On Tuesday, December 12th, Chase turns 14! Isn’t that a miracle?!
This year, he (again) had a request: his birthday fundraiser be equally divided between Lurie Children’s Hospital and the Anthony Rizzo Family Foundation. But there’s also a little extra, a special 14th birthday nod to his friend Robbie Gould’s new partnership with Cal’s Angels. In honor of Chase, we will also be raising a separate $500 going to Cal’s Angels in order to help grant a wish for another child like Chase.
We can’t think of a more fitting plan! Lurie has gifted Chase life more times than we can count, the Rizzo Foundation has instilled more hope, and Cal’s has brought more joy – Life, Hope, and Joy – all together.
Would you consider donating here? You can give $14 for Chase’s 14 years (or a multiple of 14…or more!).
Every dollar counts, and this year, it feels like it counts double…no, triple! …as the dollars will go to help a child like Chase and a family like ours – often in their most stressful, heartbreaking moments – in the home with Cal’s, in the hospital with Lurie, and around the country with The Rizzo Foundation.
With your help, we can contribute to research, resources, and encouragement for so many children like Chase.
“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’scancer” 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.]
At almost twenty four hours past ten exact (and so long) weeks, there is news.
Chase is going to be having a full body scan.
They used to say that absolutely anybody who got thyroid sick like this had to have their full body looked at, but in the last few years, the doctors realized that there are some who need this level and others who really do not.
And herein lies the conundrum that has lasted much of these weeks set aside for his post-surgery healing: Chase’s cancer lies low and quiet in the area where thyroid sick people really do not need a full body scan, but Chase himself stands tall and proud at the other end of the spectrum. If we were being honest, I always picture Chase holding the “high risk” sign marching at the head of the “high risk” parade, leading everyone who follows him into even greater unknown areas.
So these last weeks, the ones who oversee his care here in Chicago have talked to different endocrine teams across the country asking; “Hi there, what would you do with a child like Chase?”(as we all do at one point or another…) And some have thought to stick to the guidelines of thyroid ultrasounds now and again, while others have said they would scan the whole body just to be safer than safe. And ultimately, there was no right or wrong path, just whatever is best for Chase. But what is best for Chase?
Outside on Easter Sunday
And so it came down to last night. And I thought I had the peace to hear whatever I was going to hear on the phone. I even thought I had the words I’d need to either accept or advocate…
In these weeks, I have prayed for wisdom and strength and told all the doctors that I feel unfit for this decision. Do you have any idea how beguiling the idea of a full body scan is to the average cancer parent who beats back founded and unfounded fear with every blink of their eyes? I am not equal to these challenges because the logical part of my brain parses clinical data even as my mother’s heart screams to GIVE HIM ALL THE TESTS NOW.
And then it came. The call last night… “I talked to Chase’s oncology team, and they feel that, given his complicated history, it would be far better to just go ahead and do the full body scan.”
And I knew such peace in that minute. Because each moment of care is ultimately about Chase being understood. And in that phone consult moment, he was known. At this time, it’s not necessarily the known cancer that is the enemy, but the cell secrets his body likes to keep quiet until they challenge him (and us) hard and fast. And now all the teams are on board around this idea: we are ready to be done with cell secrets for a while.
Doing labs in his Washington DC shirt
But there is a reason they hesitated to do this for him and it’s because the process is long and complicated. In order to ready his body for its close up, he will need to be taken off the medicine that keeps him thyroid-functional even though he lacks the actual organ, and he will feel, as they said yesterday, “not himself”. He will sicken and tire and just hurt for the medication we are keeping from his little body. The medication that just, in the last two weeks, has finally regulated and helped him to feel better. And it will take two full weeks to get him to this tired point. And then there will be successive lab days and they will marry with test days, and so the entire process, start to finish, will probably last two to three weeks.
But we will know. (at least all there is to know in this moment)
Making a new friend in the hospital; Chicago Cubs first baseman, and amazing encourager, Anthony Rizzo
So, I exhale in relief, and Chase, well, he inhales in apprehension. Because in his precious mind, to look at the body is to find cancer. Every time there’s a new test these days, they find another mutant cell.
“What it…?” he says.
“We will deal and it will be okay.” I try to keep my voice even for him.
“But Mom, what if they find a new cancer and there isn’t a pill to take it away?” His nearly lash-less brown eyes are huge and his mouth twists around his emotions as he sits on the stairs and voices these too-big questions.
And God help me, I looked into his eyes and I broke and lied. Because there are certain things we don’t ever want to have to tell our children. “There will always be a pill.” Oh God, please don’t ask me to ever go back on my word to him…please.
But he knows me and he knows enough. “But what if there isn’t…?”
“We will always do as much as we can, my sweet boy,” I reach for him. “I don’t want you to worry for these things if it isn’t time to worry, okay?”
He nods. “Okay. Just tell me this. When I stop breathing here, will I start breathing with in heaven with Jesus and Mia?”
I swear that I stop breathing for him. How are these things even in his heart? “Faster than you can breathe, my love. Faster even than you can think.”
“Okay.” He nods as the fear fades off his face. In this moment, he is not afraid to die, as he sometimes is when he thinks about hospital things. Today he was just afraid to be alone and I could tuck that fear away for him, for a moment if nothing else.
“Tell me this,” I force a smile as I feed him the line I always do when he sits in the fear too long. “Are you planning on dying any time soon?”
He grins and jumps up. “No! I’m going to ride my bike, okay?” He pauses and switches to his most authoritative tone, “And hey, you need to tell my doctor that when they finally get this cancer out of me, I need to start my growth hormones again because everybody is taller than me.”
I smile back at him, thankful he is diverted for the now. “Do I look like your butler?”
“Yes!” He giggles and then is out the door and into the sunshine.
Chase (as “Walter Payton” with a Robbie Gould jersey) signs an autograph for Grandpa Poole after his school ‘Famous Americans’ presentation last week
One minute is the agony of decisions.
One minute holds the beating back of brutal questions that have no good place in the head of a small child.
And one minute, we are riding bikes and being sassy in the sun.
This is life with Chase.
Moment by moment.
“Now we see things imperfectly, like puzzling reflections in a mirror, but then we will see everything with perfect clarity. All that I know now is partial and incomplete, but then I will know everything completely, just as God now knows me completely.” 1 Corinthians 13:12-13
They said his often-exclaimed, loud and exuberant “Wow!” brought smiles to many a stranger’s face…
Dear ones, you will quickly learn that video editing is not my first or best skill, and if you’re on social media, you’ve probably already seen a few of these pictures, but grab a minute (or three), a chair, and click the play button to join Chase on his Atlanta Super Bowl journey.
All the love in the world to Robbie and Lauren Gould and the San Francisco 49ers for making these memories possible (and Topgolf and Delta Air Lines for helping) – and to our Ann & Robert H. Lurie Children’s Hospital of Chicago for making sure Chase was alive and well to enjoy it. ❤️
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.
