9.

Happy ninth birthday, sweet Kyrie! Oh, how can the years stack up so quickly??

Just because you're in heaven, doesn't mean that your parents don't reminisce about the day you were born. The excitement. The anticipation. The gratitude. What a perfectly packaged little angel you were! You packed in so much love during the short time you were here. Not quite enough, though, to make the ache go away.

And that's the thing. People like to assume that the adage is true, that time heals all wounds. It doesn't. What time does give you, though, is perspective. Time grows faith. Time gives you new friends to help pick you up. Time wears calluses around your tear ducts. And ironically, for spiritual people, the more time passes, the closer we actually get to mending our broken hearts.

So that is the gift for today and every day, really. What seems like one step farther is really one step closer.

We love and miss you dearly, little Kyrie, and we'll do our best to get as many people to celebrate your purpose this month. xoxoxoxo

Game Plan

So here it is. The last week of August. If you're sad about the end of summer, I have some good news for you. It's just the beginning of the most important time of the year for childhood cancer awareness. 

What do you mean, you say? We mean, use September—the next 4 1/2 weeks—to stick it to children's brain cancer. How?

1. Take out your credit card and register for the Kyrie Foundation 5K scheduled for Saturday, October 25. Right now. We'll wait.
2. Use your personal 5K registration page to invite your friends and fam to walk or run with you.
3. Send an email to your pals explaining that you need their help and their donations to beat this cancer for the little brains that can't.
4. Post on Facebook the link to your personal 5K page so that friends can donate to your participation.
5. If you've never run a 5K before (like me), download the Couch to 5K app. There's still time to really do this thing!
6. Keep reminding people. There are a lot of distractions out there, and people forget about stuff.
7. Feel free to replace your FB profile photo or post this photo in your status or on your blog. Tell people why your work matters.

8. Send another email.
9. Ask your office to make a donation.
10. Post again.
11. Count your blessings. Plenty of moms and dads out there are hoping and praying that someone like you will do something--anything--to help find a cure for their child.

Young hearts. Old souls.

Nothing warms our hearts more than when kids help other kids. And from day one, we have had young supporters working alongside the Kyrie Foundation, inspiring the adult volunteers.

• Madison and Mason have been super-incredible fundraisers each and every year for the walk, and the Stolz kids who have generously put together gift baskets.
• Anna, who has been our little light of inspiration since our very first year.
• The Andover Central Softball girls have organized fundraising tournaments and face-painted for the cause.
• The Andover Central student who organized a school assembly to help with the Pepsi Good voting several years ago.
• Kaela, who's battled a brain tumor herself, and her brother put together last year's Twilight Walk video and raise money selling t-shirts to donate to the foundation.
• Bishop Carroll's NHS students have volunteered to help each year.
• The little elementary school class in Valley Center who fundraised for the foundation.
• Vanna who made duct tape wallets and Brett who wove bracelets to help the cause.
• Jayce and Audrey who have helped their mom set up every krop.
• The volunteer families who bring their kids to our events for set-up, tear-down and you-name-it.
• Emma and Abby who gave asked their friends for donations instead of gifts for their 8th birthdays.

And so many more!

And when you look at this year's 5K event, you should know that this, too, is the work of a young and dedicated heart.

For several years, patrons have asked for a 5K. Already stretched thin on resources, the board has never had the bandwidth or the experience to organize one ... until Broc. A junior this year at Maize High School, Broc has wrangled the help of his friends, family, neighbors and local businesspeople to help make the first-ever Kyrie Foundation 5K a reality. He's consulted those with experience organizing an event like this, he's found sponsors, he worked with Sedgwick County Park, he's found the timing company, he's organized the volunteers, he's figuring out the route ... we so admired his commitment, his passion and his follow-though that we—as the foundation—put our energy into helping him make this happen, too.

He wears his Kyrie gear proudly. And many days, I've often thought of him as the big brother that every kid with a brain tumor should have. His optimism and spirit are pure; he is certainly not the entitled millennial that the media likes talking about. He is the teen who will grow up to be the guy you want in your corner, and he's just one of the reasons you should run with us on October 25.

When people shake their heads and mutter, "kids today," I can't help but shake my head and retort, "adults today." He had the guts to try something new and unchartered. He is really doing SOMETHING about this too-hard-to-think-about disease. He answered the call. We hope you will, too.

Need more motivation? Kickstart you week with a listen.

REGISTRATION IS OPEN!

You're invited to the Kyrie Foundation 5K and Family Fun Run!

Saturday, October 25, 2014
10:00 a.m.
Sedgwick County Park
6501 W. 21st Street
Wichita, KS

Of course, we'll have music, food, fresh air and fun, and best of all, every penny benefits desperately-needed global research to find a cure for children's brain cancer!

REGISTER TODAY

Each registrant will get his or her own fundraising page to help make this inaugural event a loud one in the cancer research community. Once you register you can begin fundraising, and we're hoping you ramp up your efforts in the month of September: Kyrie's birthday month and National Childhood Cancer Awareness month.

RUN Registration
7/1-7/14 $20
7/15-10/10 $25
10/11-10/18 $30

WALK Registration
7/1-10/14 $10 per person, $40 max for entire family
10/15 $15 per person, $60 max for entire family

Both the run and walk courses will be on paved running/walking paths. We urge you to dress comfortable for the weather. Registration for the 5K includes race swag bag, bib #, timing, t-shirt, post race snacks, and a USATF certified 5k course. Registration for Family Fun Walk will include medals for ALL participants, and post race snacks. Packet pick up information will be available at a later date. Great prizes for the top finishers and fundraisers, too!!

Be sure to share your registration page with pals and keep up with all the great event chatter on Facebook.

Brought to you by

www.welcoservices.com

www.doppsonline.com

www.jayhawkoilfieldsupply.com

Wichita OB-GYN Associates

Change of Plans!

For the past six years during the month of September (National Childhood Cancer Awareness month), we have organized the wonderfully successful Twilight Walk, an evening that families have come to know as a safe place for kids to play, eat food made with love, learn of great local businesses and support the need for a pediatric brain cancer cure.

Over the years we've had a ton of people ask us about a 5K. You guys gonna have one? A 5K would be a great fundraiser! Have you thought about a 5K? 

We are happy to announce, this year, we have generous volunteers who have stepped forward to chair such an event! The Kyrie Foundation 5K & Family Fun Walk will be Saturday, October 25. 10:00 a.m. Sedgwick County Park. YAY!!!!!!!!

We are thrilled to add this kind of event into the mix after so many requests! However, as you know, we are a teeny, tiny group of resources. With such a similar event happening within a month of our traditional Twilight Walk and taking place in the same market, we have decided to put our resources behind trying something new this year. It was a hard decision, but we are a group that likes to grow and are willing to try new things for the sake of raising more awareness/funds for these families.

What does this mean for you?
I still want to do the walk with my family! You can! We will still have a family walk in conjunction with the 5K.
Will I still get a t-shirt? Yes, 5K registration will include a tee. Details upon registration.
Can I fundraise like other 5Ks? Yes! You'll get instructions for that when you register.
When can I register? July1. Stay tuned for the link!
How can I help? We are in need of cash sponsorships and prize sponsors. AND ... we would love for all participants to use the month of September (Kyrie's birthday month) as a special time to fundraise through sending emails, social posts and any sort of offline fundraising. It'll be a great way to lead up to your event!

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.

Amen.

Love,
Papa

originally published April 7, 2007

Thankful Thursday

It’s irrational.

Completely irrational but real to me nonetheless.

This time of year always hangs heavy around our hearts.  The last of winter’s grip and the first breath of spring will forever remind me of Kyrie. In fact, spring’s first pink bloom I often think is her gift back to everyone here, especially those who are helping to find a cure.

This time of year, I feel more. Colors are Technicolor. Sound is Dolby surround. And my memory is in HD. The day Kyrie left the hospital for the last time, it was snowing—in April. My friend Julie had knitted and sent a darling pink hat for her, and it was just what Kyrie needed that day when no one expected the snow. That pink is ablaze in my mind. The snow and tears landed on my cheeks like soft, cold fingertips. I screamed to God in my head all day to spare Lacie and Jordan this heartache. We knew what was coming, but we didn’t know how it would arrive.

August 31, 2012. I knew what was coming, but I didn’t know how she would arrive. Due at the end of September, I didn’t know that my pregnancy would be over in just a matter of hours. Born three and a half weeks early, our daughter, Kyrie’s cousin, was born on September 1, which allows her to share Kyrie’s a birthday. This Godwink, this one-in-a-bajilliongajillion occurrence, is not lost on me.

For the last 18 months, I’ve been watching the timeline of our daughter. I watch for the smiles, the milestones and the stories that correspond with Kyrie’s life.  Oh, she was sitting up before spring! Oh, she was cooing and teething during the summer! Oh, she was marveling at the tree in December! And since January, I’ve been half-breathing.

It’s irrational.

But real to me nonetheless.

If she trips and falls, I wonder if she’s starting to lose her balance.  If she’s tired and her eyes are heavy, I study her eyes closely to see if one is droopier than the other. If she leans to one side when she’s dancing, I watch to see if she’s able to stand straight again. If she pulls on her ear, I wonder if she had a headache—a headache from what????

I am fully aware of each elusive moment. And I freaking don’t care if I look like a “helicopter” parent. I want to be in this moment with her because I’m not sure how many more I’ll get. I need to make time matter because I know—I know—this life is delicately precarious.

And accounting the minutes, the hours, the days, and the years alters behavior. For me, it recently altered my career. I concluded that time was more valuable than money, and if I could amass 10 more minutes a day, 30 more minutes a day, 90 more minutes a day, well, with compounding interest, I’d be wealthy in a couple heartbeats—hers and mine specifically.

To those unable to fully sympathize the loss of a child, my frame of mind may seem banal or sentimental. With a disposable worldview, it’s easy to assume this. I assure you, though, that putting first things first allows me to lead my life instead of follow it.

So time is ticking toward April. And while I still weep at the loss, I also joyfully watch for the gifts, the opportunities to make it right, to make it count. And that’s the mathematical secret of life, isn’t it? As your days count down, the moments should add up.

Think of life as a terminal illness, because if you do, you will live it with joy and passion, as it ought to be lived.

--Anna Quindlen

10 Ways You Can Help

Hello blog, old friend. It’s been so long!

Yes, yes, it has. And why is that? Well, …

1. Facebook is where everybody gets the latest, because who has time to read more than a status update these days??

2. We’ve been busy. Busy working with a skeleton crew to do big and real things to put up roadblocks for this beasty cancer.

However, that doesn’t mean we haven’t been thinking deep thoughts and wanting to share.

We are in the season that grips me personally each year. And this year in particular, at this time, I am acutely aware of children’s brain cancer. More on that in a later post.

The last 365 days have connected us to so many blessed little souls through Amazing Donna’s work with the Blanket Outreach Program. She contacts families with children fighting cancer, learns a bit about them and then handcrafts a blanket with their name and the foundation butterfly embroidered in the design. Each blanket is soft, warm, filled with love and prayers.

She talks with every family.

She makes every blanket.

She follows every story.

I’m sure you’ve seen the Facebook posts or maybe someone sends and email, alerting you to the need for prayers because a baby/a toddler/a kid/a teenager is fighting cancer. And maybe you “like” it. Maybe you even “share” it. But maybe it’s too tragic to read or share. Or maybe it’s too much of a downer. Maybe it’s too redundant (which is a tragedy unto itself!).

My challenge to you this year is to do something.

Why? Because: These. Children. Are. Dying.

Amazing Donna can’t do this alone. I can’t do this alone. The moms and dads praying over their children cannot make the cure appear alone.

If you do anything this year—anything—can you PLEASE help these kids?

Need some ideas? Here are some specific ways you can help us this year.

1. Offer to help tie blankets for Amazing Donna.

2. Offer to wrangle toys and giftcards for Easter Bunny/Eggbert or Frosty/Elf Rita.

3. Offer to volunteer to help with the Twilight Walk in September.

4. Offer to be on our board.

5. Offer to send emails for the foundation to reach new sponsors.

6. Offer the Kyrie Foundation to your business as a beneficiary of a corporate fundraising event.

7. Offer to organize a fundraising event.

8. Offer to be a Facebook megaphone for the foundation’s posts.

9. Offer to hold a little fundraiser to help offset the costs of Amazing Donna’s blankets.

10. Offer to organize a Twilight Walk team and talk it up this summer.

There are a million different ways we spend our time. I’m just hoping you can help encourage your friends to swap an hour of reality TV for an hour of helping send emails, pick up donations and raise the voices of these kids. Here's to a loud 2014!!!!!