Be Grateful

If there is anything that we are here at the Kyrie Foundation, it is grateful.  Beyond words.

As I think back to all of the fundraisers we've either done or helped with, I can't begin to tell you how very grateful we are. 

We as a board meet and we plan.  We plan and we meet.  We email, text and make constant phone calls checking in with one another. 

Yet, in all of our meetings, never can we predict or plan the success of an event.  Because the success is not measured on dollars raised alone.

No...our success is measured by number of people who are touched by Kyrie's story.  Touched enough to make a difference.  Touched enough to do good in Kyrie's name.  Touched enough to tell others her story.  Touched enough to donate to a worthy cause.  And touched enough to change their lives.

It happens every single time I put on my Kyrie Foundation shirt.  It is amazing to watch people hear the story of Kyrie for the first time.  It is moving to watch people look at Kyrie's picture boards...the ones that sit on the tables at all of our events.  They sit there...reminding us why we fight so hard for the exposure of this story.  We fight because she could not.  We fight for other children who can't fight for themselves.  And every time someone steps up to help...

WE ARE GRATEFUL. 

No matter what. 

The money helps us to do exactly what we set out to do.  That is why we plan and we meet...and we meet and we plan.  The money that is donated goes directly to the cause that we fight for.  But it is so much more than the money.  The money helps with research.  Research helps in finding a cure.  That is what we are here to do.  But it isn't just about the money.  It is about so much more.   

So to all of you who have stepped up to help the Kyrie Foundation...

THANK YOU.

Thank you for the third party fundraisers.  Thank you for volunteering.  Thank you for the exposure.  Thank you for telling the story.  Thank you for believing in this cause. 

THANK YOU...FOR REMEMBERING KYRIE.

Go Kyrie Go! <3
Amy

The power of one

Hi all!  I am a new contributor to the Kyrie Foundation blog, but I am not new to the story of Kyrie Thome.  Let me begin with an introduction.  My name is Amy and I am a current member of the Kyrie Foundation Board. 

In January of 2008, I stumbled across this very blog via email.  I was sent a forwarded email about Kyrie Foundation "Mommy & Me" bracelets being sold to support the cause.  After much debate, I went to the blog and started reading back.  It took me days.  By the time I was done, I was a changed person.  I watched Kyrie's tribute video and attempted to go on about my daily life with my husband and three sons.  I tried to forget how awful Kyrie's story  made me feel.  I tried to forget how hard I cried when I read the post about Kyrie passing in her Mother's arms.  But I couldn't.  After more deliberation and a lot of questioning with God, I decided to write a message that I would give at church about the divine intervention of Kyrie's story in my life. 

I had never met Kyrie Dawn Thome.  I had never spoken to Kyrie's family.  This was the story of a little girl I knew nothing about. 

What I did know was that I had a son that was the same age that Kyrie was when she was diagnosed.  I also had two very healthy boys.  I had not had to watch my child slowly regress in their physical development.  I had not had to sit and listen to a Doctor try to tell me about the rare cancer that had taken over my child's brain.  I had not had to carefully pack up my child as we were released from the hospital with no other choice than to...make her comfortable.

My heart broke for this family that I knew nothing about.  And it was almost a year past the date that Kyrie had passed when I came across her story.  But I knew...I knew...I had to be involved. 

I notified the Kyrie Foundation via email that I would be giving this message at church and asked permission to use Kyrie's story and a few of her pictures.  Little did I know...the board members, including Kyrie's Mom and Dad, Aunt and Uncle and close family friends, would be attending the very service that I was speaking at that day.  It was the first step in my journey. 

Looking back, I had no idea how significant that day would be in my journey with the Kyrie Foundation.  I read Kyrie's story.  And I was moved beyond words.  I knew part of my place on this earth, was to take action and do good in Kyrie's name. 

I had no idea that Kyrie's story wouldn't stop there. 

After the message and meeting Kyrie's family, I started reading forward in the blog.  I found out there were many fundraisers that I could take part in.  And I did.  I found out there were many more ways to get involved with this foundation.  And I did. 

Two years into knowing and loving the Thome family, I was asked to be on the board of directors for the Kyrie Foundation. 

And at our last meeting...as God would have it...Kyrie's story came up again. 

Kyrie's story used to be about her birth...her life...and the love of her parents.  Kyrie's story then included her illness...and her constant uphill battle with a cancer her family knew very little about.  Kyrie's story continued when she was welcomed home by Jesus...and Kyrie's story now lives on in each and every one of us.  Her story did not stop on April 7th, 2007.  God put that beautiful little girl on this earth for much...much more.  And I am blessed to say I get to help be a part of the continuation of her story. 

If there has ever been a doubt in your mind about getting involved...let it diminish.  If you ever thought to yourself...what can I do?  I am only one person...get rid of that very thought.

The Kyrie Foundation has seen so many people...one person at a time...find Kyrie's story and make a difference. 

Allow yourself to experience the power of one.  Become part of Kyrie's story.  You will never be the same.

Go Kyrie Go!
Amy

Heaven's chorus.

Amidst all of the incredible developments we were witnessing last week in New Orleans, we also received news that stopped us in our tracks.

The very first major fundraiser that the Kyrie Foundation hosted was a thrilling union of time and talents. One of those incredible talents being from a homegrown singer-songwriter Kurt Layton and his fellow bandmates, Against the Grain. One of our founding board members, Trish, pulled on the heartstring of her cousin Kurt and voila! We had bona fide entertainment!

And they were amazing.

We were so humbled that this professional Nashville-wrangling group was rockin' it out for the babies.

Soon after that show, we learned that Kurt had been diagnosed with ALS, progressive neurodegenerative disease that attacks nerve cells in the brain and spinal cord. I lost my breath. Kyrie's brain and spinal cord were seized by cancer, and now Kurt's same system was vulnerable to yet another enemy.

You could cry out precisely the same questions that have no answers. It's not fair. His family. His gift of song. God, why?!?

So as we were sharing historic developments with researchers last week, a moment to which Kurt and his band helped us achieve, we learned that he was called to his heavenly home.

I'm hoping that you'll join us as our hearts, our prayers, our tears go out to his family, his wife, his children, his friends. Until we meet again, we will forever treasure your generous gift of song and what you have helped us create for families everywhere. Thank you so much.

The good is working.

What a week of exceptional goodness.

It was such an incredible honor to deliver you donations this past week, to meet the researchers who you are supporting and to understand our collective role in making the world a better place.

Once again, the Kyrie Foundation was graciously welcomed by the PBTF. We are so grateful to be partners in this formidable task of curing children's brain cancer. And it is because of their years and years of work prior to Kyrie that we all—you and me and your pals and your colleagues and your kids—are coming into the story at a pivotal point.

The idea of collaboration across many teams or many institutions in the medical field is far easier said than done. We are contributing to the moment in this cancer-fighting saga where the story changes.

We were thrilled and humbled to meet so many researchers from the leading pediatric brain cancer research: Duke University Medical Center, Hospital for Sick Children in Toronto, Canada, and the University of California-San Francisco.

We heard dozens of unpublished presentations on the latest and newest developments and ideas in the field. Admittedly, much of the terminology was above and beyond my studies, however, the enthusiasm and the commitment was ever-apparent.

Researchers on our left, in particular, were on the edge of their seats, ready to engage with the information like I'm sure your kids are awaiting their first day of summer vacation.

The apex of the experience was the final dialogue amongst all institutions, a conversation about pooling data—a field first that we all were able to witness!

On Wednesday evening we dined with everyone at the Court of the Two Sisters restaurant in the French Quarter, a scrumptious dinner hosted by the PBTF. We sat with Dr. Frost and his lovely wife, co-founder of the PBTF Diane Traynor, Chris Hoefflin on the PBTF board of directors and the illustrious Dr. Rutka—a table of teamwork of the greatest kind. Prior to dinner, Dianne said a few words to the roomful of scientists followed by a few more words from Chad saying how much all of us believe in the work that these people are doing. Then we handed over the big check!

We unknowingly assumed that these research must get checks like our every other day. We learned how special this grant money is simply by hearing their gratitude firsthand and seeing such delight and surprise on their faces.

So ... know that your dollars are getting the world to the cure. I can't tell you how many times I heard "just wait to see where we are five years from now!" and this is coming directly from the people on the front lines! This affirms how important your support truly is. If you want to see an end to children's brain cancer, this is exactly where you want to be. ;)

A huge amount of thanks to the PBTF for hosting such a powerful event and for getting us all to this point of monumental potential. As for the Kyrie Foundation, let's get started on the next grant!

Pack your bags!

Guess where you're going this tomorrow?

You're coming with us to NEW ORLEANS!!!!!!!!

Uh, thanks, Megan, but why would I be going to New Orleans?

To grant The Kyrie Foundation's second $50,000 to cure pediatric brain cancer! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! !  

That's right! You and your family and your friends and your kids and your companies and your business friends and your kids' friends' parents and anyone and everyone has made it possible to bestow another $50K grant dedicated to saving all of the life, creativity and wonder that resides in children's little brains! The Kyrie Foundation has been invited to New Orleans to meet this week with the PBTF for the 2011 Pediatric Neuro-Oncology Basic and Translational Research Conference. We hope to learn that current research status in this saga for a cure and connect with those leading the charge globally.

I'll try to post updates on our Facebook page, so if you're not a fan, you can like us now!

Once again, we are stunned to have reached this second grant so quickly—that is a testament to your goodness. We've said it a million times here on Kyrie's blog: it's the decision to do something, to give a little, to give a lot, to give your time, to connect your resources, to just care—this is what finds the cure. If everyone only knew how powerful the doing part of living is.

These dollars you've raised are just that—raised up in hope for the little ones fighting, raised up in thanksgiving for the little lives making our hearts forever changed and raised up in solidarity against cancer. I typed this with grateful tears ... thank you, thank you, THANK YOU!!!!!!!!!!!!!!!

one of my favs on Color Me Katie

The Real Champs

At the end of April, the softball team from Andover (KS) Central High demonstrated why they truly are champions.  Their annual 'Hit for the Cure' game helped provide donations to The Kyrie Foundation and our march towards funding a cure for pediatric brain cancer.  As you might have noticed, a great number of these ladies volunteer their time at our events and we could not be prouder of the examples they set for others.

Kicking things off with the Stars & Stripes

Some of the most important reasons we carry-on this cause...

...and will always hold in our hearts

Guys on the grill and lots of volunteer help that was appreciated

A great photo to cap a great event.  We tip our cap to this incredible group who we are proud to call our teammates!

Here's a recap of the event featured on the NBC-affiliate, KSN in Wichita...

http://www.ksn.com/news/local/story/Andover-softball-team-hitting-for-a-cure/NvUq8BNYPkO4GOosOzjVJg.cspx

From the Easter Bunny

Being an only child, I wasn’t always apt to “sharing."  When someone would tell me to “share," it usually meant I had to give up playing with a favorite toy and pass it off to another child.  And as a kid, there really isn’t much joy in that.  No warm fuzzy feeling.  Maybe even some resentment.  So if I were to have based the definition of “sharing” from my childhood experiences, I probably would have looked to avoid “sharing” in my adulthood.  Good thing I gave it another shot.

On our 5^th Easter visit to Wesley Hospital Pediatric Floor in memory of Kyrie Dawn Thome, I was reminded over and over again of the whole “sharing” deal.  As we visited sick children, ages 22 days to 14 years old, on April 22, 2011, we handed out toys, books, games, and stuffed animals…all purchased items that friends and family had entrusted us to “share” with those children.  Several different people “shared” their talents of quilting and blanket making so we could hand out specially made blankets to each and every child.  A couple of businesses “shared” their finances with us so we could purchase a QuikTrip Gas Card and a McDonalds Gift Card – for every single family of a sick child that we met.  Six girls from the Andover Central High School softball team “shared” their Friday night with us to volunteer, pulling wagons and hefting duffle bags full of Easter Goodies down the hospital halls.  Even the Easter Bunny’s dad, and Eggbert's mom, “shared” their time and helped sort and haul and hand out items as we went from room to room.  And probably the most touching “sharing” that happened was that of Kyrie’s Nana, and parents, Jordan & Lacie.  THEY continue to “share” their precious little girl and her memory, with us…strangers…just people they come across….so they can plant a seed and do good. 

Every time we visit Wesley Hospital Pediatric and PICU, we are amazed at the staff that “shares” their knowledge and support with not only the patients and their families, but also with us.  Their tireless caring and strength when working with sick children is incredible.  They are somehow able to “share” their love and concern, while keeping a professional and positive attitude no matter if we are visiting a child who is having his tonsils out or if we seeing a child with a life-threatening illness. 

And we always appreciate the parents of the children we are visiting for “sharing” just a few moments of their time with us.  We realize it is stressful, exhausting, and draining to be in a hospital with a sick child, grandchild, or foster child.  We know those parents more than likely aren’t in the mood for joking or bunny hugs.  But they “share” some moments, so their little one can find some laughter and joy on a Good Friday.  They graciously accept Easter goodies that strangers have generously donated…to be “shared” with their child.

Here is where it comes full circle.  I am still an only child…however, a touch older now.  But “sharing” has become one of my very favorite things!  And I cannot express my gratitude enough to the many that have “shared” with me.  “Go Kyrie, Go!”

Bunny Hugs,

The Easter Bunny

(SJ)

Such a tiny bundle of joy!

The Kyrie Foundation Easter Parade

Mom and Bunny visit.

It's all about the love.

A bright spot in the day for mom.

A little patient and Eggbert share the same hairstyle.

Such joy on her face!

Something fun!

More cheer!

Love the do-gooders who help out Easter Bunny & Eggbert!

And the do-gooders who return to spread more cheer!

Ready for the next little visit.

Fantastic young women who  make the world a better place!