Lessons From The Second First Anniversary

You think I would know by now that another shoe drops with each piece of news… I have debated writing this all down because it feels like I’m being a drama mama, and yet, it feels dramatic because everything is traumatic when there’s been a terminal fight. So, it’s true that Chase’s brain and spine are in the clear for now, but it was next-hospital-day news that revealed there is something growing in Chase’s thyroid. We have been told that it’s probably not a big deal, and I want to believe that with my whole heart, even though I know IT’S CHASE. All the necessary teams are getting onboard and there will be more tests and more days spent in the hospital. So it’s probably nothing. But it could be something. But we pray it’s not. Welcome to the roller coaster. The only thing we can do is buckle up and cling even more and ever more to hope in the moment by moment. ❤️

Chase Away Cancer Facebook page, January 11, 2019

It’s cancer. And the total mind-twisting news is that it’s actually a good cancer. (Yes, the term “good cancer” exists.) But it’s still another cancer and it’s somehow inconceivable to me that in nine short years, this 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.

Chase Away Cancer Facebook page, January 29, 2019

It feels like I wrote these words seconds ago. I remember the pit in my stomach and the way it felt hard to breath. But it was a year ago now, and as I reflect on this crazy year of a second cancer, as we approach the second first anniversary of a diagnosis, there are three things that stay close to my heart, and so in honor of the struggle, I share them with you now. I hope you see yourself, see encouragement, and see hope in these words, for we are all in a fight of one kind or another:

  • At no point does pain reach a saturation point. In our experiences this last year, there has never been a moment when we thought, nor have we met anyone else who thought or said: “Oh, I have already experienced several years of pain and suffering, so it does not phase me as it once did. It is easier now.” Every pain is new like water on a parched ground, soaking deep and fast, and sometimes things hurt worse simply for the misplaced conviction that they should not hurt at all.
  • There is no modifier in a cancer journey. It isn’t “just” thyroid cancer, “just” stage one. There isn’t an “easy” cancer. Some are more complicated than others, some come with a higher mortality rate than others, but there is no easy cancer. Each comes with its complications, both physical and emotional. And in a disease where there is no justice, there can be no “just”. This is the broken world manifest in our broken bodies.
  • Make every moment count. I sign off every piece with the phrase ‘moment by moment’ and it stems from the edge-of-the-knife times when everything changes and the ground shifts beneath you. If I could take one thing from those first seconds of knowing, when the heart beats hard and everything in you falls and screams, it would be this: make the time count. Sometimes, I forget and am lulled, yet, how I long to keep it close even when my heart beats slow and all is well. Only the necessary. Only as needed. Always with grace. …moment by moment.

Because of the Lord’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness.

Lamentations 3:22-23
Friday, February 22, 2019 ~ one day after surgery

**On this past Tuesday evening, January 14th, Chase had another seizure, his first in six months. It was under five minutes long and he came out of it well and quickly, but he will be facing additional tests and labs, including another overnight stay in the hospital – all in the next month.**

Preparing For The Next Year

It is absolutely incredible to me that it’s been a whole year now since I stood in the hallway of the oncology floor with Chase’s doctor. 

“Did anyone call you?” She paused. “The results of the MRI were great. His brain and spine are clear.”

“Yes,” I remember saying. “We met with neurosurgery right after the scan.” And I remember thinking: another year – we’ve bought ourselves another year with this news.

“There’s just one thing…” the doctor said, casual and calm in the hall. Because it wasn’t a big deal. It really wasn’t. “The MRI picked up something in his thyroid. It’s most likely just a nodule, but we will get you set up with endocrinology for some tests in the next few weeks.”

January 2019

One whole year ago now. 

Diagnosis.

Surgery.

Tests.

Relapse/growth.

And finally treatment.

What a year!

But now it’s is a new year, a new decade, and Chase is hopefully turning a new corner.

The radioactive iodine will be a present force in his body for weeks and months yet, so it’s very difficult to define exactly what his status is in this moment, because he actively has active cancer, but he passively, invisibly has active treatment too. I suppose the best way to describe the fight he is in right now is with the picture of a muted TV. The screen is still on and the watcher is still completely aware of it, but cannot follow the details of the game/movie/show because it is silent. That is Chase’s fight right now. He is in passive treatment; an active fighter, the battle on mute, but completely still occurring. The only way we will be able to have a view into the fight will be through ultrasounds every few months, and lab work every four weeks or so – an important part of maintaining his thyroid medication levels, and an early warning system for anything else growing.

And on that same subject, Chase’s last labs showed numbers that reflected his fight in other areas. He had to discontinue his growth hormone shots when he was diagnosed, and his most recent labs confirmed what has been suspected about his little body for years now – it does not have what it needs to sustain an endocrine system long-term. And that breaks my heart because he’s a broken body in a broken world and I’m sad for the struggles he faces along the way – even as he braves them again and again – but for now, these pieces are also treatable. 

So, we will treat him and care for him with careful monitoring and daily injections – giving his body the best chance it has to thrive.

December 2019

And none of it individually is hard or horrible, but altogether, it makes all of us a little weary because it’s the price of doing business as broken bodies in a broken world and our hearts long for the day of healing when we can see Jesus face-to-face and can be free of things like cancer and tears and poking with needles again and again. 

And until then, we keep breathing because there will always be hope and purpose in the journey. Thank you for doing another year with us on this road.

Moment by moment

“God is always doing 10,000 things in your life, and you may be aware of three of them. … There is no power in the universe that can stop him from fulfilling his totally good plans for you.”

John Piper

“I know that you can do all things, and that no purpose of yours can be thwarted.”

Job 42:2

Of Procrastination, Sarcasm, and Staying Out Of The ER

Incredibly, 2019 is down to being measured in hours and minutes – the end of both a year and a decade. This year has seen us through many, many new things 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. And to that end, I’ve compiled a few status updates from my Facebook page.

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 and hospital days and the simple act of processing it all. 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 a few guest appearances by legendary grandfather, Ed Poole.

Did you just hit your brother in the [inappropriate content] with a roll of wrapping paper?? #FaLaLaLaLotsofTherapy #LifeWithBoys…but make it Christmas

HOW MANY TIMES…

  • …have we talked about not licking the walls?
  • …have I told you to keep your ever-loving eyes open when you’re running??
  • …that punching each other is not a viable communication technique?
  • …that your dirty socks don’t magically clean themselves in whatever god forsaken corner of the house you left them in?
  • …that you can’t FaceTime me to fix you a sandwich? Ever?
  • …that your can’t wear shorts when it’s 30 degrees no matter how much it breaks your heart?
  • …that your life isn’t over even if you can’t get your armpits to make fart noises?
  • …that if you don’t wear underwear, you might catch something in the zipper?

“I have a question, Mom – if that even is your real name…” #LifeWithChase

“Here, Mom. I got this paper a week ago, but I accidentally left it in my back pack and it has to be filled out by tomorrow, so, you know, you should probably look at it now…” #LifeWithBoys

“You know that’s not true! I would never hit him in the — wait, can I go back and try to say it again with a straight face?” #LifeWithBoys

“Oh my word, boys! If you don’t stop it right now, somebody’s going to get hurt!!”

[awkward crickets]

“Uh, that’s kind of the point, Mom.”

Hi, yes, we are handling football season very well over here… how are you…? #NoFightingLater #NuancedFierceLooks #NotoriouslyFlamingLambeau #NaughtyFlatulentLads

“Don’t worry, Mom. I won’t be tempted to talk to you while I’m doing my math homework. It’s not like you can help me with it or anything.” #TheOGNotScholarshipMaterial #SchoolForTheGifted

“I am in so much pain.”
“Are you really?”
“I think I tore something in my knee.”
“Probably not.”
“Okay, but I’m almost sure I tore my ACL.”
“No.”
“Everything is torn.”
“Still no.”
“Well, for sure my heart is broken.”
“No, just no.”
“Can you sprain things? Am I sprained?” #TeenGirlSquad #DramaticEmphasis

When Bob is on the West Coast for a few days… Also, that raise. For real. 

“But why do they call it a seizure salad? Seizures are not delicious.” #ItsAMedicalLife

[overheard in the house where no doors have been changed in three years] “I didn’t know there was a door right there, and now my head hurts.” #NotScholarshipMaterial

Meanwhile, on Instagram, there are orange socks of protest.

Buy one bottle of “super disgusting” Watermelon Cucumber Lemonade, and suddenly, I’m the villain of the piece. Psh. Troglodytes. #LifeWithKids

Amen. Let us close in prayer. 🙏🏻#MondayMotivation #InspirationalQuotes #LifeWithBoys

Where do I hand in my resignation, please and thank you…? #MondayUNMotivation

“What if I put a pillow in it?”
“Nope.”
“…even if I wear a helmet?”
“Um, super no.”
“But it’s just one flight of stairs!”
“No!”
“…in a box!”
“Son!”
“But it’s not like we’ve got priceless artifacts on the walls.”
“You’re grounded forever.”
“Well, you’re a crusher of my dreams.”
“What was our ONE rule for Spring Break…?”
“I know, I know.. ‘Mom’s Not Taking Anyone To The ER’…”
“Right.”
“For the record, you never let us do anything fun.”

“Mom, wanna see a magic trick? Um, but also, it kind of includes fire… are you okay with that?” #NotScholarshipMaterial #LifeWithBoys

“I’m sorry he hurt you, but I think that’s the price of doing business when you punch him in the [inappropriate content], child.” #WhyWeDontHaveFriends #WhyWeCantHaveNiceThings

“We’ve been over this before… NO, you may not change your legal name to Aaron Rodgers Ewoldt.” #LifeWithAGreenBayFan #SendHelp

[yelling] “OKAY. HERE IS THE RULE OF THIS FOOTBALL GAME: IF YOU BREAK ANY BONES, THAT IS A FOUL.” #JonesinForTheER

“What? He tried to take my sandwich!!” – explanation for baby brother’s black eye #LifeWithBoys #KnuckleSandwich

“I think my pancreas hurts.”
“Do you even know where your pancreas is?”
“Wait, that’s a real thing? I thought it was just a made up word! I was just messing around!” #TeenGirlSquad #DramaSpleen

“But we’re trying out my new helmet!” #HeadCase #LifeWithBoys

That feeling when you’re super happy to be out of the hospital, but you’re also a little worried about your ride home… 🤣#TheLegendaryEdPoole

“I know you’re enjoying the battle, but can you die quieter? You don’t want to disturb the neighbors.” #LifeWithBoys

Goodnight and goodbye, dear old 2019 …

Moment by moment. 

“The lines have fallen for me in pleasant places; indeed, I have a beautiful inheritance.”

Psalm 16:6

Of Happy Holidays

We did not ask for this year, but we do not resent it being given to us either. Sometimes, life is a struggle, but then it settles to pleasant places and we realize that these journeys we take have been destined for our good – to give us a future and a hope – all along.

The last twelve months have held all that you would expect them to hold in a family of six – church, jobs, writing, speaking, school, orchestra, band, plays, student council, sports, and more. But in perhaps one of the most surprising and yet unsurprising turn of events this 2019 (something you all already know if you follow CAC), Chase was diagnosed with a second cancer. It started in his thyroid, but has moved into his lymph nodes, and as of November, they are monitoring his lungs and kidneys as well. There have been surgeries, procedures, treatment, and seemingly endless days in the hospital. There have been tears and anger mingling with the joy and laughter, and over it all, the whispered prayer continues on: “Lord, please use this to strengthen and not to break.”

We are overwhelmed, yet God is faithful.

We are tired, yet God never sleeps.

We grieve, yet God takes the pain and gives hope in its place.

And isn’t this why we mark this Christmas-time, life-long celebration? The moment that tiny babe drew breath in a barn cave with the animals all those thousands of years ago, the war was won. Hope will always win because God’s love is greater still.

Choosing hope.

With all our love – moment by moment…

The Ewoldt Family

[Bob, Ellie, Darcy 13, Aidan 11, Chase 10, Karsten 8]

Find us all year:

  • www.chaseawaycancer.com [don’t forget to subscribe when you visit!]
  • Facebook: “Chase Away Cancer” or “Ellie Poole Ewoldt”
  • Instagram: Ellie Poole Ewoldt

[Photo credit: Margaret Henry Photography]

Of Numbers and Joy

There are rare and wonderful species of joy that flourish only in the rainy atmosphere of suffering.

John Piper

This year, he doubled his digits, and he doubled his diagnoses too. 

With his own eyes, he witnessed the celebration of the Super Bowl in Atlanta.

With his own words, he told his story to the Vice President of the United States in Washington.

With his own body, he’s gone swimming and running and laughed and played. 

And with that same body, he’s wept and known fear and exhaustion and pain.

He’s had 1 surgery, 2 full body scans and biopsies, and 3 ultrasounds in the pursuit of this, the second cancer. Which means that he’s been under anesthesia close to 10 times this year.

He’s had 1 round of treatment, 2 documented instances of spread/relapse, and what feel like limitless amounts of blood drawn from his body.

He walked back into the world of seizures – for the first time in 7 years – and had to face down the fear of a potential brain cancer relapse.

He’s had MRIs, CTs, and X-Rays to spare. 

And if I counted off the days out of the last 365 that he spent in the hospital, they number about 60. …that’s more than once a week.

Those are the days alone. But if I counted the actual appointments, the number would close to triple. 

It’s been one of the most extraordinary years of his short life, and so it’s perfectly fitting and perfectly amazing that your response to his year and life was equally extraordinary. 

Dear ones, in your celebration of Chase, you raised almost $5,000* in a single day! 

You are incredible. 

And I love that – because of your many, sacrificial, encouraging, ‘happy birthday’ gifts to the Rizzo Foundation on behalf of Chase – more help will walk the halls of the hospital, more tears will be dried, more smiles will be felt, and more end-of-their-rope parents will be granted more rope and easier breathing in the worst seasons of life. 

This is all you, dear ones, and we are so proud of and thankful for your extraordinary response to our extraordinary Chase. 

Thank you for faithfully, joyfully, compassionately walking this journey with us…

Moment by moment.

**If you haven’t had a chance to give yet, you’re not too late! Simply click HERE to donate now!**

*As of 8:20AM (CST), we are at $4,950!