Today begins the month of September, the month that those in the childhood cancer world set aside to “Go Gold” – the awareness color symbolizing the fight our children face.
Gold. It’s such a gloriously perfect color, really – it shines in the darkness and reflects the light and is still considered one of the most precious commodities on the planet – even so, are our warrior children – they shine, they reflect, and they are beyond precious.
So, we set aside this one month – for most of us, this is a whole-twelve-month-all-the-days-and-hours fight – but we set aside these few tens of days to tell others why saving the lives of the next generation should be a medical, moral, and emotional priority in our country and our world. This is the time we set aside to remember all who came before us and all those who are yet to come. Because somewhere, in some place, a life-as-they-know-it is about to shatter and one more family will pick up the color, the banner, and the armor of this fight…and then it will happen again: EVERY TWO MINUTES.
Your Dad and I cannot believe you’ve lived with cancer as a part of your life for seven whole years now. I remember when we were fighting for days and months, and now you’ve lived with it three times longer than you haven’t. And how handsome and precious you look as you laugh and say that Daddy and I look so old now.
Thursday, August 2, 2012 – less than two days after diagnosis, right after brain surgery
I know this isn’t how your “cancer anniversary” is supposed to go. We’ve always celebrated because there was no more cancer and you were with us, but this year feels different. Even though you’re very much still with us, it feels like you’ve had to fight a lot harder for it this year… and for the first time in all the seven long…you are not cancer-free and it’s sort of like a distant cloud for all of us. I’m so sorry, son. We hate this for you.
Spring 2013 – blood transfusion in clinic
And Chasey Bear, we really don’t even know what to say about all the cancer stuff this year. We know you’re even more tired of it than we are. It wasn’t supposed to be this way. The older you got, the more we were supposed to laugh at how well you were doing and how silly mom is when she worries about you. But oh, my Chase… even though this feels so wrong and heartbreaking, Dad and I are so proud of you. You know more, love deeper, feel greater, and fight harder than any other nine year old we have ever known – and we aren’t just saying that because you’re ours.
Winter 2012 – the end of radiation
These days are not easy and how I wish we were remembering a seizure from seven years ago and not one just days ago, but my sweet boy, we love you so. And even if the story of your body seems to go round and round in circles, the story of your heart – held close in the grace of God – is a climb up the tallest mountain – just going higher, greater, and more – until you stand about and beyond everything else as someone who can do the impossible. You’re more than a conqueror. So brave on, my sweet boy, and fight on, my incredible warrior. You are known.
We love you and always choose hope for you,
Mom and Dad
PS: Remember what Matt said? “Whatever may pass and whatever lies before me…let me be singing when the evening comes.”
PPS: We love you more, most, and infinity.
May 2019 – image courtesy of the Anthony Rizzo Family Foundation
Tonight, you are about to climb into bed – utterly beyond caring after days of worry. I know you saw how Chase’s hand shook when he was taking off his shoes in the hallway tonight. I know you saw it and it stopped and so you doubted yourself. I know you’re secretly really angry because the doctors aren’t listening to you and don’t know. It’s okay. Everybody wishes they could see things more clearly at times. Everybody wishes other people had the answers when they haven’t a clue. Tomorrow morning is going to come earlier than you think and it’s going to bring the answers you’ve been wanting so desperately, but they will come with a price. A big one. So sleep deep tonight. And when Darcy comes into your room in just a few hours, listen to her the first time – she knows what she saw. Oh, and for the love… put on a bra before the firemen and paramedics walk through the door – you’ll wish you had it on all day. Kiss everyone extra sweet and hug them all a little tighter when you tuck them in. Everything you know right now is going to twist and vault like a bad case of vertigo. You are about to find out that you’re both weaker and stronger than you think. And that God’s love and grace is worth it all – despite all the times you will scream and fight and hate him just a little bit for what will feel like unanswered prayer. I know Chase was the accident baby. The one who showed up despite the birth control. But I think you’ve always known in your heart that he was special. And I’ve confirmed it a thousand more times since you first thought it when you held him tight at birth. So sleep deep for these last few hours before everything changes. This isn’t your fault. It’s nothing you did or did not do. That’s not how this works. It’s okay to cry. And believe me, because it seems crazy, but joy will come when you least expect it – even as you sob. Give yourself grace and be real because it’s about to get really intense. Life is precious.
Sending you a big hug (yes, it’s not physically possible, but I’m doing it anyway) from 2019 –
Your Seven-Year-Older Self
Thursday, August 2, 2012 – In Pre-Op: the last picture ever taken of Chase without a scar
Yesterday, I had the great honor of bring present at the dedication of a new hospital wing for all the kids with blood disorders and cancers. With these new rooms, the hospital will double their capacity for care, and it is beautiful. And it is time. Because the beautiful, timely, and terrible truth is that double the beds are needed in this place. And tucked away, in the southern corner of this seventeenth south floor is a single room. The director pointed it out in its quiet corner space, proudly gesturing as he gave the state of the art designations. This room is different. This room is completely reinforced with lead. To protect everyone from radioactivity… “for kids with thyroid cancer.” And as the group turned and moved down the hall, I hung back, faced the door, and took a picture. It might be his future and it might not (depending on the outcome of his body scan when it happens), but now I know the southern corner room and we had a second of silence together – that door and me. And it’s funny how an inanimate object can make you feel sick. In a strange way, it stands for everything that has passed and everything that could lie ahead, and it’s only fitting that a threshold becomes the symbol. A threshold coated in lead.
“If I’m radioactive, Mom, will I turn into Spider-Man?”
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.
