Sunday, September 2, 2012

My friend B

I was talking to a friend yesterday via text about the upcoming Twilight Walk.  My friend has a son whose birthday just happens to be September 15th.  I wanted to share with you the conversation they had about the walk and how he wanted to spend his 12th birthday.  This young man has two little sisters.  One is 3 and one is nine months old.

This was the conversation:

Stephanie:  Braden's bday is the 15th...and he was asking about party etc-I said well that's the day of the Kyrie you mind if we spend your birthday there?  He replied:

"No, that is fine.  We need to be there helping do what we can.  Last year all I could think of was what if that was bgirl (sister).  I will have lots of birthdays to celebrate.  We need to celebrate that little girl and help stop this."  Braden, age 11  

This is what it is all about.  This is an 11 year old boy.  He has been moved by Kyrie's story.  He wants to help in any way that he can. He is willing to give up the most special day of his help raise money to save other children.  

Please join us in our fight. Saturday, September 15th, 2012 at 5:00 p.m.

For more information, please go to Twilight Walk Event Page 

There are less than two weeks until the 5th annual Kyrie Foundation Twilight Walk.  

What will you give up to be there?

Have a blessed day!

Saturday, September 1, 2012

Happy Birthday Kyrie!

There are moments in life when you just know...God is involved.  Today was one of those days...full of those moments.

For those of you who don't know, today is Kyrie's birthday.  This day is so special for her family as it is full of memories of when she was brought into this world.  She was truly a gift from God...of this I am sure.  Last night as I was reading on facebook, I came across this post written by Lacie.

"Hard to believe my sweet little angel in heaven would have been 7 tomorrow.... Missing you like crazy here on Earth but so thankful to know we will be together again someday! Happy Birthday sweet Kyrie Dawn, not a day goes by we don't think about you! Sending a great Big I LOVE YOU to Heaven tonight!"

Kyrie Dawn Thome was more than a special little girl.  She was a special little girl with a mission.  A mission bigger than Jordan and Lacie could ever imagine.  Kyrie was sent to be loved and to inspire.  I know this as I was inspired by her.  I was inspired by a little girl I had never met.  I was inspired by a little girl whose story wouldn't reach my email until almost a year after she'd gone to be with Jesus.  I was inspired by a little girl's parents and their battle with her cancer.  I was inspired by the true love that encircled the people in her family and in her life.  I was inspired by the group of people who stared the Kyrie Foundation in Kyrie's memory to help save other babies and their families from ever having to go through what they went through.  

I can't thank God enough for allowing me the opportunity to be touched by Kyrie.  She touched my life and the lives of those around me in ways I can't explain.  I know those of you reading this post can relate.  If you are a part of this foundation, you have been touched as well.  

Today, we celebrate Kyrie's 7th birthday.  She is loved and missed beyond all comprehension.  She has two little brothers and a baby sister who will sing Happy Birthday to her tomorrow at a family gathering.  There will be pink cupcakes...and most likely balloons.  There will be laughter...and a few tears.  But there will be love and a lasting memory of Kyrie and how she touched their lives and continues to do so every, single day.  

With every smile from a child...remember Kyrie.

With every donation...remember Kyrie.

On September 15th, 2012 at Bishop Carroll High School...with every step...remember Kyrie.

With every candle that burns on a birthday cake, be grateful...and remember Kyrie.  

We are so very thankful for Kyrie Dawn Thome...the life she shared...and the story God continues to write. a friend, I thought it only right that we share "our" news.  Seeing how this is a family matter...I decided to let Jordan's post on facebook do the talking.  

"A very special Happy Birthday Today! My sweet princess Kyrie would be 7 years old today. Sept 1st has always been a happy day for me. And this Sept 1st, I get to Welcome a new little niece Emerson Grace into this world. Congratulations to Megan and Chad on your sweet baby girl! Today has been very special to us, and now you have this day to celebrate too.! And Really........What are the odds of that happening, today was meant to be the day. :)"

Today was full of those kind of moments for me.  I hope it was for you too.

Have a blessed day!
Amy Nelson

Tuesday, August 21, 2012

This is why you should come to the Twilight Walk.

Written by Jordan, April 2007

Oh, God, where do I even start.

Kyrie is such a blessing to our lives, though we only her for such a short amount of time I am forever touched and changed having been her father.  Even through all this pain, I still thank God for every moment I was allowed to be with her.  Lacie and I really believe that every day is a gift.  Lacie lay with Kyrie last night sleeping on “Dog” with her, watching as she struggled to breathe.  We watched Kyrie until our eyes wouldn’t allow us do it any longer.  With every short breath, we wondered if it would be her last.
            I can’t even describe the pain we feel right now deep in our hearts.  Being her “Dadda” has forever changed me.  Her little life has touched us both in ways only a parent would understand.  As we spent the early morning talking last night, we remembered all the special times we shared with Kyrie.  Kyrie use to make it a game to sneak under the counter and pull Daddy’s toe hairs while I would try to eat at the counter.  I would let out a little squeal, and it would make her laugh so hard.  Or the many mornings I would wake up to a little set of fingers pinching Daddy’s “ouchy." Well she quickly learned that Daddy’s ouches were “boo-boos."  Lacie thought it was the funniest thing how I would wake from a deep sleep to her pinching, and they would both giggle. 
            There are so many precious moments that we shared with her, and I can truly say I don’t regret any time we had with her.  From the time Kyrie was born, she was our entire life.  Lacie and I both wanted to spend every moment we could with her.  I would hurry home from work to play with her, and even got in trouble a few times for getting her wound up.  Once Kyrie started walking it wasn’t long before she began running.  Every where she went, Kyrie would run.  And it was so cute to watch her run behind me every where I went.  Run, half hop—it was adorable.  Since Kyrie’s first surgery she hasn’t walked or even crawled. 
            When the time comes for her to leave us, I believe she will be running to God, and He will accept her with wide open arms and show her the love that Lacie and I have for the last 19 months.

There are soooo many things Kyrie didn’t get to do.  Like lose her first tooth, or skin her knee learning to ride a bike, prom, children of her own.  Life just isn’t fair.  My heart is so heavy, I cannot write any more at this time.

Thank you to all who have been praying for Kyrie, and to those who have left comments for our family.  It has really lifted us up knowing that so many people care and have been touched by Kyrie’s little life.  


And this kind of story is being felt by nearly a dozen families each and every day in the U.S. because of pediatric brain cancer—the #1 cancer-killer of children. This is why we do what we do. Please join us September 15!

Thursday, August 16, 2012

Thankful Thursday: Sponsor-style

We are SO INCREDIBLY grateful once again as we work to plan the 5th annual Twilight Walk!!! Every year is a simply a leap of faith: Will we be able to pull this off? Will people help? Will people come? Will people care?

And each year as the event gets closer and closer, and stress builds and builds, there are plenty of moments that completely bowl us over. Today we are acknowledging a special group of do-gooders—the sponsors. These businesses, these people who said yes, make the impossible possible. They are the ones in the community who deserve your business because they are so much more than "just business."

EXTRA SPECIAL THANKS to those who have generously stepped up to support the Kyrie Foundation 2012 Twilight Walk!!!

Thursday, August 2, 2012

Thankful Thursday

Still so thankful to JustinMcClureTV and all of our friends & family for helping put this message together. So .... are you registered yet, friends????? Share the link! Share the love!!!!


Thursday, July 5, 2012

Thankful Thursday

Ah! So much to be grateful for today ...

If you haven't heard, registration is open and hopping for the 2012 Twilight Walk!! Spread the word! Grateful for all those who are already forming teams, fundraising and sponsoring this incredible, and much-needed event to cure pediatric brain cancer!

Grateful for the brand, new fundraising event in St. Louis this year!

Grateful that children like Kyrie and Taya and Ethan and now little Ava are not lost in vain because of what you are doing to help. We're doing something and that's always better than doing nothing.

And grateful for this today:

What are you grateful for today?

Thursday, June 28, 2012

Thankful Thursday


Today we're so thankful for the chutzpah it takes to try something new. Of course, we're no strangers to this concept. Every idea, every ask we endeavor is a brave step forward—a step that leads to the cure no matter what kind of response we get. But there are some really cool peeps in the world that really embrace this concept.

So thankful that Wendy and Susan are trying something new for sick kiddos around the globe, a new event in a new city with new people. Pretty courageous, eh?


Thursday, June 7, 2012

Another big milestone!

Since the day a few people gathered in 2007 to talk about doing something big and good to fight children's brain cancer, there had been a yearning to financially help families going through the fight in addition to funding scientific research. It was a tough call, but we decided to work on the research arm of the Kyrie Foundation first because that's where the impending cure resides.

With each passing event and each family we met, we knew we wanted to grow our good. Lacie and Jordan can attest to how shocking and heartbreaking and staggering medical bills can be during the fight, especially at a time when one parent likely needs to be home from a job in order to care for the child.

We are so proud to announce a brand new event in a brand new city that will launch the Kyrie Foundation Family Assistance Fund!!!!!

Share the info with your St. Louis pals via Facebook!

Saturday, July 14
5:00 p.m
Firefighters Sports Complex
115 McMenamy Road
St. Peters, MO

A 6x6 co-ed tourney in round robin format followed by a single elimination tournament. Round robin matches consist of 2 games to 21, win by 2, max 25 points. Tournament matches will be best 2 out of 3 games to 25 points, win by 2, max 28 points. All teams guaranteed 4 matches. Tournament winner receive t-shirts. Divisions: Rec, Intermediate and Competitive. Food & bev available at complex (no outside food/drinks allowed).
$200/team of up to 8 players

Get your registration form here.

Contact Wendy Wilkinson (316) 644-7475/ or Susie Berry (636)-284-4942 for registration and questions.

Can you believe we get to grow like this?!? Spread the word! Hope to see you there!!

Thursday, May 17, 2012

Thankful Thursday

The Amazing Donna keeps on being amazing! Can you believe all of this prolific good work? There have been several special donors who have helped Donna with the expense of fabric, etc. They, too, have become part of this network for good. More amazingness. Easter Bunny & Eggbert's crew know exactly what I mean., how incredible it is when others step up to make this outreach possible. ;) And that's what I'm thankful for today: the courage to be amazing.

Special blanket for Mr. Blake.

And one made especially for Mr. Daniel as well.

For Elena in Wichita, KS.
Precious Payton with her special blanket.

Something for Jadyn to snuggle on the journey.

A miraculous blanket for Ava.
Chase with his blanket and a sweet note from his sweet grandma.

A sweet blanket to help Isabel.

Even Brayden's (a 5-month-old who's battled a neuroblastoma since 4 weeks after his birth) sister, Kadence, received a blanket!

And 7-year-old Nebraskan Tyson got a special blanket.

A blanket and prayers sent to Alexis, too.

Saturday, April 7, 2012

The Day the Angels Came

The Day the Angels Came
a grandpa's prayer and poem for Kyrie Dawn

Wednesday, April 4, the day we heard of the explosive growth of the tumors

Alas! O, Lord what is it that I hear?
Is it Your angels coming for our Kyrie Dawn?
O, please Lord, keep them at bay--
If just for one more day.

Thursday, April 5, Holy Thursday

O, Lord, what is this I hear?
Is it that You need another little angel to be near?
O, please Lord, please Lord, don't take our Kyrie dear.
Could You please keep Your angels away,
and we could have her just one more day?

Friday, April 6, Good Friday

O, precious, sweet Jesus, is this the day?
No, no, dear Lord, not today--
This is Your day that You died to save.
Again, please Dear God, let us be selfish
and keep sweet Kyrie another day.

Saturday, April 7, Holy Saturday Easter Vigil

Thank you dear God in heaven
for yet another precious day--
For we all know things will be done your way.
Little Kyrie Dawn is fighting so very hard--
Yesterday she three her ball three times
till her tiny arm got tired.

Angel of God, my guardian dear,
To whom God's love entrusts her here,
Ever this day be at her side
To light, to guard, to rule to guide. Amen.

Sunday, April 8, Easter Sunday

Dear God in Heaven, Your angels came last night,
As we all knew that someday they might.
They came around the hour of seven
to take our precious one to her
special place in heaven.
Sweet Jesus, we know that you, too, love the little ones,
so to You we give You our little Kyrie Dawn--
And in the end, it is always Your will that will be done.



originally published April 7, 2007

Thursday, April 5, 2012

Thankful Thursday

I've been grateful for this before, but today I'm immensely grateful for time. Whether it's fast or slow, the time to experience this crazy thing called life is alway remarkable.

It's this time of year that I am most aware of time, especially time that has past. In some ways I'm proud of this time, what loss built in the last five years for families everywhere. Moreover, I'm awash again in questions and grace-filled sorrow. I still look at Jordan and Lacie's photos of Kyrie and weep. Then I start wondering "what if" ... and that never helps.

I look around at the friends that continue to stand by the cause and am grateful anew for their unconditional giving. Such a beautiful thing.

I think of this time five years ago, and I still feel the shreds of confused anger.

I look at Kyrie's brothers, and they make me giggle so much.

I meet new people who want to help raise awareness for the foundation, and I'm a puddle of gratitude.

Most of all, this time as taught me to remind myself to "work it for good." That's one of the big gifts from the last five years. Whatever this situation, the misunderstanding, the question, I know that His time works it all for good.

Easter is nearly upon us. And while I will sit amidst another year of little girls in frill dresses, I will know that Easter makes it possible for all of us to be together again. This is not the end.

After all, it's not about how much time you have; it's about how you use it, right?

What are you thankful for today?

Monday, April 2, 2012

What a krop!

Wow!!! What another great year for all our Kyrie Foundation kroppers! So much fun, food and friendship, and all in the name of saving children's brains from cancer!!

HUGE thanks to our volunteers who were instrumental in pulling together and making it all happen. From the planning to the set-up, from the donations to the tear-down, it was the effort from a great group of people to host this event in a way that's meaningful to our guests and to the foundation.

Christy and Melissa did a great job spearheading the coordination of the event, managing all the registrants and vendors, pulling in donations, shoppin and organizing not one but TWO meals of delish vittles—thank you, thank you!! Thanks Cara and Scrappin' Boot Camp for helping us get the ladies registered and printing the shirts. Big thanks Chaney, Angela and Madison for being our sous chefs! More thanks to Melissa, Donna and even more volunteers for making BEAUTIFUL desserts and to Terry for her famous baked beans! Nana Norma was a big hit again with her mid-afternoon cookies--HUGE thanks! Thank you to Donna and Amy for adding perspective with the beautiful story of Donna's handmade blankets. Thank you to Amanda for easing those scrapping ache with her marvelous massage therapy. Thanks to Shawna for creating another fun logo for this year's event. Thanks to Chad, Jordan, Danny, Flynn and Jayce for set-up muscles and to Chad, Jordan, Danny, Madison,Wendy and Susan (who drove from St. Louis!) for all the tear-down support. Thanks to Lacie & Amy for womaning our foundation table and for being positive spirit for the foundation. Thanks to Audrey for helping put the goodie bags together. Another round of thanks to Justin McClure TV for creating our fantastic PSA to show at events like this. Thanks to Gary for the drop-off, late-night pick-up and storage of our tables and supplies.

Our vendors really make the event special, too! Thank you to Jewelry by TLC, Thirty One, Tupperware, Scrappin' Boot Camp, Scentsy, Stampin' Up and Creative Memories for being there with us on Saturday!

MASSIVE gratitude to Pig In Pig Out barbecue for donating pulled pork and turkey for our dinner and to McAllister's Deli for helping us with a delicious lunch!

Of course, the event itself wouldn't be possible in this location without the generosity of Family Church. Thank you, Dustin, for always being there with answers! Another round of applause for Scrap FunAttic and Scrappin' Time for helping us this year with a fantastic prizes!

It was another amazing year to host this event, five years of support from our volunteers, donors and patrons. Incredible and thrilling to band together for such a momentous cause. I know that Christy & Melissa are looking for volunteers to help them plan for 2013. Interested? Send an email to!

A scrappin' good time!

Our Thirty One ladies.

Our Stampin' Up ladies.

Our Creative Memories/Cricut lady.

The awesome volunteers that kept everyone fed!

An amazing group of women (and Chad) celebrated their sisterhood by spending the day at the krop!

Our Jewelry by TLC ladies.

Amazing Donna's story is so powerful. We love what she is doing for families on behalf of the foundation.

It was a full house on Saturday.

The Oh, My Goodness! Garage Sale

All that was left of Nana Norma's cookies!

Working out the knots for the cause!

Fun classes from Stampin' Up!

Danny donated his time, talent and treasure to create beautiful metal art for the silent auction!


Our professional look.

Our real look.

BEAUTIFUL desserts, right?

Our 2012 grand prize winner!

Congratulations, Teresa!

Thursday, March 29, 2012

Thankful Thursday

Today I'm really thankful for people who go the extra mile. A mile is 5,280 feet, which means 5,280 extra steps. So when I think about standing still, these people go 5,280 times further than the person who doesn't move. Amazing.

I'm also thankful about how those mile-walkers pick up the pace; they pick up people along the way, too. Kind of like a spiritual rickshaw. ;) At a good clip, you can walk a mile in 20 minutes. The extra mile, however, usually consumes hours, days of time, energy and gumption. Even if you're a rickshaw loaded with peeps, it still takes longer than anyone ever recognizes because really there's only one rickshaw driver pedaling.

What's most curious about the extra mile is that the distance is usually covered alone and even though there may be an award at the end or a finish line goal, the steps are usually solo at your computer sending emails, on the phone asking about an idea, buying fleece for blankets, beading crystals, designing a logo, loading the car full of goodies for the hospital, sending the thank you notes, giving a presentation, loading tables, picking up donations, etc., etc., etc.

We are so grateful to be surrounded by extra milers, more like marathon milers!!

What are you thankful for today?

Hope to see you at the krop on Saturday!

Thursday, March 15, 2012

Thankful Thursday

So .... if you're a creative type or even a wanna-be creative type, I'm hoping that you're thankful today for the big Kyrie Foundation Krop later this month!

Are you signed up? Have you passed it on to pals? Just a few more seats left!! Contact Christy Freeman if you have questions or if you want to be one of our special vendors.

Today I'm thankful for awareness. We talk a lot about achieving more awareness for the cause, but I'm also thankful for heightened awareness of gratitude, existence, connection. Kind of like what this video conveys. I'm a personal fan of TED (Technology, Entertainment and Design), ideas worth spreading.

What are you thankful for today?

Friday, March 9, 2012

Help the Easter Bunny & Eggbert!

While you're out and about this weekend, could you mind help out the Easter Bunny with a $10 gift card? Many times, something like this has brought parents to tears. Small good always works for big good.

Helloooooo Good Eggs!

Only 4 weeks from today…
and the Easter Bunny & Eggbert the Easter Egg will be "hoppin' & rollin'" down the halls at the Wesley Hospital Pediatric & PICU Floor!

That's right…on Good Friday (04/06) we will be delivering Easter Goodies to the kiddos stuck in the hospital over Easter Weekend…our 6th year in a row.  :-)

All done in memory of Kyrie Dawn Thome.

We were soooooo overwhelmed with the generosity of soooooo many people this past Christmas! toys!  Toys!!  & more TOYS!!! So many in fact, that we have LOTS left to hand out for our Easter trip.

What we are lacking though is:  CASH

Cash that is donated is used for:
McDonalds Gift Cards - QuikTrip Gas Cards…for the parents (parents/guardians get a $10.00 food card and a $20.00 gas card to help em' out.)  & Misc. Gift Cards…for those hard-to-buy-for-teens

We also need cash for our last minute purchases,
when we are short on specific age and/or gender items.

31 children and families benefited from the kindness of others, during our Christmas visit.  (12/23/2011) Our families.  Our co-workers.  Our friends. Heart of America Choir concert-goers.  Even strangers. ALL kinds of good-deed-doers pitched in!

We would like to make THIS visit just as successful!

If you would you like to donate, please make your check out to:

        Susan Jae Eckel
      3738 S. Dugan
      Wichita, KS  67215

We MUST have all donations BY:  March 30, 2012.

Thanks so very much for your consideration.
Wishing you an EGG-ceptional Easter!
  Go Kyrie, Go!
Susan Jae  &  Rita
"E.B."  &  "Eggbert"

Thursday, March 1, 2012

Thankful Thursday

Today I'm thankful for perspective. Whether it's the big things or little things that come across our days, it's imperative that we recognize the difference between the two. And when we don't, can't or won't, well, that's where we lose balance, lose control and lose face.

I'm thankful that maturity brings perspective. I'm thankful that experiences and compassion bring perspective. I'm most thankful that humility or those "humble in spirit" bring perspective, because as much as we think we've got it all figured out about a situation, we don't. Isn't this where all sit-com plots start? ;) And for as anguishing as major loss or life-altering pain is, the fruit of that experience, if allowed, brings great perspective. You suddenly realize what's important and what isn't. What is fact and what is mood. What is Him and what is you.

What are you thankful for today?