Thursday, March 21st
I am somewhere between the two and three o’clock hours, pushing through Pennsylvania hills for the Ohio state border in the rain and black, praying that the truck drivers around us are as awake as I’m trying to be. I can hear the white noise low and hissing into Bob’s ears as he turns his face away in sleep from the reflection of headlights, and in the rear view, Chase is slumped and sleeping, a tiny snore emitting from his pursed lips just inches above the pink scar that is the latest on the long road that lead us to this place.
I shake my head as the GPS tells to stay on my current course for another 360 miles and Chase stirs, the discoloration on his right hand visible even in the near glowing pitch of the car. This hand and his little lymph nodes… nobody really knows why he has pain, but we decided not to put him thousands of feet up in the air in a pressurized cabin and wait to find out. So I sit stretching cramped muscles behind the wheel and wonder if all that unfolded really happened or if it was just a precious, bizarre dream.
Less than a week earlier, I received a text with unbelievable once-in-a-lifetime words, and so, as I stood in one of the vast long halls of Lurie Children’s on that Monday afternoon, it wasn’t a total shock to get the official invitation marked with the words “White House” like a promise.
Sending siblings into the arms of waiting family, we packed a rental car and left as soon as Bob got off work on Tuesday night, preparing to drive through the night with nearly complete radio silence.
And we had barely reached the dawn and the section of the drive where every interstate exit sign holds a piece of history when a traffic circle became an accident circle and the front bumper of the car took the brunt. It wasn’t our fault, but it was our time. And so we got out and met the nice Maryland drivers and we exchanged all the things while we talked about the nearest coffee spot and Chase sat on his heels in the back seat.
“Don’t they know I’m a cancer kid here? Don’t they know I’m cute and I also have to be at the White House now?”
He worried past the district border through the scads of traffic that make Chicago look like a country town, and he worried past the cathedral and the downtown, and past the extra tall doorman at the Mayflower with his elegant top hat. And then he could move past it and worry about whether the hotel had wifi for his iPad and why I was making him wear and vest and ‘dress fancy’.
“What if nobody else is dressed as fancy as I am?” He cried.
“Don’t worry, sweet boy. They will be.” I prayed for patience on the fifteen minutes of sleep snatched while Bob showered. “Going to the White House is like going to a wedding.”
And then we are blocks away, gathered in a room. Around a huge square table in the center of a law firm in the center of the town, in the center of the day, bald heads gathered near wheel chairs, and parents without children gathered near children with too white chemo skin, and we all talked and ate and prepared before they put us into cabs and pointed us towards the Washington monument.
“He is very, very brave.” The old Lyft driver gestures to accompany broken English as he points to Chase’s head in the back of his car and we stop on Pennsylvania Avenue.
“He is. And we are so thankful.” I reply with a smile.
“Keep being brave.” He smiles back and leaves us to cross to the gates and barriers.
There are ear pieces and badges and visible weapons everywhere and it’s peaceful and everyday protocol to them, but it strikes a reminder in me that we are in the heart of it now. And I feel like an extra on my favorite West Wing show, but instead of Martin Sheen, we see President Trump shaking hands along a crowd gathered in the Kennedy Garden before the kids gather at huge floor-to-ceiling windows and watch in awe as Marine One lifts effortlessly into the air. And perhaps for those ten and under, that is THE moment of the trip, because who has their own helicopter in their own backyard like that with soldiers and security dogs?
Our Secret Service officer leads us past the windows and he’s not only our escort, but he knows all the history secrets of the building too, and so while guards stand watch and other officers come and go around us, our assigned friend relaxes the earpiece along his throat and tells us all there is to be told in a short time…and then he and the others open the ropes and let us walk into these most sacred of American history spaces.
We celebrate Dolly Madison’s bravery, and the littles giggle at the idea of William Howard Taft getting stuck in his bathtub, and as I gaze at the portraits and rooms that I’ve spent my life reading about, I can’t believe that it’s our turn in these spaces – even for just a moment. We are the preservationists of the now and it is up to us what they will say about this country in the future – whether we get an official portrait or not.
And then we are passing the press room and the West Wing on the external drive, heading to the Eisenhower Executive Office Building and the signs on the pillars above the white-and-black checked floor confirm that we are close and they are ready for us.
And somehow it’s fitting that we are ushered into the rooms that were originally built to house the state, war, and navy departments. Because those who know the fellowship of the failed cell are fighting their own war.
“Chase, do you see these things?” We keep asking him as we are like kids in the proverbial candy store where all that we read is suddenly live in front of us.
“Yes, I see them and they’re cool.” He replies from his place on Bob’s shoulders, his tired body telling the silent story of a thyroid that still isn’t regulated.
And then we are in the Secretary of War Suite, the Vice President’s ceremonial office and a decades old and decades long table stretches out with the name of a child at each chair. For you see, it was the children who were to be at the table. The parents find chairs in a circle around the edges, sitting as close to directly behind their child as possible and suddenly there are fifteen kids, ages 18 months to 18 years, and some of their stories are horribly visible still, and others you might not know unless they told you, but everyone at the table has a story worth the telling and then some. Especially the two parents at the sharp end of the table – the only parents at the table directly – the ones who sat in place of their son because he had somewhere far better to be than this earth as of January first of this year.
And while there are hard stories in the room, the truth is also that these gathered are a bunch of young children, polished and on their best behavior, yes, but young children in a fancy room needing to sit very still and good. And so an older white house staffer tells the story of the Roosevelt desk being saved from a terrible fire, and then he tells them about the most hated secretary of the navy who switched the sailors alcohol rations for coffee and they called it “Joe” in his honor. And then the staffer with his bristly mustache, points out all the beautiful peculiarities of the room while the kids eyes go round and the adults smile.
And then the director of the NCI starts a game around the table where each person says one interesting thing about themselves and he entertains them with a story about his dog. And as the kids are talking and growing more comfortable with the space, there’s a small commotion in the door and those who are facing the opening begin to stand to their feet.
The Vice President snuck into the room quietly wearing years of politics comfortably on his face like a second skin and he doesn’t seem quite as tall as he looks on the news. There is a welcome and thanks, and even a little applause, and I tense because I can feel the politics coming. It’s such a short time and surely this is a photo op at best because how can he not be a terribly busy man? But he sits and he settles in like he has all the time in the world, and his eyes were kind and seeing.
“Tell me about you. What is your story?” He asks with a gentle voice, the same question he asks every single warrior around the table.
And then it comes to Chase and my fuzzy head boy sits up straighter
“My name is Chase and I’m nine, but sometimes I forget my words and stories, so can my mom help me tell you?”
And the Vice President smiles big. “Of course. My mom helps me remember things too, Chase.”
My hands are shaking because even though he’s just a man, he currently represents a title that has the power to do many things, and there are so very many things I want to tell him, but I stick to the basics and the facts – the bullet points and needle points that led us to be in the room this day.
And he listens and then leans across the table and looks at Chase, not me, but Chase – something most people don’t do when I tell the story for him. “Do you know how brave you are, Chase? Do you know how brave you are? We want to stand with you. We want to help.” He repeats it like a mantra.
And my boy… he relaxes in the way that only happens when a body feels seen and known.
And he nods.
And then he leans forward with all the enthusiasm that comes with being Chase.
“Thanks! Wanna see my scar?”
And the Vice President leans forward in his chair, meeting him half way across the table with understanding.
“You’re so brave.” He says again and his eyes see the scars that Chase didn’t point out too.
And after all the names are known and tiny pieces of stories are told, we talk about the 4% – because it isn’t enough and the Vice President knows it.
I watch in awe as the older kids who know their numbers and truths advocate from their chairs and wheelchairs and there is nothing so powerful as the warrior continuing the fight, using scars to point the way.
And when all the words that can be said in so short a time are said, they ask him questions and he’s is calm until the last one.
“Is your job hard?” the little girl with short hair growing back asks timidly.
He stops as if he’s thinking about it, and then he clears his throat and it’s suddenly evident that he’s not thinking, but gathering his emotions close. “I almost made it through this meeting without…” he pauses and coughs self-consciously. And then he looks her in the eye – her young to his unshed tear-filled – and tells her that his job isn’t hard at all. That she knows hard like everyone at the table knows hard, but for him, it’s just a privilege.
And then, we stand, preparing for him to need to excuse himself, but he offers to stay for pictures and then he asks the kids if anybody feels like checking out the West Wing with him.
The crowd is milling for pictures and words before we walk back, and Chase runs over to this man who looks like a grandfather. And the Vice President bends down in his suit as Chase tells him all about how right now, in the very hour of this important meeting, his brothers are back in Chicago, shaving their heads for St. Baldrick’s – to raise money and research for kids like him. And he listens and then asks Chase questions as if Chase is the only person on the planet for a moment.
And then it’s off to the West Wing and Oval Office and then out on the lawn and we hug and say goodbye to strangers who have become friends. And I see the staffers watching us, the look of wanting to do something to help written plainly across every face we have encountered in these surreal places.
We leave our passes at the gate house and walk out the heavy wrought iron like it isn’t the most lovely and rare thing ever, and then we go back for a little more sleep, and as we sit in the dusk and traffic gridlock, leaving all the history and white buildings behind us, I ask Chase what he thought.
He thinks for a minute and then he says these words: “Mom, I used to think that presidents didn’t have time for the kids, but now I know that they really care about us. He was so kind and I really like him a lot. And I feel so much better knowing that he cares about kids like me and wants to help us.”
And I try not to cry as we point the car back towards Chicago.
It’s utterly surreal, really.
There was no inked deal in the room, there was no promise of exactly where the already-ear-marked funds are going and no promise of more to come – even though there’s the heart to give, for sure. And there was definitely no cure on the table.
But choosing hope applies as much to the workings of the White House and the country’s budget to help these children as it does to the workings of Chase’s body, and so for me, I am hoping. Hard. I am hoping that those in the room – the politicians, staffers, doctors and administrators – that they truly mean to learn from every child. That this was not a culmination of words spoken in the State Of The Union, but rather a starting point that will lead to great and good things. Because we hold this truth and tragedy to be self evident… cancer doesn’t discriminate parties, politics, genders, races, or age. And so, when it comes to the subject of childhood cancer – neither can we.
So, I choose hope for Chase… for Sadie, for Abby, for Olivia and Grant and Tyler and all the others who were in the room and all the tens of thousands of others that they represent. Because the statistic remains: one in five children diagnosed will not survive their disease.
And in the time it took you to read this story, another three to four children were diagnosed.
Moment by moment …
All our love and gratitude to the Office Of The Vice President of the United States, The White House, The United States Secret Service, St. Baldrick’s Foundation, Latham & Watkins, The Mayflower Hotel, and everyone else involved even remotely in the execution of this special day. We are so thankful for everything you do for children like Chase and families like ours. From the bottom of our hearts – thank you.
Please note: This blog is written is from the perspective of a mother involved in the fight against childhood cancer. It is not intended to represent any political ideology but my own, and even then, only in regards to the subject of childhood cancer.