The Story of Three Guys

Once upon a summer time in a city of two towers, three guys named Tim, John, and Enda did well for themselves and decided to give back.  But how?

They decided to shave their heads for donations to fund research for kids with cancer and the next annual St. Patrick’s Day party was the perfect time to do it.

March 17, 2000.  17 heads.  $17,000.  This was the plan and the goal.

They proceeded and instead of reaching their goal, they’d exceed it significantly!  Instead of the 17 and 17,000, they’d end up with 19 shaved heads and $104,000.

The party was so successful that they did it again the following year and raised $140,000.

And then the Fall came and the two towers fell in their city and lives and friends were lost in that city, yet the men moved on unshaken in their goal for children.

The next year had 37 events…not 37 heads, but events, and they reached their first $1 million.  

Many who shaved were the first responders… the men and women who ran to rescue at the two towers, who run to rescue every day, the men and women who answer the panicked parent calls for the bald cancer children, the men and women who faithfully serve the country… They shaved their heads and stood for kids with cancer on military bases.  This is heart and soul worked out with a razor.  This takes the hard and sad markings of a disease and turns it from a sign of “other” to one of greatest courage and cause.

These men with this March idea would go on to become an independent foundation and begin funding Fellows – researchers who worked to better treatments and change the future for kids with disease.  More fellows and researchers every year.  More ideas. 

The shaving events continued to grow into the hundreds and the dollars into the tens of millions and the most respected in the nation gathered for a research summit to discuss priorities and goals and quality of life for the littles and in 2012, as the ambulance rushed us in and we heard “There’s a large mass…” and our lives changed forever, this now national foundation, named for the marriage of the worlds “bald” and “St. Patrick’s”, this huge thing born of an idea to give back, it reached $100 million.  

And then it gave back as it did every year…this time, the fellows included a young doctor in Chicago who was about to meet Chase and fight for his life.  And it became personal.

Chase with Dr. Lulla while in treatment
Chase with Dr. Lulla while in treatment

Each year, the foundation chooses 5 children to be their face and story.  Four living and one forever in our hearts – to represent the current truth of the fight that 1 in 5 will not survive.  Some of them shave, and some of them can’t…because they have no hair to share.  But they all step forward, look the cameras and the papers and the people right in the eyes and say “This is me.  This is who I am because of research and the need of it.”  Sometimes, the picture painted isn’t pretty, but the children are always beautiful in their struggle and their open hearts.

And so, when your social media blows up in March with donation requests, invitations, and people in bars and on stages, covered in green aprons and crying and shaving and holding loved one’s pictures and hands… This is why.  Because almost two decades ago, three guys had an idea. 

Around the world, a child is diagnosed with cancer every three minutes.  This is our March, our year, and on some level… our life.  We invite you to come with us.

I want to help, but I don’t want to shave my head.

I want to shave my head.

I want to learn more about St. Baldrick’s advocacy in Washington.

Why do they focus on pediatric cancer?

[All St. Baldrick’s history courtesy of the St. Baldrick’s website.  To read more, click here.]

IMG_7148

12.12.14

“Mom? Are you awake?”  The quiet voice came into the dark room from the silhouette of a fuzzy head in the hall light.  “Mom?  It’s me.  I just came to tell you it’s my birthday.  I’m five today and I’m going to open presents and…and…what am I going to do today?”

photo (16)

Some days, he might need to be reminded of what you do on a birthday as the scars present their challenges, but he didn’t need help remembering that he’s here and he’s five.  And neither do I.

December 12, 2012
December 12, 2012

As I watch him open presents and I frost his cake, I find myself wanting to savor every second lest I never have graduations, weddings, and all those things that come with living long years.

Yet, as the fuzzy head tucked under my chin  and the downy quilt early in the dark morning hours, I could hear his smile in the shadows and that colors the canvas of the day.  The smile sounds spoke to my heart again: Chase chooses joy.  Always joy.

December 12, 2013
December 12, 2013

“Mom?” His voice across the breakfast table; “why are you crying, Mom?  I didn’t die of the cancer.  I’m five!”  And I wonder in my heart how such an old soul can be only five years young.  Always joy.

“Let’s just start this fight, and then we’ll get him through radiation, and then we’ll hopefully get him to age three, and then four, and then five…”  The doctor’s words always remind on this twelfth day of the last month.  Five.  The highest number listed in that year-by-year hope around the first conference table and diagnosis.

Today, my, precious, stubborn, tenacious, beat-the-odds, stare-it-down, never-say-die, don’t-mess, you-and-what-army Chase turns five with great joy.

We never thought we’d be here ever… and now we’re here.

God is good.

~MbM~

December 12, 2014
December 12, 2014

 

 

Of Giant Trees, Giant Buttons, and Not Wrestling…

Most of you know about Chase’s wonderful wish: his “park” in the back yard.  However, our connection to Make A Wish led to one other amazing thing…a thing we didn’t even know to wish for, but a thing that can only be described as an amazing dream.  Chase was invited to come to the Macy’s on State Street, to the famed Walnut Room, and help light the three-story tree to kick off the holiday season in the store and start Macy’s “Believe” campaign.  We would find out less than 24 hours before this occurred that he would be alongside Ryan Seacrest and American Idol winner Lee Dewyze.  

How I wish that each of you could have been there with us and experienced this day! 

The great tree
The great tree

Being ushered past long lines to our complimentary tables (I mean, like that isn’t a dream in and of itself!)…

Meeting staff, servers, people in marketing, store managers, corporate leaders: all so passionate about what they do in the world of Macy’s and how Macy’s affects the world…

Writing letters to Santa and mailing them with Lee Dewyze…

Right before the 12 high-fives...
Right before the 12 high-fives… [credit: Ryan Blackburn, Make A Wish]

Watching Lee be super cool as Chase wanted to give him twelve high-fives one after the other… (That’s not an exaggeration.  We counted.)

photo 5 (1)

Having the Macy’s photographer take pictures of our family in front of the great tree and Karsten (in an elf’s hat, no less) sulking on the floor and refusing to smile… 

How we roll when it comes to family pictures
How we roll when it comes to family pictures

Being told that Ryan Seacrest wanted to meet our family before the tree-lighting ceremony…

Being ushered into a media-filled room waiting to hear from Ryan Seacrest and watching him hunker down and focus on Chase…

IMG_3081
[photo credit: Ryan Blackburn, Make A Wish]

Hearing Chase ask Ryan (there to launch a very classy line of menswear) if he liked his dirty, beat-up, favorite Spider-Man shoes…and hearing Ryan answer “Yes, I do!”…

Having to utter the phrase “Boys, remember that time when I told you that we don’t wrestle in front of Ryan Seacrest?”…

"Mom, I just ate Olaf's head!"
“Mom, I just ate Olaf’s head!”

Our amazing server, Stephanie, who put up with our crazy table full of small children and saw to our every need…

Aidan falling off his dining chair…(more than once

The beautiful store manager, Kim, who spoke of children like Chase with tears in her eyes…

Seeing people stacked several deep, lining the balconies that look down into the Walnut Room…and the bank of cameras and media personnel and very bright lights down in front…waiting

Chase's view of the room
Chase’s view of the room

Hearing the introductions from stage: “…Ryan Seacrest, American Idol winner, Lee Dewyze, and our special celebrity… Chase Ewoldt!”…and knowing they honored his fight with their words…

Listening to Lee dedicate his song to children like Chase and then sing the words: “I can’t stand up on my own don’t need to stand alone lift me up so I can see the light…Don’t be afraid…”…

Seeing our other children being invited on stage and knowing that their own often difficult lives as the siblings of a fighter were being honored…

This IS my happy face
This IS my happy face

Hearing Bob and myself being invited as well and not accepting as our fourth child, aka: “the grumpy elf”, refused to go anywhere near a stage…  

Watching Ryan call “Five… Four… Three… Two…” and hearing the crowd chant the count, getting louder and louder with him…

Watching my children, surrounded by special people and so much love, start to depress the giant novelty tree-lighting button right around “Two…”…because it was too hard to wait…

Hearing Ryan’s voice call “One!” as the room transformed and the light shot up to the ceiling, three stories above us…

The cheering of the crowd…

Aidan running over to me with the guitar pick from Lee’s performance and his voice saying “Mom! Look what I got from my new friend!”…

Watching Ryan lift Chase to stand on the button (the size of a small column) and Chase’s arms going into the air, triumphant, as he watched the lights and heard the sounds… He’d pushed the button and he knew it.  And the ceiling said “Believe”.

10429479_10152403426645583_5538134355511758023_n
[photo credit: Alyssa Horrall, Macy’s]

A truly precious day.

Moment by moment.

~Our family’s heartfelt thanks to Dana Kuhman Whitty, Ryan Blackburn and every beautiful soul at Make A Wish, Alyssa Horrall, Kim Groth, Martine Reardon and the entire Macy’s team who made us feel like cherished family, the beautiful Starr Royal-Burrell of Build-A-Bear who invited our children to come build bears (or dogs, or Olaf the snowman), the incomparable Ryan Seacrest and the Ryan Seacrest Foundation, and the wonderfully talented Lee Dewyze and his high-five skills.~   

Note: We eagerly await (and look forward to sharing with you!) the official photographs from Macy’s at a later date…please, stay tuned.