God’s faithfulness – CHASE AWAY CANCER

Of Fourteen Years and A Better Country

A handful of weeks ago, as the last July sun rose on the horizon, Chase passed his fourteenth cancer anniversary marker. It’s been fourteen years since Darcy woke us up right before the dawn complaining that Chase was moving in his bed and wouldn’t stop. Fourteen years since the first seizure, the first ambulance, the first terrifying description: “there’s a large mass”, and everything we ever knew changed forever.

We were initially given a less than twenty percent chance of Chase surviving his cancer. Did you know? I remember that his doctors hoped to give us six months because the goal was to get him to his third birthday. They wanted to at least let him turn three… and that was fourteen years ago now.

In those early days, we slowly said goodbye to the life we had and the Chase we had known (though we didn’t realize it at the time)… the one with the hair on his head, with his unscarred body and un-slurred speech. The one with the perfect hearing and eyesight, and plans to grow as tall as his dad. The Chase we thought we’d know and grow looks different now. Everything changed with the cancer.

But that’s not the end of the story…

Recently, we were in the car with our fuzzy-headed boy and as often happens with any time on a car ride, Chase talked about whatever happens to come into his mind.

On this particular occasion, he talked about his friends Wesley and Connor and many others that he has known through the lens of the hospital. And then suddenly, he was talking about his own journey.

During the somewhat rambling course that his words took, he said that cancer has “changed him for the good”.

At this point, I looked over at Bob… What did he say?

It is not an unusual thing for Chase to stumble over or confuse his words, but this felt too big and strange a slip, so I actually stopped him and asked him to clarify. In that moment, I actually told him what I thought he meant to say. “You mean it’s changed you for the bad? The cancer? I think you confused the words, Chase.”

Then he told me that no, he meant what he had said. And then he clarified his statement with these words …

“I think the tumor changed my life for the good. It changed a lot of things like how I prove myself, how I give advice, how I talk to people in the world. I can give people courage and confidence. I wish it didn’t happen. But I won’t say that. Because it makes me feel bad about life. I don’t want to feel bad about it. I pray that my faith stays strong.”

How can my son sit there, broken and weary after being profoundly, forever altered by his disease and say “good”? How is he capable of making the decision not to dwell on this very real damage? …the same damage that overwhelms my own heart in many moments. Just… how?

We, the ones who witness his fight, know it is not good. In fact, cancer feels like the very and fiery opposite of good. And yet Chase said what he said.

I think I could sit with his words forever and not get over them, dear ones. That’s why I opened the note app on my phone even as he was still talking and started typing as quickly as I could! The words seem crazy…! And yet they ring clear and concise – especially when I consider that the last words he decided to speak on the subject were:“I pray my faith stays strong.” [he was actually quoting a piece of a Danny Gokey song he loves]

I believe Chase could ultimately say the word “good” in this context with complete neurological clarity because he wasn’t focused on his pain. His eyes weren’t down, looking at the reality of where his feet were planted on this earth and mess. Rather, he was looking ahead. He was focused on that place that the book of Hebrews calls “a better country” – the final, best, and promised place where we will finally understand how our pain wasn’t wasted. The place where we will come to see the good and know as we are fully known.

To be clear, Chase knows the reality of cancer. And as he said – if he thinks about it he starts to feel bad. I have witnessed his tears and his questioning more times than I can count.

I believe Chase was, with his words, practicing what it looks like to live with hope. His good…his very joy…wasn’t spoken in regards to his outcome but rather, in his own worshipful witness of Spirit-enabled profitability in the chronic wreck of a post-cancer life.

This is the goodness of God in Chase. Fourteen years down the road…

Moment by moment.

“Why did [the people] stay in tents in a place where they owned nothing? Because they desired a better country. They realized that that was not the whole plan. The whole plan was wider and deeper and broader than just the land. So they put up with temporal discomfort, believing that this temporal discomfort is leading to an enteral weight of glory. … We press on with faith and we endure with hope. The hope is taking the future reality of God, the future promises of God and believing them to be so true that you live your life today by them.” Dr. Steve Leston, on Hebrews 11

Of Papers, Chest Pain and Being Okay: a moment for the new school year

I have come to realize that I don’t post very often in the month of August and it’s because it’s the month that comes with a return to school and all the pieces involved for a child like Chase.

Last year, Chase missed a significant part of his sophomore year. This year, he’s hoping for better and more, but he’s afraid too.

Every day it is a challenge to help him wrap his mind around his symptoms and try to figure out what needs to be reported and monitored, and what can be ignored. [easier said than done, for sure]

And me? I’m filling out all the papers and sending emails and working with his hospital and this most incredible support network just to get Chase in the school building and allow him to be there all day.

This last week, I was at the school almost every day (forms, medicines, low blood pressure intervention, etc)… BUT …so was Chase. [winning!]

The intersection of a medically complicated life and a typical school day is an interesting space to inhabit.

THANK YOU

Dear ones, as Chase lay asleep last night, just short of the ten o’clock hour, we quietly crossed over the $10,000 mark. In less than 24 hours, no, in barely half that time, the Chase Away Cancer community and friends gathered OVER $10,000 for Lurie Children’s Hospital and the Anthony Rizzo Family Foundation in honor of Chase’s 13 years!

Did you hear that? Did you read it, because I want to say it again… in 2022, with inflation and illness and sadness all around us, you quietly and efficiently added thirteen to thirteen to thirteen over and over again until it was thousands and thousands!

He came to find me at my computer right before his dad tucked him in and wrapped in his gingerbread man pajamas, he leaned over the screen. “How did we do?”

“They did it, Chase. For you… Ten thousand dollars…”

And last year, he gasped and jumped up and down, but this year, his eyes got wide, a smile appeared on the edge of his lips, and then he bent his head to my shoulder with a long sigh of relief and a single word.

“Good.”

And isn’t that just the heart of it sometimes? We put our heads down, rest from the fight, take a deep breath, and sit with the good – even if only for a moment – because there is always good to be had, especially now, in the Advent of the Best.

And dear ones… this was a VERY GOOD THING that happened this Monday, the 12th of December. We rested for a moment and we hope and pray that these beautiful, amazing donations help others rest longer and easier farther along.

Looking forward with great hope, from the bottom of our hearts –

THANK YOU

Moment by moment

A Brief History Of A Long Road

DO YOU EVER WONDER HOW IT ALL STARTED…??

On Sunday, Chase’s marks ten years of cancer fighting. TEN YEARS is quite the journey, dear ones, isn’t it? In case you’ve joined us more recently, or in case you’re curious or it’s been a while… here’s what brought us to this place:

Just before dawn on Tuesday, July 31, 2012, a six-year-old Darcy woke us to complain that Chase – only two and still in his crib – was “moving around and won’t stop”.

“El…! You need to come here! Chase is having a seizure!” The mix of deadly calm and worry in Bob’s words propelled me from the bed before my eyes were fully open, heart racing.

And just like that, we woke to the first day of a completely different life, never to return to the one we had known ’til then.

Within hours, we would learn that there was “a large mass” shoving one half of his brain into the other (causing the seizure) and that the hospital we had been taken to by the ambulance wasn’t equipped to deal with cases on this level.

By noon, Chase had been transferred downtown to the brand new Ann & Robert H. Lurie Children’s Hospital of Chicago facility.

Within hours of the transfer, we had learned that he was having near constant invisible seizures and he was moved to the intensive care unit.

By early Thursday morning, 48 hours later, we had signed papers, said goodbye, and handed our little boy to a team of neurosurgeons.

The surgery was mercifully short as brain surgeries go (under four hours), but the news was a worst case scenario: While the initial tumor had been successfully removed, Chase’s lead neurosurgeon gently explained that the pathology was not only deeply malignant, but also highly aggressive, and that he had actually visualized cancer cells all over the top of his brain…too numerous to be removed. The scans backed up the doctor’s assessment. There was cancer all over the brain, in the spinal fluid, and lining the spinal column.

The plans were placed, the words were guarded, and nobody expected Chase to survive his third birthday.

But he would…

The next nearly two years brought seemingly endless complications, procedures, and days spent living in the hospital. We moved in with my parents, who cared for our other three children. Chase went through so much chemo, so many days of radiation, and bag after bag of transfusions – so many interventions that Bob and I l have since lost count.

He finished treatment sixteen months to the day after starting and immediately began extensive therapies to improve his quality of life.

He could speak, but he didn’t understand what words meant.

He wasn’t growing.

He couldn’t hear well.

He couldn’t see well.

He had almost no short term memory.

And we were informed that these would most likely be just the beginning of side effects.

There were routine scans every few months.

A year later, the MRI picked up a small growth and we battled relapse fear – another MRI after six of the longest weeks of our lives showing what was most likely a radiation damage and he was diagnosed with benign tumors/cavernous malformations.

The next summer, he was officially diagnosed with significant hearing loss.

The following spring, he had two separate surgeries to remove cataracts and try to improve his vision.

Three weeks after the first cataract surgery occurred in 2016, Tyndale House Publishers published my labor of love – “Chase Away Cancer” – the story of those first six years and some of the lessons we’d learned along the way.

We settled into post cancer complications and life.

A little over two years later (after the longest season of only routine appointments and few emergencies) an MRI pick up strange thyroid growths and in the last week of January, 2019, Chase was diagnosed with thyroid cancer and had his entire thyroid removed.

A few months later, Chase had his first visible seizure in seven years.

Only weeks later, his thyroid site showed cancer in a couple of surrounding lymph nodes and despite a full body scan showing the spread to be contained to the thyroid area, Chase was scheduled for radioactive iodine therapy two weeks before Thanksgiving.

Since that time, despite frequent health anomalies that seem to require lots of appointments, tests, and even occasional surgeries and procedures, Chase continues with his two-cancer diagnosis – the primary never having relapsed, the secondary having been stopped from spreading.

We have no idea what comes next. Although we will be meeting with a genetic specialist in September to try and better understand why Chase’s body succumbs to proliferating cells the way it does and if we can possibly protect him from ever having another diagnosis.

His story has been shared from teary hospital rooms to history-packed halls of the White House. And if we’ve learned one thing in ten years, it’s that Chase is a precious law unto himself, a broken, beautiful story that only God himself knows completely.

As always, thank you for coming on this journey with us.

Moment by moment.

[Chase’s family includes Dad (Bob), Mom (Ellie – who is the primary writer on CAC), older sister Darcy (16), older brother Aidan (13), and younger brother Karsten (10)]

THANK YOU

See us running and hugging and freaking out a little? …crazy joy smiles on our faces?

Today, that’s what we’re doing because 1) our miracle boy turned 12 years old yesterday, and 2) because you put together the MOST AMAZING action in the last two days.

In less than 48 hours, the Chase Away Cancer community and friends gathered OVER $13,000 for Lurie Children’s Hospital and the Anthony Rizzo Family Foundation in honor of Chase’s 12 years!

You guys!

YOU DID IT!!!!!

I wish you could have heard the gasp Chase let out when I told him the news.

Dear ones… this was a VERY GOOD THING that happened this weekend.

From the bottom of our hearts –

THANK YOU

Moment by moment

[all photos: Margaret Henry Photography]