Breaking News! Childhood Cancer is NOT Rainbows and Buckets of Sunshine!


Ronan. Last week, I got really mad. So mad that I was left tossing and turning many nights. My anger comes and goes, but it was due to an email that I got that caused my anger to boil over in a way that has not happened in a while. I will share this email in a bit, and yes I did get the permission to do so by the person who wrote it to me. Why do people in this world choose to cover up the real truth behind childhood cancer? Is it because they are too scared to tell the truth? Is it because they are in such denial? Is it because it is easier to be vocal about this if you are sweet and everything is pretty little rainbows and puppy dogs? Is it because they don’t have the strength to tell the truth? That is so unfair. This is only hurting the world of childhood cancer. Childhood cancer is NOT happy kids with sweet shiny bald heads and brave smiles. Childhood cancer is NOT something that is given to kids because they are strong enough to handle it. Childhood cancer is NOT sunshine and love. Childhood cancer is scary. Childhood cancer is dark. Childhood cancers ruins families and lives. It is probably one of the most stressful, heart wrenching things in the world. The way childhood cancer is portrayed, is not accurate. I know what childhood cancer is. I think I’ve been very vocal about it. I don’t think I’ve sugar-coated much and I never will. People need to know the truth about what this disease does, so maybe it will open everyone’s eyes about how these kids are being beaten, battered, bruised, and murdered over and over again. It’s like child abuse, only everyone is fucking o.k. with it. Why is that? Because the reality of what is really going on, is too much to look at? That is such bullshit. If more people were upset about this, being vocal about this, and would stop looking the other way, maybe things would change. The treatments for childhood cancer are barbaric. The treatments for childhood cancer, if one does survive, do so much damage to the child, that life is difficult and hard. And this is acceptable, why? I will NEVER understand why these kids are not the one’s who are getting the most funding/research/attention. If I had the choice to save myself from some awful cancer at 50 years old, or the life of a child, I would choose the child, hands fucking down. And great that the White House is fucking pink for Breast Cancer Awareness this month. Where the fuck is the Gold for last month? I’m sorry, but the color pink makes me want to throw up. Give these little girls a fucking chance to grow up and get breast cancer. Everything is backwards and I don’t understand why. I watched as cancer took my most beautiful boy, and ate him alive. It is doing this to kids every single day and nobody seems to care.

Back to the email that I got. I read it. I was in bed. It was kind of late at night. I read it twice and started sobbing. I know everything you went through, Ronan. I know everything you went through and it wasn’t half as much as these other kids. Do you remember Ty? I’ll never forget him. He was so sick. We bought him a superhero cape. He gave you a gun. He’s not doing so well, Ro. This is eating me alive. I think I know what is coming next and there is nothing I can do. I can’t do the one and only thing, I know his mama wants. Tomorrow is her birthday. Her wish is for everyone to know about Ty. I think I can help with that. It’s the least I can do. This is from Super Ty’s mama.

Maya.  Why didn’t we talk when our boys roomed together at Memorial Sloan Kettering?  I regret that, because we should have connected.  I am not very outgoing, but we would have been fast friends nonetheless.  I spent an entire day getting to know your mom, but I can’t imagine why you and I never shared more than polite exchanges.  Oh yeah, now I know, because we were living in pure misery and probably too distracted by Ronan’s “asspole” to concentrate 🙂
We shared a room in April of 2011.  Your mom told me how you have a blog about Ronan.  At night, I remember we both typed under dim lights into the late hours, updating everyone on how our little boys were doing.  Ronan was diagnosed the same exact time as my son, Ty Louis Campbell.  He’s only five months older than Ty.  We gave him a gun, you gave us a superhero cape for Ty.  My husband and I talked about Ronan and his incredibly fun spirit so often (we still talk about him all the time).  That little boy laughed while bathing with his star wars and he had the most adorable laugh.  Ty was so, so sick… we were envious of you.  We couldn’t wait until Ty was a funloving baldie like Ronan, walking the halls and shooting at nurses.  We got a kick out of that, and we know Ty would have too if he was feeling better.
I remember Ronan looking into my eyes and feeling like he knew something we don’t.  Now I know why.  Look at all of the amazing things he has done!
It was several weeks later that I randomly thought to check on you out of nowhere.  I googled your website and was completely floored when I read the title of your post “Where’s Ronan?”  My heart was crushed, my soul deflated and my mind throbbed in pain over the tragic loss of your beautiful boy, and the immense fear for my own child fighting the same disgusting beast.  I check in on your family sometimes and I always find your words to coincide with everything I am feeling – thank you.  I love you and all you are doing.  It is so f-ing perfect that Taylor Swift found Ronan.  He is MOVING MOUNTAINS.  I am so excited.  I want to tell you that you are amazing, but I know you will just think that it’s not you but Ronan who is doing all this.  Ronan who is amazing (and I would wholeheartedly agree).
Ty was sent home on hospice care a week ago.  I don’t think I will survive, but then I think about you and I know that I will (even though I don’t want to) and it won’t be pretty.  I wrote you once before when my husband ran the NYC marathon for Fred’s Team.  He wore Ronan’s name on one arm, and another boy, Tanner, on the other.
I am going on and on, and I don’t mean to.  I am trying to contact you again for two reasons and I can only imagine how bombarded you must be so I wanted to give you enough background.  First, I just want to tell you how much your writing helps all of us who are going through this painful, tragic life of a cancer mom.  To tell you how much I love what you’ve done for Ronan.  And, to tell you how much I love Ronan.
The other reason is about the media, and I hope it makes sense through my rambling…
I can’t stop thinking about how you are really doing it… how you are really making a difference.  I am excited!  I am a huge believer in all things rockstar ronan!  I believe that YOU have brought this fight to a turning point, and that childhood cancer awareness is going to blow up thanks to you and your beautiful boy.  I can’t wait to see what’s next!  On that note, I have a request that revolves around your mission to share the horrors of childhood cancer.  Ty’s fight against cancer was/is reallybad.  I know every kid’s fight is really bad, but Ty had 27 surgeries in 2 years.  He had meningitis three times because of chemo.  He hasn’t been able to walk for two years.  He was on high dose steroids that destroyed him.  He had 45 rounds of radiation treatments to the brain where his head was bolted down to a table every day.  He had only four fairly healthy months in over two years of treatment (August – December 2011) when he almost walked again, but then he suffered a post-radiation brain bleed that paralyzed the left side of his body.  That terrible blow was followed by necrosis to the brainstem a couple months later that made his entire body paralyzed from the neck down so he can’t sit up or move his arms or feed himself anymore.  We went to a hyperbaric oxygen chamber every day for 2 hours a day all summer.  He endured 60 of those treatments.  Now we’re told that his cancer returned and he is going to die soon.  I always believed that he was suffering so much because we will all get the greatest reward.  That he would get better.  That our love and determination would prevent the other shoe from dropping.  We suspended that bitch in mid-air for a long time… but she eventually hit the ground, hard.
I’m telling you this because I hope that you can build the horrors of what kids go through into your messages about childhood cancer.  You are our voice, our amazing vehicle to spread the word and I am so proud of you.  Awareness should focus on how many children are diagnosed, how many die so unfairly, but also how incredibly f-ed up the treatment options are for children.  They physically destroyed my perfect baby with the golden curls.  The medicine DESTROYED HIM just as much as the cancer did.  He has been robbed of his quality of life for so long.  How is it possible that there has been only ONE NEW DRUG approved for children?  I know you know all of this.  I just want to share Ty’s suffering so you can talk about the level of sheer hell these kids can go through at such a young, innocent age.
Forgive me for bombarding you like this.  I am a PR and marketing professional (I was) so I guess it is my nature to do this.  I just know you are going to do amazing things, and I see kinder, gentler treatment options THAT FUCKING WORK for our children in the future.  Thank you so much for taking the time to read this.  I hope to hear from you some day.
Love,
Cindy Campbell
Do you want to know what my response was? It was this. My words were nothing of comfort. Words of comfort do not exist in a situation like this.
Cindy,
I’ve been checking in on you guys. I wasn’t sure how to get your email address to write. I cannot even form words to write now as I am sobbing. I don’t have any words of comfort. If I did, they would be lies. The cold feet. I’ll never forget the cold feet. I’m so sorry. I wish I had something more to say. If I had Ronan here again one last time, I would have held him more after he passed away. I didn’t hold him after he left. I kissed him. I bathed him. I dressed him. But I didn’t hold him. I didn’t know I could. Please hold Ty.
Do you see why I am so angry at the world of cute little happy bald kids? Because it is a lie and the treatments for these kids, are a JOKE. It’s like saying, let’s lock your kid up in a torture chamber and hope for the best. UNFUCKINGACCEPTABLE. I am on a rant tonight and it is well deserved. Next year, that White House better be lit up GOLD for the month of September. Add it to my list of things to do.
Today, was just an o.k. day, Ro. I might be lying. Today, was not a good day. I’m still so sick so I am dealing with that. I also feel like I have the weight of the world, on my shoulders. I am doing a lot. Trying my best to navigate everything that is coming my way. Who’s intentions are true and who’s are not? I feel like I am being pushed and pulled in a thousand different directions. Your daddy came home to me in bed, with the covers pulled up over my head. I was so wiped out from the day and so tired. I may have said some things like, “I don’t want this baby. I just want Ro.” Things that I know I don’t mean, but all I could do was lay in bed and cry and stare at your pictures on my iPhone. Please come back, Ronan. Please, why did you have to leave me?  It’s not fair. It’s not right. I wish people would stop telling me things like “God only takes the best.” That is not true. It might be the stupidest thing I have ever heard. I am surround by the BEST people on the planet, so why aren’t they all dying, left and right? Somebody explain that one to me. I never wanted this job, Ronan. But I am left on this earth with so much anger/fire/passion/love for you, that I WILL change all of this. I always think about Liam and Quinn. You can mark my words, when they have kids, and god forbid one of them gets cancer… things will be better. The survival rates, treatments, and outcomes. Our future, deserves better. I couldn’t save you, but you can be damn fucking sure I am going to save the others that will go through this. How as a mother, could I even look myself in the mirror if I did not do something? That would be such a slap in the face, to you and our family.
I am going to end this tonight. Please, everyone help me make Ty’s mom’s wish come true. Please go and check out his story. He has been though so much. He is such a fighter. I only wish it was in the way where he was a healthy boy, fighting off monsters, dragons and bad guys. Not cancer.
Oh, and hey cancer. Fuck you.
Goodnight, Ronan. Sweet dreams. I miss you. I love you. I hope you are safe.
xoxo
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79 thoughts on “Breaking News! Childhood Cancer is NOT Rainbows and Buckets of Sunshine!

  1. Glenda

    RoMama
    I hate that you’re not feeling well. Lil Miss Poppy 😉 hopefully soon you will stop your puking party.
    My heart aches for Ty!
    You are moving big mountains!!! Rockstar Ro is doing big things!!!
    Always rolove
    XO

  2. Laura

    So proud of you and all you are doing to make a difference in the fight against childhood cancer. I hope you things can change in the care, cures land awareness of childhood cancer in the world. Thanks for tell her the truth and giving her the advice to hold on and hug her Ty.

  3. Amber Peterson

    My son Died of Brain cancer in April. Every time I go to the store and see pink ribbons on everything, I get angry. Sunday football, everyone is wearing pink shoes and gloves. How much did that cost? Why doesn’t anyone care about these kids, why is everyone so focused on the adults? I know breast cancer awareness is important but far more women die of heart disease than breast cancer. Cancer is the #1 Killer of children by disease! Why doesn’t anyone know this? It is infuriating. What can someone like me who agrees with you but feels helpless do to help?

    1. dtine33

      Amber I am so sorry for your loss. You can’t give up – draft a letter asking whomever it is to support Going Gold in September – to donate proceeds to childhood cancer research. Share the letter with family and friends and ask them to send it around too. If more people start shouting about this from the rooftops – they’re going to start listening, they have too!!! Harness the power of social media. If it seems to overwhelming to go at it national, start locally. I’m going to be writing my College Alma Mater and asking them to Go Gold with the sports teams in September in honor of Ty – turns out me and his ma went to the same school. I’ll be writing a letter and sending it and sharing it with all my college friends and asking them to join in and send it too. If we start now, maybe by next September we’ll see the amount of Gold out there increasing. The pink ribbon campaign took years to get to where it is now – we can’t give up on making Gold just as popular in Sept.

  4. xxx

    Oh Maya, im sitting here bawling my eyes out for Ty, Ronan & of course my son who has gone through this, becuse of the horrible beast. Im so sorry Cindy, your Ty is beautiful, i dont have any words of comfort but hold your baby tight, kiss and hug him xoxoxo. All he needs is your love to surrond him (and a fucken cure, – sorry!) I’m sure he feels so loved by you. Sending you all strength, love & hugs. xx

  5. firefly728

    Maya, you don’t EVER stop speaking the truth. It is Hell… pure HELL, don’t let anyone think Childhood Cancer is anything less. I love you for how amazing you are. I love Ronan. FUCK YOU, CANCER. FUCK YOU.

  6. Melissa V

    This reminds me of a commercial I saw recruiting nurses when I was at the gym a few weeks ago….I was seriously enraged as they used these smiling bald kids with cancer to show how great nursing is. Fucked up. I seriously could have vomited all over that stupid elliptical machine. They certainly didn’t put anything in there about how cruel and evil cancer is and how many of these beautiful babies they would get to watch suffer and DIE.

    I am sorry for Ty and his Momma…I haven’t read his entire story, but I have read the past few months. Unfucking fair. I hate that there are so many stories out there. So many that it turns my stomach and brings me to tears. Thank you for ALL you are doing Maya….I know it is your love story continuing on…but it is still beyond amazing that you can even breathe let alone change the world. Love to you and especially to Ty and Cindy.

  7. amourningmom

    You and Ronan are changing childhood cancer. Thank you for always telling the truth.

    My heart breaks for Ty and his family. I am sending hugs and hope to you all.

    I have buried 2 of my sons (neither died of cancer). I do not know if either of them suffered before they died but it is my worst fear that they did. I don’t think I will ever forgive myself for not being able to save them.

    i cannot understand why children with cancer are not getting more attention/funding/research. FUCK YOU CANCER!!

  8. Amanda

    My daughter who is 3 had a hernia repair surgery today. Since I have been following Ronan’s story, I wasn’t at all alarmed or scared when we got the diagnosis. All I thought was thank God it wasn’t something worse. My heart bleeds for the parents AND families that deal with the horrors on cancer. Keep on spreading the word Maya!

  9. Judy lennon

    Maya- I believe that every soul chooses the life they will live and the parents they will be born into. They choose to fulfill certain life lessons and accomplishments of that life. Ronan chose you to be his momma. He is to childhood cancer what Susan G Komin is to Breast cancer or will be shortly. You are doing this Maya! You and Ro are changing the world of Childhood cancer! There is so much more that is going to come of this and Ro knew you would carry it through!! There will be books and movies and interviews and Big music benefits! But you know what?? There are going to be treatments and research and cures because of the interviews and books and movies. Ronan no doubt is your soulmate, your kindred spirit and has been with you through many lives!! Maya, he will be there through many more. Trust that! He choose you to help him help all the other children! You are doing that!!! I won’t pretend to imagine the heartache and the pain of watching my child suffer the way you did and the way other mothers are. What I will tell you is that I believe with all that I am that Ronan’s life and Ronan’s death had a specific purpose, I believe that! His perfect face and eyes have now put a kids face on this phucker called cancer! Why Ronan’s face? Why Ronan? Because the kid was phucking perfect! Other than the cancer he was perfect! Perfect hair, perfect eyes, perfect skin tone, perfect smile, perfect squeaky unique little voice. His external beauty captured a nation, hell, captured the world Maya!! And Why you as his mother??? Well, Hells Bells!!! (As us southerners say) it does not take a rocket scientist to figure out that YOU were and are 1) Ronan’s kindred spirit and soulmate the one he trusted and depended on most. 2) Your deep undying love for him and the fact that you, just like him are a fighter that will fight for all of these other kids and you will carry the message through! You will without a doubt complete the task, get the job done, achieve the purpose for your life and for his! I also believe when Ro told you he wanted a baby and he wanted a girl baby. That was a message way back then to you for now… I know you don’t read what you write and I don’t blame you, it would be too painful right now but Ronan said things to you at certain times that all fit into your life now. My point??? Ro choose his life, he choose you as his mom. There was a very specific purpose for his short little life and his death. You Maya know all this. Down deep I know you do. You wanna know why? You are still breathing. Not only are you still breathing but you are fighting the fight, fulfilling the purpose, “gettin shit done” just as planned!! Big Hugs from a Gamecock momma in South Carolina!!! PS If you need any Pitsburgh Steelers stuff for auctions let me know! My son plays for them and We will help any way we can! I saw that you got a helmet for the party let me know if you need more! Hang in there and know that with you fighting for these kids there is no doubt that you are gonna Phuck it up!!!

  10. Jessica

    I wish people would stop telling you ridiculous phrases like that too. That really makes me angry. “God is not slow respecting his promise, as some people consider slowness, but he is patient with you because HE DOES NOT DESIRE ANY TO BE DESTROYED but desires all to attain to repentance.” (2 Peter 3:9)

    RoLove and also love for Ty.

  11. Jen B.

    Maya,

    I came across your blog a few weeks ago as a result of the Taylor Swift thing going viral. The first night I found it I stayed up until 1am reading your blogs and crying my eyes out.

    Nobody can even come close to knowing what it feels like to lose a child to cancer…and seeing the events unfold through your posts is a testament to that. But each time I read your words I know deep in my heart a true, unshakable fact. Ronan’s not the only SPICY one in your family! If not for your passionate and profound love for Ronan and your self-professed soul connection, you would not be the dynamite who is changing the face of childhood cancer! It just would never have happened. You are a pioneer, really.

    The way that Ronan has spurred you to act with such passion and vigor is inspiring. Through all your pain and grief, your anger at the unfairness of losing Ronan has lit a fire in you that will never be extinguished. The world is going to know about how horrifying it is to watch a child suffer at the hands of cancer. And you’re making it happen. Because of (and with the help of) Ronan.

    I imagine Ronan is smiling upon you and cheering you on. He’s always by your side. He watches your victories. You are doing so much in his name. He is soooo proud. He is so like, “Check my mama out.” Not every parent out there is doing (or could even fathom doing) something to increase awareness or raise money for new treatments. Because of your suffering and Ronan’s, the world is going to change. That is the only silver lining. You already know that, though.

    I, like so many of your followers, take so much less for granted now. I bite my tongue and think about how grateful I should be. I hug and kiss my kids extra lovingly. I thank you for that. I am so sorry you have had to lose Ronan. But God really picked a good fighter for this job. You go girl.

    Sincerely,
    Jen B.

  12. Aimee

    I agree with you 100% about Breast Cancer and all of the money they raise for awareness. They have pink fucking trash cans on my sons’ soccer fields and it pisses me off!!! My money goes to childhood cancer. I understand that breast cancer sucks, and many women die. Most of them have lived into middle age. I’m not saying they don’t suffer through treatments, but I would much rather suffer than watch one my children (or any child for that matter) go through the things that I just read about above. This time of year just makes me so so angry. I want to wear a t-shirt everywhere that reads “Yes, I have breasts, but kids get cancer everywhere”.Well,probably something more witty than that, but I am so angry I can’t think straight right now!! Sorry if this post is a jumbled bunch of thoughts…my biggest fear is not having to have my breasts removed…it’s losing a child to cancer….and watching them suffer through the process of trying to save their lives. I’m so sorry for your loss, and also that you are struggling with sickness right now. I hope this battle to spread the word eventually gives you strength to get through your tragic loss. I know the pain is still to raw right now. Please know that you have made thousands of people aware already. Thank you!!!

  13. Ali Barnes

    There is a current affairs show that I watch most nights…NOTHING was said throughout September about childhood cancer awareness. Around comes October 1st and BAM! story about breast cancer awareness month. I had to switch it off. Not because I don’t care about women with breast cancer…but because we all KNOW about breast cancer. It gets so much funding and attention. These kids don’t and it breaks my heart.

    1. krispearson88

      I agree! September 30 (not even October yet) and our newspaper had a big insert with stories about breast cancer, business advertising with pukey pink ribbons on everything. i was PISSED. Next year, there IS GOING TO BE AN INSERT ABOUT CHILDHOOD CANCER!!

  14. Bikbulatova Galina (@FreeHearted27)

    I just wanted to say that I love Ronan so much. I can`t even express the way it is to weep over the boy who you never knew. i can`t stop thinking “Oh, God let him be safe forever” looking at each boy out in the street. You said there are no comfort words for anyone and that`s true so i just wanted to tell you from the bottom of my heart that you are an incredible mamma, Maya. Ronan loves you forever. He and you are both perfect. I love you both.
    And I know his name. His name is Ronan. And my friend know his name too now. So you can be sure that now a bunch of people in Russia know his name.
    Just wanted to say that those things and…oh man.. I know that our tweens and little Poppy and your husband are those who are loved by million hearts and a little one which is still beating somewhere behind the rain. And htis heart is loved too.
    Thank you for being such an incredible mom.

  15. alyselancaster

    I could write a whole bunch of stuff in reply to what you wrote, because trust me, Maya, your anger transfers to me with every. single. word. you write. But instead of letting all that out here, I will instead do exactly what you asked. I will spread Ty’s story. And I will keep writing and talking about childhood cancer no matter how many people tell me that it’s enough and that I should knock it off already. Fuck that and fuck them if they think it’s okay to close their eyes and pretend childhood cancer doesn’t exist. That want to deny that it’s lethal, heartless, child-abusing killer. Those of us for whom Ronan’s beautiful face is seared in our hearts will do our parts to make sure that next September, the White House is fucking gold. There are a lot of pissed off people–myself included–who want to make absolutely fucking sure that happens. You’re not alone in your fight, your army extends much, much further than you think. I don’t know you personally, but you’re a part of me now. I take you and Ro with me everywhere I go, in the form of a purple Rockstar Ronan bracelet that boldly tells cancer to go fuck itself. In the form of a gold ribbon I wear every day (not just in September!). In the form of words that I use to spread the “breaking news” that childhood cancer is a vicious fucking beast that must be stopped.

    And in my heart.

    So rock on, Maya. You’re slowly but surely changing things…and we’re all behind you making a lot of noise.

    Alyse in Miami, FL
    http://endchildhoodcancer.wordpress.com/2012/09/

    1. wordsforbuppy

      Hey Alyse,

      Yeah, I’m already getting sick of people with the weird looks when I bring up childhood cancer. It’s like “OH SORRY I RUINED YOUR DAY”. Give me a break. Rock on every person CRAZY enough to spread the breaking news!

      Love,

      Marcia

      1. alyselancaster

        Hi Marcia…Yup, if I had a $1,000 for every person who has indicated, either directly or indirectly, that they’re sick of my Facebook posts, blog posts, twitter posts, etc. about childhood cancer, I think I could help fund a cure. I actually had someone ask me today why the lapel ribbon on my shirt was gold and not pink. I just about slapped her. But instead, I told her it was for childhood cancer, told her to google “rockstar ronan” or “super ty”, read the blog posts and get back to me after that. Do I think she will? I don’t know, maybe. Probably not. But if she does, then mission accomplished. Only about a million more of those missions to go. But you’ve gotta start somewhere, right?

    2. Marcia

      I hear ya, starting “somewhere” is definitely the key. My four year old was rockin’ one of Ronan’s bracelets today when a (well-meaning) stranger commented on it. The guy then proceeded to tell his lady friend that the bracelet was for breast cancer awareness. I couldn’t help it, I jumped in and explained to them that it’s actually about an amazing little boy who died from cancer. I told them how it’s ironic that everyone is so familiar with breast cancer awareness (which, HELLO Ronan’s bracelets are PURPLE!) but people aren’t really informed about childhood cancer. I had a brief talk with them about the realities of cancer. They nodded in unison at what I was saying. I hope at least parts of what I said really sank in! As soon as I mentioned Taylor Swift they seemed more interested. It’s sad, but in a way Taylor gave us all a starting point to bring this up to people.

  16. Hazel O Callaghan

    This post made me bawl today. The thought of poor Ty and his family and all they’ve gone through, and it seems like for nothing. It is excruciatingly UNFAIR.
    Thinking of them and hoping for change x

  17. deanlv

    Maya,

    Thank you for sharing Ty and Cindy’s story. Losing your child after watching them repeatedly subjected to painful treatments is the worst thing that any parent could ever experience. You are right, treatments are like torturing the children in the hope that they will be cured with the rationale that the pain they go through will be rewarded because they will get better. Before what you are writing, I have never seen anyone focus on the problems and pain that children are subjected to and persist throughout the lives of those that are fortunate enough to make it through their treatments.

    But I am encouraged because you and Ro carry a torch for those that need someone to rally around. Childhood cancer needs to be hunted, trapped and killed like the animal it is. All aspects; early diagnosis to improve survival rates, new treatments and protocols that are less invasive and with less long-term impacts, and research into finding vaccines so that cancer can be erradicated like other childhood killers before it before it even gets the chance to attack our children, need to be pursued.

  18. paula

    I’m so sorry. Fucking terrible. Disgusting. Thank you Maya for being the voice. You are already opening the eyes of millions. So Sorry to all the little Ronans and Tys out there and the Mayas and Cindys. Noone deserves this pain!

  19. Asha

    Maya!
    I just thought of something! How about we make stickers (purple ones) with Ronan’s website and Ty’s website addresses ( and a clever saying like : forget boobies, save kids! or: kids suffer from cancer too) that we could stick to grocery store price labels that have the pink ribbon on them. The stickers should be big enough so they are not overlooked. After hearing Taylor’s song, I thought everybody was as touched as me and everybody knew, but not yet. It boggles me. How can they not know about Ronan?
    If you could make these stickers available on your website, we could order them and spread them in grocery stores, play areas, malls where ever moms go!
    I thought it when I was grocery shopping and the overload of pink was hurting me because there was no purple- there should be at least SOME, right?

  20. Donna M

    Driving to work today I heard this song and thought of you and Ronan:
    Never Surrender- Corey Hart

    Just a little more time is all we’re askin for
    “cause just a little more time could open closin’ doors
    Just a little uncertainty can bring you down
    And nobody wants to know you now
    And nobody wants to show you how

    So if you’re lost and on your own
    You can never surrender
    And if your path won’t lead you home
    You can never surrender

    And when the night is cold and dark
    You can see,you can see light
    “cause no one can take away your right
    To fight and to never surrender

    With a little perserverance you can get things done
    Without the blind adherence that has conquered some
    And nobody wants to know you now
    And nobody wants to show you how

    So if your lost and on your own
    You can never surrender
    And if the path won’t lead you home
    You can never surrender

    Oh, time is all we’re asking for to never surrender
    Oh, you can never surrender
    And time is all we’re askin for
    Stand your ground, never surrender
    Oh, I said, “You never surrender”

    We hear you Maya, Keep fighting!!! We are all behind you! We will never let Ronan and all the other kids killed by this horrible disease be forgotten.
    We will do whatever it takes to help you bring awareness to the lack of funding and research and make a change now!!
    You are so inspiring, you AND Ronan.

  21. Billie Lewis

    Dear Maya,oh how I love u and Ronan!!!!!!!! If I hear my neighbor say one more time that death is ok,and that it was time for my daddy to die,I am just going to go off on him,and say everything that I have read in ur blog,that no he didn’t want to die and leave his children,and no it is not a good thing that god has called him. Just one more time,and I promise,I am going to go off on him.Maybe he wants to die,but I don’t,and I know nobody want’s their child to die.My father was diagnosed with cancer over a yr. ago, and he did not want to have the surgery to find out where it was,so they could start treatment (chemo), I wantd to scream out,go do the surgery,so that u may have a chance to b here with us , it may have been for just a little while longer,but hey ,EVERY MIN> HOUR<COUNTS!!!!! We have had so much cancer n our family,aunts dieing left and right,I guess he had seen that once u have surgery,that FUCKING CANCER just seems to spread faster,and he was 76,and he just said he was just going to sit there,and do nothing.U don't know how bad I was screaming in my head,NO DADDY,go get the treatments. But I had to keep my mouth shut,bcause of my evil mother,yep hate to say ,my evil mother,but thats the truth!!!She should have said ,now look ,u go and do as the Dr. wants u to do. But no she didn't!!! I just wanna say ,they did not have a love story,like u and ur husband has..So therefore,they had givn my father a yr. to live, but he faded away right n front of our eyes n about 2 mo. My dear sweet father passed away on April 4th ,2011. He was up and normal,ate a full meal,my brother had taken him,the night b4.Then the next morning, they said call all the family members,he does not have much time left!!!! What u got to b fuckn kidding me!!!!!! He was up last night talking and laughing with us,and ur now telling us to come say our goodbyes!!!!!! Oh what a terrible thing,I was with him to the very end,cause my sis and brother could not stand to c him, not being able to breathe,and my FUCKING mother was out prob. buying lottery tickets!!!!!!!! So I was not going to let him die,all alone, And u can damn well bet I was there when he took his last breathe. I love reading ur blog Maya,and I know I will still b reading ur blog,about the most wonderful child to ever live when I am 80,bcause I know u will b forever,telling evryone about Rockstar Ronan,till u take ur last breath. I SOOOO love u and ur whole family Maya,I tell everybody about Ronan,and his wonderful mother,every chance I get. OH and I want a bracelet,I am a poor single mother of a 9 yr. old wonderful little boy,but I will go broke just to get one!!!!!! LOVE YOU RONAN AND MAYA AND UR WHOLE FAMILY TO THE MOON AND BACK 😉 🙂 🙂 🙂

  22. Claudia

    My heart brakes for Ty and his loving parents. No child should endure and go through so much pain. Fuck you cancer, I hate you. I hate you for killing children; it’s not fair. I hate Pharma companies because they can’t come up with better medication for Pediatric Cancer or I should say they don’t want. Yeah, they don’t want to cure cancer, why would they? Cancer makes them super rich… disgusting. Maya, keep fighting!

  23. Kb

    Thank you so much for sharing Ty’s story. One of his friends from the 9th floor is a good friend of mine. You are right about everything turning pink, when there is nothing out there turning gold in September. It’s not that I don’t think breast cancer research is also important – it is, my Nana was a breast cancer survivor. I do think that we can use the success of Susan G. Komen and the Lauder family as a learning tool. Yesterday I saw Elizabeth Hurley being interviewed, and she said in 1992 when Evelyn Lauder designed the pink ribbon, she told her “People whisper about breast cancer. We are going to have them shouting about it.” That was true, people did whisper about it – the way they do now about kids with cancer. They accomplished that goal. So why not learn from what they did? People cite the bottom line as why pharmaceutical companies don’t invest in pediatric cancer research – but if enough people are shouting about it, the PR alone from a company developing a great drug to fight NB or AT/RT would be worth it to them. Showing people Ty’s story – he was considered NED for a long time until his last scans – will help with that. This is what these treatments do to these kids. Just like “Donna’s Cancer Story.” Donna was sterile before she turned 4. Her mom says that is how they parent Donna now, by telling her story. Keep telling the story, Maya, it will change the world.

  24. Donna

    The more I follow your posts, the more things I read about [like Ty’s story] that are even more truly horrible to me because it’s happening to him and to that mother right now. And still there isn’t awareness. Like I just read…it’s not mentioned on the current affairs show, there are pink ribbons and “save the ta-ta’s” stickers everywhere because that’s cute I guess, but obviously what happens to the kids isn’t cute so we just won’t focus on that. Funding is shitey, and the “cures” are worse than the disease, what they make these kids go through.

    Thank you for your ending – ‘Oh, and hey cancer. Fuck you.’ Somehow, you always make me laugh even at the end of a completely freaking horrible story like I just read.

  25. Susan

    I wholeheartedly agree. I recently left a comment on St. Baldrick’s FB page that, while I huge supporter of theirs, I am starting to feel that all the feel good pictures of happy bald kids is not sending the right message. People are horrified when I tell them what my son went through. Let a person spend the day hanging out near the 3f8 treatment rooms and hear the screaming and crying of the kids in pain there. Just horrifying – and our kids went through that and worse again, and again, and again. I have talked with may other cancer parents who feel the same way – I think the time is coming for the truth. Thank you in advance for your part in it.

    1. dtine33

      I am so sorry for all that your kids have suffered – I really had no idea how bad it is. Up until recently I was an occasional follower of Ty’s mom’s blog – and I really didn’t get a chance to read every post and I had no idea how much he went through. I am so sorry Susan for what your son went through. I have always appreciated Maya’s blog because she is so real – but I only found it after Ronan had passed. And after going back and reading old posts on Ty’s mom’s blog – I see how real she kept it. It is so important for you ladies to keep shouting the truth – we’re starting to notice, one person at a time. I know it’s not fast enough – I know that it’s taking too damn long for the $$ to come, the research to happen, the treatments to get better – but you can’t give up on us. We’re coming around. Change is going to happen.

  26. Becki

    Ugh. I’m sitting at my desk at work and screaming on the inside. What can I do? What do I do? How can I help? I’ve donated. I tell people about your blog and childhood cancer. I look at my sweet grandbabies and pray for their health. I feel so helpless. What do we do? You have to beg Katie Couric to let you tell the whole story.

  27. Donna Tine

    i was pissed off too when I saw the FB post with the White House lit up pink – i even commented asking if next year they’ll light it up gold!! I had seen a post and shared it that said by White House Proclimation that Sept was Childhood Cancer Awareness month!!! If they did that why wouldn’t they light the damn place up gold too??? Because they only partially got the message.
    Thank you so much for sharing CIndy’s email and Ty’s story. I know of them through friends and am praying hard every day for a miracle for Ty. I got to learn about childhood cancers largely in part to Ty and another friend’s son Liam. By following them I stumbled across Ronan and your blog. Your no holds barred approach to telling it like it is really struck a chord with me. Now between Ronan, Ty and Liam I have committed myself to raising awareness of this beast and spreading the word that more must be done for these kids. I have a three year old son and I cannot fathom a day that Cancer comes in to his life. I pray that never happens. And I live every day trying to be a better mom, more engaged in the moment, because of what your family, the Campbell’s and the Maguires have gone through. As I follow Ty on FB and his blog I see a bunch of new commenters who have come over because of your post – thank you. Especially right now when prayers and good thoughts are needed for him so that he doesn’t suffer. Me and my son proudly wear our Rockstar Ronan bracelets – I promise to never forget beautiful Ronan.

  28. summer

    Maya, it is unimaginable what your family has been through, and what Ty’s family is going through. It is not fair. But you are changing the world!! You are turning your most unthinkable tragedy into something that is going to change this world, and help so many kids and so many families!! Thank you for all that you are doing, even through all of your pain. Thank you Ronan, for guiding your precious mama and watching over her.
    I cannot fathom how some people would comment and say negative things to you, when you are only doing good by your son. You are such a blessing and so strong!! And what an honor that Taylor Swift wrote a song in honor of your beautiful boy Ronan. All I can say is WOW!! Love Summer-Louisiana

  29. Tiffany

    As always you speak incredible truth, Maya. I think that is why your blog is so addicting. You speak truth and your emotion is so raw and transparent. Thank you. I think Taylor was wrong about one thing- the miracle wasn’t just having one moment with Ronan, the miracles are yet to come. The miracles for all the kids that will be saved because of awareness brought to the world by you and Ronan. I live in Gilbert and want to be of any help to the Foundation that I can be. Please contact me if I can somehow lighten the weight on your shoulders.

  30. samanthakh4

    Maya- Your real words and feelings are so inspiring. It is your truth that opens the eyes of so many and helps paint a picture of what is going on with these children. My heart always aches for you and your family to the point that I wish I could bring him back to you. My mother is a breast cancer survivor so of course, I am a supporter of the pink, however, I am now a supporter of childhood cancer. I will use my words through blogging to help children like Ronan and now, Ty. No one deserves to go through cancer and it kills me that these innocent children don’t get a chance to enjoy life. I have no doubt that you will get the white house sparkling in gold next year and when I see it I will just smile and know that it was because of you and little Ronan.

  31. Rhanda Salma

    thank you for sharing Ty’s moms note. I too hope the White House is lit up in GOLD next year. You are doing remarkable work on behalf of children with cancer and I applaud you. Thank you.

  32. Angela

    I apparently am in the minority here… I read your blog religiously and many days leave with an aching heart from the unimaginable pain you have and are going through. However, this morning I was angry! Not angry for your reasons…angry at the outcry against breast cancer awareness and fundraising. I absolutely agree that I would rather suffer the way my mother-in-law, her sister, and numerous friends have than to see my 7 year old daughter suffering. But that is why I am an avid breast cancer awareness and research supporter. My husband’s family carries a gene that means with near certainty that its carriers will develop breast cancer. I don’t yet know if my daughter or 3 nieces are carriers. (We cannot test until she is 18) You can bet your ass that in the meantime I am going to do everything in my power to make sure there are treatments and hopefully a cure in the event they do test positive. I am not on a pink ribbon bandwagon. I am fighting like mad to save my daughter because regardless of her age she will always be my child. Although I pray to God that she never has to suffer, if she were to have to battle this hideous disease at 30 or 50, I will be devastated. So please don’t fault those of us that have taken up a slightly different cause. It isn’t because we don’t care about children. Often it is because we care just as much as you do, but have a different, known form of cancer stalking our children that we need to fight against.

  33. Chris

    Like so many others I want to do something. i NEED to do something. I wrote the President, and all my legislators, as if it would do good. I told them all how pissed I am about the stupid fucking PINK White House. INCREASE FUNDING TO END CHILDHOOD CANCER SO OUR CHILDREN EVEN HAVE A CHANCE TO GROW UP. That’s what I told them. I could care less that the White House is PINK for Breast Cancer Awareness Month. Did anyone even know about Childhood Cancer Awareness Month? I’d cut off both my breasts without pain medication to give a child back their life. Desperate mothers take desperate measures to save their children. I’d do anything to spare that pain in having children stolen from them while so little funding is allocated to help fund treatments. 3%!!!!! Maybe more lawmakers should read blogs like rockstarronan before they start cutting and making decisions.

  34. JessiLee

    Mama Maya, your words to Cindy were perfect (in every f’d up way they could be). You are an inspiration. And you are one hell of a fighter. I think about how tough you are a million times a day.

    Don’t ever give up. You are changing the world. Ronan is changing the world.

    (I too, (Becki from a few comments above) sit here and say what the hell can I do? Tell me what I can do. I want to reach through this screen and beg you for direction and to just have you say GO DO THIS. Until then, I will keep donating, and spreading the word of Ro and childhood cancer.)

  35. Hanne

    Maya, you are such an inspiration to me. I’ve been reading your blog for a while now. I think about you and your wonderful friends and family every day. I live in Norway, and I really would like some Rockstar Ronan bracelets, but I’m not sure how to get them. Thanks!

  36. Rachel

    Maya, you are opening so many peoples eyes to the horror and the tragedy that is childhood cancer. After reading this, I’ve been thinking — I wonder if some sort of ad campaign would help get your point across? To counteract all the ridiculous ‘happy smiling bald children’ — how about pictures showing the true horror, the pictures that parents have of their babies all hooked up to machines and bruised and battered, a list of all the invasive procedures, etc… something to really shock and open peoples eyes up? I’m not sure what the laws are like in the States for that but it might be worth looking into? Sending lots of love and support from across the ocean… xoxo

  37. Sharon Green

    God bless you for all you do. I don’t know the pain of losing a child, but I do understand your anger about not enough research for childhood cancer. I lost my mom Nov. 13, 2007 of lung cancer. During her year long battle I discovered lung cancer is the #1 killer of women, not breast cancer. I began to resent everything pink…….which made me feel terrible about myself. This is taken from ama, Lung cancer will be responsible for 25% of women’s cancer deaths this year, while breast cancer will account for 15%, according to American Cancer Society estimates. Survival rates for breast cancer have also surged far beyond those for lung cancer.
    While five-year survival rates for lung cancer are now 15% — only slightly better than the 12% survival rates of 30 years ago — survival rates for breast cancer have reached 88%
    This is wonderful news for ladies who have suffered the diagnosis of breast cancer. I just want the same opportunities for the children. As you said, “children should be first.”

    It is up to us to raise HELL, and give the world a face for childhood cancer. Until I read your blog I had no idea so little is being done. What a tragedy for these little ones…..
    My mom lived to be 82, what a gift that would have been for Ronan and your family.
    God bless~

  38. Nicole

    You are amazing Maya. Hugs and love to you always! Thank you for sharing Ty’s story. He and his family are in my thoughts and prayers. Hey Cancer, stay away from our babies!!!!! You suck!

  39. Val S

    Dear Maya,
    Keep on keeping on. Ronan and you are force to behold and will force change for all the kids effed by cancer. Prayers for little Ty and his family.

  40. Tara Simko

    I have nothing- no words of comfort, no advice—nothing- because this whole reality is just fucked. I hate that Ronan is gone, I hate that there is a beautiful little guy named Ty who is sick, I hate that there are so many precious babies fighting and so many more who haven’t a clue of what lies ahead. All I can do, is thank you for your continued brutal honesty and tell you to keep going- keep writing your truth. We’re all little drops in a bucket, but if everyone does their part, things will change. And it’s already started. It’s working. xxx

  41. Vanessa Samos

    Maya,
    I find myself feeling the same way you do….i have commented before, my baby Eric Joshua passed away July 12, 2003 of strep b meningitis at 13 days of being born. I was able to hold my love, but God I wish I had held him longer…….my arms continue to ache for him. And I wish I had him back. I mentioned before that he has a little brother now, born almost a year after he was born…..but it doesnt matter. He isnt my little prince…dont get me wrong….i love my Sean Andrew…he is my soul….but I also think like you….to Cindy: Hold Ty…..all u can…no matter what!!!!

    Vanessa

  42. Lorraine Fedosoff

    My 17 year old son died this past March. Acute Lymphoblastic Leukemia, complications arising from his second bone marrow transplant. A fucking nightmare. Five years of fighting. I watched him slowly die as the new cells attacked his already broken body. He was talented. He was an athlete. He was a musician. He was amazing. He was a cancer crusader himself, trying to raise awareness for the others. This fucking torture must stop. Thank you, Maya, for just being honest. I know how hard that is, but it just needs to be said until somebody starts to listen. Thank you for using your voice for all the others. And BTW, fuck you cancer. You fucking suck.

  43. Rachel

    I Love You to the Moon and Back Poem
    missing, empty
    what once was there is now gone
    torn in two
    left, feeling broken and scarred
    the heart you feel inside you
    has been damaged too much
    knowing it will break with one more tragedy
    knowing you have nothing left to give
    knowing that you tried, and yet you did not succeed
    there is no worse pain.
    what is inside your mind hurts you forever,
    while your injuries may heal
    your soul is scarred
    the feeling that you must keep trying,
    keep trying to do your best
    for all the people that need you
    but trying to help yourself most of all
    if you give up
    there is a pit of endless dispair waiting for you below
    if you fall.
    so do not fall
    while you cannot repair your soul,
    you cannot fix that missing piece
    that left you when he died
    and know that while it is not fair
    for your baby boy,
    for ronan,
    for any child,
    to die young
    while it is a tragety
    for all the moms like you
    you can strive to finish what you started
    because your reason to keep trying,
    searching for a cure,
    is that once you find a cure,
    all the other moms
    who’s children might have died
    will live
    and you will have helped save their lives.
    you will have saved their moms
    from bathing their dead children
    and you can rest then,
    and your baby boy can rest then
    in heaven

    your story made me think about how lucky I am, and I wanted to help you. I love poetry and so this is something I wrote to show you what I think. if anything offended anyone, sorry. It is my way of showing that while I dont understand what you are going through, since i never experienced it, I have vast amounts of hope and encouragement for you and what you are doing for the world. thx taylor swift for your song.
    thank you

  44. Michelle.a grieving nana

    I was having a really sad day as it was the sixth month anniversary of my gorgeous grandson Jacob’s death today. It has been emotionally draining to say the least. Then I read your post… My god I could not stop the tears from falling. I still can’t. This is bullshit what is happening to these gorgeous children. Ty is absolutely beautiful and I really hope and pray a miracle shines upon him. Thank you for sharing his story with us. People really need to know the ugly truth about childhood cancer. These kids go through hell and so many people only notice the cute bald heads. What bullshit! They need to dedicate some of their time in the oncology ward. Not with the smiling kids they see on the news receiving Easter eggs or Xmas presents but with the ones too sick to lift their heads and the ones being pumped up with large doses of morphine, more than the biggest adult would have. That’s how much pain some of these these kids are in. They don’t all die peacefully like some people might think. Some can’t get their pain under control and they die a horrible death.
    Jacob was one of those cute little bald head kids. He was so cheeky and could be very bossy at times. He had such a zest for life always exploring everything that many kids would shy away from. Sometimes it was hard to believe he was sick, especially when his hair grew back. His NG tube gave it away however. But he had so many bad times in between the good times and what he went through in the last few weeks I wouldn’t wish on my worst enemy. It was horrible! Those images will haunt me for the rest of my life. Instead of beautiful memories of the cheeky boy we loved so much and still do we have horrible memories of what cancer and all the drugs done to his little four year old body. These kids need so much more than what they are getting. Like you said, they need the chance to grow up and get breast cancer or any other cancer there is out there that adults get. They need the chance to live their life and make their own choices. They need more options…better options…they need the government to wake up and stop wasting money on trivial shit and put it into saving the lives of our children. I can’t understand why they don’t already. Someone once said they don’t because they know the parents will do fundraising to raise money for such things. How weak is that…
    Oh Maya you are doing a fantastic job and to do it while you are going through so much with Poppy, you are amazing. I expect we will be seeing gold ribbons everywhere next year. Always thinking of you all, especially Ronan and his blue eyes and as soon as I see a purple balloon there he is again. Take care.xx

  45. Colleen Rosen

    I’m one of Cindy’s best friends and we friends of SuperTy have read about Ronan on Cindy’s blog (even before the Taylor Swift song – TOO COOL!). Maybe you guys didn’t talk too much in the hospital but she definitely mentioned Ronan a few times back then. Someone in our network posted a news clip with interview about the song and I just wanted to reach out and say that you are REALLY SPECIAL. I loved the news clip and the person you are – just from watching and listening to you. Rockstar Ronan is all around us, as evidence by the soundwaves of Taylor’s song that move through the air and reach us all.

    Colleen

  46. Claudia

    Maya, thanks for sharing Ty’s story. Poor baby. It breaks my heart when I read what he had to go through. It’s so sad that I am in tears as I type this message. I mean, 27 surgeries and 45 rounds of radiation? and unable to walk due to all the poison that he had to receive. I’ve been to Ty’s website and have wished him Happy Birthday, what a fighter he is and an inspiration. Anyway, thanks for sharing! I didn’t know anything about pediatric cancer before I read about Ronan. It’s so fucking sad and unfair. I hope someday we see gold ribbons in September, just as we see pink everywhere this month.

  47. Sheila

    I am the daughter of someone who has **BREAST CANCER** I thought how sucky this is, my mom has this (I still feel that way) I hate the *C* word! I lost my beautiful Aunt 41/2 years ago to Leukemia…not an old Aunt but my moms baby sister who was only a few years older then myself.Even with the sadness for them, I have never felt as SAD and PISSED off as I have upon learning about a child who was sent home on Hospice to basically die! REALLY, that is the best we have to offer this child and family?????? I made a PROMISE that I would help raise AWARENESS and find a way to do my part in helping. I am still not sure how little o’l me can do that,so I VENT every day and night on my FB page. (OH, YA…NOT MANY PEOPLE RESPOND NOW OR CLICK *LIKE* ON MY POSTINGS ANY LONGER) I made a post pointing at my 200+ friends on FB and how funny it was I was NOT getting any responses to my CHILDHOOD CANCER AWARENESS posts. I had the most insane responses that I do not care to even mention. I feel being the daughter of someone who has a rare incurable form of breast cancer,that I if anyone has the right to say, I love my Mother with all of my heart and of course do not want to lose her, but if it were a choice of a child or my Mom (there is NO Question) as to who I would choose to survive and have the opportunity to live. I take each and every story I read about these kids so deeply into my heart and it truly hurts so bad. So bad I have been sick to my stomach,but REFUSE to turn a blind eye to it because it is not MY CHILD ENDURING IT….GRRRRRR How sick is that! All I know is I made a promise to help in some way,hopefully a HUGE way some day!!!!!! XOXO

  48. Lizzie Ripp

    Who’s gonna ever get the balls to make a commercial about childhood cancer? Where’s your Sarah Mclachlan commercial? Ronan deserves it. Ty deserves it. We have no idea what those kids and families go through up in those hospital windows. It needs to be in faces nationwide. I can hear the networks now- that’s too disturbing to put on TV.
    Your damn right it is.
    So what are we all gonna do about it?
    Xxoo

  49. cintia rodrigues Brasil rio

    Hi, Maya, my name is Cynthia and I live in Rio de Janeiro Brazil, learned of his story a little while ago and I can not stop thinking about you and your beautiful baby, I have to say is that it was chosen to take care of this little angel he changed her life and Maya could not be someone’s mother Ro had to be you is that you are very strong and I admire you so much, what I think is that great things come from you, I was so sad for you until I read the post showing that you’re pregnant and felt very happy for you, I wish a lot of joy in your life and that your little man is good, he is watching over you now.
    Today I saw a film by concidencia has everything to do with your story is beautiful the name is “golden boy,” if you can see!,
    Continue Maya, the difference is already being done, you are an example of mother, wife and strength
    a kiss from Brazil I love you without knowing you kisses
    and mail cintiacakedesignerrj@hotmail.com

  50. Pingback: Why I'm Boycotting Pink - Life as Leels

  51. Sarah Mirza

    I am a freshman in college. I’ve always wanted to be a pediatrician, but today, because of you, I realized that I want (and will) be a pediatric oncologist. I WILL help you fight this fight and together we will murder the murderer that robbed your son’s life.
    He did not deserve what he went through and I am so, terribly sorry.

    You’re amazing and so is your beautiful little boy.
    Keep it up, you’re truly an inspiration to us all.

  52. Laura

    Dearest Maya,
    I am from a small town in the Upper Peninsula of Michigan (most people don’t even know that we exist!) and even up there cancer finds children. You were so right that cancer does not discriminate. I read this beautiful article about a boy named Grant. His story and strength reminded me so much of Ronan. His story also shows how ugly cancer is. No child deserves to be put through the pain of surgeries, chemo and radiation! There must be a better answer. I believe that because of you, and your story we will find the answers.

    Stay strong Maya, yours and Ronan’s strength and determination will change the world and the lives of so many.

    http://www.miningjournal.net/page/content.detail/id/580309/Grant-Henriksen-loses-battle-with-cancer.html?nav=5006

  53. Angela

    I watched a link to the Taylor Swift video tonight which after wiping away my tears led me to your site so that I could read your sons story. I can’t say enough how sorry I for your loss, he was such a beautiful boy,this isn’t fair. Seeing Ronans story has opened my eyes to a dark underworld and the lack of support these young kids have.

    I’ve thought about childhood Cancer before,but I’ve never researched it until now or made an active effort to learn about it and for that I am sorry. I promise I will do my best to change and try to help raise awareness,I will write a letter to the President/White house to request that they support these kids more,I will look into what I can do to help make a difference.

    I am a woman in my mid thirties who has stage IV breast Cancer and I feel I need to speak out in behalf of young woman and men,including children who have been diagnosed with breast Cancer.

    No one talks about how young people can get breast Cancer,they don’t mention that children have been diagnosed with it,. It feels like these pink warriors only want to speak about the 50 year old woman who is still fighting,not the ones who have have no cure or have lost the battle too early. Please don’t put everyone that has a breast Cancer diagnosis in one box,the pink ribbons don’t do any good for those of us with stage IV/metastatic Cancer.

    I am sickened by all the pink as well,it really doesn’t do any good for those of us with metastatic breast Cancer because we’re beyond prevention,beyond the cure,beyond the pink and most of those pink warriors will avoid someone suffering from Metastatic breast Cancer like we have the plague. I am not saying all this because I am having a pity party for myself,I just want to speak up for the very young that don’t get the same recognition as that woman in her 50’s who is “fighting” stage I Breast Cancer.

    It’s not fair to classify everyone with breast Cancer as an old woman who has lived their life already,Cancer doesn’t discriminate and while I am sure there are more cases of other types of childhood Cancer, there are still many young men,woman,boys and girls with breast Cancer fighting for their lives that people don’t know about because it just isn’t discussed.

    Having gone through some awful treatments,I can’t imagine how horrific it would be to go through as a young child. As a woman who is getting closer to the age of 40 I would do ANYTHING to have sacrificed my life if it meant your beautiful son would still be here. It’s not fair he is gone and I am here. His eyes will haunt me forever.

    You and your son as well as the story of Ty have opened my eyes to the horrors these innocent souls have to go through. I will be researching how to increase Childhood Cancer awareness and suggest my friends do the same.

    I hope next year the white house is lit with gold so bright it is blinding. These little ones who have gone through more than anyone ever should and they deserve that in the very least. Thank you for opening my eyes to something I should have noticed long,long ago.

  54. secret

    Ro is amazing just like you Maya! YOU ROCK DON”T EVER THINK ANY DIFFRENT JUST LIKE RO! You inspire so many people! INCLUDING ME! I love Ro’ story and will continue to share! Thank you Taylor Swift

  55. Cristin Teutul

    I am broken reading this. I’m a pediatric Oncology nurse and I’m broken. I agree with so much of this experience. I’ve seen it although not even remotely in the way a mother/ parent would and I’d never even presume to pretend to have the smallest idea of that kind of that level of gut wrenching soul pain. This post, although entirely necessary, makes me feel entirely helpless 😦 I will comit to some of my own research and ways I can support the much needed modification and improvement in the treatment of childhood cancer and though it is my goal, aim and heart to only comfort and alleviate or at least be with my little brave patients and their families in such an insane and painful time. If I have been unintentionally a part of the problem, sucked into the vortex of western medicine, I am so so sorry. Doesn’t seem enough. Cause it isnt. But I want to thank you for the awareness these posts bring . And your bravery and I want to thank you most, that I , entirely undeservedly , get the incredible oppertunity to know your precious little people . You all inspire my life. Thanks for the eye opener and for keeping passion in the midst of such incomprehensible loss and despair. What an incredibly beautiful thing.

  56. Donna Tine

    Hey Maya – I happened to just re-read this post and I just wanted to say thank you for encouraging Cindy & Lou to hold Ty when the time came – I read that in Cindy’s blog and I thought how beautiful it was and I imagine if I was in the situation I wouldn’t have known that I could keep him with me like that – like I would have had to call someone up to take him away. When I read what Cindy wrote it was like an epiphany – of course she and Lou should have held on to Ty for as long as they needed. And they might not have if you hadn’t told them. So thank you. Thank you for always being so honest and real – I admire you and am learning so much from all of your brave mommas. Hoping Ronan & Ty are together breaking hearts – two beautiful boys, taken from us far too soon.

  57. Marilyz

    Maya you’re such a strong woman! I admire you so much! I know that wherever your beautiful Ronan is he has to be so extremely proud of you! Every single word you’ve said on this post is so true! I can’t believe that there are people out there who think that childhood cancer is extremely rare and it is not as bad as other cancers! I am the mother of a beautiful 5 year old daughter who fought cancer. I’ve seen how cancer destroyed many families, took many kids, and left many of them disabled. You’re doing an amazing job in raising awareness and educating people about the subject. As a mom to a cancer kid I want to thank you for doing what you’re doing! You’re amazing and I know someday childhood cancer will get all the attention/funds/ research it deserves! God bless you and you family always!

  58. donna

    I agree that the media seems to paint cancer as rainbows and sunshine. I love your blog and support your foundation because you have the courage to be honest. I hav elost a family member to brain cancer, and in an unrelated issue, my child has a chronic disorder and will never be “normal”. Due to the sugar coated crap that rises to the top of the media radar, on top of my own grief, I have to deal with expecatations that my child will ‘defy the odds’, because that’s all anyone ever reads about. Like you, I am angry and bitter. My child is not a poster child, my child is grumpy, tired, and pissed. I am made to feel like I am doing a lousy job because of this. It’s not just cancer patients that are disserviced by the “rainbow” media. Thank you for saying it. Hugs and love to you and family.

  59. tony stoddard

    “We Can Accept Or We Can Act!”

    In the short time since I created the Facebook page, “A Day of Yellow and Gold to Fight Childhood Cancer” we have accomplished a great deal. Originally I began this page in mid-September because I was disheartened by how little attention was being given to our young Heroes and Angels during “Childhood Cancer Awareness Month” I was hoping to share this page with mainly friends and family who wanted to do something to honor my five year old son Cole who died from Neuroblastoma Cancer on January 20th, 2012. I was amazed at how many people soon came to this page thanking me for speaking up for their children who were taken by cancer, still battling cancer, and some gratefully who have beaten it! Others; who were blessed with healthy children, joined us because they were touched by our young Heroes and Angels incredible strength, courage, and willingness to smile despite the incredible pain and hardships they endured, and they wanted to help us on our mission.
    In just two weeks we were able to get three schools, in California, Virginia, and New Hampshire to get their students and faculty members to wear yellow and gold on September 28th. Recording artist Ayla Brown and NECN meteorologist Nick Morganelli also joined us on that day by wearing gold in recognition of Childhood Cancer Awareness. My page was inundated with pictures of children and families across the Country wearing yellow and gold. I was moved by the response this page generated in just two weeks. I came to believe that if we could do so much to increase awareness in such a short time imagine what we could do with a whole year ahead of us to make next September a month where Childhood Cancer Awareness will get the attention that is so deserved and desperately needed.
    Each day I am reaching out to our govenment officials, the NFL, MLB, corporations, anyone and everyone who can help us on our mission. Next September we will see Gold in recognition of our Heroes and Angels on the same level that we see Pink in recognition of Breast Cancer Awareness. We have a lot to learn from the brave woman of the Breast Cancer Awareness movement who fought so hard to gain the attention that they have today. Many have expressed to me much jealosy and anger that there is Pink everywhere in October but so little Gold in September. I have nothing but admiration for what they have achieved, I am only motivated to work as hard as they have to get equal recognition for our children.
    If we want that same recognition, we must work each day and night to get there. If we don’t have that conviction we will once again bemoan the lack of Gold next September. We can accept or we can act! Beginning today contact your local schools, colleges, businesses, city and town halls and ask them to prepare for next September to commit to a show of Gold. Do not take “no” for an answer! Our children deserve that we battle as hard for them as they have battled cancer. We must show the same bravery that they have shown us! Please share this with as many others as you can, the battle has begun and we need as many soldiers as possible to fight for our children!
    Thank you, Tony Stoddard (Cole’s Proud Dad)
    http://www.facebook.com/yellowandgoldforcole

  60. ediblebranding

    A Father’s Plea For Help

    On January 20th 2012, my loving, joyful five year old son Cole died from Neuroblastoma Cancer. The moment he took his last breath a piece of me died. For many months I felt that I had no reason to go on in this life. As much as I felt that I just wanted to die and be with him I could not give up because my wife Michelle, his twin brother Troy, and his sister Tara did not deserve more pain if I quit. In September I became angry and disillusioned that there was almost no recognition of Childhood Cancer Awareness Month. Where were the gold ribbons on the politicians, celebrities, and media personalities? Where were the commercials mentioning Childhood Cancer Awareness? Where were the gold lights illuminating the White House and Town Commons? Where were the gold cleats, gloves, and headbands on NFL players during nationally televised games? I felt like I needed to do something to honor my son for his courageous battle with cancer and for the suffering he had to endure. I created a Facebook page I called, “A Day of Yellow and Gold to Fight Childhood Cancer” At first I just wanted to use this page to ask friends and family to wear something yellow or gold on one day in September to show my son Cole that there are people who love him, honored his struggle, and would never forget him. However in just two short weeks over 400 people joined this page. Many of them were parents of children who were taken by cancer as Cole was, parents who were still in the grip of helping their children through painful sometimes torturous treatments, parents of children in remission who continually have to deal with the anxiety that the cancer could return at anytime, and some who came to my page were children themselves who were fighting this monster and asking that I plead with people to do more to bring greater awareness to their suffering. I’m pleading with you to help me do this for them. A few weeks ago I didn’t care if I lived or died. The parents and children I have met on my page have given me a purpose, a mission. We need greater Childhood Cancer Awareness! If we can get the level of awareness raised this will bring increased funding for research which will hopefully bring us closer to a cure. The best way to get the attention of those in politics, sports, business, and the media is by showing them that we have an army of people, voters, consumers, and fans who demand they display gold next September for our children. We will see the gold ribbons, the gold lights, the gold clothing, and the gold commercials in September 2013! I am pleading with you to take just a few minutes each day and ask, beg, and pray for others to join us at “A Day of Yellow and Gold to Fight Childhood Cancer” to get this done.
    Thank You,
    Tony Stoddard (Cole’s Dad)
    https://www.facebook.com/yellowandgoldforcole

  61. Elizabeth

    STAY STRONG maya
    I know that’s what everyone says but it’s hard and it’s true I’m 13 and living with cancer and I pray for your entire family I’ve followed ur blog for like 2 years now I was broken for days after Ronan passed and I’m not gonna b one of those people who tell to try to live ur life like it was b4 but I will tell u to count every day you have and to live life to the fullest for my birthday of turning 13 I asked for Taylor swift tickets :)(and I thank god I was we’ll enough to go) and 130 dollars donated to ur foundation both of those things happened I love you like I love sparkles and thsts real love

  62. Samantha

    I agree with yur post and I stand beside you. I was only a baby. Don’t recall treatment, but I know life has been he’ll and anything but rainbows. Yes, I,beat it but does that make me special? Instead it leaves me often miserable.

    The awareness pissed me off really bad. I hate seeing the pink ribbon everywhere. Especially since you never hear where a dime if it goes. Shows how much the world doesn’t understand.

    My family remembers what I went through but even they treat me different. Judgement hurts. When yur blessed with a cure you never think about yourself like other do. Instead we try and give back. Anymore I don’t get why I do that. It’s underappreciated and I end up being in solitary.

    I guess other survivors are my foamy members.

    Fuck those rainbow and unicorns, we are better than that! Not afraid to fight!

    Message me sometime.

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