When Everything Changes

“Relying on God has to begin all over again every day as if nothing had yet been done.”

C. S. Lewis (Collected Letters)

It’s funny how a single day can change everything. 

I was sitting in the top of a football stadium along the river separating Ohio from Kentucky, the sun warming the still air all around us when I saw a new message on my phone. 

And everything changed.

For eight months now, the anchor in in the harbor has been a “wait” word. Wait and see if the cancer grows back. Wait and see if it grows into other new, breathing lung places. Wait to even look with an ultrasound because these kind of cancers grow so slow. And these doctors who see the worst and the harshest…? Well, can you blame them if they don’t want to over-cut thin skin, over-treat weary souls, over-anything these precious littles? I certainly can’t. 

But the scared places in my heart wanted to blame and scream to stop the wait and start the fight. The cancer is slow in other bodies, but cancers seem to like Chase’s body too much, and the last one grew fast like a wild fire in the wind. 

Four to six whole months to even peek inside… the pictures and news would come right before Christmas and his tenth birthday. Four to six unchecked months for the cancer to go and do anything, anywhere. And of course, it might not go anywhere. But this is Chase we’re talking about and he tends to have the outlier story; the road less traveled journey.

But then, a message read against the sun’s glare on my phone at the top of a football stadium changed everything just a bit. 

For, you see, sometimes doctors change their minds. They talk to each other and pour over the charts and histories and results like a holy grail of sorts, and then they turn to each other and question why they should stick to the idea of four to six months when Chase is a blink-of-the-eye kind of boy. And so, instead of waiting for cold weather and holidays, the message said we do it now, in just a few days at the peak of the pre-Fall warmth.

And yesterday, with a simple phone call, everything changed again

Because it’s not just the scan that comes in a few days, dear ones. Sometimes doctors change their minds about treatment too. They chart and think and test and then they turn to each other and question the wisdom of leaving cancer to grow in Chase’s body where it grows too well despite official prognoses and data. And so, while treatment may not be easy for Chase, it is a precaution that has gone from a distant possibility to an imminent reality.

For the first time since October of 2013, our sweet boy will officially go back into treatment. 

It’s silly and crazy, because we’ve known to expect this since we heard the words “It’s cancer” back in January. But it feels different now that it’s here, and it feels urgent in the speed of a changed decision. And I think at the end of the day, the best way to describe our hearts in this is ‘joyful grief’. We are so deeply thankful that the wait is over for now, and that the doctors looked to each other and came up with the answers that were heavy on our hearts. We did not have to fight them for these changes. They came to our conclusions on their own and that’s a blessing of the best kind when doctors have to be like family members on the regular. So there is joy in that oneness of mind, but there is grief too. Once again, we push into pain for the long term benefit and willingly subject our precious son to incredibly hard things for the sake of his future quality of life. 

We have been told that we will hopefully know more by the end of next week. And it could all change again in a second. But until that time when the results are known, through that time of tests and procedures, and beyond – whatever may come – as long as breath remains – we cry out for grace and strength in the …

…moment by moment.

[All pictures are from this past weekend; fulfilling Chase’s dream to finally see his friend Robbie Gould play in real time. All our love and thanks to the Gould family for making this dream a reality for Chase.]

Of Golf Carts, Big Smiles, And Being Amazing

These days in the news, so there’s so much heartbreak – so much about people who use their position of influence for evil instead of good.

I can’t change the whole, but I can give you a peak into that sad news not being the only news. Yeah, maybe it’s the sad kind that sells, but quietly, powerfully, all over the world, amazing people are silently doing incredible things.

So, this weekend, let me give you a small peak into something wonderful. And I hope it will bless you as it has blessed us.

Many hospital fundraisers are well publicized, but there are some that are quiet too. This last week, we spent 24 hours with the quiet and the powerful, and dear ones, how I wish you could see what I saw…

The Lurie patient families gathering with each other and foundation staff; hugging and talking like long lost friends — because trials knit strangers together by their souls even when they’ve never met.

Lurie families and staff gather with actor, Anthony Anderson

Chase hands out Cliff bars with Julie, a member of our Lurie staff family

Lurie patients and siblings in the photo booth

The three little neuro boys – who beat their odds and defied their statistics – running and tagging and giggling through a crowded ballroom full of VIPs.

The beautiful girl – thirteen long years in a wheelchair – who pushed up onto her braces, braced her courage and body against the podium, and told her story, shouting “Isn’t that amazing?” to a standing ovation.

Ellie and Chase

The leaders of companies, the heads of foundations, professional athletes and actors – one and all treating small children with big disabilities as if the children were the heroes whose autographs were sought and whose selfies were precious.

Selfie with Robbie Gould

Selfie with Kevin Butler

The men and women who hand beautiful, expensive golf clubs without a care into the hands of small children and teaching them how to tee up and tee off.

The looks on the players faces when asked how the game is going – the shrugs and smiles and “That’s not why we’re here today. Today is for the kids.”

Chase met Mr. Butler last year and couldn’t wait to see him again this year!

The absolutely huge center for a pro football team crossing clubs like swords and falling “dead” to the ground under Chase’s cry of “surrender or die!” – all because he’s a dad too and he gets that kids are kids no matter what.

The players who paused their game (time and again) to sign their golf balls and give the kids rides in their golf carts.

Chase gets driving lessons from former Cubs pitcher, Kerry Wood

Lurie’s Aaron Conn with all the patients and siblings

More driving with Kerry

Chase and Darcy practice driving with former Chicago Bears player, Kevin Butler

The mothers and fathers who gave up their own families in the middle of crazy, busy lives to fly to Chicago on behalf of a children’s hospital.

Chase and Charlie with Anthony Anderson

The winners who took their signed football prizes in hand and turning, bowed over bald and broken children and placed the prizes in the kids’ hands instead.

Chase with Mike DeMatteo, giver of his signed football

The silent money that bought four pieces of children’s art, framed like the greats, for thousands of dollars.

The dozens holding a sign for a boy who wasn’t there because he was on the table for his ninth brain surgery – his second in two weeks.

Kerry Wood and Darcy support Team Matthew

And dear ones, so much more. So much more! I have as many small story moments treasured in my heart as Chase has fist bumps, high fives, and “Hey, do you know you’re awesome?” questions.

Chase and Robbie take a minute to perfect their lounging skills

The few pictures I took have names to them so you can see and know what and who you’re seeing, but dear ones, there are no names in the stories because they, the famous, the amazing; they wouldn’t want you to know. That wasn’t why they gathered. So, you don’t need to know all the names behind the stories, but I do want you to see a bit of their hearts.

And these hearts? Well, they raised well over $800,000 for the hospital.

Robbie Gould with the Lurie kids and members of the Ace Foundation

Robbie speaking his heart

Quietly, powerfully, people are doing incredible things.

~MbM~