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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Dear Empire State Building, Part 3

Ronan, before he was diagnosed.
Ronan, before he was diagnosed.

 

 

Dear Empire State Building,
My name is Payton. I am fifteen, almost sixteen. I have never been in the hospital. I do not have cancer. None of the people close to me have cancer. Still, I am a pediatric cancer advocate. I read the blog of Maya Thompson after I heard Taylor Swift’s song Ronan. This soon led to multiple children on Facebook, who I look for on my newsfeed everyday. One of these children is Lilly Bumpus. She’s a beautiful toddler, in remission. She suffers from side effects of the 75% adult strength chemo she was given. Seizures and tics, with no explanation. She has night terrors, about people coming in and waking her up in the middle of the night to check her vital signs.

I’m writing this from a hospital bed, as my appendix was just removed. So I can understand how the nighttime checks could scare someone so young. What just happened to me is nothing. Nothing, compared to what so many children go through. They live with IV needles and ports and constant pain. I don’t know if you’ve ever had to leave a needle in your vein for a long time, but it sucks. These children go through surgery and chemo, radiation and clinical trials. While we, as people who understand how horrible this disease is, fight for awareness, these kids, teenagers, and babies fight for their lives. In the US, 7 of them lose everyday. 46 are signed up to fight. Families are forced into this battle, for their kids. I cannot even imagine life without my little sister. Some of those siblings, whose brothers and sisters you refuse to represent, know what that life is like.

Maya Thompson’s older sons learned that at 8 years old. When his 1 year old sister got a black eye in a baby tumble, one of these boys asked his mom if baby Poppy was going to die. An 11 year old. Because he watched as cancer took his 3 year old brother. No child should ever have to fight cancer, no parent should ever have to lose a child to cancer, no sibling should ever have to watch this disease take their brother or sister. You don’t need to know someone closely. You just have to look around and realize how wrong these kids’ situation is. You just have to want to help them. To tell everyone, “pediatric cancer is wrongly underfunded, and we need awareness, so we can save these kids.”

Some people are pulled into this fight for their loved ones,and to make sure it never happens to someone else’s, but I fight for all of them. For Ronan and Lilly, Paxton and Mateo, Ellie and Alyna. I want you to light up gold, so in the future, Babies like Alyna, toddlers like Ro, and teens like Talia won’t die. So Lilly and Kaitlin and so many others can stay in remission. And Mateo and Ellie and every other kid facing cancer can win. Childhood cance is wrong. You don’t have to experience that to know it’s true.

 

Please light up gold,
Payton

It will always be Maya and Woody or Woody and Maya

My feelings have been getting hurt a lot over things lately. Things that normally wouldn’t bother me, but they do now. I’ve been struggling with all of these new feelings and have felt guilty  thinking I was being selfish and mean for having them. I now know that these feelings are normal because of what we are going through. I found a guideline today while reading the online handbook. It made me feel as if maybe I am not losing my mind. If anything, I am more in tune with what is the appropriate way to act when handling our situation. Most people do it with such grace and ease…. some not so much. I wish I was more “guy like” and could just brush certain things off. I’m not that way at all. I sit and think about things too much and it is a waste of time and energy. I’ve got to let some things go and spend time on things that are important to me now. I can’t be dealing with other B.S. That’s all I’m saying about that because as I said before, it’s not worth my time and energy. I know what is true and what is not.

Today, I got a call from one of our nurses, “A.” Yes, that is really what she is called. Her real name is something else, but she has been called just “A,” ever since she was about 4 years old. She called to tell me they have set up Ronan’s scans. His first one will be this Thursday and his second one will be next Thursday. My stomach dropped just hearing that they are set up. I know I have been waiting for this but I feel like the not knowing part is almost easier at this point. It’s like I am in a protective bubble and when those scan results come back, it’s going to pop. We are hoping that the results will show that the shrinkage of his tumor  is about 20-25%. We are praying and praying hard. What we are doing has to be working. Ronan will have to be put under with anesthesia both days. I hate that part but I know Dr. Maze will take good care of my little seal. He won’t let anything happen to him so that makes me worry a little less.

Tonight, Woody and I were able to get out for a few hours. We went to meet our friends, Kenny and Stacy Frakes for dinner. As we were walking to AZ88, holding hands… I closed my eyes for just a second, took a deep breath, and pretended that we were on one of our normal weekly dates that we used to have and that none of this was happening to us. It was just Maya and Woody and nothing else mattered or existed. For those 10 seconds, I felt such bliss and happiness. I felt connected with my husband and it felt really good. We met our friends, who we have not been out with on a double date with in a good 5 years. Which is so sad. Another one of those times in your life where you get too busy and always say you are going to meet up and never do. What a waste of years without good company. Kenny and Stacy are the kind of friends where 5 years can go by without seeing them and then 5 years later you meet up and pick right back up where you left off. Woody and I had the best time with them tonight. We got to act like a couple again and enjoy being out with our friends. We talked about everything from Ronan to Bob Dylan. Tonight was an absolute joy in every way. I also love that Kenny and Stacy are not the kind of friends who run away and disappear after something like this happens. If anything, it made them want to see us more because they truly care and love us. We knew them before were married, and have always held them close to our hearts. I am so glad Ken got in touch with Woody and we set something up. It was so healthy for us to do something like that. I actually saw Woody enjoying himself tonight. I have not seen that side of him in 7 weeks. It was beautiful, refreshing, and made me all warm and fuzzy inside. We need to take time to do things like that more often. I was not ready before… but I feel like I am now. Woody and I are the foundation of our family. We have to love, cherish, and take time for each other. We are going to try harder to work on that. This won’t break us or our family.

Busy little bee

My day started at 5 a.m. this morning. That is usually not a big deal but seeing how I didn’t get to sleep until 3 a.m…. I am surprised I am still awake right now. 2 hours of sleep is hard to get by on. Ronan had an eye check-up at 7:30 a.m. which meant we had to leave the house at 6:45 to allow enough time to get to Dr. Cassidy’s office. He is far away from us and I wanted to be a little early so we could sneak into the office without any other patients there. Mission accomplished. Ronan was not happy about getting up so early, but I talked him into it. We met with Dr. Cassidy and he did Ronan’s eye exam to see how his  eye was recovering after his surgery on his left orbit. He was afraid that it might be weaker than his right eye and he had talked about patching his right eye to give his left eye the strength it needed to catch up. After his exam he decided that he was very pleased with what he was seeing, and so far thinks that Ronan has no damage to his eye! That is great news for our little guy! One less thing to have to deal with! We left the eye appointment, headed to pick up my mom, and then went off to the clinic for our Monday exam. They did his blood work and all of his counts looked really good. His ANC counts(his immune system levels) were in the 6,000’s so we get to take a little break from his Neupogen shots. Woody was so happy about that. Giving Ronan those shots has not gotten any easier on us or him. He HATES them and we hate giving him them. Our plan is to start his stem cell harvest on Monday, assuming his counts are still climbing. We will pray that his immune system keeps going though the roof! After we left the clinic we came home and had lunch.

My friend Jen came over to help me work on a few things for the tee shirts and for Ronan’s Foundation. I am so excited about all the things that we have in store for The Ronan Thompson Foundation. This is a way for us to give back to something greater than Ronan. My hopes are to raise so much money that we can donate it to Neuroblastoma research for a cure, add a wing to Phoenix Children’s Hospital, and hopefully help many family’s who are going through something like this, but may not have the support system or strength that we do. I want to give to people in times of need, a glimmer of hope and strength. When Ronan beats this ugly disease, our fundraisers will continue for the rest of our lives. I was just telling my mom tonight that I can’t wait for the day that Ronan is better, and we have organized a run in his honor. Every year, we do the Pat Tillman run here. It is a tradition of ours and I can’t wait for the day that we have the “Ronan’s Run.” His Foundation is something that I will work on for the rest of my life. It is now a full time job and I am so passionate about all of it. As I said before, this is my calling in life and it is what I was meant to do. And I do everything 110% so I know it is going to make huge difference in the world.

I talked to Charisma today for quite a while. It was so moving to hear her voice and listen to her talk about her experience with the Rally for a Cure. She had the most beautiful things to say about the kids who were there, about how it made her feel, how Ronan is going to be fine, and how she is going to work to make a difference. She said she always had it in the back of her mind to use her celebrity status for charity purposes…. but she never really had something she was super passionate about; until now. There was a reason that she didn’t just pick a charity… it is because Ronan was going to need her all along. I was going to need her all along. I think that is very telling of the kind of person she is. Any celebrity can put their  name on something… it makes them look good. Charisma is the kind of person who does good things when nobody is looking.

Having my mom here has allowed me to get caught up on a bunch of things today. I have not stopped until I sat down to write this blog tonight. Woody and I were supposed to go on a date…but we are both so tired we just decided to stay in. We have plans to go to dinner tomorrow night with some friends we haven’t seen in a very long time. I am really looking forward to that. Goodnight, sweet dreams, and blessings to you all!

I also wanted to say a special thank you to everyone who came out in my hometown to support Ronan. I wish I could give you all a big hug for believing in my child. Next year I know my little guy is going to be the one handing out the trophy to someone else! A very special thanks to Kim Walters for working so hard on everything and making Ronan the poster child for hope! I am so lucky to have been raised in such a loving community<3

To everyone who would like a Rockstar Ronan shirt…

Please email me at:

rockstarronan@gmail.com

First come, first serve as they are going fast. We will be printing more soon.

RockStarRonan Tee’s

Raglan (Baseball) Tee’s – Unisex Youth sizes: medium & large Adult sizes: small – xxl
White Ladies Tee Adult sizes: small – xl

Thanks for your support!!

The face of an angel

I’m not sure how much I’ll be able to write tonight. My husband says he does not have a wife anymore… he has a blogger. He needs me to spend some time with him. I will just say that today we had a great day. My mom is here and I know that I made the right decision on making her wait to come out and see us. She is stronger now and Ronan is stronger as well. Having her here is the perfect timing. She gets to see her sweet baby grandchild while he is feeling great. That is exactly what I wanted. I took Ronan out for his first time in 7 weeks. We went to Yogurtland and sat outside with Liam, Quinn, my mom, Gay, Chet, and Cal (Liam and Quinn’s buddies) Ronan was practically glowing. He was so happy to be out and with his brothers and friends. We sat outside on this beautiful AZ night and the boys played and giggled. I’m going to talk to the doctors tomorrow about Ronan being around other kids. Taking his childhood away from him is just not fair. He needs to be around other kids. Of course I had out the hand sanitizer every 5 minutes, but that’s o.k. At least he was out:) It was exactly what he needed.

My friend, Charisma, got back from Toronto today. She sent me a really beautiful email about her experience and I wanted to share. Instead of blogging a bunch tonight, I thought I would share a couple of things. Here is a little bit of what Charisma experienced.

Maya,
I thought this trip to fundraise would be so heart breaking and sad- which was ok, I was ready for it. But you’re never ready to see kids fight so hard for their right to live. However, they inspired me so much!

A Dr. spoke at the gala dinner last night. He’s a Doctor from “Sickkids Hospital” in Toronto.
He said fund-raising equals life. (- whoa! ) He also said, “There is a cure.” There are new drugs out there to develop that can trick cancer cells from multiplying by getting the cancer cell to kill itself. 5 of his former patients are either; in residency, the lab or med school. By the time these kids finish school, there will be a cure. “This time” he said, ” it’s personal”
The beauty of the story is, kids weren’t surviving before. In the 80’s (?)there was a 5 percent survival rate for pediatric cancer patients. Now its 80 percent due to funding and awareness. There is HOPE! A little girl shared her story her survival of cancer. She said when my grandpa was in med school and if I had been diagnosed then, I would have died. But now, I live to see another day. ( Her grandpa discovered her illness) uh! So brave! So clear , so inspiring. And she’s not even 13 yet.

I know Ronan will make it! I just am sure of it. He will win and he will have changed lives by just being him. A fighter! A spunky little man with just the right amount of angel to stare cancer down!
I talk about Ronan to everyone I can. I talk about his bright eyes. I was on the plane home with Robin Antin from the Pussy Cat Dolls I told her to tweet about you and send her peeps to your blog. Hopefully she’ll do it. Other pediatric cancer patients are lucky a child with such a face has cancer. Unfortunately or fortunately, he will motivate more people to do more and give more because of his good looks. -And that’s ok. Its more meaningful to be the poster child for pediatric Cancer than the Gap. Yes? ( Not that you asked for that, Maya. No one wants their kid to be ill. – I hope you can see the silver lining in what I’m trying to articulate, a bit poorly.)
None the less, I read your blog every day, every post. I want to buy a Tee! A few! Do you have any left?
That’s all. Love to you!
Charisma

Charisma is inspired, and moved, and is getting her wake up call in life. She now knows helping with childhood cancer awareness is something that she is going to be part of, for the rest of her life. She knows this because she looks at her beautiful little boy, Donovan, and knows it can happen to anyone. There needs to be more funding, more hope, and a cure. Charisma loves Ronan and loves us and is part of our army of angels. I know she hugs Donovan a little more tightly at night and I am so glad I can give her that gift. Even through all of my pain, it is worth it to me.

My last little thought is a comment on my blog that brought me to tears tonight. It’s from somebody that I don’t even know, but it really moved me. I would like to share that as well. Here it is below:

I have always been a believer that everything happens for a reason-no matter how small and seemingly insignificant-and that eventually the meanings for your actions become clear. That being said, the other day while in line at the grocery store, I picked up a copy of Us Weekly. While skimming I read that Tori Spelling had set up a Twitter account for her son and ended up adding him, Tori and then Denise Richards on Twitter.(I promise this is all relevant.) I do not read “Trashmags” and I log on to Twitter every once in a blue moon, so I really do believe this is special. Moments after I added Demise she tweeted something about 20k reason why and a link. I was intrigued and opened to find a fan page to get Oprah to do a show on Childhood Cancer. I began reading posts and looking at pictures of children who had lot their fight and whose parents simply wanted them to be “seen.” I fell asleep crying and in the rush of the past two days, completely forgot about it…

Today I went looking for my mothers blog, and happened onto the wrong one. It was one about mothers being better mothers before they were mothers. I skimmed and scrolled down to the comments where I saw a comment that said, “If you want to learn a thing or two about being a mother, read this blog.” I clicked through to find a beautiful little boy staring back at me-your army boy Ronan. I sat for about 2 hours and read this blog from start to today. I cried happy tears and sad tears and I laughed and sighed and felt your pain. In 2 hours I felt like I knew you, Ronan, Woody, Quinn, Liam, Mimi Kay, Lindsey, Winston, everyone. I was transferred into your heartbreaking and miraculous world. I would just like you to know that I am here. Both with you and for you and don’t hesitate to email if you just need to vent. I live on the East Coast, in CT. But I hope someday I will be able to meet you and your beautiful little fighter.

Love, hugs and prayers,
Cassidy

So, Cassidy… I just wanted to say thank you for this. Your email really touched me. It gives me strength to see that good things are coming from this heartbreaking journey we are on. It brings me joy to know that Ronan’s story is making a difference in people’s lives. He is the most special little boy and is going to win this fight for all of the other kids out there. He is strong enough to take this on and give others hope in their darkest hours. I, as his mother am his biggest advocate, and he inspires me everyday. He inspires me to work harder, be kinder, love stronger, and never give up. It is through his eyes that I see our battle being won. He is worth every ounce of blood, sweat and tears that comes from this. I will never give up hope and I will never stop fighting for all the children that also have to endure this kind of pain. If anything, I just want the people reading our journey to be the best parents they can possibly be to their kids. A child is the most precious thing on earth and if you are lucky enough to have kids who are healthy… please don’t ever take that for granted. You have no idea how lucky you are.

That is all tonight. My husband is giving me the death stare 😉 Goodnight and sweet dreams to you all!!!