Waiting Well

Up until 5:30 on November 2nd, I could have told you Chase’s appointments and the general expectations through the end of this 2021 year. Everything was laid out…scheduled… neat, even. (…as much as we ever get with Chase)

But on November 2nd at 5:30, right as I was in the kitchen making dinner, I got a call from the oncology team, the result of which was that Chase needs more blood work and an MRI of his liver and kidneys. 

Dear ones, it’s a long and complicated explanation full of damages and inexplicable issues, and I’m sure everything will unfold at some point, but suffice to say that there is a chance that his liver is struggling through transfusion-related damage. And while they’re looking at his liver in the scan, they want to look at his kidneys too, because there is a noticeable growth there.

It’s more than possible that this is just a precautionary measure, and the growth is benign, but the news definitely surprised us. And honestly, it’s hard to hear that anything is growing in or on Chase – ever. 

Since that phone call, our minds have gone a hundred places and our hearts beat a rhythm of post trauma. And if I’m being honest, I’ll probably continue to vacillate between “don’t be silly, it’s nothing!” and “they said the spot in his thyroid was nothing too” until the tests are done and read. 

And that, oh that… that done-ness is a ways ahead of us yet. For reasons that only God himself knows, the earliest scan date is December 21st. So we will move through the holidays, through Chase’s birthday, through these next weeks in a season of more-than-usual waiting.

How we long to not just survive the wait, but thrive in the wait – to truly wait well.

The Saturday morning before I received the call from his team, I took Chase for early blood work and it was freezing, rainy, and dark. When I voiced worry and weather-complaining words, Chase said this, and it feels timely: 

“Mom, don’t worry. Jesus has lighted our way in the dark. He will do it again. It will be okay.”

And really…there’s no better reminder: He is light in the darkness and peace in the wait. It is well with our souls and our wait.

So we’ll sit with this a while longer…

Moment by moment. 

While my plan is to keep a chipper attitude and show God that I am a good student so he will bring my waiting to a close, God wants something even better for me. Rather than end my waiting, he wants to bless my waiting.”

Betsy Childs Howard, Seasons Of Waiting
[Chase wearing my glasses to make us laugh]

When Easy Is A Lie

Two years and a lifetime ago…

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.”

Psalm 43:5a, 42:8a

Of Tornadoes, Good News, And Too Many Cancers

I remember the August 10th day specifically because there was a bad storm. It was hot, humid, and dark the afternoon a summer thunderstorm hiding a tornado ripped through our suburban town, taking trees and power and the downtown church steeple along with it. 

Our family packed bags in the dark and went to stay somewhere with electricity and internet, but I remember the date because it was the first time I saw Chase’s bruises.

That night, at the grandparents’ house, as I bent over Chase to inject the growth hormone into his upper thigh, I realized that there were small purple and black marks along his white skin – almost as if the nightly injections were causing injury. If they were on his shins, I might have looked to his brothers, because young boys are always running into and over things, but these were up too high, too far away from regular contact areas.  

So, the next day, I spent long moments on the phone with multiple hospital teams. And somehow, in the next few weeks, they changed the injection medication and checked all the other medications from every other discipline he sees. But nothing matched, and Chase began to lose weight, complaining of stomach pain all the time. 

All of the gastro tests came back fine, and then the preliminary bloodwork for blood cancers came back fine. And we talked about other, more invasive options for testing, but it seemed like there was too little to go on. So we waited.

For two months, we waited

It turns out that sometimes time proves to be its own answer. Because the longer the bruising lasted, the more worrisome it became, simply for continuing. Not the worrisome of a terrifying specter, but more that of a niggling doubt – the quiet “what if” whisper that keeps you up at night. 

So, after two months, the teams finally scheduled Chase for a bone marrow biopsy. It was time to conclusively rule out things like blood cancer, marrow cancer, and even the possibility that the thyroid cancer still tucked into lymph nodes around his throat had found his bones too. 

And on Friday afternoon, Chase’s preliminary results were released…

He is clear of these scary cancer pieces and we are so thankful.

After two months of no answers, we now know what it isn’t – and with a child like Chase, that is a big victory. So, for now, we are watching Chase’s diet and skin very carefully. Lab results show his nutrients are near perfect, despite his weight loss, and we continue to work with his teams to take care of him and make the best of whatever this is – secure, for the moment, in what it is not.

So, after two months, it would seem we can finally take a deep breath, finally just settle down to another school year, and time with the family, and just being…

However, on the day of Chase’s biopsy, the doctor performing the procedure came to speak to me while he was in recovery – two days before we found out his results. “Have you had that mole along his spine checked?” Her face was quite serious. “I don’t want to alarm you, but that is right along where he was radiated and I think you need to get it checked as soon as possible.”

Oh, dear ones, so, it would seem that we put one round of cancer concerns to rest only to begin another on Monday afternoon when he sees his oncology team with a dermatologist. And yes, skin cancer does not hold the deep fear of bone or blood cancer, but when I told Chase, he scrunched up his nose with a little growl and said; “too many cancers”. And he is not wrong.

When the doctor left the procedure room after telling me to check his skin, I actually laughed, not because it was funny, but because coming out of the operating room on an exploration for leukemia and worrying instead about skin cancer felt utterly ludicrous to me!

There simply aren’t words in this language to express the sheer insanity of this cancerous journey we seem to continuously be on. It is horrific, which is why we acknowledge research efforts, awareness months, and so many stories around us.

But Chase’s journey is also precious because he lives and the story has never been so clearly and apparently out of our hands. He could have been totally healed a hundred times now, and he could have been gone at least a dozen times I can think of in the last decade, and yet, Chase is still here and the journey continues. And I don’t know the reason, but I believe there is at least one, if not a hundred…or ten thousand.

So, yes, it is “too many cancers”, but nothing is “too many” for our loving Father. 

Purpose in the journey…hope along the way…choosing thankfulness with defiance… moment by moment. 

“You saw me before I was born. Every day of my life was recorded in your book. Every moment was laid out before a single day had passed.”

Psalm 139:16 (NLT)
Chase at the beach

Weeds and Worry

There is a patch of dirt that lies under the front windows of our little blue and brick house. It borders the sidewalk that runs from the door to the driveway and in this place, beneath the shallow layer of dirt lies very old concrete. And on top of the concrete are small landscaping stones long buried. Very little grows in this small place besides weeds. The weeds come every year no matter what I do, and they drive me a little crazy, because I like things clean and neat and orderly – especially when life feels anything but… 

So each summer, sooner or later, I can be found on my hands and knees on the front walk, shoveling mulch and declaring war against new weeds. 

This summer, not so very long ago, I was in the middle of my little war, hands stiff and crusting with that dried dirt feeling, when Chase came over to me.

He was out of breath from riding his bike and he doubled over next to where I crouched, his hands on his knees, arms stiff. 

“Why are you worrying about this, Mom?”

I was not into this parenting moment, my voice pulling short like the torn roots in my hands. “Because, Chase.” 

I reached for another weed, trying not to think about how tired he sounded from a normal activity, how white his skin looked despite the warm sun that should make it rosy from exertion.

“Mom…” His small hand landed on my shoulder then. His voice too old for his body. “Mom, don’t worry about the weeds.”

I can never resist his heart to reassure, my own melting at his words even as I stubbornly fought to explain. “Chase, this is part of my job…part of how I care for our house and our family.” 

Could he not see how much I needed just one thing to be right, to go right, to line up in that moment?

He shook his head. “But Mom, sometimes there are weeds in life and it’s okay. Don’t worry about them. Just take a deep breath. It’ll be okay. Don’t worry about the weeds, Mom.”

Sometimes things aren’t the way we want them to be. The dirt patches of life feel too small, too clogged, too messy.

We toil and weep and things still crop up over …and over again.

Like weeds…

Like fear… 

Like doubt…

It’s easy to get on our hands and knees over these places; to obsess. 

But as Chase said… it’s okay, dear ones. At the end of the day, these weeds are a futility and not the ultimate focus. So weep, but don’t obsess, because there is a better rest to be had. Get up off your hands and knees and give the uprooted pieces to the One who can handle them better, best and forever …and take a deep breath. 

Do you feel His hand on your shoulder?

Moment by moment. 

“But when I am afraid, I will put my trust in You.”

Psalm 56:3 (NLT)

**On Wednesday, October 14th, Chase will be undergoing a bone marrow biopsy. Thank you for your prayers, dear ones. MbM.**

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