September is coming…

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Hi my loves,

I know an update is way overdue. I promise to get to that this week. Things are BUSY. So busy. Kid busy. Book busy. Foundation busy. Life busy. SEPTEMBER IS CHILDHOOD CANCER AWARENESS MONTH BUSY. We know how many of you bleed GOLD year-round, but it’s time to step it up for September. We have some exciting things coming up. We will once again be doing our BE BOLD GO GOLD challenge and we hope you will participate as well. In case you need a little reminder of why we do what we do or you just want some facts to scream about, let me remind you…

CANCER KILLS MORE CHILDREN IN THE U.S THAN ANY OTHER DISEASE

80% OF CHILDREN HAVE METASTASIZED DISEASE AT TIME OF DIAGNOSIS

CHILDHOOD CANCER RECEIVES LESS THAN 4% OF U.S FEDERAL FUNDING

Childhood cancer research is vastly and consistently underfunded.

Childhood cancer is the leading cause of death by disease in children under the age of 19 in the U.S.

One in 285 children in the U.S. will be diagnosed with cancer by the time they are 20 years old.

Every year, an estimated 250,000+ new cases of cancer affect children under the age of 20 worldwide.

Two-thirds of childhood cancer patients will have long lasting chronic conditions from treatment.

Childhood cancer is not just one disease. It is made up of 12 major types and over 100 subtypes.

So beyond unacceptable. There are so many foundations and people working hard to change this, but the fact of the matter is children are still dying and treatments are still barbaric. Last week, The Ronan Thompson Foundation made a decision. As you know one of our favorite foundations is Solving Kids’ Cancer based out of New York City. We have collaborated with them in the past and believe in everything they are doing. They came to us with an opportunity to help change front line therapy for Neuroblastoma. We have agreed to commit 200k to this project over the next 4 years. We are so inspired and hopeful. We hope you know none of this would be possible without all of YOU and people like our friends over at TIC CUP who last week, raised 38k for us at one of their amazing golf tournaments! We are so excited to put this money to good use and we are forever thankful for the support. We have been able to fund so many incredible things in the past and we are so excited for our next venture with Solving Kids Cancer. Stay tuned for more details.

Also, my dear friend, Samya over at Firedaughter Clothing has been working her ass off to get us ready for September. We will have new shirts and hats available early this week, hopefully by Tuesday or Wednesday.

I promise more of an update later. In the meantime, get your September on!!!

“Children deserve a chance to live. They deserve to have the chance to grow up – something that so many of us take for granted.”

Maya Thompson

https://firedaughterclothing.com

https://solvingkidscancer.org

https://ticcup.com

 

 

Does Childhood Cancer Count As Bullying? Because I Think It Should.

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So, I’ve been in a little bit of a funk this week. Just off a bit. Feeling angry at the world and at the fuckwad who decided to take my son away from me. Yes, almost 7 years later and I still have times where I am pissed. I want to hide from the holidays. They are still so very hard without Ronan here, not just on me but on all of us. We will go back to Washington because that is my safe place and where we all want to be. My mom will take us all in and wrap us up in her love which includes taking some of the pressure off of me. I will watch 3 of my 4 kids open their gifts on Christmas morning while watching my step-dad wipe the corner of his eyes because Ronan is not with us. This happens every year and every year it is just at gut wrenching as the last. Holidays never get easier and anyone that says they do is full of shit. I want to hide from the world. The only thing keeping me going are my kids (Ronan included) because they are my reminder that I have to be better, stronger and continue to fight for a cause that gets so very little attention.

I watched a bullying thing go viral and every celebrity seemed to step up behind that cause and rally behind one certain child last week. Overnight this cause raised 60k and I’m like where the fuck is that money going? Is it going solve the bullying problem? I’ve “heard” the family plans to donate the money to anti-bullying causes. And yes, that’s great. But the fact still remains that we raised thousands of dollars and pulled together to create amazing memories like movie premieres and sports games and trips…while a child is diagnosed with cancer every 2 minutes… No one ever hears about them. No one seems to care. How is that fair? How have we let that be possible? Why is no one listening?

60k is a lot of money and that amount of money was raised in just one night. 60k in the childhood cancer world could literally help fund a trial that possibly could give a child another Christmas or maybe even another chance at life. This viral video made me want to punch a wall. I tossed and turned in bed and yelled and cried to Woody about the fact that nothing in the world ever seems to go viral as far as childhood cancer goes. Except when Taylor Swift stands up for it but even when she does it doesn’t start a wildfire and get every other celebrity to stand up for it the way other causes do, such as bullying. Why is this? Is it because of the way childhood cancer is “too sad to look at,” as I hear so many people say. Or because people feel like it’s too much reality and they can’t take on a cause that is just “too much reality?”

So many kids are bullied and I understand that it is a serious problem and I’m not here to take away from that. No child should be bullied. No adult should be bullied. I could write a book about all the names I have been called. All the death threats I have gotten and still to this day get. People can be fucking assholes, kids can be so cruel and until parents start doing a better job of raising their kids, bullies are going to exist. It’s our job as parents to teach our kids not to bully in the first place and to also teach them skills to stand up to these bullies. It is also our job to step in and do whatever we need to do to protect our children and any other child who is being bullied. As I said before, I am not trying to take away from this issue, but I would be a liar if I sat here and said that I wish the world of childhood cancer would get the attention it so badly needs because HELLO CHILDHOOD CANCER IS THE NUMBER ONE DISEASE KILLER OF CHILDREN!

And yes, because it killed my child and so many others that I know and yes because I am one very still pissed off mother fighting for a cause that nobody wants to take on… until they find the courage or it happens to them I guess. Sorry, that’s not good enough for me so I’ll just sit here and do whatever I can to continue this fight and right now that means finishing my book, donating all of your hard earned money to clinical trials that are saving lives and being an advocate for the rest of my fucking life because Ronan and so many other kids deserve so much better.

Speaking of other kids, I have someone I want you guys to meet and this is another one of the reasons I’ve had such a riled up week. This is my friend, Ethan. Something about him reminds me so much of Ro. He has Neuroblastoma and started out his treatment at Phoenix Children’s Hospital. I reached out when he was first diagnosed and chatted via email with his mom. I offered support but also told her I didn’t want to overstep my bounds as I am fully aware that being a mom of a newly diagnosed child, our story is a hard one to hear.

Ethan and his family ended up packing up their lives and moving Ethan to Seattle Children’s Hospital as his mom is from the Washington State area. I didn’t hear anything from his mom for about eight months, until last week. Last week she reached out and asked if I would be willing to talk to her. Of course I said yes and talk we did. For hours. And since then there has been more talking and texting and I can’t stop thinking about Ethan and their family and I feel so helpless.

I am heartbroken for multiple reasons. Ethan is doing well. He is responding to treatment but they have a long road ahead of them and he has been through so much. Both of his parents are professionals. Ethan’s father has a law degree and Sabina, his mom was a professor at Arizona State University, but because of the toll this disease takes in every way, they stand to lose everything. I keep going back to that 60k that was raised for the kid who was bullied and I am standing back watching this family fight for the life of their child while trying to figure out how to put food on the table.

There’s enough empathy to go around–we can not want kids to be bullied AND want to solve cancer for kids. But with one viral video, this kid’s life has changed. Meanwhile, kids like Ethan are going through horrific cancer treatments, missing out on being a normal kid, while his family is struggling to even pay their normal bills, let alone the cost of cancer treatment.

If kids like Ethan got half the attention of that viral video, it wouldn’t just make them feel special. It could literally save their life. That’s what people keep missing. It isn’t about likes and shares and popularity…but when it comes to childhood cancer, awareness DOES save lives. It doesn’t just make you feel good for awhile. It can create new treatments, keep families together as they travel all over the country trying to save their kid’s life, and keep a child from dying.

THAT’s why it matters. That’s why sharing posts and spreading the word and fundraising counts. That’s why I’m sitting here, looking at 3 kids playing together when it should always be 4, wondering why the world stays silent on childhood cancer.

Sometimes I wonder if people had been more outspoken about childhood cancer sooner, if I’d still have my son. What if we’d crowdfunded for the treatment that could’ve saved him?

This Christmas, I can’t buy my Ro presents. I can’t see him open presents with his brothers and sister or eat breakfast Christmas morning. A holiday card has long gone out the window for our family–because our family isn’t complete without Ronan. But here’s what I can do: I can keep screaming for families like Ethan’s. I can teach my kids bullying is wrong AND fight to save lives. I can work as hard as I can until people start listening.

So, if you’re going to share something viral on Facebook, I’m begging you: Let’s make it this. Ethan is 6 and loves Star Wars. His family is struggling. They need us: https://www.gofundme.com/littleethan

And if you don’t want to donate to his go fund me page, please flood him with whatever support you can. You can send cards, gifts or gift cards here:

22510 93rd Place West, Edmonds, WA 98020

Please share this post with everyone you can. If you live in the Seattle area, please email me if you have any connections to make this guys life a little bit easier.

mayawoody@gmail.com

You can also follow Ethan’s progress on his caring bridge page:https://www.caringbridge.org/visit/littleethan

Thank you all for still being here. Thank you for anything you can do for Ethan and his family.

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