginning of all of this, when we were talking to one of the doctors here about treatment options…. he told us that if we wanted to take Ronan home, to let him be at peace and not do any of the treatments, that they wouldn’t fight us about it. His words still haunt me….how in the world could that have even been an option?? To give up on your baby and not do everything in your power to help him fight though this…I can’t even imagine. I am very thankful we caught this when we did. A month or two later… and it could have been too late. We are going to do everything we possibly can to get him well… I have no doubt that what we are doing will work.

Ronan has his chemo running through him for 72 hours straight. It is a little clear bag, full of some orange fluid. He is sleeping now, but seems to be tolerating it pretty well so far. My little fighter. Woody and I met with Dr. Eshun today to go over our plan with him for NYC. We are working getting all of the dates finalized and set. No matter what the case, my stomach always goes into knots when we have to meet with a doctor. Guess it just goes with the territory though and I need to learn to get used to it. This is not going away any time soon.

The little boy who we are sharing the room with is still alone. I hear him talking to his mom on the phone every once in a while. He just called her to ask if she was o.k…. he wants to know what she is watching on T.V. and wants to know if his dad is asleep. He sounds so happy just to even talk to his mom on the phone. I could just eat him up.We’ve been with him since yesterday around 4… and no parents have been here. Not even during the night. I cry for him. He is the sweetest little thing and he doesn’t make a peep. I want to bring him all sorts of toys and things to play with. He never asks for a thing… even after the dozen times that I have asked him if he needs anything. Sweet kid. Shitty situation. Life really is not fair sometimes.

Last night I slept about 3 hours. Better than nothing. I am paying for it tonight though… very tired. No matter how tired I am, I never sleep well here. Too many people coming in and out, too many beeping noises, too cold, etc….. It’s fine though… I could stare at Ronan all night long and never tire of it.

Before I try to get some rest I wanted to say a big thank you to The Academy House in my hometown for putting on a wonderful fundraiser in Ronan’s name. I am floored by all the people who showed up, all of the money raised, and the beautiful spirits of the young kids who worked so very hard to raise awareness for Ro’s cancer. Also, a big hug to Lisa for organizing everything and being the force behind it. The love and support from my hometown has been amazing and I am so thankful and proud to be a Longview/Kelso girl.

Sweet dreams to you all out there. Thank you for loving us, believing in us, and fighting for us. I’ve said it before, but I’ll say it again… I will never forget the love you all have shown us and I will forever be changed because of each and every one of you. G’nite<3<3<3

And P.S. Gay, I love you and your messages. Thank you for checking on me… sorry for not calling you back… will call you tomorrow. And you and your guys’ are NEVER too much for us. That was the best Halloween ever. Thank you for sharing it with us… we adore you all and are so lucky to have you in our lives.