Dear ones, in a crazy turn of events, we got the results of Chase’s scan right away – and they’re good.
There is no cancer spread.
I had one moment of great joy as I asked the nurse on the phone “So, does this mean he’s actually cancer free…?!” – the nurse got quiet then.
And even as I held the good scan words in my hands, Iknew: Chase won the battle today, but we are still fighting the war, as it were.
And it’s news like this that tempers joy with an odd sense of distrust.
As we raced the Chicago snowstorm home. I got on the phone with Bob and literally stormed these frustrated heart words: “How do we tell people good news when it feels bad…when it doesn’t change the outcomes?”
His words spoke the needed reminder into the quiet of the car as Chase slept, exhausted from the week:
“Don’t forget…we take the good and bad together, love”.
So we are taking the good and bad together and choosinghope again.
Regardless of the cancer cloud that still hangs over Chase – and will probably always hang over Chase, today held good things.
Today, I sat in the waiting room for the second time in two hospital days. I sat next to my boy knowing that I would bring him back tomorrow and then the day after, and possibly the day after that too. Some days that knowledge of coming back again and again is enough to make me cry.
Chase was beside me; quiet and preoccupied in his layered Chicago Cubs and Spider-Man shirts. He was less worried today than he was on the first day, but nobody loves injections, much less injections that need to go deep into muscle and infuse nausea with the medicine.
It could be worse, I thought to myself, my mind moving beyond this moment with Chase to the sister mama with the infant son in intensive care, the other sister mama dividing her time between her husband and son – both with tumors to fight… All the sister mamas in the hospital space… too many sister mamas (and papas too) in this hospital space. Just thinking about all the tears and pain held within the twenty-some floors is to be suddenly breathless… and then deeply weary.
Absently, I picked up my phone, aware of all the masks around us, names being called, the low whoosh of the main elevators just outside the doorway to the east check in.
Thinking of another oncology family and their own morning appointment, I opened the text screen: “I’m sending you love from the third floor”, I press send and whisper a prayer.
Across from us, the young mom holds a sobbing baby, the child crying as only a new infant can. And the tall atypical boy in the other corner was calling loud and unintelligible things as his tired mom tried to calm him and keep him seated. All around us, people wait for their next steps – six feet and often alone.
Chase curled into my side and I could feel the fuzz of his head along the scratching edges of my hospital-issued paper mask as he bends close, needing reassurance.
At that moment, my phone vibrated a sister mama reply into my hand:
“I left you love in the elevators”.
I stared down at the words as I listened to the whoosh of the six massive moving cells in the hall beyond where we sat.
The hospital elevators are legendary. They are colorful, large, and in a pre-covid world, always stuffed to the brim with visitors, parents, patients, and staff. I’ve watched people talk, take calls, have arguments, work with crying children, get lost between floors, and stand quietly in the very corners with tears streaming down their faces – working to cope with a grief that hit harder than the desire for privacy. Sooner or later, every single person at the hospital does life in those elevator spaces.
What if there was love in the elevator spaces – in all the spaces beyond the hospital too?
How would we change and grow if we knew love was behind and before us always?
What would life grief look like if we lived as if love was our legacy?
And when the injection was finally done, I got back into an elevator with Chase. We were alone as we rode down the short distance to the lobby, but I imagined the love from my cancer sister mama. It wasn’t physically tangible, but it was known. And love in the elevator was all I needed to find hope in the …
Moment by moment.
Love never gives up, never loses faith, is always hopeful, and endures through every circumstance.
See how very much our Father loves us, for he calls us his children…”
It was in the middle of a vortex of cold air sweeping through the January winter, the days dark and frigid, when we got the news. The results of the biopsy were in.
It was cancer.
Again.
In those first minutes, we reeled even though in a strange way, we had been expecting it. And in those first weeks, we heard one sentence stated a dozen ways and we believed it:
“This is the easy cancer”.
In a way, this is a clinically supportable thought. The sheer number of days spent in the hospital, the number of moments we walked to the edge of life and back when Chase was two and fighting brain cancer – it doesn’t even compare. And yet…
Today is the second anniversary of Chase’s second cancer – a cancer that still sits in his body, making it outlast the actual time his brain cancer sat throughout his body by a good eight months. And these two years have been heartbreaking and complicated in so many unexpected ways.
You see, the problem with the word “easy” is that it is an immeasurable concept. There is no one-size-fits-all when it comes to the complicated complexities put before each of us. And the use of those types of words always end up pushing me down and hollowing me out.
If it was supposed to be easy and it doesn’t feel that way, then there must be something wrong with me, right?
And then I take those wrong, hard thoughts into the day with me and I walk into the processing, the tears and the pain not only unprepared, but feeling inadequate in all ways – because it wasn’t supposed to be this way. It was supposed to be “easy”.
And perhaps that’s the true cruelty of that word – “easy” – when life isn’t (and it almost never is), then my focus invariably turns to that second phrase:
“it wasn’t supposed to be this way”.
But very few things from the start of the world were ever supposed to be this way .
“Easy” makes us sit with our doubts.
“Easy” is ripe ground for seeds of discontentment.
“Easy” is sorrow incarnate when it comes to the table of suffering.
There is no easy.
Dear ones, I believe with my whole heart there is only ordained.
And it’s in relinquishing the “easy” word that I find peace. …not in this life, to be sure, but in hope.
With hope, the hard melts and reshapes. It never disappears. Life is hard and broken and will be until I see Jesus with my own eyes. But hope is the banquet at the table of suffering.
Hope is rich and beautiful even when the tears are rolling down my face and my heart is crying out “two years of this that was supposed to be easy…?!”
Hope holds me up when I weaken.
Hope comforts me when I weep.
Hope means purpose even in cancer … and second cancers.
So throw out the thoughts of “easy” with all its frustration and futility and “What’s wrong with me?” questions.
And hold on to hope with all of it’s “God is good even here” truths. It won’t be easy, but then again, “easy” was never a part of the story. And what a story it is…
Moment by moment.
“Why am I discouraged? Why is my heart so sad? I will put my hope in God…”
“…each day the Lord pours his unfailing love upon me.”
Back in October – both a year and a lifetime ago – Chase’s bone marrow biopsy reported he had no cancer in his blood or bones. But his skin kept bruising, his tummy kept hurting, and he stayed very thin, unable to gain weight even as I watched him eat; even as I knew he was picking up enough calories.
One night, I watched him have energy and hunger. It was the first time he’d had energy all day and I watched him systematically devour three slices of oven pizza over the course of family dinner and movie night. Three whole slices! And still he appeared near emaciated. Could this still be his endocrine system?
photo credit: Margaret Henry Photography
So, the following week, I called his endocrine team. And after the call, I wanted to laughed so I didn’t cry, because sometimes the name “Chase” feels like a synonym for “conundrum”. Some days, my boy seems born to a state of confusion and trouble with the inevitability of sparks flying upward in a dark sky.
You see, Chase’s inability to gain weight, his exhaustion and even lack of energy might indeed be laid at the door of his non-existent thyroid. And it wouldn’t be that very hard to fix, but crouching at that same door are still a few small pieces of cancer, which means that opening the door for Chase to thrive – even just a little bit – might unwittingly be opening the door for Chase’s cancer to thrive.
The decision -like so many we’ve made before- felt simple, and yet precarious and complicated. He couldn’t continue to waste and tire, but the thought of our helping him also helping his cancer…? It made my heart physically ache.
In November, we put our hand to the latch, lowering his doses just the tiniest bit and not even every day. And they took more blood to check.
And then in December, we turned the knob, lowering his doses just another tiny bit so that it was every day. And they took more blood to check.
And then in January, in the middle of hospital-quiet weeks with less appointments, we pushed the door open just a tiny bit more because while he still has bruises and tires too easily, he has been able to gain a little weight and his stomach doesn’t hurt so much anymore. And they took more blood to check.
But this time, I got a notification on Friday night, just a day after they took his blood: it came back from the lab and one level went up and the other went down. And it seems that opposite directions are not good directions when it comes to things like thyroid cancer.
These numbers are out of bounds, and that means our quiet season is officially out of time. And the ones who decide – who sometimes move like grains of sand counting out time – seem to be moving much quicker now. We knew another full-body scan would come sometime, but now it needs to come soon.
photo credit: Margaret Henry Photography
So it will be one week to lay the foundation. And then another week to do the involved testing process – the one where he will lay still as death for hours on a table while they scan his entire body.
It all starts with the month of February – on the very first.
It’s possible that all of this is a simple sign of hyperthyroidism.
It’s possible that this is just the life and times of a broken body that has endured almost a decade of treatments.
And it’s also possible that those opposite numbers are a sign that the small pieces of cancer, crouched tight in the lymph nodes where his thyroid used to be… well, it’s possible they noticed that we opened the door a little and have decided to grow into the space we created and intended for his body to thrive. And if that’s possible, the doctors know they need to check his lungs too.
I am worried. But I’m also not worried, if that makes any sense at all. Sometimes faith is an even bigger conundrum than the life of our fighter boy. It’s a heart space where both grief and peace live in equal measure. And they can coexist because cancer will never stop being wrong, but Chase will never stop belonging to Jesus.
Whether the results of these tests come to nothing, or something, or whether (as we have since the Fall) we are left with no answers and the command to keep watching and waiting, we do so with hope.
These are heartbreaking moments, yes. But they’re heartbreaking moments that are part of a much bigger, better story that that HE is writing. And I don’t know how many more awful chapters there will yet be, but I know the ending is good and perfect – forever.
Incredibly, this surreal 2020 year is down to being measured in hours and minutes. This was a year of turning inward and seeing to ourselves in a strange season – even as we grieved with our community and world in unprecedented days. And yet, we did still laugh – alot. As the kids age, less gets written down, not because it isn’t funny, but usually because it isn’t appropriate. [see also #LifeWithBoys 🙂 ]
On a mental, emotional, and physical level, this year has been very difficult and all along, we have prayed for the strength to choose joy. You’ve spent the year crying with us, so now, I invite you to laugh – even for a moment. And to that end, I’ve compiled a few status updates from my social media pages.
I chronicle these things (and have done so for many years now) because life is too short and childhood is even shorter and there are too many parenting moments when you’re faced with the choice of either laughing or melting into a puddle of tears. …and that’s all without even touching illness, hospital days and the simple act of processing it all…let alone a global pandemic and quarantine. So, as much as possible, despite the changes… we choose joy. And we choose to laugh.
**Many of the scenarios include personal hashtags: from the most common – #LifeWithBoys, to the most sarcastic [playing off our secret parenting fears] #NotScholarshipMaterial, as well as special guest appearance by legendary grandfather, Ed Poole.**
Sometimes, things go neatly, nicely, and exactly as planned, and sometimes, Chase finds the scotch tape. #LifeWithBoys
The one explanation I’m never truly prepared to deal with…: “BUT DAD STARTED IT!”
My special child just told me what I was going to say to him and then informed me that he “just took your mouth right out of the words”. Parenting Chase is the best.
“How To Get Grounded Really Fast”, a brief drama in one act… Mom: “Aidan, it’s time for bed…” Aidan: “That’s so oppressive. Are we in a dictatorship? We need a democracy! Bed… ha!” [Aidan takes one look at his mother’s face and starts running] The End.
You know it’s not great when the answer to “What happened here?!” is “Well, I sort of picked him up, but then I might have accidentally dropped him…” #LifeWithBoys
“But why can’t we play hide and seek in the garage? We won’t use the drills or the hammer…!” #LifeWithBoys
Good morning to everyone except Chase, who – upon waking at the crack of dawn – promptly discovered a referee’s whistle.
“I AM A VERY PATIENT PERSON! I only get IMPATIENT when you make me WAIT!” #LifeWithChase
“You are one hundred percent NOT going into the light. Now get up off the floor right now and eat your breakfast.” #LifeWithBoys
“I just love you so much, but Mom, I’m gonna leave you now because, well, you really need your beauty sleep.” #PointsForHonesty
“I’m not saying that you’re a bad cook… But, I mean, come on… it’s not really five stars around here.” – child most likely to NOT see his next birthday
Quarantine, day 6,832… The boys have invented a game called “Box”. In this game, one boy upends a large packing box, covering two-thirds of his body (including his vision, of course), and the other two boys kick and punch the “Box” until it/he falls over into the grass. If you need me, I’ll be preparing for a highly probable ER run… #NotScholarshipMaterial
How to get grounded; the scientific approach: “Well, Mom, you said you’re going to keep an eye on me, but if it’s only one eye, then you should know that you’ll have very little depth perception which means…you might not be able to keep an eye on me at all.” #SchoolForTheGifted
“Mom, you know me way too well to think I’m going to be careful.” – Karsten “Know Thyself” Ewoldt, age 8 and holding #SelfAwareness
Chase rage-deleted every app on his iPad and Karsten is weeping on the floor because his journal entry on perseverance is -wait for it- “toohard“. Strongly considering just cancelling the rest of Tuesday. #LifeInQuarantine
“Well, I’m mostly done with math…partially done…sort of…I mean, I wrote my name at the top of the paper and that’s something, right?” -Chronicles of a Public Home School
“No! I don’t have to answer that question! Because unlike you, I already graduated from second grade!” – Chronicles of a Public Home School #ParentingFTW
Always wear clothes on video calls with your teachers. That is all. -Chronicles of a Public Home School
In case you’re wondering, my mom is a saint…
“Ladies, ladies, you’re all very pretty, so no need to fight about it.” -Darcy to her fighting brothers #IQuit
“You want me to actually go into the boys’ bedroom?” [tosses head] “Tell my story. Make it good.” #TeenGirlSquad #Drama
Me: “What have you done to help the household today?” Child: “I walked the dog!” Me: “Oh, good. Thanks.” Me: … Me: “We don’t have a dog.” Child: “THAT IS BESIDE THE POINT!” #QuarantinedForLife
Me: “Where is the only place you should put stickers?” Child: “Not on the wall, that’s for sure.” #LifeWithBoys #QuarantinedForLife
Chase: “I do not know who took Darcy’s last pack of polaroids and used them all up, but it probably was not me.” Also Chase: … #SmoothCriminal
“I was in labor with you for three whole days, so I think you can manage second grade!” #MotherOfTheYear
Child: “Do we have duct tape …and a screwdriver, oh, and also a hammer?” Me: “What do you need them for?” Child: “Um…probably nothing.” #LifeWithBoys
“I’m pretty much fluent now.” “But are you?” “Totally.” [speaks a phrase in Spanish] “So, your brother is your uncle and also a giant chicken?” “Exactly. Fluent, see?” #NoMaterialEscolar #TeenGirlSquad
Goodnight and goodbye, dear 2020 …I’d love to say we’ll miss you, but we probably won’t.
Moment by moment.
“The lines have fallen for me in pleasant places; indeed, I have a beautiful inheritance.”
