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
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.
I feel like I hardly know the meaning of those words right now. Since January 8th, the day of his MRI, and in a much larger way, since July 31st, some six odd and atypical years ago, there isn’t a great deal of rest, and when there is, it’s barely to be trusted. Usually, it’s just a quiet moment before the other shoe drops. It’s the calm before the storm, really. And we’re always tensing for the next storm.
But after a cancer pathology discussion with Chase’s doctors today, I realized we will be entering a season of enforced rest. Despite needing frequent bloodwork to monitor his calcium and thyroid levels and all the little things that are holding him together right now, the number one priority is simply to let his body heal.
Snuggles with Mimi
Because while the pathology was most definitely cancer, the tumor was just under 2cm total, which means that – possibly for the first time in his entire life – Chase is considered “low risk“. I can hardly say it with a straight face because that sounds so very un-Chase. And because he is low risk, he gets time to heal.
Later on, after Easter and Spring, towards the beginning of May when Chicago winters finally end, the area under his angry, red scar will finally be healed and then they can do another ultrasound and look at all the lymph nodes. They took two during the surgery and they were both cancerous, but this is such a slow growing cancer that rest comes first. Right now, everything is still too angry swollen to see the truth of his status anyway. And unlike most other cancer where lymph nodes change the game completely and terribly, this thyroid cancer outcome is almost guaranteed the same story whether it has spread or not. We have not wrapped our heads around that yet.
Reading lots of cards from our Ace family
So, in the Spring, we will know more than we do right now. First an ultrasound, and then more tests or scans or therapy or even a surgery. Everything depends the lymph nodes…and the lungs…and maybe even the bones too. There are so many possibilities and variables and it all depends on what they see in the Spring.
Everything in us fights against this wait because the cancer we’ve grown used to – the cancer that inaugurated and baptized us – that cancer was a super fast thief in the night that we couldn’t let borrow even a single minute in Chase’s body. We sat with that cancer in unknown proliferation for the first five months – the same total as we will sit with this one too, and yet we fought for every single second of that time with Chase. It was brutal. So this idea of sitting with the potential of more unchecked disease still inside eats at us like… cancer. Ha. And yet, this is what’s best for Chase in the now, and we’ve sworn on our lives to do what’s best for Chase – always.
Brothers help with morning labs
So, for better or worse, we have been given an amazing amount of time to just be. Oh, there will still be hospital days every few weeks for other appointments, but we will sit on and with this strange, slow thyroid cancer.
And it’s good because we are so used to the fight being all action, all the time. The fight is fire and power and immediate and urgent until we have nothing left to give. But as of this afternoon, we are doctor-ordered and prescribed to fight still and quiet. This fight is taking a deep breath and waiting for it with great patience.
Isn’t it strange how life sometimes strengthens us in stillness over noise? …how silence can be more powerful than all the answers? …how powerless is powerful, if you’re in the right place?
Waiting is not easy, but for now, we choose to view it as a gift. We will live with this cancer. Chase will heal and we will breath deep, and then we will choose hope again.
Moment by moment.
Farther along we’ll know all about it, farther along we’ll understand why. So cheer up my brothers, live in the sunshine. We’ll understand this, all by and by. … There’s so much more to life than we’ve been told. It’s full of beauty that will unfold. And shine… Farther along. – Josh Garrels
When I was a child, we had a neighborhood hardware store with the three bright red letters emblazoned on the front of the roof. Ace was the place. My mother had spent her school teacher weekends as an Ace cashier and several years later in the height of the eighties, we would still walk in to greet the other cashiers by name, pick a small lollipop out of the plastic bucket, and race to the back of the store to watch the monkey who lived in the large enclosed cage taking up the back corner of the store. And if we were lucky, Chiclet would come over and put her hand against the glass.
Ace was our playground, our people, and our home away from home. Mom worked there, Dad went there to fix things and make Mom happy, and we – well we went for the Saturday morning cookies. We knew the people and they knew us.
Cheering for Miss Chris (Ace Foundation Manager), 2015
Skip forward another generation to a time full of IVs and chemo and blood. Chase is diagnosed and being treated and somehow, unbelievably and beautifully, Ace is still our place. But now, now they enter our other home – the hospital place. They enter our suffering and pain, funding hospital needs and family spaces and using their profits to change things for the better. Because it isn’t enough to build a house or fix a yard. They’re building lives and fixing dreams.
Ace became our advocates, our voice, and our family away from family.
Morgan Shea (Lurie Foundation), Darcy, and Chris Doucet (Ace Foundation), Robbie Gould Celebrity Golf Invitational, 2016
And somehow in all of this, Chase still didn’t want to talk to people. It didn’t matter how nice or awesome they were to him or us. He simply didn’t want to talk to them. He didn’t yet feel the history of the three red letters, and it broke my heart to watch him hide, but new people were especially hard for him after lots of treatment and pain, and everything takes a while.
Chase and Ace Foundation President Kane Calamari, Vendor Golf Outing, 2017
But I still wish him to see those around us, helping us the way I get to see them – I want him to feel the love and family the way I do. So we make it a game.
Chase and his Miss Chris, 2018
“Ibet I can say hi before you can…” I challenge him desperately. Because life with Chase is like a hostage negotiation – there’s usually only once chance to sell it – and I want to make this good.
“No you can’t!” He laughs. “Hi Miss Chris!”
And suddenly he is saying hi to Chris, his favorite Ace face and a beautiful sister warrior of the heart. She was his first point of contact and she became his first greeting too.
Finding new uses for Ace miracle buckets on the golf course, 2018
And then time passes and more good is done. Chase grows and evolves again, and we find ourselves saying hi, not only to Chris, but to everyone at Ace – and it’s still a race because Ace is full of our friends. They become our voice and stand for all good things when we drive past their buildings on the way to the hospital.
Celebrating the new library at Lurie Children’s
The buildings are low and dark, but I know the heart and light that sits inside of the space and just the sight is enough to make us feel like they’re cheering us on as we go to warrior in the hospital place.
“Hi Miss Chris, Hi Miss Kelli, Hi Ace!” He yells. “Ha! I beat you, Mom!”
He always beats me. And that’s okay because it means that my Ace is now his – that he sees them for the family they are, and he knows they stand with him no matter what.
Robbie Gould and Ace Hardware give the gift of a library to Chase’s hospital, 2018
Even on the dark, cold pre-dawn of surgery morning, they’re with him.
We round the bend in the road right before the dark buildings with their bright red letters. One last time before the hospital now.
“Hi Miss Chris!” he yells. “Ha! I beat you again, Mom.” He brags his first words as he’s been quiet with worry for the surgery just ahead.
But something catches us, slows us for a closer look this time, because there is so much more than the iconic glowing red on the buildings.
There’s an answer in the darkness, as lit windows frame letters that make words:
“Hi Chase – You got this!”
You see, sometimes hi is just a greeting.
But sometimes hi stands for growth and life and a big hug around the heart right when you need it most.
Bob, Chase, and his Miss Chris being silly on the golf course
And then the buildings are past us, the hospital before us, and he sits in the dark of the car and whispers to himself with a small, secret smile. “I’ve got this.”
We’ve got this. And then we choose hope once again.
Ace Hardware Headquarters, the surgery morning of Thursday, February 21, 2019
Dedicated with so much love and gratitude to our Ace Hardware family. Thank you for standing with us.
Ace Hardware has over 5,000 stores around the world, most of which are independently owned and operated by local entrepreneurs. Since 1991, Ace has been a proud partner of Children’s Miracle Network (CMN) Hospitals. Through Ace retailers and customers, vendor partners, and Corporate team members, over $100 million has been raised for CMN Hospitals, including Chase’s own Lurie Children’s Hospital of Chicago.
“Will you stay with me?” His lower lip trembled as he tried to be brave. And then, all too fast, we are at the reinforced white of the double doors, and the doctor in his gray-blue scrubs and hair net murmuring, “It’s time”.
I kissed his head awkwardly over the side rail of the bed, wishing I could gather him close – shield him from all of this – even as I smile and the doctor takes our picture. A final brave moment.
And then the doors open and the bed wheels through them… Chase moving forward as I’m left behind.
“Remember, there’s no smiling in the hospital,” I call stupidly just to see a tremulous smile. Even as scared as he is, he will try simply because I told him not to do it. “I love you sweet boy,” I call one last time and then the doors close as they turn the corner.
The surrender of a child is and will always be one of the most heart-wrenchingly difficult parts of this journey for me.
It takes four hours – four long hours before he’s done and I stand in another hallway, flanked by two friends as the doctor explains the anomalies of the surgeries and Chase’s body. And I want to laugh because this was a surprise to him, but very few things surprise me when it comes to my sweet boy. He’s not about the easy road though things.
The important things is that the surgery went well and that he got all the cancer out. And I tell the doctor that he deserves a gold star for powering through a thyroid surgery that lasted as long (or possibly even a smidgeon longer…) as Chase’s brain surgery. He smiles because he’s been with Chase for six years now and he knows Chase’s brain surgeon well. And later, the neurosurgeon will demand the gold star for doing a brain tumor resection in the time it takes to remove a thyroid. Doctors become strange family members this long into a fight.
I just need to see my boy now. I need to see with my own eyes that he breathes.
It felt like hours, but was probably only minutes before they call me back and as I follow the nurse, I’m whispering prayers for strength because I remember the brain surgery. Very few things make me weak in the knees, but the sight of my broken boy was one, and I remember Bob getting on the bed with Chase because I couldn’t. I couldn’t handle the stitches and scars in those first minutes and I beg for strength because Bob isn’t with me this time and I will need to find my way with Chase alone in these first minutes.
He is so broken. My sweet boy. There is a part of me that knows it is never as bad as it looks, but the part of me that birthed him and loves him absolutely detests seeing him cut and scarred – with an unholy rage.
It will pass. It always does.
But this is what it’s like to walk this road with Chase. I ache when he hurts and cry when he breaks. I signed papers asking them to do these things because all his pain is still better than the cancer – and that’s just a messed up place to be in my parent head and mother’s heart.
He finally wakes and his first words are “Call Mimi” – his maternal grandmother. And then he lays in the bed and watches her silently on the screen, and I worry that he doesn’t want to talk even though the doctors said his vocal cords came through the surgery just fine.
And then we are finally taken to a room high on the twentieth floor and he lays perfectly still. “I get to ride on the bed, but you have to walk,” he cracks and croaks, and I know even as still as he is in his pain and brokenness, he is so relieved that the surgery is finally done.
But tears leak out of the sides of his eyes and track down his temples and onto the pillow. “I can’t laugh”, he says, and I don’t know whether he’s talking about the condition of his throat or his heart.
“You’ll be surprised”, the doctors say. “It feels like he’s going to be like this forever, and then he will suddenly just start healing.”
After the sun goes down on this forever long day, a magician knocks at the door and literally folds his tall frame in half over the bed giving Chase a magic wand and the rest of us the first, hoarse bark of a faint laugh.
Has it really only been hours since the surgery? …a day since we woke to this reality? Perhaps it’s going to be okay.
But then, his calcium levels drop – a sign that his body is in revolt over the space where his thyroid used to nestle close – and so they call for labs to be done every few hours and more medications to be added to his list.
Isn’t calcium a glass of milk or strong nails? I think to myself even as they warn me about loss of feeling in his fingers, toes, and lips, and tell me to watch for his hands stiffening up, fingers becoming like tiny claws. I pray they’re kidding even while I know they aren’t and breathe just to get through the next lab. Because when you don’t have a port, every blood draw is a needle, and when you’re Chase, it’s two or three needles and so many tears..
He lies elevated on the hospital bed, sobbing hoarsely. “Don’t hurt me. Please stop hurting me” as the order comes through for labs every four hours instead of the six. And we will only know later that the nurse went back and begged to remain at the six hour mark after seeing his tears.
All through the night, the staff comes in and out for labs and medications, and to check his breath and heart as the small color-coded stickers on his torso and back keep setting off alarms. Calcium is so much more than a glass of milk and I will need all the coffee when the morning finally comes.
The next day is so much better, and Chase sits up in his bed, but he falls back and sleeps within minutes and not even the hospital playroom can tempt him for long. We smile with the staff coming in and out as they pick up Chase’s Bears bear in his San Francisco 49ers sweatshirt and ask “What is happening here? This bear seems very confused.” And Chase growls and pretends to kick his nurses out of his room after he finds out that they’re two Wisconsin girls with Green Bay in their hearts.
Then it’s time for the drain to come out of the hollow in his throat, and they reconfigure his IV while he lays still and cries more. And it would be too much for me if not for Zack, a nurse on the floor who’s father is Chase’s PE teacher and his help on Chase’s arm is the reminder I need – the reminder of connection, the reminder that we aren’t ever alone and our stories cross in crazy places and times. And after the tears dry, we send a picture of Zack and Chase to the teachers in the school.
By this second night, the healing suddenly starts where we can see it. He gets up and takes some steps, walking in the hall with his ambulance nurse friend, Craig, and flirting with the nurses. His voice is quick, high, and gravel-filled, as if he’s afraid to push against the bruised feeling they say he’s experiencing. And then he tires and I push him around in the wheelchair because Chase is still Chase and likes to move even when his muscles want none of it.
“There’s nowhere I’d rather be than here with you, Mom”, he whisper croaks over the sound of beeping monitors and a fussing baby. And for one glorious second, the hall of the hospital is the most perfect place on earth.
But the calcium dips again. So it’s another night on the twentieth floor and the hope that the morning brings better news.
And it does… thank God, it does. We will be discharged today.
By the late afternoon in the fog and rain, I push his wheelchair with one arm while I carry bags and a suitcase in the other. I wish I had a moment to cry over this tiny peek into the life of Chase’s friends who live in their wheelchairs. It hurts so much more when the ramp is bumpy or the door doesn’t open. There are so many nuances I didn’t realize until now with my hands on my own son’s wheelchair moment.
But I can’t think about crying for long because it just feels so good to leave. Neither of us have slept in so long – too long – and the Chicago parking garage air is cold and dirty, but we both breathe deep. “Freedom”, Chase whispers.
And then we drive a few short blocks to pick up Bob and the other kids at the Chicago Dance Marathon and end up staying a few minutes and saying a few words and somehow, watching people dance with abandon and cheer on kids like Chase is the most perfect way to celebrate a discharge even as Bob and I catch each other’s eyes over the crowd and marvel that Chase is still on his feet.
Sunday passes and he rests long hours at home and plays with siblings the healing is remarkable. It feels so good to hear him try and laugh again even though he’s still quiet compared to his normal Chase self. And his hand keeps going to the bandage at his throat.
Monday morning brings school for the others and more labs for Chase. And we all whisper prayers for high calcium and receptive veins. “Why do they need more blood?” he cries, even though he knows the answer. It’s simply his way of voicing the desire that this not be the way it is.
“I miss you being my hospital butler, mom.” He tells me in the car as we leave. “Now I will have to do things all by myself again.” He sighs. “I liked it better when you had to do everything for me.”
It’s late afternoon when the hospital calls. Hoping it’s positive calcium news, I’m surprised to hear the voice of the otolaryngology fellow. The pathology report is back on the cancer and it was indeed the thyroid cancer they had assumed.
Expected.
And then she tells me how the cancer was also tucked into the few lymph nodes they took out.
Unexpected.
It feels like a gut punch, this news with the with the lymph nodes. Those tiny things scare me so much as they seem to function like the railway system for the entire body. What if…? My brain silently travels the railway lines of worry like cancer even though I know I shouldn’t worry if they aren’t worried. It’s only news…words…I tell my gut.
God is as much in control of Chase’s life and story as He was five minutes ago and will be five years from now.
They aren’t very worried because Chase is asymptomatic, his glands smooth and unswollen, but it’s definitely another bend in the journey’s road. At this point, there is no great surprise. Only weary grief. And not even great sadness for Chase – he is strong and brave as he always was and will be – it’s just the heart-weighing grief of living in a world where these moments exist – where little children get sick.
Any time, Jesus, any time now, my heart whispers quiet on the call.
So in the now, we wait for word from more doctors, we wait for calcium levels, we wait for hope, we wait for strength and peace. Sometimes life is a waiting room, really. And the story twists and turns are not always fun, but they’re known to God even if they aren’t known to us. And because of this, we are free to keep choosing hope.
