Dear First Lady, I just drank a shit-ton of water. Do you think it will bring back my son?


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Ronan. Is this a joke? I’m sitting at my computer, watching my Twitter feed go crazy about the White House being lit up Pink for October for Breast Cancer Awareness month, while they did nothing in September for our kids. Even after we got over 25k signatures for our petition to light the White House Gold, it didn’t seem to matter at all. What we got was a big fat slap in the face and some generic letter basically saying, “We care, but we really don’t care.” When I got our letter back, I was disappointed, but now sitting here at my computer and looking at the White House being pink, I am just straight pissed. I am not pissed that the White House is pink- good for them as this issue has been being worked on hard for a long time now by a lot of people with a lot of money/power/brains, etc…. What I am broken hearted over is the fact that WE (including all of you) worked our asses off to get over 25 thousand signatures to ask for the same thing for our kids, and we were ignored as if our kids, do not matter. Like my son, didn’t matter and doesn’t deserve the same awareness that breast cancer does. Every fucking person on the face of the planet knows what the pink ribbon means. Nobody knows what the Gold ribbon represents and this would have helped the cause of childhood cancer, so freaking much. This is not a one cause is more important than the other issue. This is I just want equal rights for these kids issue. Kids who are too little to have a voice of their own, so we as adults have to have it for them. I feel like we are screaming at the top of our lungs, but are constantly being ignored. This is what I am pissed about and please do not come on my blog and turn this into something else. I would have given up my life in a heartbeat if it would have meant Ronan would have gotten to stay here and live. I would have taken his cancer in an instant, no questions asked. I’ve had enough time here- he did not deserve to not be a child and live a full and wonderful life. I will always wish it could have been me and not him.

I don’t understand why this is even an issue, because it should be taken care of by now. How many more kids have to die? I don’t understand why everyone in the world, isn’t fighting the hardest for the lives of these kids. I don’t understand why such a simple thing, could not have been done. I don’t understand how everyday, kids are diagnosed, dying, going through wars that they shouldn’t have to go through, while being called “hero’s,” when all they want to do is have the chance to grow up, be  normal kids and live long and healthy lives, like they deserve. I don’t understand why kids are being robbed of this and nobody seems to care. Things could change if everyone would pull their heads out of their asses and stop sweeping this issue under the rug. I don’t ever want another mother or family to go through what we have gone through, but this is just going to continue to keep happening if the lack of awareness and lack of funds for childhood cancer, do not change.

While I was watching my Twitter feed blow up, I decided to go and spam the White House Twitter with “Where’s the GOLD for our kids,” etc.. etc… etc… Then I started browsing the First Lady’s Twitter, which is what got me to, “Is this a JOKE,” in the first place. Did you guys know that apparently there is an epidemic running rapid through the world about people not drinking enough water? OMG. I had no fucking idea how out of control and devastating this is. Have I been living in a hole somewhere? It is such a massive problem, that the First Lady has started a whole campaign about it. She says, “Drinking water is a choice that everyone can make.” She is totally right. You know what is not a choice? A 3-year-old getting cancer.

A 3-year-old, getting cancer and having his head cut open to remove a tumor that has spread to his left eye is not a choice. He also doesn’t get a choice regarding all the ADULT CHEMO he is going to have pumped through his body. Which causes nausea, bloody noises, fever, loss of appetite, mood swings, weight loss, fatigue, depression, and loss of hair to MAYBE save his life. And if that works, there is also another MAJOR surgery to have his stomach cut open to remove the mass that originated in his belly. If he gets through that, next is a stem cell transplant to go through, and YAY also radiation and antibodies! WHEW! But I sure am glad he never had to worry about that not drinking enough water problem! But he may have had to worry about it, had he lived long enough to do so. But he didn’t because cancer murdered him. He was robbed of his future as thousands of other kids are being as well. At least we, his family, are all left here to drink our water though. I will make sure that Liam and Quinn get an extra glass of water tomorrow, just for Ronan’s sake. They will drink an extra glass for him because he is not here to do so himself. Thanks for taking on this issue, First Lady.

Fucking bollox. I did not start this to bash the First Lady as I am sure she is lovely and she picked an issue that was easy for her to take on. But to a cancer mom, this is beyond offensive. Childhood cancer is a war and it cannot be won alone without the support of our government and leaders. The fact that childhood cancer only receives 4% of U.S. federal funding, gives me nightmares. As if having a dead son doesn’t give me enough nightmares, now I get to think about this while I’m awake during the day and also while I sleep. I guarantee you, if the President and First Lady actually stepped foot onto an Children’s Oncology Floor, this would not be acceptable to them. If every person was required to step foot in a hospital, on this floor, we would not be dealing with lack of anything in the childhood cancer world as I fully believe this real life epidemic, would be issue number one. Our future generation of great amazing leaders are dying. I know had Ronan been given the chance to grow up, he would have grown up to change this world for the better. Look at all he is doing and he is dead. If that doesn’t say something, I don’t know what does.

Below is the “We care, but don’t really care,” letter from the White House. Thanks for the awesome photo op though, Prez. I really enjoyed seeing how much you care.

Ronan. As always, I miss you so much. I miss you. I love you. I hope you are safe. If they won’t change this, we will. I promise you that.

Fighting Pediatric CancerBy Paulette Aniskoff, Deputy Assistant to the President and Director of the Office of Public EngagementThank you for your petition and for your ongoing effort to raise awareness about the important issue of pediatric cancer.President Obama shares your commitment and, although we cannot light the building gold for the month of September, we’re issuing a Presidential Proclamation to help amplify your important cause, as we have in past years to commemorate National Childhood Cancer Awareness Month. And the President has continued to meet with cancer fighters — including 7 year old Jack Hoffman, a brain cancer patient and cancer research advocate.President Obama with Jack HoffmanPresident Barack Obama greets Jack Hoffman, 7, of Atkinson, Neb., in the Oval Office, April 29, 2013. Hoffman, who is battling pediatric brain cancer, gained national attention after he ran for a 69-yard touchdown during a Nebraska Cornhuskers spring football game. Hoffman holds a football that the President signed for him. (Official White House Photo by Pete Souza)But we think it’s not good enough to simply make more people aware of the issue: The Obama Administration is committed to continued support for outstanding pediatric cancer research. Because this issue is incredibly important — too many children and their families face the devastating effects of cancer. And as you point out, it remains the leading cause of death by disease for American children under the age of 15.That’s why the National Cancer Institute continues to support long-term research efforts to help us better understand and treat pediatric cancer. You can learn more about our scientific efforts here.

We are making progress: Success in treating pediatric cancers has led to large numbers of long-term pediatric cancer survivors with long life expectancies.

In addition, the Affordable Care Act offers a number of important benefits for children fighting cancer. For example, eliminating lifetime caps on care means insurance companies can’t set a dollar limit on what they spend on a child’s care. And insurance companies can no longer deny families coverage because their child has a pre-existing condition like cancer. And the law will help millions of Americans, including children, get health insurance so if an accident or illness like cancer happens, they can get the care they need and deserve and are protected from high, unexpected costs. You can learn more about these benefits and more atHealthCare.gov.

So along with the proclamation, we’re also committed to supporting families battling cancer through the Affordable Care Act, and funding pediatric cancer research to find more effective, safer treatments.

Tell us what you think about this response and We the People.

Presidential Proclamation: National Childhood Cancer Awareness Month, 2013

Every September, America renews our commitment to curing childhood cancer and offers our support to the brave young people who are fighting this disease. Thousands are diagnosed with pediatric cancer each year, and it remains the leading cause of death by disease for American children under 15. For those children and their families, and in memory of every young person lost to cancer, we unite behind improved treatment, advanced research, and brighter futures for young people everywhere.

Over the past few decades, we have made great strides in the fight against pediatric cancer. Thanks to significant advances in treatment over the last 30 years, the combined 5-year survival rate for children with cancer increased by more than 20 percentage points. Today, a substantial proportion of children diagnosed with cancer can anticipate a time when their illness will be in long-term remission or cured altogether.

My Administration is dedicated to carrying this progress forward. We are funding extensive research into the causes of childhood cancer and its safest and most effective treatments. We also remain committed to easing financial burdens on families supporting a loved one with cancer. Under the Affordable Care Act, insurance companies can no longer deny coverage to children with pre-existing conditions or set lifetime caps on essential health benefits. As of January 2014, insurers will be prohibited from dropping coverage for patients who choose to participate in a clinical trial, including clinical trials that treat childhood cancer.

All children deserve the chance to dream, discover, and realize their full potential. This month, we extend our support to young people fighting for that opportunity, and we recognize all who commit themselves to advancing the journey toward a cancer-free world.

NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim September 2013 as National Childhood Cancer Awareness Month. I encourage all Americans to join me in reaffirming our commitment to fighting childhood cancer.

IN WITNESS WHEREOF, I have hereunto set my hand this thirtieth day of August, in the year of our Lord two thousand thirteen, and of the Independence of the United States of America the two hundred and thirty-eighth.

BARACK OBAMA

Thank you, White House for basically telling me my son does not matter and he is just a dirty little secret that deceives to be swept under the rug. Put a face to THAT because he DOES MATTER!

Thank you, White House for basically telling me my son does not matter and he is just a dirty little secret that deserves  to be swept under the rug. Put a face to THAT because he DOES MATTER!

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59 Comments

  1. I was gobsmacked when I saw the photo on IG. Unbelievable. I want to take nothing away from breast cancer awareness, but it’s ONE cancer…there are so many others but it’s like they don’t exist.

    Reply
  2. SF

     /  October 24, 2013

    The breast cancer awareness movement is so powerful thanks to the Susan G Komen foundation, which was founded by Nancy Brinker. She was a former US Govt Ambassador who worked for the Bush administration, AND her husband is a millionaire CEO who owns Chilli’s and other major restaurant chains. So money and power talk, that is the truth.

    What’s interesting is Pres Bush Sr.’s daughter died of leukemia…you would think the Bush family might have tried to raise more awareness for this cause…I wonder why not? Sometimes I wonder, does the government really care about our health or our children? We don’t need a campaign to tell us to drink more water…I do think it’s important to eat nutritiously as the FLOTUS encourages but the truth is lifestyle changes can’t change pediatric cancers, most are caused by genetic mutations, this means more support for gene therapies and genomics/bioinformatics research.

    You have come such a long way in the past 2 years…I truly hope that come next September we will see a different response from the WH. As a woman I would rather see more funding go to children and less to breast cancer honestly.

    Reply
  3. I’m going to be honest. I support cancer research. I support a lot of causes. I don’t however, support favoritism. Yes- it’s wonderful that people do fundraisers and walks and runs for Breast Cancer – I’d never take that away from anyone. But it’s getting to the point where it just makes me cringe to know that THIS much awareness is being raised for this ONE form of cancer while a child is laying in a cold hospital room, fighting for their life. (And many other forms of cancer go unnoticed as well. Colon, ovarian. Etc.) Since October began, every time I see something with Breast Cancer Awareness, I comment on it. “I think it’s wonderful that you’re raising awareness, but where was this kind of awareness last month for Childhood Cancer Awareness? What about the kids? Don’t they matter too?” I also often comment, “Go GOLD.” If I can get at least one person to realize it, I’ve succeeded, because once they know, they tell others, and then they tell others and so on and so forth.
    You know else is sickening? The mentality of some people. I actually heard someone say once, “…it [childhood cancer] is not that common, it doesn’t effect that many people.” That’s their excuse for why Childhood Cancer has such little awareness. What kind of bullshit is that?! It’s disturbing to know there are people who actually believe that. I find it so sick that there is such little awareness out there.
    I literally share Ronan’s story all the time. I wear his bracelets everyday – visibly – just so people ask what it’s for. I always make sure to tell them to visit the foundations website.
    It’s just mind boggling that it continues to be ignored.
    I don’t know about the White House, but I can promise you that I, along with Maya’s Mafia, will continue to fight in any way that I can to help Childhood Cancer get the attention it needs. I will continue to do what I can for these kids, even if it’s just getting people to read your blog or visit the foundations website. Maya, I don’t know you or your family, but Ronan has most definitely changed my life. Thank you for continually sharing your story. I know you hear it a lot, but you truly are an inspiration. Thank you.
    Much love from NY.

    Reply
  4. Gina

     /  October 25, 2013

    What a ridiculous response to our petition. So you “cannot” light it gold. May I ask why not?

    Reply
  5. Tara

     /  October 25, 2013

    I am so upset over this. A ton of my friends are going pink, with little pink ribbon badges attached to their uniform. A ton of the towns stores have gone pink. I will refuse to go pink until this worlds children get heard. WE NEED MORE AWARENESS! Yes, I am a child myself,but I just think that could be ME lying in a cold old hospital bed,childhood cancer killing me. THAT is why I go gold. For the kids. For Ronan..

    Reply
  6. Maya, you’re dead right….

    Reply
  7. Becca

     /  October 25, 2013

    This is so stupid for the white house to do. If I was president I would do it. Has he NOT heard about Ronan? This makes me incredibly mad. Little kids NOT having a future due to death from a cancer, is more important than Breast Cancer that EVERYONE knows about.

    Reply
  8. ellen

     /  October 25, 2013

    Maya,
    I share your disgust. I am so sorry for what Ronan had to go through, and you as his mother to see him suffer so much. Awhile back you wrote a post about feeling “used”. And, I gotta say, politicians are the ultimate “users”. Politics, no matter what side you’re on, is about power, money, and influence. NOT “helping kids” or “finding a cure”… anyone who thinks any different is naive and being USED. Just like ACS “uses” bald kids to raise funds, or Obama “uses” real-folks’ stories to “demonstrate” the impact of the latest policy, they’re ALL USERS!!!! It is a fact of life. The “human story” gets the vote, money, and power. But, for some reason, the “story” of kids getting killed horrific deaths from cancer everyday is not “worthy” to Washington because it cannot be parlayed into votes, money, power. Sick. I received an email in September from the Dept of Health and Human Services reminding me that it was “ovarian cancer awareness month”. Why? Because of politics, Maya.

    Reply
  9. Kris

     /  October 25, 2013

    Well said Maya- well said.

    Reply
  10. Keri

     /  October 25, 2013

    Maya,
    I promise none of us are going to give up. The fucking pepto bismol White House is a slap in the face but we’ll get right back up and keep fighting.

    My 16 year old son has to write a persuasive essay about an influential person an he chose YOU! The first line of his essay is “you always hear how there isn’t anything a mother won’t do for her child, well maya Thompson proves that saying with her crusade to end childhood cancer.”

    You ARE making an impact maya. Fuck the government. They screw up everything they touch anyways. We’ll get this done because we’re moms and that’s what we do!

    Reply
  11. Sara Knilans

     /  October 25, 2013

    This is my response that I left for the stupid White House: So pissed…

    “I think this is bullshit and totally pathetic. First of all WHY? Why can you light the White House pink for breast cancer and not gold for Childhood cancer…CHILDREN of which the president has two?? HEALTHY ONES at that? I am so sick of the president doing exactly what he said he would not do….play politics. We don’t want to hear his political bullshit response but a HUMAN response..to a disease that is KILLING CHILDREN. Pathetic is the only word I can think of.”

    Reply
    • krispearson88

       /  October 25, 2013

      Pathetic is right. I don’t want to hear BS politically correct excuses. It is just plain WRONG!!!!!!

      Reply
  12. Melissa V

     /  October 25, 2013

    I was so angry when I saw the pink White House last night. I am so sorry for you and all of us really that are voices were not only ignored but we got a nice little slap in the face when they put the pink light outs after refusing the Gold ones. Reeeeeediculous. I will make sure I drink plenty of water….wtf is that? How absurd. What a waste of a valuable voice. Gabriella nailed it….it is complete BULLSHIT!

    Reply
  13. Jennifer Deibler

     /  October 25, 2013

    I left the following response for We The People:

    I think the response is some sort of sick joke. How can we light the White House pink for breast cancer and not gold for CHILDHOOD CANCER. As the president of our country how can you not care enough about the future leaders of this country to light the White House GOLD for one day just to show you care. Sure all cancer sucks but losing our children to cancer is worse. We have to go one being parents and fighting for them even after they are gone when you as the president can bring awareness to the entire country. If the president truly did care he would change all the light bulbs for one day. It can’t be that difficult he did it this month for breast cancer. I could never imagine losing a child to such a horrific disease but I held my son when he took his last breath at 6 hours old and that for me was devastating. All we asked for was one day. We didn’t ask for more funding although that would be very helpful in the fight. All we wanted was one day.

    I find it so horrifying that he could bring awareness to the entire country and yet he refused.

    I am planning to raise money at my office for your foundation in January.

    Reply
  14. Caitlin M

     /  October 25, 2013

    So, as with everything he does/says, he turned the lives of children into another campaign for what HE wants. I’m so over all the BS that comes from this administration! These kids need someone to fight for them since they can’t fight for themselves. These kids are so lucky to have you, Ronan, and the rest of your family, Maya.

    Reply
  15. Ashley

     /  October 25, 2013

    I want to vomit. Sometimes I do literally vomit when I see all of the pink. And I am a breast cancer survivor three years out from my diagnosis. Unfortunately, it runs in my family. I was diagnosed much earlier. I am in a support group with people of ALL cancers. Most of us were diagnosed very early and were told we couldn’t have cancer because of our age.

    Back to the pink…a large number of us breast cancer survivors hate this month and all of the “awareness” it brings. Where is the research? The funding for metastatic cancer? And, yes to us, where is the support for ALL cancers?

    I wore Gold in September. I talked about childhood cancer. I am promoting events to help a young boy in my hometown who has brain cancer. And, I am a breast cancer survivor.

    My point in saying that is I have no respect or understanding of why the White House couldn’t have been Gold. Nor why there is a lack of awareness for it. Nor funding. Unacceptable.

    Keep on with your crusade. You have support from numerous people. Your voice, Ronan’s voice, will be heard. Funding will come. And, hopefully, one day you will want to vomit at the sight of the gold ribbons because there is so much awareness (but never at the sight of funding or services to help the families).

    I hope I made sense. Sometimes my chemo/medication mind isn’t as effecient as it used to be.

    Oh, and I LOVE the Spirit Monkey!!!!!

    Reply
  16. Kristen

     /  October 25, 2013

    My mom fought and survived breast cancer 5 years ago, and her best friend is currently fighting it now. So don’t get me wrong in saying I appreciate the White House being lit up pink. I appreciate the awareness for people like me to get checked and notice the signs. I’m passionate about bringing breast cancer to an end, or at the very least a quick cure!
    With that said, my heart breaks for these children. Why can’t it be gold too? We have food labels that help breast cancer, why can’t some “kid food” labels help childhood cancer?
    In my opinion, it has to be that people don’t want to hear about kids dying or hurting. With breast cancer, you can hear a million success stories and a few losses – but even then most can justify it to themselves by the woman “living a good long life” because she wasn’t 4 years old when she died.
    People don’t want to hear the tragedy of childhood cancer because it’s too scary, too sad, etc. I really hope this changes. Because maybe if awareness was brought to these beautiful children, we would some day hear mostly success stories.
    My love and prayers go out to you all!

    Reply
  17. Michelle H.

     /  October 25, 2013

    SO very frustrating…I cannot begin to imagine how angry you must feel when reading that letter. Such BS… :(

    Reply
  18. Debbie jett

     /  October 25, 2013

    Maya… Your words speak the truth. At this point screw the the whole light up the White House waste of time.. We demand a cure.. All the money spent on a 11 year war.. Could be working on a cure. Having had advanced stage 3 colon cancer.. I support my colon peeps BUT..I feel our sweet, precious kids come FIRST. Our voices will be heard.. And not one more innocent child be left behind xo

    Reply
  19. Hi Maya Thompson. My name is Laurelie Hall and I am the president of Teamwalkon a nonprofit created by my brother, John Thomas Hall. He lost his life battling leukemia and I gave my word to keep his foundation running. I am connecting with the childhood cancer community to create a support system for patients and their families.
    I was truly touched by your blog. My deepest condolences for the loss of your son Ronan. Truly I can relate with what you and your family has been and continues to go through as this is a war we are fighting which seems to have no end. I would like to work with you to change this. We as adults need to advocate for these kids suffering so greatly.
    Please feel free to contact me at anytime.
    Sincerely,
    Laurelie Hall/ President TWO
    laurelie@att.net
    contact@teamwalkon.org
    (323)709-9458
    http://www.teamwalkon.org

    **Let’s unite and create a world where people cannot turn the head to childhood cancer!! And let everyone know what GOLD means!!!!!

    Reply
  20. Rachel in Camas, WA

     /  October 25, 2013

    I left my “opinion” about the bullshit proclamation on the link above.

    Reply
  21. My thoughts exactly. I think we should spam the First Lady with pictures of 7 different kids that have died every single day for the next year. Maybe she’ll get the point then.

    Reply
  22. Andrea Bono

     /  October 25, 2013

    I read your blog often but have never left a comment. My daughter is 7 years old & a cheerleader for our local football team. There are about 250 children (plus parents) involved in this program – cheerleaders & football players. This month we have sold pink shirts, the girls are wearing pink headbands with a white/pink ribbon to all games, in addition to pink & black knee highs with pink ribbons on the sides. The football players also wear pink socks & long sleeve shirts under their uniforms. We do travel & many of the other teams do the same. I did sign your petition to light up the White House gold for September & couldn’t believe it was denied. After our first October game and all the focus on breast cancer (which I do think is important) I shared Ronan’s story with my daughter. She cried & together we talked to her coaches to see if next season we can make September just as important as October! We will be working with the heads of the organization & simply will not take no for an answer. This has become my daughter’s passion. So in addition to the girls & boys wearing gold during the month of September I am hoping more than anything to bring awareness to this very important cause. Also, with your permission I would like to raise funds for Ronan’s Foundation. Although we are only a small town football team I believe we can make a difference & so does Marissa!!!

    Reply
  23. Chrystal

     /  October 25, 2013

    I think you should start a petition for the NFL. They all wear pink and talk non stop about pink during October, they even auction off the pink items they wear during games to raise money. I think they should do the same for September!!!

    Reply
  24. You have every right to be angry. It makes me upset, and I haven’t lost a child to this monster. When I first learned Ronan’s story, I decided that peds hem/onc was the specialty I wanted to go into when I finished nursing school. I want to be their voice and fight for them so badly that I ache. I hate that, while breast cancer awareness is a worthwhile cause, it’s shoved down our throats the entire month of October between the White House, NFL, and other marketing. Childhood cancer has touched someone just as often as breast cancer has. Why is no one paying attention to that?

    Reply
  25. Your strong words, writing and voice will change this. You have lots of support, you have people all over… there are other moms, dads and doctors working to change this. I know that Pink is October, someone worked so hard to create that awareness… to change breast cancer and create change. We can do that with Gold. I hate that the White House said no… seriously why would they not???!?!?! In this time when so many are unhappy with things it is an easy way to please… and more importantly share nad raise awareness and change this… our future president might be one of these kids… Keep moving, yelling, sharing, working, talking and living. I have a feeling Gold will be painted everywhere next year. This is my passion too… I like to yell, change, boss and share Madeline…

    Reply
  26. Carla

     /  October 25, 2013

    So Maya here is the thing…..Ronan woke up this part of my soul that has always responded to this topic. You have taught me to find out what pediatric cancer looks like beyond the adorable bald headed faces of St. Jude’s cancer research advertisements that feature children who seem to be doing well. So I spend last year digging deeper listening to the whole story. I’ve watching real life video of the whole process a child fighting cancer faces and what it means for the family. I’ve been educating myself and starting to get braver with my words and opinons. I’m learning from you how to get involved. I paid attention for the first time ever how different Childhood Cancer Awareness Month feels in comparison to other awareness months that this nation recognizes. The last day of September compared to the first day of October was shocking for me. It was as moment I won’t forget. It was the first time I realized first hand where childhood cancer awareness should to be right now today and how our Nation is failing to step up to the plate and get it right. I went to the grocery story with my son. The cashier asked if I wanted to round my total up to the next $$ and donate to breast cancer for breast cancer awareness month. My son grabbed a pink ribbon from the jar and he talked to me the whole way home about what his high school is doing to support breast cancer awareness month. This is when all the words that I have been hearing, reading, and researching in regard at o childhood cancer hit me like a frate train. I AM IN…..I want it to be different by next September. I want the grocery store worker to ask me if I want to round my total up to the nex $$$ to donate to childhood cancer awareness month….etc. etc. I want the White House Gold next year. I want a lot of thing….I want you and other parents to know that you changed me and now one more person is behind you as we all fight for our planets kids. Thank you….I’m am grateful to you for being real and honest, you’ve helped me figure out what moves my soul. For a person like me who is not by nature an activist and has a quiet voice….Thank you Ronan for making me brave enough to move forward into action. It is not hard when I look into your blue eyes and hear your moms heart. For you and all the kids that fought and are currently fighting…..I promise to be brave!

    Reply
  27. Andrea

     /  October 25, 2013

    I couldn’t even finish reading that letter from the whitehouse. What horseshit from a bunch of Self righteous bastards. Excuse my language. But I am also beyond pissed. Maya, your fierce determination WILL NOT go unnoticed, you are making waves. Keep going. I just can’t get over how beautiful Ro looks in those photos. What a smack in the face…… I’m sorry :(

    Reply
  28. Whitnee

     /  October 25, 2013

    FUCK YOU OBAMA! Oh and your stupid ass First Lady.

    Reply
  29. ag

     /  October 25, 2013

    Maya, you are simply the best at telling the truth, cutting to the heart of the matter, of calling an ass an ass and of loving kids. What a complete insult. It literally made me want to puke. I don’t want to take away anything from breast cancer either-my sister and niece battled it–however, I don’t think that it is any more important than any other cancer. It should not get all the awareness-I’m sure men care as much, or more, about their B*&%s. To me, childhood cancer is, well, worse. A grown woman can understand what they are going through-but how do you explain all that shit to a little kid? I left my feelings about the official response-don’t you worry. They will probably never read it, but I feel better calling their asses out. I want to help, so if there is a way, let me know. I will be looking for ways on my own.

    Reply
  30. Jen

     /  October 25, 2013

    They did the same thing to us when we petitioned for Purple for March of Dimes, my husband and I have lost 3 children to unknown causes so we picked an organization that focuses on healthy babies to team up with (until they are able to tell us the name of the disorder taking away our children)
    The white house’s response was weak at best and lighting it pink pissed me off too! I’m with you, Maya.

    Reply
  31. Bobbie

     /  October 25, 2013

    I have to start off by saying that I don’t have an issue with pink and I support breast cancer research because I know too many people who have been affected by it. When you lose a mother or sister or Aunt or friend to it, you are definitely impacted by it and so thankful when you hear that someone survives it. That being said, I hate that we cannot get that level of attention for childhood cancer. I know just by reading the comments on your blog that there are so many people who really do care. I am so amazed by what you do and your passion. I’m also aware that there are so many other efforts that go on to raise awareness. Just last night I watched a program on HGTV where the “Undercover Cousins” fixed up a house for a family whose child has been fighting cancer for 2 years. This little boy (11 yrs old) raises money for childhood cancer by raffling off home cooked meals that he cooks himself. And then you have Laurielie from above who does the “teamwalkon”. Can you imagine how many other families are doing similar things. How do you unite all of these efforts as a unified major force? I wish I had the answer. I am a marketing professional and I wish I could just quit my job, move to AZ and figure out a way to help you! I’ll keep my thinking cap on and it’s GOLD for 2014.

    Reply
  32. Amy

     /  October 25, 2013

    I too responded to the White House’s response, it went something like “get your head out of your asses”. All they had to do was change the colour of the lights on their house. I can’t believe this cause is getting so little attention. It makes me feel sick. That picture of Ronan at the end is heartbreaking, he looks so young but you can see a glimpse of the man he is becoming. How can anyone ignore him? I have no idea.

    We can all do our bit, and you Maya are doing so much good in this world. For my birthday I am raising £1000 for paediatric cancer research, in honour of all the children I have read about since learning about Ronan. If we all spread the word and do our bit, we can change the world of cancer.

    Reply
  33. joanne

     /  October 25, 2013

    i dont want to be mean or anything but i seriouly would want to email this post to this first lady person! sure water is important but not as much as all these other cancer diseases. thats all imma say. and too much water is still bad so.. enjoy your water filled life ” first lady ” ***** water is the least thing someone can worry about

    Reply
  34. Ugh.. it’s so ridiculous how our government barely acknowledges that there are kids dying every day. You would think that one of the many first ladies who are mothers would have taken a stand on this issue a long, long time ago. It’s sickening and depressing. And it pisses me off. How can there be so many people out there like us who read your blog, but just because you aren’t “famous,” no one important enough gives a shit to help this cause.

    These kids are the future, they deserve to be given a chance at a life, too.

    Well, we can only start preparing for next September. Just tell me what I need to sign to get Ronan and all these amazing kids the justice and honor they deserve.

    I hope you are able to have as good of a weekend as possible.

    Sending love from Cincinnati,
    Kelly

    Reply
  35. Kelsey Hart

     /  October 26, 2013

    This broke my already broken heart. I have so much love for Ro, every fighters, the ones who were murdered, and the families who are affected. Our broken hearts are for the children.

    Reply
    • Kristina Salinas

       /  October 26, 2013

      As I lay her in bed battling the flu (after getting the flu shot a month ago) I started crying uncontrolably, my husband walked in asking if I was in pain and I replied yes my joints but more so my heart. I have experienced vomiting and other messy bodily functions and can’t image how a child could even bare something like this yet alone all the treatments they

      Reply
  36. Margo

     /  October 26, 2013

    I replied to the President’s Proclamation. Basically I said CHILDREN FIRST. More children die of cancer than do women with breast cancer. A woman with breast cancer can still run for office. A dead child can’t. We can be denying the future president or the child that will one day cure cancer.

    Reply
  37. Kristina Salinas

     /  October 26, 2013

    As I lay her in bed battling the flu (after getting the flu shot a month ago) I started crying uncontrolably, my husband walked in asking if I was in pain and I replied yes my joints but more so my heart. I have experienced vomiting and other messy bodily functions and can’t image how a child could even bare something like this yet alone all the treatments they go through often times for years. No child should ever experience that they are dying and often times opt for that option when the pain is too much to bear. I love yout spirit and raw honesty. Ronan is in heaven paying with his buddies bragging about the kick ass Mom he has!

    Reply
  38. mandy santoz

     /  October 26, 2013

    I share your disgust here….. of course breast cancer should be noticed but us children are the future!! Why in the freakin world shouldnt we represent children who are dying from many cancers but i all i hear is breast cancer this breast cancer that. Its like no one cares about children. I cant even imagine having to be a little child (even though im 12 >.<) getting lots of surgeries to get some stupid tumor outta me. We need more awarness for all cancer but i have NEVER EVER seen or heard anyone talk about CHILDREN diseases. I hate this so much! I could just picture me right nowl confused by whats happening and me stuck up on a moniter, am i going to live?, will i ever see my parents again? All these little thought will come true sooner or later… and all of the radiation and surgeries didnt work. You know what i would feel?? Used up but NOT helped much.

    I love you so much maya (ronan too) this is the reason why i wanna be some kind of sciebtist to solce cures for this nasty disease!

    Reply
  39. Beth

     /  October 27, 2013

    This has nothing to do with the current post but I just listened to my favorite Billie Holiday song called ” Good Morning Heartache” and it kind of reminded me of you and your continuous grief. This is a song I would listen to if I had a loss as tremendous as yours, hope you listen to it and love it as much as I do.

    Reply
  40. Liz F

     /  October 27, 2013

    I hesitate to even speak, but I just wanted to say that while I am enraged by many many many things in Cancerland, of which I have been a resident for four years, the anti-Obama talk on the part of posters is counterproductive and alienating. I could happily chime in with some vitriole about the Other Guys, but you know what, that’s not going to find a cure or preventions or anything else. It’s very likely that the President never saw this petition, as the overwhelming majority of them are handled by low-level bureaucrats. I find the accusation that he doesn’t care about kids with cancer offensive.

    Reply
  41. Michelle

     /  October 27, 2013

    YES! You are 100% right, and all cancers should be treated equally. Breast Cancer is the highest funded cancer out there, but not a damn person in power gives a crap about these innocent babies, and the devastation that cancer causes on them and their families. I wish we could slap them and wake them up. This is unacceptable!

    Reply
  42. Tiffany

     /  October 28, 2013

    I’ve been reading your blog here and there for a while now, just checking in every now and then to see some of the amazing things that are happening because of your beautiful boy.

    I had to comment on this one though because I completely get what you mean. Although, I haven’t had to personally deal with childhood cancer in my life, I did lose my mom to a Cancer that barely gets any research funding from the government too. I completely get the frustration that can come with “everything being pink”, even though I am so happy that they get their funding, at the same time, it’s not fair. They have donated so much money to Breast Cancer, making the chances of survival much higher… they should really focus on evening out the survival rates of other Cancers, like childhood ones.

    It’s a devastating fight, one that makes people feel like other Cancers aren’t important, but just remember that if we all keep working towards that goal, one day so many more Cancers will be recognized just as much as Breast Cancer.

    Stay positive!

    With best regards,
    Tiffany

    Reply
  43. Tiffany

     /  October 28, 2013

    I had to comment on this one though because I completely get what you mean. Although, I haven’t had to personally deal with childhood cancer in my life, I did lose my mom to a Cancer that barely gets any research funding from the government too. I completely get the frustration that can come with “everything being pink”, even though I am so happy that they get their funding, at the same time, it’s not fair. They have donated so much money to Breast Cancer, making the chances of survival much higher… they should really focus on evening out the survival rates of other Cancers, like childhood ones.

    It’s a devastating fight, one that makes people feel like other Cancers aren’t important, but just remember that if we all keep working towards that goal, one day so many more Cancers will be recognized just as much as Breast Cancer.

    Stay positive!

    With best regards,
    Tiffany

    Reply
  44. mandy

     /  October 28, 2013

    yesterday i was leaving to go somewhere in the car and we drove past this family of 5. a mom, dad, i think a daughter maybe 17. they each had a cigar in hand. and they had a 5 yr old with them. i was thinking wtf?!?!?!? i mean everyone knows that you can get cancer or something like that when you smoke. pretty sonn when that child grows up, he will too have some sort of disease. they were walking towards ANOTHER group who was also smoking…

    this probably doesnt have to do anything with this post but i just wanted to share this. parents need to be aware of their childs sorrounding ( nuthin to do with this sorry). everyone always says “children first” in capaigns or in organizations but to tell you the truth, i don’t see any changes for children. in schools they do talk about being healthy and dont smoke drugs or whatever but how come they still sell them in america??? some other kind of drugs are illigal but why not all? i may be a child myself and may not understand some things but why sell things that are maybe, lets say, posionus? but anyways, i feel extremly bad that no one ccares about child related cancer. i want to see gold for once on the light house. how come only pink for breast cancer??? why not something else for awareness?!

    thank you for reading this maya

    Reply
  45. Erica Fisher

     /  October 28, 2013

    I have never been so enraged by “simple” correspondence. The letter received by the White House sickens me more so that ,as in recent fashion, the Affordable Care Act had to be penned in. I may not live in “the” White House, but my simple white brick house was lit with gold. Myself and my children, 10 & 6, both wore gold ribbons the entire month. No petition needed, just a heart, a Mother’s heart at that. God speed and much love from a young single mother in Texas.

    Reply
  46. Thank you Maya for rallying this army and bringing so much awareness to pediatric cancer. I know that you and Ronan are changing this world for the better. FU CANCER!

    Reply
  47. Tammy Martin

     /  October 31, 2013

    May god bless you. Im gonna start a prayer chain at my Church fellowship of the parks,keller tx for you and all the cancer children and ronan. Ive shared your story on my page also. Never stop fighting.

    Tammy Martin

    Reply
  48. Steven Lutz

     /  November 1, 2013

    Maya,
    I get to celebrate some peoples ignorance with you today also! Today November 1st is my Son Parker’s 12th Birthday! But instead I sat and cried because I haven’t seen my son in almost six years because he to was murdered on November 7th, 2007 at age 6 by the Horrible “MONSTER” Cancer. I would be celebrating with him right now but I cant. But I do get to think about November 13th this year because that will be the day when I lived without my son longer than he was alive. But I did get to drink a lot of water and adult water myself to replenish my tears for the rest of my life. Also people make sure when you do donate you give it to the kids and not some CEO that is the head of some corporate MARKETING GIANT that feeds on peoples emotions. As they decorate there offices with nice gifts as they call them from all over the world. There’s a few good ones out there do your research. And MAYA I love your honesty! Use it to spread the truth. People ask me a lot how many kids I have and I think to myself “GOTCHA” and I use it to bring one more person up to speed.

    PARKER POWER FOREVER
    STEVE LUTZ “Parker’s Dad”

    Reply
  49. Chelsa

     /  November 2, 2013

    Huntsman cancer in Salt Lake City just announced a big expansion to help fight childhood cancer. The article can probably be found in the salt lake tribune or the Deseret news

    Reply
  50. Monica

     /  November 2, 2013

    I’m upset at this issue…that it IS swept under the rug. My fb had gold…I did my part. I know these children matter. I am not afraid to say it.

    What upsets me more, is this drive the Mrs. has to run our lives. I’ll drink water when I want to, and I’ll drink whatever the hell else I want, too. Land of the free if you’re rich enough.

    Reply
  51. rose

     /  November 5, 2013

    in my high school i have been talking to all my teachers about childhood cancer. i wanted them to do something, ANYTHING. all of them blew me off. i talked about Ronan to my teachers. i gave them facts about childhood cancer and i gave them websites so they they go and see for themselfs. i don’t think one of them did bother to come on this site. chlidhood cancer is a scary and terrible thing. no one wants to hear about kids dying. thats exactly why we need people to know about this so it will stop. i will still try to do everything i can even though all im getting is no. Maya dont stop. next year we will have even more people that will sign to get the white house GOLD. they cant ignore us forever.

    Reply
  52. Jordan Belous

     /  November 5, 2013

    HI Maya, I have been following Ronans blog since the beginning and he is a beautiful boy. I am 14 years old at just started high school. Unfortunately, i have known WAY to many kids, including 3 who are very close to me who passed away. This year, high school east (half hollow hills) went GOLD the last 2 months of september to raise awareness for children who fight this monster, that they know nothing about. This blog is amazing, beautiful. Absolutely PERFECT! keep on going Maya, you are almost there! HUGS

    Reply
  53. Deanna Mahkovec

     /  November 5, 2013

    Maya,
    Have you heard about THON at Penn State? It’s a dance marathon to raise money for pediatric cancer. They’ve raised millions of dollars over the years. My cousins daughter just graduated from PSU and was involved, now my nephew is there doing the same. It’s really amazing. If you haven’t heard about it you should check it out. http://www.thon.org
    Keep fighting the good fight! FU CANCER!!
    Deanna

    Reply
  54. I’m so sorry for your loss. I know exactly what you are going through as I lost a child too. I also watched my sister die from Rhabdomyosarcoma after a 2 yr battle. And I understand your anger.

    I lost my son too. He was 6 yrs old and died from Congenital Diaphragmatic Hernia. Never heard of CDH? Most haven’t though there are 1600 cases a year in the US. 50% of these children (mostly babies) died. Cause unknown. Shane was my only child.

    I run a charity for CDH now going on 18 years. In fact it’s the world’s largest charity for CDH. Every 10 minutes a child is born with CDH, every hour we lose 3 children. We’ll be able to fund just $40,000 for research this year. Not for lack of trying to fund more just little awareness. Without awareness you can’t raise money and without money you can’t raise awareness.

    We tried to get the White House to light too for CDH in April. We got a much more generic letter than you did. We got the “we support March of Dimes and birth defects” slap in the face letter. MoD funded only $200k for CDH in the past 10 years.

    NIH funded just $4 million. My son’s medical bills were $4 million. The average CDH medical bills are $500,000 per child.

    No one recognizes our ribbon… it’s baby blue, pink and yellow with clouds. We tried to be different and not share a color.

    Most people can’t pronounce Congenital Diaphragmatic Hernia.

    CDH is as common as Spina Bifida and Cystic Fibrosis. Same occurrence rate. They have chapters in every major city, billions in research, millions in charity donations, marathons, celebrities and everyone knows exactly what they are.

    No one knows what CDH is. We can’t get people to care. 800 kids die a year and you don’t see that on CNN or Fox.

    I’ve beat my head against a brick wall for so long it bleeds every day. I feel your pain. But I wish to God people knew what CDH was like they know what cancer is.

    None of this is far, for any of our children.

    Reply
  55. Rachel

     /  November 6, 2013

    Wow, I cannot believe the White House refused to light up gold! As sorry as I am to hear of anyone with breast cancer, I am also sick of hearing about it as though it’s the only cancer that matters. I’m sick of teenage boys using it as an excuse to wear bracelets with the word “boobs” all over it. If anyone thinks they’re wearing them to support breast cancer awareness then they probably never spent more than 10 minutes with a teenage boy. I’m sick of models with fake boobs using it as an excuse to pose nude in campaign spreads. It’s like they’re trying to sexualize the disease or something. I guess “save the innocent babies and toddlers from cancer” doesn’t have the same ring to it as “save the tatas” or “I heart boobies”.

    You would think as a parent of two kids, the Obama’s would take a moment to publicly make children’s cancer a central issue. Every word that comes out of that their mouths is heard by millions. They both have so much power and to refuse to use it to help little kids that are being tortured to death by this disease is shocking and disgusting.

    Reply
  56. lori

     /  November 21, 2013

    Ronan’s sweet face is known worldwide. I hate that it is. I wish you baby was still in yo. Arms. Unknown to anyone but those in yoir community. Beautiful boy you are loved and missed♥

    Reply

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