Tag: cancer

Eight Years

Ever since 2012, July 31st has been the hardest of lovely days to us because it ripped us apart and then stands to remind us every year that we are all still breathing. Because eight years ago, on July 31st, an emergency room doctor was walking into Chase’s room with tears in his eyes, speaking the words over us that changed everything:

“There’s a large mass.”

Tuesday, July 31, 2012

A few days before this strange anniversary day, Darcy and I were walking, trying to carve out a minute to ourselves, talking through the date, the memories, and how it still – even these eight years later – carves us open. [She, this sister girl child that we -perhaps foolishly in our own fear- told to stay in her bed in the dark, is a fourteen year old high school freshman and the sight of flashing lights outside her bedroom window as she curled powerless and scared still hold a vivid place in her mind.] But as Darcy and I walked, talked and processed again, Margaret pulled alongside us. She literally pulled alongside us in her car as we walked and she drove by and as we talked, friend Margaret, a wonderfully gifted photographer, smiled and said lovingly:

“We should take pictures. Eight years is a big deal and we should make it special this way.”

And so, a day later, we gathered at the local park, just Margaret, the kids, and me, and she walked them through a few minutes of life, with her words giving them grace and her camera catching them as they moved. 
There were no showers, no hair cuts, no scrubbing up and making beautiful. Chase insisted it be “Cubs theme” and we just grabbed (hopefully clean) clothes out of drawers and went with it. 

And suddenly, the shadow of late July lifted for a moment. We put aside the awful memories we experienced those eight years ago, and lived in the joy that is having eight whole years when you didn’t think you’d have any. 
The perspective changed through the lens of a camera and a moment of stolen time.

We see the heartbreak, yes. Always.
But we choose joy. 

And sometimes it takes someone pulling alongside you to catch the light a certain way and hand it to you when you need it most. 

So here’s to eight years.
I will never stop being both horrified and amazed at this life of grace we’ve been given.

“Whatever may pass and whatever lies before me… let me be singing when the evening comes.”

10,000 Reasons (Bless The Lord), Matt Redman

Thank you for walking alongside us, dear ones. 
Moment by moment. 

[Please enjoy these beautiful, candid gifts that Margaret Henry Photography gave us this week ]

Super Heroes And Scars

This last week, I had an opportunity to teach in Chase’s class. As we talked about narratives, he sat quietly, drawing his heart onto a blank sheet of paper. The story would shape into a super hero boy whose mom would not let him save the world until he cleaned his room.

“Are you saying that the world would be a safer place if you never had to clean your room again?” I asked him with a smile.

Eyebrows lifted, mischievous face in full bloom, he grinned. “Of course. It’s bad for the world when I clean.”

But then he pulled me aside and his voice was a gritty whisper of sadness as he asked me. “Do they know I have hearing loss?” This is something Chase does often. Despite it being a reality for the better part of his decade, Chase fights his hearing loss and is still tempted to treat it like a dirty secret, even when obviously wearing an aid in school. I’ve watched him feel shame about it, and frustration too. In fact, it’s one of his big three – “The H’s” – height, hair, and … hearing loss.

We remind him how brave he is. 

We remind him how hard he’s had to fight for those scars of loss and how proud we are of him.

We remind him that they are a precious part of him, but need not define all of him.

And yet, he struggles. 

Until last week.

Last week, I got to see an incredible change in Chase regarding his hearing loss. For the first time in as long as I can remember, I saw pride. 

This joy-filled confidence came about because he, as a fourth grader, got to walk into a second grade room and be physical encouragement to a new second grader who had just started wearing a hearing device and was doing a presentation on it for her class.

How brave is the precious eight year old girl who stands for such things?

And how brave is the precious ten year old boy who stands with her and says ‘You’ll be okay because I’ve done it and I’m okay too”?

After all this time, and all the affirming words and normalizing exercises, I finally saw Chase most proud when he was able to use his disadvantage to someone else’s advantage. He became most heart-full when the very scars that bother him became someone else’s encouragement.

And I hope you hear the truth underlaying this story and that you can hold it close to your own heart even today. 

Your struggles are not in vain.

Your pain is not without purpose.

Your weakness may very well be your greatest strength. 

Because, Dear Ones, when it comes to the story God has for you, the pieces that fall into place are never in error, even if we don’t see how they work together. You are in the middle of your story for a reason – “for such a time as this”. 

Moment by moment.

“God comes alongside us when we go through hard times, and before you know it, he brings us alongside someone else who is going through hard times so that we can be there for that person just as God was there for us.”

2 Corinthians 1:4 (Message)

For privacy purposes, I will not share the school where this was taken, the hearing teacher who took it, or the two other children in the original frame, both with hearing pieces wrapping their ears or devices around their necks. But I can tell you that the joy on their faces is beautiful, and I can share Chase’s smile with you as he stood alongside them.

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 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!