Tuesday, September 29, 2009


Love seeing everyone's smiling faces looking upward in this snapshot from one of Jordan's friends.

Speaking of snapshots, have you had a chance to peruse through the fantastic 2009 Twilight Walk photos from Diamond H Event Photography yet? Had an idea for you: If you want a jump on holiday planning, why not select a great photo from this event as your Christmas photo card this year? Some of these perfect, childhood-gleeful moments are too precious not to share--they just grow up so fast, you know? And what better evidence/inspiration that you've kept that generous Christmas spirit all year long. Just the kind of Christmas cheer to spread this year, eh?

Thursday, September 24, 2009

Thankful Thursday

Today I'm thankful once again to have the support of an amazing, generous spirit who composed a beautiful synopsis of last Saturday evening. I think you'll agree.

"The Wizard of OZ" has been a beloved film for 70 years now. It has brought joy and entertainment to many…young and old.

I have always loved this story! The music. The costumes. The characters. The scenery. And as I've gotten older, I've appreciated the meaning.

But I must say that I experienced a whole new meaning this past Saturday evening, at the "OZ-some" 2nd Kyrie Twilight Walk. As I walked around the stadium meeting & greeting lots of little "munchkins," I started to think how parallel my experience was compared to the "real Dorothy."

Traveling my own variation of "the yellow brick road," I came across 3 friends, just as "Dorothy" did. And each had their own special & unique characteristic. And maybe, just like The Scarecrow, The Tin Man, and The Cowardly Lion … my friends didn’t know that they too already possessed these things.

If you remember, The Scarecrow wished he had a brain. Megan, Chad, Trish, Melissa & Danny … The BRAINS behind this OZ-some event! For those of us who just get to show up for 5 hours once a year, we must stop and think about all of the ins-and-outs, the details, the planning, the organizing, the asking of volunteers, the WORK that goes into The Kyrie Twilight Walk! They do not need a diploma nor a certificate to prove to us how smart they are. Their success is proof enough!

Oh, how The Tin Man wished he had a heart. Lacie & Jordan…have shared their HEARTS with us, over and over again! Although it is unimaginable for most of us to know the feelings of losing a child, try to think of this young couple and their hearts being broken when the Wicked Witch/cancer came and took their Kyrie from them. Yet, time and time again, they are able to open their hearts to us. A chance to tell Kyrie's story. An opportunity to raise awareness. A hope that if they continue to speak of her, to show her sweet pictures, to walk in her memory…that others will join them in their fight.

And next we have The Cowardly Lion, who wanted Courage. Little Anna…proves to be BRAVER than a whole pack of lions! I have had the honor to meet Anna on 3 different occasions. And each time, I am amazed how this small-in-stature being, can hold so much courage. Obstacles and difficulties are all along her path, yet she faces them with the love and support of her family and friends. And … continues on. Courageously.

Another of my favorite OZ characters is the lady in pink … Glinda The Good Witch of the North. Although The Good Witch does not have a lot of screen time, her presence is constant throughout "Dorothy's" journey. She floats in and out, appearing in her pink bubble, when she is needed. When someone needs reassurance. When someone needs support. To guide. To show the way. To oversee. To remind.

Sound like anyone you know?! Ahhhhh….Kyrie. YOUR presence was definitely in that beautiful pink-orange-red bubble/sunset Saturday night.

And at the end of the story, "Dorothy" finally makes it to her destination … The Wonderful Wizard of OZ. He who grants wishes and makes dreams come true. As she kneels before him she tells of her sacrifice. Her trials and tribulations. And all she asks in return is to go home.

As I bowed my head in prayer this past weekend, before Him, all I asked for was…a cure.

At the end of the evening, as I clicked the heels of my ruby red slippers together, my chant was…"Go Kyrie! Go!" "Go Kyrie! Go!" "Go Kyrie! Go!"


(Susan Jae)

Wednesday, September 23, 2009

Photos for you!

We owe a huge debt of gratitude to Diamond H Event Photography! Roger was absolutely fantastic. Every time I saw a really neat photo op, Roger was already there to capture it. And phenomenal work—you can see that for yourself with his link for the 2009 Twilight Walk!


There are two parts of the photos and load and loads of great images of your kiddos. These are the moments, as parents, that we're too busy to take or the moment gets away before we can get the camera. Such joy on so many faces. Perfect for framing, sending to the grandparents or for you scrapbook.

You can order right there on the site, too, with Diamond H. Also, if you'd like bigger sizes than 8x10 of a photo or if you'd like to book Roger for your next event (fabulous idea because he's one of those good businesses!), just e-mail him at diamondh@ksfirst.com.

Tuesday, September 22, 2009

Apologies for the long wait!

I'm terrible to keep you waiting on news post-2009 Twilight Walk! Our dear friend Dorothy, aka Susan, sent some great photos that I'll include. Additionally, one of our generous sponsors, Diamond H Event Photography, will have photos up soon that you can see & purchase for yourself, too!

First off, I must exclaim: WOW! The day and the event turned out to be tremendously moving and successful in so many ways. Our thought on this year's location in Wichita was to make it more accessible to more people. This coupled with our support from KFDI meant that online registration was up by 44% this year! We heard so many compliments on Bishop Carroll High School's track facilities, too. There were points when adults and kids were just relaxing on the turf with their shoes off--it was that kind of special evening. So fortunate that we were allowed to host the walk with Bishop Carroll.

Love how it says "Family Stadium" there.

We had a phenomenal group of volunteers who unloaded and set up tables, tents, games and details in a flash. Thank you Mike, Mitchell, Brad, Nate, Lisa, Shelby & Craig! The McConnell Air Force Base Honor Guard presented the colors beautifully. Great merchandise and good deals at the silent auction. Fabulous tension-taming relief at the Heritage College Massage for the Cause tent. Upbeat tunes from Accent Mobile Music punctuated with the smooth style of Tony Brueski. The burgers and hot dogs and pizza slices were delish!

I watched plenty of kiddos leave with precious bags of prizes and goodies from the games! (Thank you, game volunteers!) Dorothy was a lovely hostess and was able to visit with Miss Anna, a brave fighter against pediatric brain cancer.

Face painting was a HUGE hit!And the family races! Oh, man-that's one of my favorite parts! It is so fun to see families playing together. Like here in the 3-legged race:

There were two special presentations that night, one to acknowledge our super-generous fundraising challenge teams. And the winner is ... Kyrie's Fighters!!!!!!!!!!!!!! This team of courageous and giving souls raised over $1,200 for the cause! We are humbled by their willingness to undertake the task of raising funds for The Kyrie Foundation Research Grant. We know it isn't easy and we thank you from the bottom of our hearts for your extraordinary efforts!

And if that weren't enough, the first and second place runners up were teams of brothers and sisters! We are AMAZED and a little emotional when children help other children, which is exactly what The Gorilla Gerbils and Maddie & Mason did! Thank you small and mighty cancer fighters! And thank you to all of our fundraising teams! The Carrie Turner Team, Moon Family Team, Farmer Family Team, Kyler's Krew, The Johnson Ladies, Team Finn, the OZ-some Team and the Christy Coleman Team!

The second special presentation came from Coach Rita Frakes and the Andover Central Girls Softball Team. Not only did they volunteer to run the kids games, but they came to present their fundraising from the Hit for the Cure game they played in early this summer. These sweet & strong ladies donated over $1,300 to The Kyrie Foundation! Can you believe that?! Thank you, team, for being on our team, too!

Our friendly hospitality team of volunteers passed out the balloons ...

just in time for Kyrie's balloon launch that kicked off the walk.

It was so moving to see dads with kids on their shoulders and moms pushing strollers around the track. I could hear families keeping count of which lap they were on, so dedicated to walking each one for a child somewhere that day who received a brain tumor diagnosis. It was a time to just be together, to let the little ones run off their spirited energy and to take stock of what we're thankful for and what we can do with our time here together on earth.

And, once again, thanks to you, we hit our goal for this event!!! More photos to come! And a special announcement later this week!

Saturday, September 19, 2009

Still a wee bit of time to sign up!

Don't forget that online registration ends today at noon! Online registration is a little bit better deal, plus you're assured of t-shirt (because we can plan for you!). Your registration fee includes a t-shirt, illumination star and two free game tickets per child. Just click on the Evenbrite box to the right to register!

You can still pay at the door tonight, too! Just $5. T-shirts will be for sale for $7. Every penny goes to The Kyrie Foundation and our work to fight pediatric brain cancer.

So excited for tonight!!!!!!!!!!!!!! Good food, fantastic silent auction, a special visit from "Dorothy," little game prizes for your kiddos, family races, upbeat music and your chance to meet Tony Brueksi, m-a-s-s-a-g-e therapy, balloon launch and of course, our very special 9-lap honor walk.

Pictures to come as soon as I can get 'em up!

Friday, September 18, 2009

Can't wait to see you tomorrow!

I'm in Wichita now with the board members putting the final touches on tomorrow big event. Details! Details! Details! We're organizing t-shirts, compiling tables & tents, loading trucks and praying that we'll see you tomorrow.

Ready to walk & stroll!

Don't forget that online registration closes at noon tomorrow!

Thursday, September 17, 2009

Thankful Thursday

SO much to be thankful for today!!!

Let me start off by acknowledging that this has been a very trying year for so many people--people I know personally and people I don't. The economy, health, life & death, jobs, family, everyday frustrations--it's all been doled out in unusually copious amounts this year. So when people are able to come through for a cause—for a cancer that doesn't care about the economy—despite their schedule or their routine, we are stunned and the thankfulness begins to swell and overcome us.

I am thankful each donor to the 2009 Twilight Walk. Be it a gift basket to the silent auction or a $20 giftcard that allows us to buy mustard & ketchup for the concession stand, it all matters in bigger ways than you could imagine.

I am thankful to everyone who is planning to attend this Saturday. There are a million worldly ways to spend your time and your money. Simply agreeing in your mind and on your calender to come walk around a track to help children that you may or may not know is what I like to call a Mini Miracle of Motivation. I am thankful for those of you who listen to KFDI and Way-FM, and when you hear about the Twilight Walk, you connect.

I am thankful for all of our volunteers who have agreed to fulfill whatever inane request we have. Everyone matters to us. We have volunteers who register their entire family just because they want to help even more!!!! Oh, the generosity overwhelms me! I'm thankful for the volunteer board members who work together tirelessly, setting aside precious weekend afternoons, for keeping up with hundreds and hundreds of e-mails, for missing soccer games and giving up free time and for bringing their friends, family and even their children into the fold of curing pediatric brain cancer. This has been no easy call, an assignment that we agreed to take on before we even really knew what we'd be asked to do. Immensely grateful to these souls in ways I can't even begin to convey.

I'm thankful for the inspiration that you give us. One Kyrie Foundation supporter in particular is getting married on Saturday and is unable to be at the walk. She has been a devoted and enthusiastic blessing to us in many ways. She expressed regret last year when she realized that the dates were the same. I, on the other hand, thought, how truly connected she was to the spirit of the cause! Our big days are happening at the same time! We are overjoyed for her wedding day, and I will be asking for special blessings to come her way as I make my laps. Congratulations, Kim & Dan!

And to the teams who have opted to take the fundraising challenge! Your work is the sprinkles on the frosting on the cake! You have made it possible to attain our research grant goal faster. This means we get closer to a cure faster. You have courageously asked for help and created even more awareness with every request on our behalf. Thank you for believing in this cause.

I am thankful for you, dear friend. Events like the Twilight Walk are meant to bring people together for a common good. I'm thankful that we're good together.

What are you thankful for?

There is still time to register for the 2009 Twilight Walk! This assures you of a t-shirt. We may run out if you wait to pay at the door! Online registration closes at 12:00 p.m./noon on Saturday. You can certainly come to the door, too. $5 admission, $7 for a t-shirt.

Wednesday, September 9, 2009

10 days and a million thank yous.

We have been so blessed by many, many generous souls in order to make the 2009 Twilight Walk happen.

There have been moments in the last year when I've felt chagrined when I'm about to ask for a donation. I'm the kind of person who likes to be on the giving end—so hard for me to accept and much harder to ask for something. I guess I get a little embarrassed about being vulnerable or dependent on someone's decision. I have sat in my car in front of a business with my donation paperwork telling myself to take a deep breath and don't take a rejection personally. As a consequence, I've developed a little ritual. Before I ever ask anyone for anything, I look at Kyrie's picture. In a flash, the vulnerability is gone. If she can face cancer, I can certainly ask a question.

And those who have agreed to help in big ways and small have collectively manifested an mere idea into reality yet again. We are supremely grateful to have help from:

The sponsorship from Maughan & Maughan has allowed us do our work, to fight for children and their families. This means that Maughan & Maughan believes that finding a cure is just as important as we believe it to be. We are tremendously grateful for their solidarity.

Bishop Carroll High School
For research funds to grow from the Twilight Walk, we need help from more people. To get more people, we needed a centrally located venue. To host at a centrally located venue, we needed help from Bishop Carroll High School. We are humbled and honored to be allowed access to such convenient and hospitable facilities. Our hope is that we can give children the opportunity to grow up to attend schools just like yours.

Accent Mobile Music. Oh, these are just good people. Our DJ last year was phenomenal and bolstered our cause by offering to be a part of this year's Twilight Walk even before last year's was completed. If you are in need of a DJ for a wedding, anniversary, Christmas party or school dance, these are the people you want at your event.

A-1 Singer Sewing has been a constant means of support both for the foundation and for the family since day one. The depth and breadth of sincere care that is woven through the fabric of this company is tremendous.

One of the biggest challenges to any event like ours is simply getting the word out. Attendance is how fundraisers fundraise. We can't do this without you, and we certainly couldn't have spread the word without KFDI and specifically Tony Brueski. It's been so fun to hear from many of you who said, "I just heard about the Twilight Walk on KFDI!" We love that you're listening to them and hearing about us!

The Wilkinson family is keenly aware of the need for The Kyrie Foundation. Their darling Anna was our special guest last year, and today is a happy and healthy 6-year-old. We are in this for her, for her family and family just like them everywhere.

The snack aisle in your local grocery store is a much better place thanks to these folks. Art's & Mary's has long been a fav of mine because 1) great, natural potato chips, and 2) cool retro packaging. Tastes great, looks great, does great.

Dr. David Rosen
It's bittersweet for us to come to know Dr. Rosen. He was with us during the worst of the worst. For that, we owe him an immeasurable debt of gratitude. His support in the aftermath of this disease—for all pediatric oncology patients—is truly a gift.

There are unexpected times in your life when you need your employer to be more than another place of employment. Pratt, formerly LoveBox, was able to be just that for the family when Kyrie was sick. We are still honored to have their support two years later.

Who knew how much we needed R-Quip's help?! Event logistics aren't always the first things that come to mind when you're trying to find a cure for brain cancer. Luckily, these guys came through and will allow us to get things done much more efficiently.

Gotta eat, right? Thanks to Farmland you'll be able to enjoy the best hot dogs around on September 19. Served also at Arrowhead and Kauffman stadiums in Kansas City, these are the same hot dogs the pros eat. Good & delicious!

If ever there were a family-friendly pizza place, CiCi's is it. Their pizza buffet is brilliantly accommodating for any kind of pizza palette. Even better, they've made it possible for us to offer hot, cheesy slices to you next Saturday.

Guys in the heating and cooling industry are usually hard-working, technical, get-the-job-done kind of guys. You expect a little grease on their hands, yet we know that they have genuine tenderness in their hearts for sick children, too. Good guys and good work.

In the grand global thirst for Pepsi products, our need was just a smidgen of a smidgen, but fulfilling that request had made a world of difference to the success of our event and our work. Thank you Pepsi Americas!

We needed help, and BanquetTables.pro answered. Again, the reality of earning research dollars is sometimes far flung from chemo drips and PICU. When it comes down to organizing an event—a reason for people to join the cause—it simply cannot be done without help from businesses like BanquetTables.pro. Their help will be present at every Kyrie Foundation event we host from now until who knows when. So if you need to order tables for your company, your church, your school, these are the people with whom you want to do business.

Thanks to Heritage College, you can come to the Twilight Walk and relax. If that word sounds strange to you, maybe it's time for an appointment with a Heritage College massage therapist. If you can't find me next Saturday evening, look in the Massage for the Cause tent.

Gotta get the word out, right? E-Graf-X has helped us do just that. In fact, they help us tell you who's helping us. Look for the 2009 Twilight Walk sponsor banner next Saturday. Excellent work!

We have many other wonderful entities who have helped the 2009 Twilight Walk, be it lending tents or contributing to the silent auction. I still believe that business is never just business. We make choices based on what we like and who we like. We definitely like these companies and the people within them. We hope, especially in trying economic times, that your marketplace choices are swayed by these companies who are obviously much, much more than a logo.

Tuesday, September 8, 2009

Busy bustling.

In the home stretch for The Kyrie Foundation's 2009 Twilight Walk!

I've often relayed to others that planning fundraisers is much like planning weddings. Place, time, communications, hospitality, details, details, details. All of the planning and work culminates into a magical evening full of good will.

Sometimes, as with plans for any event, a few snags try to trip up the good momentum. For us, it's been interesting to watch tiny miracles swoop in to sweep out those snags. So, so, so grateful for those, and onward we proceed to The Big Night.

I hope you're just as excited as we are! The t-shirts are in production, the games are organized and the radio announcements are running. We've heard through the grapevine that several teams have been organized and have taken the optional fundraising challenge--that's incredible!!! Again, I'm overcome with gratitude. Every penny gets these kids closer to a cure.

Stay tuned! More Twilight Walk talk tomorrow!

Tuesday, September 1, 2009


Four years ago today, I received a jubilant phone call from my brother as I sat in my office over 200 miles away. What would have normally been another work day was suddenly transformed into The Day another person came into our family, a tiny little girl that turned a husband and wife into a father and mother.

He said happily weary from the hospital room, "Yep, Kyrie Dawn Thome is finally here." I could hear Lacie and her mom in the background talking and giggling. My dad and I later practiced saying her name: Kylie? No, Ky-Rie? Keery? No, K-eye-rie. Keer-ee-aye, like in church? Spelled the same but K-I-ree. Oh, Kyrie! Yes, Kyrie.

At the time, I was excited to dream about how this new little person would grow a whole other branch of the family tree. She would be running around my old room when she visited her grandpa. I would see her graduate, get married. I'd meet her children someday.

I had no idea that instead of growing up, she would grow an entire movement that would bring people together to help save children from cancer.

I also had no idea that I would learn that our dear Kyrie Foundation friend, Easter Bunny/Frosty/Dorothy, shares the same birthday as Kyrie. Isn't that incredible? We wish our sweet friend another year of spectacular moments of caring and sharing. So grateful that you were born, too.

And to Kyrie, thank you for being born. Thank you for accepting God's plan for you even when it doesn't make sense to the rest of us. Thank you for bringing so much joy to your mom & dad while you were here. Thank you for bringing people to us who have loved & comforted us since you were called home. Thank you for introducing us to your friends: other families, other children who need our help. Thank you for waiting for us until we can all celebrate together again.

We hope every day—especially on Kyrie's birthday—that she and children just like her will inspire you to do something good today. Consider it a special birthday blessing straight from heaven.