hope – Page 2 – CHASE AWAY CANCER

Of Conundrums, Butlers, And Finally Knowing Something

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?

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.

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

48 Hours On The 20th Floor

“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.

Moment by moment.

Before The Dawn

It’s cancer…
And the total mind-twisting news is that it’s actually a good cancer.
(Yes, the term “good cancer” exists.)

The diagnosis could have been so much worse, but it’s still another cancer and it’s somehow inconceivable to Bob and me that in nine short years, our sweet boy is facing a second battle.

In this wind-knocked-out-of-us moment, there is so much to weigh us down and break us, but there is so much to be thankful for – so much blessing too.

So, we choose thankfulness…and throw ourselves into the cancerous moment by moment again.

Please pray for our family, that we would bend and not break; that if…scratch that…when we fall, we will always fall toward each other and the still-good God who made us.

And finally, please pray for Chase. He’s so much older this time, he understands so much more. While this particular cancer is nowhere near as intense as his original diagnosis, I do believe this will play out so much more traumatically in his heart and mind because he knows cancer now, he understands the ramifications of this ludicrous, hateful disease. He’s grown so much in knowledge and our prayer is that he would grow in faith too. He will have so many choice moments ahead of him and our prayer is that he will always and forever choose to hope.

Cancer does not have the last word.

Ever.

…moment by moment.

“In the dark of night, before the dawn, my soul, be not afraid for the promised morning, oh how long?
Oh God of Jacob, be my strength. We will feast in the house of Zion, we will sing with our hearts restored. He has done great things, we will say together; we will feast and weep no more.” -Sandra McCracken

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.

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.

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

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.

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

Quietly, powerfully, people are doing incredible things.

~MbM~

Of Waiting, Believing, And A Rusty Leg

Yesterday was not the day we expected.

The outcome could have been so much worse and for that, we praise. However, it was a shadow day, a “cancer” day, a reminder that we live in and with something that can threaten whenever it wants. It was a day for remembered dependence on God in ways that summer pool days don’t always impress upon me.

At the end of it all, we were all six under the same roof with no hospitals or sirens and we slept – truly slept – and for that I’m thankful.

At this moment in time, here’s all I know for sure: there’s a mercy that’s new every morning and a proven refuge in times of trouble.

Yesterday was a day when it was easier for me to throw up words onto social media sites, but I’ve copied them here today. May they encourage you to wait on Him, trust in Him, and see your wait as a beautiful part of the journey.

Moment by moment.

Those who live in the shelter of the Most High will find rest in the shadow of the Almighty. This I declare about the Lord: He alone is my refuge, my place of safety; he is my God, and I trust him.” Psalm 91:1-2 (NLT)

10:15 AM —

In the first hour of this morning’s summer camp, I got a call from a friend at church indicating that Chase had been brought in complaining of a headache, right eye pain, and lack of feeling in his right leg – even some “dragging” of the leg.
[cue the parent panic…especially as his tumor presented on his left side]
By the time I got to him, he could walk, he’d never stopped talking, and he showed no signs of seizing, but he was so tired that he spoke hardly at all (for those who know Chase, you know this is out of the ordinary) and slept for a few hours following my bringing him home.
He’s now more “himself”, but keeps resting and sleeping – saying his head hurts and his leg feels “rusty” even though it works.
In times like this, it feels impossible not to panic, but we are trying to live in grace in the moment.
Right now, for me (Chase’s mom), that looks like this: setting a timer for 30 minutes and only checking my email when the alarm sounds – to avoid frantically opening the mail app on my phone every 20 seconds in hopes of hearing from Chase’s doctors.
It could be a virus, it could be his growth hormones, it could be nothing, it could be something… I don’t know and part of me doesn’t want to share this, but I’m writing it out because I believe I’m not the only one who is having to actively pursue calm and joy in the middle of a day I didn’t expect.
Peace is not coming naturally like breathing, so, I am CHOOSING it.
Choosing peace.
Choosing hope.
Moment by moment.

7:30 PM —

You all are so awesome for walking this journey with us.
I just heard from Chase’s doctors… apparently it could be one of a few things (no easy road for our boy), but it was most likely either a seizure of some kind, or even more likely, some sort of migraine episode…because, apparently, kids like Chase start getting more/frequent/painful migraines.
Oh, the side effects of breathing…
Only time will tell what really happened today.
If this is once-and-done, it was probably a migraine, but we need to watch ever so closely and at the first sign of a repeat performance – call. Don’t pass GO, don’t collect $200… CALL.
So, the weird day is done… And the weird life continues.
I want to be free of the wait for “the next thing”, and yet I choose to believe the wait is as purposeful as every other moment.
Tomorrow is a new day with new mercies.
Taking it moment by moment.
Thank you for walking this with us!

Chase still has a headache, but perked up in order to help with his evening shot.

Tag: hope