runDisney recap

If you follow me on social media, you know that I recently ran a thing called the Dumbo Double Dare at Disneyland in California. It is comprised of a 10k on Saturday followed by a half marathon on Sunday. When I mentioned this to my friend, Mike, who is an experienced runner, he said, “That’s not really advised.” LOL… that’s kind of the point. For the record, he was also one of my biggest donors! Maybe because he understood how crazy this was! It’s a challenge that breaks the “norm”, well, unless you are a runDisney runner. And then the challenge is something that might happen 4-5 times for you this year!

A good portion of Team Fired Up’s crew for Disneyland weekend.

We have been fundraising using the runDisney events for several years now. It took us a while, but we have built an amazing community with these runners. It’s a very long weekend – did I mention we have to be onsite around 3:30am each day? But it is filled with the kind of triumphs you only see at the end of a long, hard path.

I’m always amazed at our runners, especially our challenge runners, because of what they put themselves through. MANY people (thousands, actually) do this just for “fun”, but a small percentage of them do it for others. Those are the charity runners. They run for Dragon Master Initiative, Give Kids the World, American Cancer Society, and others, and they do it to make those miles – both in training and on the course – count for something bigger than themselves. Running takes a lot of time, so this is a way for them to really put a purpose behind those hours.

I have never been a big runner, but I started training in 2023 to take part in the Dumbo Double Dare. I did it because I wanted to do something big to honor what would be David’s 30th birthday, but I also did it because I wanted to show our runners that I wanted to be one of them. We are a team. And even though my job is normally to support them through their race, just this once, I wanted to really commit to running alongside them. That meant that Richard had to be the race crew chief, and he really did an outstanding job! I wouldn’t have felt comfortable missing out on those finish line moments if he hadn’t stepped up to take charge of medals for me. One of our runners, Amber, stepped in to help him, and of course, Sarah was there on the day she wasn’t running.

I didn’t dream that as part of that commitment, so many others would stand with me. From the moment of registration, which I wouldn’t have even gotten without Sarah, I had so many people sending me good vibes, training tips, and donations. My friend, Jena, immediately signed up to run the half to show her support. She was afraid she couldn’t do it, but she crushed it! My friend AnaLiza had already been bitten by the runDisney bug, and she made this one of her races for the year. Can you say Coast to Coast?!? Ana’s training has been on point!

My daughter, Austin, checked in regularly and told me she was proud of me. (You read that correctly! How often do you get a chance to do something your kids are proud of?!?) My other friends, who were just going to volunteer, saw we had some open bibs and jumped in to do the half as well! Not everyone finished, but everyone made an effort for the team and we will see many of them back and future races. Garret, Shawna, Bill, Rebecca, and Terri had all cheered, but then also ran and all laid it on the line for these kiddos.

I also have to give a shoutout to Terri and Maria for making amazing signs for the volunteers to cheer with. It was so easy to spot Rich and Denise out on the course with those custom signs! What amazing folks they are for coming to Anaheim just to cheer on the team! Adam and Ana Liza both spoke at our team dinner which took a lot of mental pressure off of me. Truly a gift!

The race also brought me closer to our runners in ways I couldn’t imagine. Leah made me a custom running plan, which mostly served to show me how far behind I was, haha! It was a very valuable tool, though, and I’m sure I would have slacked off a lot more if I hadn’t had that. Monica, Jocelyn, Jerry, Sara, Jon, Erin, Richard, Lisa, Patti, Deb and many others gave me encouragement from their very experienced viewpoints. Sara’s advice may have also included how to pose for pics, but I still haven’t mastered that one!

Overall, though, the year of training gave me an outlet to really focus on my mental capabilities. The self-talk we let run in our heads can be the thing that pushes you forward or holds you back. I really learned to focus on how to overcome obstacles, set small goals (thank you, Jeff Galloway!), and most importantly, run your own race! That is, unless you are Melinda and Stephen, who chose to give up “their” race and run mine with me. Spending 3 1/2+ running with someone just to make sure they hit their goal is a special kind of sacrifice. They were amazing! I’m sure I have not done justice to the level of support from my community. Please just know that this was a very special year filled with amazing friends who stepped up in countless ways to make sure I could achieve this goal.

Stephen and Melinda, wearing their Aloha gear to honor David, with me at the race starting line.

From being a person who didn’t run at all, to being a person who ran 30k in a weekend, I want to encourage you to set big goals for yourself. It’s really great mental training, and the physical aspects aren’t too shabby either!

Also, a few thoughts on running with a charity:

– Find a charity that you are passionate about. It will really bring more value to the experience.

– Commit to your fundraising goal as well as your running goal. The charities depend on these funds to carry out their programs, and they have hard costs associated with every spot on their team. (My goal was quite a bit over what the required goal was because I want to get to $30,000 for David’s 30th. You can still donate here for a few more days.)

– Sign up early and meet your other runners. It really does make the experience more fun when you know some folks running for the same cause. If you want to run with us, we have a few spots open for the Springtime Surprise race in April, or if you want more time to plan, fill out our request form for the 2024-25 season here.

If you are thinking about running, please let me know! I’d love to connect with you and help you figure out a good way to get started. And if you are one of our team members reading this, thank you, thank you, for being our people. Love you all!

David’s birthday weekend

Runners & Volunteers at the Team Fired Up Party

There is a song that I’ve always liked, in fact, I’m sure I’ve probably written a post or two about it before. It’s called “Find Out Who Your Friends Are”, and I always feel the most blessed when I listen to it because it reminds me that I have both friends and family that fit the description. If you aren’t familiar, the chorus goes like this:

“You’ll find out who your friends are

Somebody’s gonna drop everything

Run out and crank up their car

Hit the gas, get there fast

Never stop to think “What’s in it for me?”

Or “It’s way too far”

They just show on up

With their big old heart

You’ll find out who you’re friends are”

Certainly not all of our friends or family could be with us this weekend, but the ones who have “shown up” have touched my heart more than I could have ever expected. They knew that this weekend was the culmination of many things for me. A year of training for a physical challenge, yes, but also a pretty significant milestone for David and for me as a mom. He was born 30 years ago today, making me a mom and starting me down a path I could never have imagined. I miss him so much. He left a gap that no one will ever really fill. But he also left a spirit and a message that continues to drive me forward each day. 

David was many things to me, and so many of those things were reflected in our friends this weekend. I thought the perfect tribute to him and them would be to share how I got to “see” David in them this weekend. 

Richard reflects David’s sense of caring for others by making sure we had a place where everyone could gather and be relaxed together this weekend. 

Bill, Rebecca, Garret, Shawna, Ana Liza and Terry all traveled from other states to show support for us and just be together. David really valued his time with his friends above most things, so this was a special gift to me. 

Terri, Mike, and Maria brought humor and food into the mix. David loved to make people laugh, and he was definitely all about making food for others. 

Rich and Denise brought more humor and support for those fundraising this weekend. Supporting research was an important cause for David.

Several of these friends ended up out on the race course as participants, and got to understand a little better why these events are so special, but Jena spent the same year training as I did. She competed her first half marathon, and I’m so proud of her. She did it for all the kids, which David would have truly loved. 

Adam came and spoke to the runners and volunteers because he knew my brain was too tired to put together the right words. David was never at a loss for words, and Adam’s improvisation in his talk reminded me of that. 

Amber came out and ran one day and volunteered the next two, which were all helpful things, but the thing that really moved me is the connection she has with her sweet son. And his little toddler hugs were so similar to David’s hugs. You can’t buy that stuff! 

Jackson ran his heart out and took first place in the 10k! I won’t pretend that David was anywhere near that level of athlete, but the kindness he displayed toward his fellow athletes is definitely reminiscent of David. 

Melinda and Stephen decided that they would see me through the most difficult day of running, and that is what they did. It wasn’t easy, but it was so much better because they were there keeping me occupied. Stephen even made me a special medal to represent the 30k I ran in David’s memory!

Austin ran with me last weekend for my last big “training” run, which turned out to be a race at Disneyworld. She couldn’t make it out here with us for the weekend, but she checked in often, offering her encouragement from before the races. 

Marilyn and Kevin offered us a chance to relive some Disney memories and make some new ones to treasure.

So many friends sent texts and donations to support me in the race and to honor David’s memory. So many runners shared his story and the story of all the other kids who have dealt with brain cancer. I’m humbled and touched and feel so loved. I thank each and every one of you. I know David would be unbelievably happy to know that he had inspired so much kindness. 

I achieved my racing goal of 30k ran in memory of David. I’m not at the $30,000 mark for the fundraising part yet, but I know David wouldn’t give up on that, so I’m not either. The link is still open for anyone that would like to help us achieve that milestone in his honor.  You can donate here: https://secure.qgiv.com/event/firedupdisneyland2024/account/1431630/

Thank you all for your reminders of love this weekend. 

Who Are You Really Cheating?

For years, I have followed a really great business coach named Laura Posey. I read an email from her today, that really made me think. (She’s good at that.) I don’t think paraphrasing her would do it justice, and it was a short message, so I’m including the whole thing here:

Many years ago, when my knees still liked me, I took part in a daily SEAL Team Physical Training workout run by a former navy SEAL. It was a great group of people, a great workout, and I learned a ton from the instructor. 

One of my favorite sayings from him was, “If you will cheat yourself, who won’t you cheat?”

It got me thinking about how I had cheated myself in the past by not sticking to my goals. It was so easy to find an excuse to skip a workout, not practice my violin, or not get all of my work done in a day.  I realized that if I had made a promise to another person to do those things, I would have done them. But somehow, it was easy to break a promise to myself. The real aha moment came when I understood that I was cheating those around me when I didn’t stick to my self-promises. 

If I didn’t take care of my health, I was letting my family down. They needed me to be able to care for them, not take care of me.

If I didn’t take care of my finances, I would end up being a burden to someone else.

Even not practicing my violin forced my instructor to alter her lesson plans because I was behind where I was supposed to be. 

My challenge for you this week is to keep your promises to yourself. Whatever you decide to do, do it. Keep your promises to yourself as if they were to others you love. Because, in the end, they are. 

Laura Posey

I think this is a lesson we can all use a refresher on. Our actions, our goals, may seem personal, but in the end, they effect a lot of other people. It may be people we know and care about, or it may be the world at large.

I sometimes wonder if the work I do really makes a difference, but then I have a chance to interact with others who are doing the same kind of work. They never fail to build up my faith in our efforts. The goals that we set for Dragon Master matter to a lot of other people. In obvious ways, they matter to patients, their families and researchers, but it also matters to folks who work in government and need to point to what the “public” want and expect from our government’s services. It matters to businesses who sponsor us and want to see what we can achieve by pushing this science and paradigm shift forward. It matters to other nonprofits who may not have as large of a voice and need us to help impact change.

And like they are depending on us, we are depending on you. For each of you who volunteer to make a project happen, who set up a Facebook fundraiser, who run with us and set big goals to hit… each of those steps have a far greater impact than any of us can know. That next milestone may be the one that starts saving lives, and it all comes from the little daily goals we all set for ourselves.

So thank you, Laura, for sharing some insight, and thank you to all our volunteers and fundraisers who set your goals and see them through. You are making an impact!

Learn more about Laura’s work here

Show Up

Show Up – There is a lot behind that simple phrase. I’ve been thinking about it today for a few reasons. One is because I recently had a chance to send birthday wishes to a wise friend who impressed upon me the importance of “showing up” at a funeral. I don’t think anyone likes going to a funeral, but it means so much to the family when you “show up”.

Sometimes it is easy to identify when you need to show up – an invitation arrives, or there is an announcement int he paper or on Facebook. But most of the time, knowing when and how to show up is an elusive target to hit.

David was the type of kid to show up for others. A smile in the hallway, stopping to greet school staff that was largely ignored, sharing a hug with someone who looked like they needed it. He wasn’t perfect, but he practically was.

We were graced by many people who showed up during David’s illness. Most especially, his good friends, who could have turned away to their teenage interests, but instead, they showed up in tiny, meaningful ways. They just kept treating him normally, until he was hospitalized and they couldn’t. And when that happened, they found rides to the hospital that was an hour away. They showed up.

Life moves on, with or without us. David died 8 years ago today. Many people will just vaguely remember that kid from high school that got cancer. But some people still show up. They do it in a text with a funny story about him or a well timed card in the mail. They do it when they hold my eye for a bit longer than they normally would. They do it by wearing a shirt or sharing a joke.

Those who knew David would know that he would be so happy to know that his friends still have a connection with his family. And even those who didn’t know David probably know how happy he is that we are funding research more aggressively because of him.

Maybe you aren’t sure how to show up for a friend who needs you right now. Let me assure you that it is easier than you think. Words aren’t necessary. Just let them know you see them. David was the master at that. I wish I had learned that skill from him a little better before he left us.

Here’s your invitation to show up today, or this month, for kids like David. Give a few bucks, wear some grey, Zoom with a friend who is lonely. Show up now for those who can’t.

Siblings have it the worst

I’m not sure what I really want to say here. I’ve watch my daughter try to navigate life without her best friend for the better part of 7 years, and despite how much she has accomplished, I know there’s a big gaping hole. She got to spend almost her whole childhood with a big brother, and in this world we are now part of, that’s a big deal.

Today we did something that I thought would be really cool. We took a 12 year old to Walt Disney World so she could run her first 10k. She’s running for awareness for brain cancer research because her brother died before either of them really got to middle school. She was excited. We were excited. But somehow, after getting here and looking around at the peaceful environment of the Animal Kingdom Lodge, it just became sad.

It’s sad because her brother who loved lions and nature is not here to see it with her. It’s sad because in this very peaceful place, there is no peace inside her. Living without your sibling is torture. Yes, they are in a better place, but as an adult I can barely wrap my head around that, so how could a kid?

Every day she lives is tainted by senseless loss. Most 12 year old girls want to be teachers or models. She wants to be a neurosurgeon to try and save kids like her brother.

She and my daughter know a loss that we want to save others from knowing. It motivates her and as much as it causes pain, I believe it will also cause a change in our world.

She hasn’t hit her fundraising goal yet because she is still learning how to ask people for help. It’s not an easy thing to learn, and it’s almost easier when all you want is money. But what she needs more is someone to sit beside her and feel the pain. Believe me, writing a check is so much easier.

Is there a connection between birth defects and cancer?

Did you know? Kids with certain structural birth defects are 3x more likely to develop a CHILDHOOD cancer.

Researchers know this, but they don’t know why. That’s why this project is really so groundbreaking! For years (forever?) diseases/conditions have been studied in silos, any connections between them only being made years later after papers are published. This is an active effort to look at two very different things – birth defects and cancer – to see where we can find common ground.

Today we are the featured foundation for the Gabriella Miller Kids First Project. We have pledged our support to this effort – easy for us to do since they are using Cavatica for their data resource center. Learn more about Kids First here!

Strength for David’s 25th Birthday

I’ve posted this same info in a few other places, but if you are a loyal blog reader, you get to see it with a different picture. This picture is special because not only were we celebrating David’s birthday, but he was having one of his favorite meals and wearing a signature Aloha shirt. That big smile – so David. So if you keep track of us here, thank you. Hope your year is filled with mashed potatoes and orange chicken. ❤

Tomorrow is David’s 25th birthday. There is no party. No cake. But there may be presents. Not for him, per se, but for all the people he cared about. People he didn’t know. People he will never have a chance to meet. For David’s birthday tomorrow, we are hoping that you will make a small but meaningful commitment to change the outcome for people diagnosed with cancer. For David’s birthday tomorrow, I feel certain he would want you to give the gift of hope.

One of the most impactful things you can do is to make an ongoing commitment to research. I’ve thought about this a lot, and it really doesn’t take much to really make a difference over time. Foundations we are friendly with tie a donation number to how many kids are diagnosed a day, or how many pass away. In our monthly giving program, called Strength in Numbers, we suggest some amounts to get you started with monthly giving. Those are real and meaningful numbers, but we thought we would try something different.

Most of us have lost someone we love to cancer. If you have, what would you do if you could see them again? Maybe you’d give them a hug or just tell them all the things you didn’t get a chance to say. Maybe you’d take them out for a cup of coffee, or a beer, or… a Diet Virgin Cuba Libre. (Learn the back story on that here and here.) Pick a beverage or a meal that is meaningful to you and pledge that amount monthly (or weekly if it is a bargain). Then schedule a recurring donation. You won’t have to think about it, but you’ll be making an impact every month.

David died before turning 21, so I don’t know if he would have added rum to that Cuba Libre or not, so I’m going to go with one of his favorite meals. He loved Panda Express and always got an extra entree. So that would be $8.30, in my case weekly because I think we’d probably go to lunch once a week. I’d give that in a a heartbeat if I could share it with him, so instead, I’ll give it so that some other parent might get to continue sharing a meal with their child. Every week, I will know that I’m putting us a little bit closer to saving someone. I can’t hug David anymore. I can’t buy him lunch. But I can give hope to families who so desperately need it.

For those of you who have already made a commitment, thank you so much! For those of you who think you can’t have an impact, please let me assure you that you can. Even $5/month gives us something to budget with. Pooling our resources in this fashion means that we can have a reliable source of funding for promising research when we first become aware of it, instead of having to wait for the next big fundraiser. Data from one individual is great, but it really becomes powerful when combined with others. It is our commitment to bring our Strength in Numbers folks into a more intimate conversation around Dragon Master Foundation’s work and mission. You can give us feedback on the work we are doing and you will become part of the voice of these people who frequently can’t advocate for themselves.

Start your monthly support here: https://www.dragonmasterfoundation.org/strength-in-numbers/

 

Blindsided

Here’s the thing about grief, it doesn’t care what you’re trying to do. You can be walking along, living your life, pretending things are nearly as good as they used to be, when it just comes around a corner and blindsides you. You think you can manage and then, wham! It brings you to your knees.

Today, I flew to Pittsburgh for meetings tomorrow with doctors who are sharing their data. I’m excited about it because it gives me an inside look at how the CBTTC member hospitals collect and send in their data. There’s just one little problem. It’s also the hospital where we were told the clinical trial wasn’t working for David. It was the beginning of the end, and we all knew it.

I thought it would be ok. After all, when we left Pittsburgh, David felt great. We were still in that crazy world where they tell you your child is dying but he looked fine, felt fine. And as long as you have a treatment plan, you feel like you might beat the odds. And then comes the smack down.

In many ways, we are so appreciative of Children’s Hospital of Pittsburgh. We’ve told them that – at meetings that were far from the building I’m going to tomorrow. I know that we had more quality time with David because of the work they did. But somehow, being back on the streets that we traveled with him, it felt like he should still be here. I mean, every day, it feels like he should still be here, but somehow it was just so much more overwhelming being back here.

It made me think of the many friends I have who spend their days in hospitals where their children died. They get up each day with the resolve that they will make the day a little brighter for a family traveling the path they know too well.

When I think of that, it makes my days seem easy. When I think of that, I know I can face tomorrow with a smile for those who have dedicated their lives to trying to save our children. The truth is, none of us want to be in that room tomorrow. None of us want to be dealing with the reality of childhood cancer, but we lift each other up and do what we need to do to try and save lives. Until there are cures for all.

Breaking the silence

So much of what happens to cancer families happens in silence. You may see social media posts, but they do little justice to the minute by minute terror that is constantly plaguing these families. A recent post by a Facebook friend gives a pretty good picture of the reality, so I’m sharing it in honor of Childhood Cancer Awareness Month.

Childhood Cancer Awareness Month Day 18: madness

Watching your child lose their abilities day by day, or even faster, right in front of you. Seeing the incomprehension in their eyes and, besides showing love and hollowly saying everything will be ok, not being able to truly make anything better.

After your child’s tumor progresses and your doctors stop returning your calls. True that they don’t have any more answers but so heartless nonetheless.

Hearing the stories of friends and family who came over to cook meals, clean house, babysit, take photos, launch fundraisers, play music, spend countless hours doing research and speaking with doctors on that other family’s behalf..then comparing this to your own reality.

When after an hour of coaxing and coddling your child manages to get down the pills you hope could help extend their life only to throw them all up immediately after—bad hiccup timing or stubborn refusal? The outcome is the same.

Being denied clinical trial access and off trial medications that could extend your child’s life, due to bad timing, lack of clout carried by your medical team or more often the company/trial’s cold blooded decision to prioritize obtaining future data points over the life of your child.

Cackling madly to the ceiling when faced with yet another setback, ankle deep in the latest bodily fluid that needs disposal before you can even begin thinking of cleaning your house that looks like a) war zone b) crime scene c) hoarder’s lair (pick whichever fits best).

Dug deep furrows in both wrists watching my love get re-radiated today, head bolted tight to the machine, as we fight two tumors this, our last, time around.

Finally dozing off to sleep before being jarred awake by a bizarre sound coming from my child’s throat which sounds like ghastly choking, only to be reassured by the tone of her voice (words are now too indistinct to understand) that she’s actually ok, it was nothing.

These are just a few of the stones in the DIPG path that trigger madness.

This is how it feels at the moment….and my beloved child is still here, for now.

The alternative is unimaginable.

Arms Open

I was listening to a song today, and I wanted to share it with all of you. This song immediately resonated with me because David was always ready with a hug for anyone who needed it. They feature people in the video who were placed into foster homes, and the imagery for that group is strong.

For me, though, this song exemplifies what our brain cancer family is like. None of us want to be here, but now that we are, we are stalwart in our support. You are not going this alone. We are here. We care.

You may face rounds of chemo, the pain of side effects or the disease itself, and nearly everyone has a crisis of faith. Doors close without others opening. We can’t stop the bad news from coming, but we can be here by your side to see you through it.

All of that is said so much more eloquently in the song, “Arms Open” by The Script.

I can’t unfeel your pain
I can’t undo what’s done
I can’t send back the rain
But if I could I would
My love, my arms are open

So when you feel like you can’t take another round of being broken
My arms are open
And when you’re losing faith and every door around you keeps on closing
My arms are open

I can’t uncry your tears
I can’t rewind the time
I can’t unsay what’s said
In your crazy life
My love, my arms are open

Oh, and when you’re cursing at the sky
And thinking, “lord, you must be joking”
My arms are open
And, and when you’re looking in the mirror
Thinking that, “my life is over”
My arms are open

My arms are open (oh, oh)
My arms are open (oh, oh)
My arms are open (oh, oh)
My arms are open (oh, oh)

So let me do to you
What you’ve always done for me
And let me be the ground
Underneath your feet

I can’t unfeel your pain
I can’t undo what’s done
I can’t send back the rain
But if I could, I would
My love, my arms are open, arms are open

So when you feel like you can’t take another round of being broken
My arms are open
Oh, and when you’re losing faith and every door around you keeps on closing
My arms are open

My arms are open (oh, oh)
My arms are open (oh, oh)
My arms are open (oh, oh)
My arms are open (oh, oh)

I will be standing here
I will be by your side (my arms are open)
You see me loud and clear
With my arms open wide (my arms are open)
I will be standing here
I will be by your side (my arms are open)
You see me loud and clear
With my arms open wide

My arms are open

You can watch the video here:  https://youtu.be/vOKOamXsXYE