Are you ready to run like a ROckstar?! P.F. Chang’s Phoenix registration is open!

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Now that Poppy is here, I’m ready to get my run on. This question is, will it be the full or the half? Will I train or not train? Still deciding. Hope so many of you will join me!!

At the link above you can register online OR print out the form and mail it. The most important detail about registering is that once you do, you must set up your fundraising page through our Fundly page which is linked from the registration page.

Please note: certain mobile devices don’t show the “join this event” and “register as a fundraiser” buttons on the Fundly site. If you don’t see it, please go to the Fundly link from a non-mobile device. Sorry for any inconvenience!Email with any other questions or issues!
RTFSocialMedia@gmail.com

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!

Spirit Hoods are back in stock!

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Spicy Monkey Spirit Hoods are back in stock as of 3pm pacific time. The first run sold out in barely 90 minutes, so if you want one…don’t wait! Even if you don’t have kids, or want to wear one yourself, DONATE one or 10 to a children’s hospital. Bald little babes everywhere, should have one of these.
http://theden.spirithoods.com/ronanthompson/

We have to thank Alexander and Shayoon and everyone else at Spirit Hoods for this incredible experience! Seeing how enthusiastic and supportive everyone has been about the spicy monkey hood reminds us of how Ronan would have been so beyond excited to see it. Thank you all so, so much. This is honestly a dream come true.

Poppy didn’t die and the SpiritHoods already SOLD OUT!!!!

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Ronan. This is seriously my life. Last night, I was cooking dinner and I had Poppy in the sink. Let me back up a bit. Every morning and every night, when Poppy eats her solid food, I put her naked in her Bumbo chair in the sink. She gets so messy, so I feed her in there as it makes perfect sense because she is SO messy and I can just wash her off afterwords. (Hi, that’s me OCD clean freak) She likes to sit in her little chair, play with her rattles, and suck on this mesh thing that I put avocados or bananas in. Last night, while I was cooking dinner, Poppy was playing away and sucking on her little mesh holder with her mashed up avocado in it. I turned around for about 30 seconds to tend to my tacos and when I turned back around, Poppy was slumped over in her little Bumbo seat with her head down. I dropped my spatula, screamed her name, and ran over and ripped her out of her chair. The water wasn’t on or anything, but my mind instantly went to, “She’s dead, she’s dead, she’s dead.” As soon as I ripped her out of that chair, she started to cry because I scared her so badly. She wasn’t dead. The poor little babe had fallen asleep, probably because she was so worn out from our very busy day of putting her in a pumpkin and taking pictures.

I felt so bad for scaring her and making her cry because I am a raging lunatic. I felt so badly, yet I know this is the way I will always be. My mind will always go to the worst place possible. I said to my friend, Katie today as we were hiking, “It takes everything I have not to take all 3 of my kids down to PCH to have them scanned from head to toe.” And I’m not kidding. It’s a fight I have with myself everyday in my head. Just because this has happened to us once, does not mean it cannot happen again. That’s not the way life works. I am fully aware of that. I live in a world where all of my kids are going to die and everything they touch or eat, is going to give them cancer. I’m so freaked out by anything that Poppy puts in her mouth, food wise. It was pretty much only organic for you and your brothers. I mean, I even made all of your baby food from scratch. Now, I’m positivly a freak about it with Poppy. And if you think I have issues there, you should see the way I pretty much refuse to leave her with anyone. I mean, I even worry when I leave her with your Daddy for a bit. The separation anxiety I am having with her might become a problem. I can’t leave her and when I do, I’m a ball of nerves. This is my life and as of now,  this is just the way it is. Maybe it will change or maybe it won’t. I don’t know how you ever go back to anything ever feeling o.k. and safe again after you’ve watched one of your children, die from cancer.

So, I started this earlier today… before the amazingness of the SpiritHoods Spicy Monkey SELLING OUT happened! Are you guys serious?! I mean, I expected them to sell, but not that fast! You all are amazing. Don’t worry, our friends at SpiritHoods will be making more. I don’t think anybody expected them to sell out so fast. THANK YOU ALL SO MUCH! This is beyond rad. Tonight, I can go to sleep feeling so proud because this is proof that my little guy is changing the world with the help of all of you. I really, really needed this today, so thank you all again for being so supportive. And another HUGE thank you to my brother from another mother, Alexander from SpiritHoods, who shot this video and has been working along my side through this whole thing. He is going to change this world with me and help save some kids’ lives, just you all wait and see. This is just a little taste as of what is to come.

I’m signing off for tonight. More book writing to do. I miss you. I love you. I hope you are safe, Ronan. I love you to the moon and back

xoxo

I love you all, too. Thank you for helping in this fight and for being better people because of my son.

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My letter was nice and it didn’t have to be. The right thing, SHOULD be done. Who gets in the way of kids fighting cancer? That is wrong on so many levels.

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http://www.mlive.com/news/grand-rapids/index.ssf/2013/10/parents_pressure_van_andel_ins.html

Please feel free to leave your comments below on this article, as others have. I don’t know how the people involved at Van Andel, sleep at night. THEY SHOULD ALL BE ASHAMED OF THEMSELVES AND SHOULD TAKE A LONG HARD LOOK IN THE MIRROR AT THE PEOPLE THEY HAVE BECOME. That’s my 2 cents anyway.

She may not be saying why she left, but she was unhappy and not wanted there. They have very few women faculty. It is pitiful. They dumped Dr. Khoo who is now at GVSU right after Sue Thoms article on her. They also lost Dr. Webb, Dr. Neff. I am sure more defections are to come.

Brundin will be turning this into a European smorgasbord soon. After his euro-locusts have filled their bellies by gorging on easy VAI research cash, they will go back laughing to their still secure jobs in Sweden and elswehere, just like Jeff Trent did.

How many times does David Van Andel have to act like Charlie Brown and run at that football Lucy is holding before he figures out its gonna get yanked and he will fall on his a$$? Get David Van Andel out from being CEO and get a PROFESSIONAL in there. You know someone who knows how to run a science institute? Not a charlatan.

This is how VAI operates. They are hemorrhaging scientists. Their model is broken. New leadership is desperately needed with focused collaborators who have a track record of getting things done. David Van Andel (a non scientist running a scientific research group), Collins, and Brundin are pushing people out.
Nice 3,000 + word article. Very interesting.

Money does strange things to people.

It distressing to read a story like this. To think VAI would stoop to such tricks and omit important information or present that information in a misleading way is shameful to the organization. These parents have made their wishes perfectly clear. That VAI would use it’s size, power and “reputation” to stall the transfer of these donated funds puts the Institute in a very poor light.. To think they would use their high priced lawyers against parents caring for a desperately ill child, just because they can? I feel embarrassed and quite certain VAI is no more confused about the intent for the use of these funds (their claim for withholding the transfer of) than am I. A very un-classy move on the part of the VAI.
As someone that used to be involved with the Van Andel Institute, I can honestly say that ever since Love Collins joined the organization, it has gone downhill. The VAI has lost touch with it’s mission and Love Collins apparently has no concern with right or wrong.
collins is a hired gun for fundraising…..nothing more
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It’s almost Halloween and I would still let you be anything if you were still here

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Ronan. Last week, I got to see the magic that Alexander has put together with the SpiritHoods video. He’s been working like mad on it, and keeping me so very in the loop. When the link finally came through the short version, the one that will air on their website, I took a deep breath as I sat down to watch it. I put Poppy on my lap and she watched with me. The tears were almost immediate. It is 5 minutes of absolute perfection, absolute heartbreak, absolute beauty, and absolute truth. I am so proud and so thankful for people like Alexander who have come into our life. The moment I set eyes on him, I knew he was the perfect person for the job of telling our story in a documentary type of way. I felt so comfortable with him and an immediate connection. I wasn’t wrong. Not only does Alexander feel like a long lost brother to me, it turns out he is insanely talented and I could not be more proud of what it is we have done together. Oh, and he also happens to have a totally kick ass wife who I am equally as in love with. I cannot wait for you all to see this, and then to watch as you all buy up the SpiritHoods like crazy. They turned out so adorable and only Ronan being here to rock it, would make it even better than it already is. I AM SO PROUD.

Last week was an insane week and with foundation stuff pretty much happening around the clock, I knew I needed a small break. Or, more like your daddy knew and pretty much told Dr. Jo that I was coming up to Sedona on Sunday to spend some time with her and do a little eco therapy. I drove up with your Poppy sister in tow. We arrived late on Saturday night and woke up in the morning, ready for to go on a hike through the beauty of Sedona. On our hike, we got into my much needed therapy. We talked about where I am in my grief process and I told her all about my hard week last week where I spent many days, THINKING about doing things like driving off a cliff. I still have those thoughts, although they happen less often. Our little hike turned into a 5 hour massive hike with your Poppy sister on the front of me. We only stopped one time to feed her and let her stretch out. The rest of the time the only sounds we heard from her were the sounds of her coos and giggles. That baby, I tell ya. She is amazingly special. I’ve never known a baby that would go on a 5 hours hike and be happy as a clam the entire time. She is such a sweet, sweet girl. Most of the hike, we talked about this whole grief thing. I told her how I constantly feel like a bunny rabbit, digging a never ending hole, and trying to fill the hole with “stuff” when I know the hole is never going to be filled again. It’s that taste of happiness that I had with you that I so badly want again, but no matter how beautiful this life is, I’ll never get back the happiness that is missing; that being you. I have learned to love my grief, for even as painful as it is, it keeps me connected to you. So, when I am not spending enough time nurturing and sitting quietly with my grief, that is when I tend to get into a bit of trouble, emotionally speaking. Some people want to run away from their grief, but there is no out running this. Your grief will always catch up to you and never gets tired of chasing you. I don’t want to outrun this, but the fact of the matter is, it does become heavy to carry and sometimes hard to manage. That’s when I have to check in with myself and do things like a 5 hour hike with Dr. JoRo. Things like that, help me with all of this.

I have so much going on around here that I don’t even know which way is up anymore. After dropping your brothers off at school in the mornings, I have been making myself take your Poppy sister up our mountain. I know that in order to be productive during my day, I do need to take a little Mama/Ronan time out. This morning I had Poppy on my front and your backpack on my back like I do every time I hike. You know that little backpack from Pottery Barn Kids with your name embroidered on the back of it. As I was coming down, a man passed me. He said, “Is that your son’s name, Ronan?” I was caught a little off guard and but managed to nod my head and give him a smile. He said, “That’s my son’s name, too! He’s 7.” The only thing I could say was, “It’s a great name.” What I really wanted to say is, “You are so lucky to have a 7-year-old Ronan.” I hiked the rest of the way down, feeling sad and trying to imagine what it must be like to have a 7-year-old Ronan, too. That pretty much threw me off for the rest of the day, but somehow I still managed to be productive around here.

Halloween is approaching. Is it really another Halloween without you? I would still let you be anything, if you were still here. Your brothers are all excited and I took them “Booing” the other night with some of their friends. It hurt to be doing such fun/funny things without you. Poppy seems pretty excited about Halloween, too. Today, she asked me to take a pumpkin, carve out the top and some slots for her legs so I could stick her in the pumpkin and take a picture. O.k… so maybe she  didn’t ask me, but that’s totally what I did to her. She loved it for about 30 seconds, then when she realized she was naked in a pumpkin, she got pretty mad at me. I took her out once she started to protest, but I did manage to get some great pictures out of the Poppy the Pumpkin photo session. It was kind of the cutest thing ever.

Alright little man. I have to sign off for the night. Time for my late night book writing session to begin. I miss you. I love you. I hope you are safe.

xoxo

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