Tag Archives: grace

The Story of 2014

Once there was a family of six: a handsome father, a redhead mother, a sole princess girl, and three little wrestling and running boys.

The handsome father, he worked in two places – one a large company, the other a church.  In both places, he worked with numbers… lots and lots of numbers.  In the free moments, you would find him completing a half marathon, quiet with a book, or very lately, working in his new garage.

The redhead mother spent the days holding the pieces together… pieces of laundry and food and school and sometimes, yes sometimes, even silence.

The sole princess girl, just a second ago a babe in arms, was suddenly eight and tall, and already a fast runner.  She was never so happy as when she was running… just like her father.

The oldest of the wrestling boys was five, nearly six, and started wearing glasses to see, which made him look wise.  He began the school journey and stretched his legs at running to try and beat his sister, and if he could, would choose to be buried under a gigantic mound of Legos forever.

The middle boy, with his lightning scar and white head, also began his school journey, but with special help and the fulfillment of his special wish… to ride a bus.  He continued, at every turn, to live up to his name and found his way through life in a never-stopping, never-settling way.

The baby boy, a baby no more, stood nearly as tall as the middle boy, with wide shoulders and stance that spoke of having older brothers and being ready and willing to throw the first punch.  And yet, he would sit quietly with a book for the longest time and everywhere he went, he looked for horses.

This family of six were wanderers.  They left their tiny space when the word “cancer” was first spoken and lived with grandparents for help as two years came and went.  They decided to sell their tiny space and pray for more room close to everything held dear, and the tiny space almost sold three times and they prayed for wisdom to know… and then the tiny space, their first little home, sold and they were led to the perfect little blue house near everything held dear and so, wanderers no more, they moved and settled in the early Fall as the leaves began to change.

And in the first hours of owning the little blue house, the call came that something was growing again under the lightning scar in the white head… and the family stopped and prayed for moment-by-moment grace to find the joy in the every day as they waited six weeks and checked again, and then six more and again.

And by the time this story rests in your hands, another check will have come and gone and a course of action will stand in front of the family.  But they put aside the fear and in grace, choose faith and yes, even joy for their family and their boy, and the root of it is found in this season and in another little boy, born thousands of years earlier.  This stable-born boy would grow to be the Savior and Lord and, bloodied arms stretched wide, would triumph over sin forever and ever, and make a way for death to have no victory or sting, and in this boy-turned-forever-King, there was and is hope and joy, and in this the family of six, in their little blue house, rests secure.  They hope and pray the same for you.

[This is the text of the Ewoldt Family Christmas letter that was mailed in early December, 2014 – Thank you for walking this year with us…moment by moment.]

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Stable

In pre op waiting for the MRI to be available so Chase could proceed with anesthesia

In pre op waiting for the MRI to be available so Chase could proceed with anesthesia

After a very long day that included an inner ear procedure, waiting over an hour for the MRI, almost three hours under anesthesia, and a painful peripheral IV in the arm (instead of accessing Chase’s port), we received an early, unofficial word from the hospital last night: Chase’s MRI results were still being read, but there was no evidence of new tumor growth.  However, there was still a question about the areas of fluid retention and cavernomas (effects of surgery and radiation)…

Removing the painful IV

Removing the painful IV

This morning, we received the second and final call.  The official word is “stable” on all fronts!

There may have been some very minor changes to the cavernomas, but nothing of concern at this point and the areas of fluid are virtually unchanged.  We will have the chance to view the MRI and discuss all of this more in depth next week with Chase’s neuro-oncologist and his neurosurgeon in his routine follow ups.

Taking vitals in post op recovery - and getting to eat for the first time in 9 hours!

Taking vitals in post op recovery – and getting to eat for the first time in 9 hours!

Praising God in awe.   Some days, I still can’t believe Chase has survived 21 months after an advanced AT/RT diagnosis.

Thank you again for your prayer and encouragement as we take this…

Moment by moment.

In the car, on the way home. A long day for a very brave boy.

In the car, on the way home. A long day for a very brave boy.

Looking For Still Waters

Monday
With a long but encouraging clinic day behind us, I gently lifted Chase onto his hospital bed. We had just finished several rounds through the halls on the tricycle and he was finally ready to rest. After chasing him with a rolling IV poll and protecting/pleading for caution with his central line, I was also ready to rest. As I lifted him, his face contorted in pain and he let out a warning scream -I’d seen it a hundred times at home- the line was pulled tight and the IV tubing stretched from the pole to his chest. I quickly gave it slack and laid him down. He’s an active boy – this happens all the time.
Then he contorted and grabbed his chest, still screaming and crying – this did not happen all the time. With an all too familiar feeling of dread, I raised his shirt to see dampness around his central line dressing. Not again, please, not again.
The doctors and nurses confirmed what we feared. The line had been partially pulled from his chest when the IV tubing caught on the pole. With his new central line -a port- this wasn’t the same problem it would have been, say, two weeks ago – just remove the damaged needle and put in another one. The main features of the access are protected under the skin. It would have been so easy but for the chemo. There was chemo infusing when the needle moved and a particularly vicious one at that. Known for harming tissue and muscle; there was a small but very real chance that instead of going into the vein, the damaged needle had spewed this poison into the muscle around it.
For several hours, there was an intense spiral: immediately discontinue use of the port….apply ice…had we heard about the antidote?…IVs needed in his hands to keep him hydrated…surgery for a temporary line in the morning…and on it went. The door to our room was a constant portal to more poking, prodding, and bad news. Please God, no more
In the early afternoon of Tuesday, for the second time in about 24 hours, Chase was taken into surgery to place a temporary line. Moments before he went into the operating room, I received a text saying that a friend of our dear friend would be the nurse on duty in the room. I can hardly explain the encouragement it is to send your child into that cold, dark, unconscious place with a familiar face and friend at their side. A blessed moment in the chaos.
Despite the completed access surgery, there will still be more unfolding consequences of that malfunctioned needle. His hands are bruised and scarred from all the IVs, both failed and successful. He shows signs of the broken trust that comes from hours of people touching and hurting as they’re trying to save your life – anytime someone enters the room and greets him, he screams “No!”. The port must be left alone for at least a week -maybe two- to guard against the chemo damage, and when he leaves here, with his temporary line (in his upper arm…again), we will have to vigilantly continue to watch for the signs of that wretched drug doing its harm.
The irony of these last two days is that when you’re first given your child’s diagnosis, you expect that horrifying knowledge to be the all-encompassing stress and grief. In this moment, I can assure you that -at least in our case- it’s the little things, the daily, the back-and-forth, the multiple procedures. Those are the things that kick you when you’re already down.
But…
In this moment, he’s laying on the bed sleeping peacefully. …snoring, actually. His punctured, bandaged and tubed arm propped on pillows. His mouth relaxed from its pained expression.
Peace.

“He leads me beside still waters. He restores my soul.” Psalm 23:2b

Moment by moment.

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Catching Up On Perspective

As I break my non-blogging streak and think about the last several weeks, I find myself reflecting on perspective.  I will get to that in a minute…

On March 25, Chase had his ear surgery.  We don’t yet know how successful it was (he will have a follow-up hearing test at the end of May), but as we sat in post-op, he turned to me and said “Mom! I can hear!”  I cried.  His expressing this was all the more amazing because we had prepared him for putting tubes in his ears, but we didn’t set him up for any results.

That moment in post-op

That moment in post-op

PoisonWe finished four days of chemo on Thursday of that same week and just as we were so close to discharge that we could practically taste it (if hospital discharge orders were something you could eat), Chase spiked a fever and we had to stay for several more hours until the staff could better understand the cause of the fever.  Such are the hazards of having a central line.  We were finally discharged late that evening.  Chemo

Because we had spent those extra hours getting blood cultures and antibiotics started, when Chase spiked another fever around 3:00AM on Friday morning, it resulted in a simple phone conversation with the (incredibly gracious) oncologist on-call and not a summons to the emergency room.

That Saturday (the day before Easter), Chase again spiked a fever and by this time, his Thursday cultures needed to be redone and so we were sent to a local emergency room for blood work and more antibiotics.  A small part of me wondered why he never seems to get fevers in the middle of the morning.

Chase was mercifully discharged from the local ER around 12:30AM and we all got some sleep and were fever-free enough to go to church together on Easter Sunday morning.  One word: glorious…and refreshing…and encouraging (Okay, more than one word…because it really was that precious).

Happy Easter

Happy Easter

As we drove home from church, I glanced at my phone’s call log and saw the (way too) familiar area code…I had just missed a call from the hospital.  “There was a bacteria found in the culture from last night.  It’s in both lines and it’s growing fast.  I’m not saying you have to drop everything in this moment, but we need you to get Chase here sooner than later…and make sure to pack…you’ll be here overnight.”  …and just that quickly, the holiday was over.  We’d managed to stay out of a hospital for a whole twelve hours.  As we pulled out of our driveway minutes later -still in our Easter finery with our hastily packed bags- and we waved goodbye, I felt a weight descend…it shouldn’t be like this.

In the ER on Easter

In the ER on Easter

Chase cleared his infection (the origin of which was never completely known) and we were discharged within a couple days as he had no more fevers.  In fact, he was the only one in our family who stayed healthy as all the other kids went down with a high fever virus that lasted for several days.

During the same period, Chase’s counts dropped from the chemo and we were back in the day hospital for transfusions.  Chase was in isolation, but did have the privilege of meeting Chicago Blackhawks captain, Jonathan Toews.  Chase tried to offer him a basketball.  To Toews’ credit, the professional hockey player was very gracious.  That same day, the son of a dear friend was in surgery at the hospital.  Putting aside a long story for another blog full of interventions and orchestrations; if we hadn’t been there for transfusions, we would have missed a great moment to serve and encourage our friends.

Meeting Jonathan Toews. Note the basketball in hand. :) [photo courtesy of the Chicago Blackhawks Facebook page]

Meeting Jonathan Toews. Note the basketball in hand. :) [photo courtesy of the Chicago Blackhawks Facebook page]

Transfusions complete, we waited for days…just waiting for Chase to get hit with the virus that all the other kids had.  Then, we got a call from his nurse saying that they were all surprised to find out that he’d recovered from the chemo much sooner than expected and he didn’t need any more transfusions.  Translated: we could stay home and rest.  The worst of the cycle was over.

We rested all week and then returned this past Tuesday for the big, under-anesthesia, check-the-whole-brain-and-spine MRI.  After three months, was the cancer still staying at bay?  Would there be a recurrence seen in the pictures?  No.  We have yet to discuss the scans in detail (we will see the pictures on Monday in clinic), but the bottom line was this: things look good.  Chase’s attending neuro-oncologist said that this is what is hoped for and desired.  Another clear scan.

…and to this day, Chase still hasn’t gotten sick.  The doctors believe that the antibiotic he was on for his line infection protected him from all the germs in our house.

So, if we hadn’t had the fever before we left the hospital, we wouldn’t have been able to stay home on Friday, and if we hadn’t gone in on Saturday night, we wouldn’t have been able to be in church on Sunday morning, and if Chase hadn’t had the line infection (which caused us to miss part of our Easter holiday) at all, he would never have been protected from the flu and pneumonia in the house.  …and if he hadn’t needed transfusions, we never would have been  there for our friends and been able to connect with some really cool Blackhawk fans.  Some correlations are more obvious than others and for some things (like the scan) there is little correlation at all; just joy.  But for the rest: perspective.  This season continually reveals to me that what seems sad and wrong often leads to visible grace and beauty.

As I look back on these weeks, how will I choose to remember them?

“All around

hope is springing up from this old ground

Out of chaos life is being found in You.

You make beautiful things.”  -Gungor

Moment by moment.

Dinosaur Poop And Life Lessons

This morning, a couple volunteers stopped by our room to check in. One volunteer brought blocks for the bed-bound, wiggly Chase, and the other volunteer brought a chunk of poop.
Yes, it’s true! This volunteer is a retired archeologist from The Field Museum who brought a chunk of fossilized dinosaur excrement for the kids to see and touch.
As I held the brownish rock in my hands, I turned it upside down to view the smooth, polished surface of a man-made cut. Imagine my surprise at seeing what looked like a beautiful crystal inside!
Given time and refining elements, something that was complete excrement is now a thing of beauty.
Call me crazy, but I suddenly felt like I was holding cancer in my hands… This life season that feels like nothing but poop, will in time, polished by the elements and circumstances, become beautiful.
I laugh at myself gathering deep insights from waste, but I am in awe of the timely reminder over the hospital bed.
Moment by moment.

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Days With No Answers

There are some days that I long for answers.

After being re-admitted to the hospital in Sunday’s early hours, Chase is driving me to that place. Why are the fevers so high when he still had white blood cells? Why is he so visibly ill when his tests are coming back negative? Why is his blood pressure so low ….does he need platelets …does he vomit even after anti-nausea drugs …why, why, why??

It’s days like today that I hear Tennyson in my head:

“Theirs not to reason why, theirs but to do and die…”

Is that the reality? To do and die?

Even as I question, I am reminded of the verse in Jeremiah:

“For I know the plans I have for you, declares the LORD, plans for welfare and not for evil, to give you a future and a hope.” (Jeremiah 29:11)

If this life is full of God’s plans for me that give both a future and a hope, and I’d prefer not to face it like one of the six hundred riding silently to death, I ask myself…how should I respond to weary days with no answers?

Give thanks.

Give thanks even when it hurts. …when it aches …when there is no human reason for the pain and suffering.

“Give thanks in ALL things…” (1 Thess 5:18)

So this is my answer for today. I may not get the answers I crave for the child lying in the bed, but believing that whatever my God ordains is right and for His glory and my good can free my burdened heart for thankfulness.

Moment by moment.

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Of Spinal Fluid And Really Good Days

Heart in my throat, I looked at the doctor standing masked and gowned by the foot of Chase’s hospital bed. “Have you heard anything on the spinal fluid yet?”

Slowly, she lowered her mask and I could see her huge smile…“Yes. The fluid was negative.”

In shock, I asked her if she was sure it was Chase’s fluid as Bob laughed quietly from his place across the room.

Chase’s spinal fluid–this fluid that has been positive for cancerous, atypical and abnormal cells from day one–is weird cell FREE!

There is a cautious moment to this, as it does not mean that Chase is cancer free.  The true State of Chase is something that will be unknown for a while, hopefully only until his evaluation at the end of the month.

There is still a long road ahead for this little one. He’s only 14-16 weeks through a 51-54 week chemo protocol … Encouraging news to the little boy who burst into tears as he thought clear spinal fluid meant no more “fishy hospital.” (Oh, Chase…)

So, as I’ve written many times, we don’t know what’s ahead, but …
Today was a REALLY GOOD DAY.

Whatever may pass and whatever lies before me, let me be singing when the evening comes. Bless The Lord, O my soul!

Moment by moment.

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What’s Next?

We have had the most wonderful break over the holidays!  In truth, the longest break Chase has had since being diagnosed.  We’ve completed 14-16 cycles of chemo and 30 days of radiation.

So, now what …?

At the end of January, there will be an official evaluation to determine whether this treatment is working.  Right now, Chase’s brain is still too swollen from radiation to be able to get a good “read” on how things look.  However, we will have a small preview of the direction things are headed…

On Monday, Chase will be admitted to the hospital for three days of chemo which get started with a spinal tap and interthecal chemo (they inject it into his spine).  When they inject the chemo into the spine, they also remove a small amount of his spinal fluid and test it for abnormal or cancerous cells.  So, even before the big scans and tests at the end of the month, we will probably have an idea of what’s worked based on the content of the spinal fluid.

These evaluation sessions are …I can’t even think of an appropriate word to describe them… important to say the least.  These are the times where we will sit down and talk through all of this working…if we will continue on with the 54 week chemo protocol, or try something else.  These are the times that we will confront this ugly and stubborn cancer in the face and begin to know who is going to win.  As you can imagine, these are the times we simultaneously hasten and dread with the question of which is worse – the knowing or the not knowing?

“I wait for the Lord, my soul waits, and in his word I hope.” Psalm 130:5

And so, we wait with hope

Moment by moment.

2012: In Our Own Words…

Christmas 2012

Looking back at all that has happened this last year, I asked everyone in my family to do a little summing up – Here is my family in their own words on 2012…

Karsten (1): [grunted and walked away]

Chase (3) [thinking he’s writing an e-mail to his hospital, which he’s never done and is unlikely to do anytime soon]: “The cancer is still running away from me because it wants to hurt me, but I am very brave. (breaks into song) God is near me, God is near me, all the time, all the time!”

Aidan (4): “I like when Christmas comes…and I like Uncle Trevor…and I get sad when Chasey hits me…but then we make it right and that makes me happy again…and Mom, when are you going to get out of my room?”

Darcy (6): “Some days I really want to go to my home and be back with my family when Mommy and Daddy don’t have to go to the hospital anymore and be on the phone with doctors all the time, but I’m very happy that I can be off school this week and that we can be together as a family.”

Bob: “If I could use one word to sum up this year, it would be ‘DIFFERENT‘. In many ways, I worked, traveled, wrote and read as in other years, yet this year was profoundly different with the cancer diagnosis. It’s ironic how the normal and the very abnormal go hand in hand.”

Ellie: I think if I also had to find one word, I’d choose ‘BLESSED‘. Never have I been so aware of all that I have and all the amazing people around me.

On that same subject, I’d like to take a moment to say thanks.  The simplicity of these words can’t possibly encompass what we feel, but on behalf of Chase and our entire family: thank you.  Some of you I know personally and some of you I may never meet, but I so wish that I could have the chance to sit down with each of you face-to-face and tell you how much all of the prayers, encouragement, gifts and service have meant to us. We are so blessed by you in ways you cannot even imagine. THANK YOU.

Truly He taught us to love one another; His law is love and His gospel is peace; chains shall He break, for the slave is our brother, and in His name all oppression shall cease.
Sweet hymns of joy in grateful chorus raise we,
Let all within us praise His holy name;
Christ is the Lord, Oh, praise His name forever!
His powr and glory evermore proclaim!

Knowing The One who heals all and frees all is our true and constant comfort in this season and always.

Moment by moment…

In The Dawn Once Again

It’s Monday morning and we are in the dawn once again.

Today, Chase begins radiation.

Though I cannot find the words to adequately describe how I feel about this, I know that God has been with us every step of the way and will not leave us now.

Chase, we’ll again see you on the other side.

From the first step on a new path…

Moment by moment.