Category: Uncategorized

Rest. Heal.

I feel like I hardly know the meaning of those words right now. Since January 8th, the day of his MRI, and in a much larger way, since July 31st, some six odd and atypical years ago, there isn’t a great deal of rest, and when there is, it’s barely to be trusted. Usually, it’s just a quiet moment before the other shoe drops. It’s the calm before the storm, really. And we’re always tensing for the next storm.

But after a cancer pathology discussion with Chase’s doctors today, I realized we will be entering a season of enforced rest. Despite needing frequent bloodwork to monitor his calcium and thyroid levels and all the little things that are holding him together right now, the number one priority is simply to let his body heal.

Because while the pathology was most definitely cancer, the tumor was just under 2cm total, which means that – possibly for the first time in his entire life – Chase is considered “low risk“. I can hardly say it with a straight face because that sounds so very un-Chase. And because he is low risk, he gets time to heal.

Later on, after Easter and Spring, towards the beginning of May when Chicago winters finally end, the area under his angry, red scar will finally be healed and then they can do another ultrasound and look at all the lymph nodes. They took two during the surgery and they were both cancerous, but this is such a slow growing cancer that rest comes first. Right now, everything is still too angry swollen to see the truth of his status anyway. And unlike most other cancer where lymph nodes change the game completely and terribly, this thyroid cancer outcome is almost guaranteed the same story whether it has spread or not. We have not wrapped our heads around that yet.

So, in the Spring, we will know more than we do right now. First an ultrasound, and then more tests or scans or therapy or even a surgery. Everything depends the lymph nodes…and the lungs…and maybe even the bones too. There are so many possibilities and variables and it all depends on what they see in the Spring.

Everything in us fights against this wait because the cancer we’ve grown used to – the cancer that inaugurated and baptized us – that cancer was a super fast thief in the night that we couldn’t let borrow even a single minute in Chase’s body. We sat with that cancer in unknown proliferation for the first five months – the same total as we will sit with this one too, and yet we fought for every single second of that time with Chase. It was brutal. So this idea of sitting with the potential of more unchecked disease still inside eats at us like… cancer. Ha. And yet, this is what’s best for Chase in the now, and we’ve sworn on our lives to do what’s best for Chase – always.

So, for better or worse, we have been given an amazing amount of time to just be. Oh, there will still be hospital days every few weeks for other appointments, but we will sit on and with this strange, slow thyroid cancer.

And it’s good because we are so used to the fight being all action, all the time. The fight is fire and power and immediate and urgent until we have nothing left to give. But as of this afternoon, we are doctor-ordered and prescribed to fight still and quiet. This fight is taking a deep breath and waiting for it with great patience.

Isn’t it strange how life sometimes strengthens us in stillness over noise? …how silence can be more powerful than all the answers? …how powerless is powerful, if you’re in the right place?

Waiting is not easy, but for now, we choose to view it as a gift. We will live with this cancer. Chase will heal and we will breath deep, and then we will choose hope again.

Moment by moment.

Farther along we’ll know all about it, farther along we’ll understand why.
So cheer up my brothers, live in the sunshine.
We’ll understand this, all by and by. … There’s so much more to life than we’ve been told. It’s full of beauty that will unfold. And shine… Farther along. – Josh Garrels

It’s hard to say where it started, really…

When I was a child, we had a neighborhood hardware store with the three bright red letters emblazoned on the front of the roof. Ace was the place. My mother had spent her school teacher weekends as an Ace cashier and several years later in the height of the eighties, we would still walk in to greet the other cashiers by name, pick a small lollipop out of the plastic bucket, and race to the back of the store to watch the monkey who lived in the large enclosed cage taking up the back corner of the store. And if we were lucky, Chiclet would come over and put her hand against the glass.

Ace was our playground, our people, and our home away from home. Mom worked there, Dad went there to fix things and make Mom happy, and we – well we went for the Saturday morning cookies. We knew the people and they knew us.

Skip forward another generation to a time full of IVs and chemo and blood. Chase is diagnosed and being treated and somehow, unbelievably and beautifully, Ace is still our place. But now, now they enter our other home – the hospital place. They enter our suffering and pain, funding hospital needs and family spaces and using their profits to change things for the better. Because it isn’t enough to build a house or fix a yard. They’re building lives and fixing dreams.

Ace became our advocates, our voice, and our family away from family. 

And somehow in all of this, Chase still didn’t want to talk to people. It didn’t matter how nice or awesome they were to him or us. He simply didn’t want to talk to them. He didn’t yet feel the history of the three red letters, and it broke my heart to watch him hide, but new people were especially hard for him after lots of treatment and pain, and everything takes a while.

But I still wish him to see those around us, helping us the way I get to see them – I want him to feel the love and family the way I do. So we make it a game.

“I bet I can say hi before you can…” I challenge him desperately. Because life with Chase is like a hostage negotiation – there’s usually only once chance to sell it – and I want to make this good.

“No you can’t!” He laughs. “Hi Miss Chris!”

And suddenly he is saying hi to Chris, his favorite Ace face and a beautiful sister warrior of the heart. She was his first point of contact and she became his first greeting too.

And then time passes and more good is done. Chase grows and evolves again, and we find ourselves saying hi, not only to Chris, but to everyone at Ace – and it’s still a race because Ace is full of our friends. They become our voice and stand for all good things when we drive past their buildings on the way to the hospital.

The buildings are low and dark, but I know the heart and light that sits inside of the space and just the sight is enough to make us feel like they’re cheering us on as we go to warrior in the hospital place.

“Hi Miss Chris, Hi Miss Kelli, Hi Ace!” He yells. “Ha! I beat you, Mom!”

He always beats me. And that’s okay because it means that my Ace is now his – that he sees them for the family they are, and he knows they stand with him no matter what.

Even on the dark, cold pre-dawn of surgery morning, they’re with him. 

We round the bend in the road right before the dark buildings with their bright red letters. One last time before the hospital now.

“Hi Miss Chris!” he yells. “Ha! I beat you again, Mom.” He brags his first words as he’s been quiet with worry for the surgery just ahead.

But something catches us, slows us for a closer look this time, because there is so much more than the iconic glowing red on the buildings.

There’s an answer in the darkness, as lit windows frame letters that make words:

“Hi Chase – You got this!”

You see, sometimes hi is just a greeting.

But sometimes hi stands for growth and life and a big hug around the heart right when you need it most.

And then the buildings are past us, the hospital before us, and he sits in the dark of the car and whispers to himself with a small, secret smile. “I’ve got this.”

We’ve got this. And then we choose hope once again.

Dedicated with so much love and gratitude to our Ace Hardware family. Thank you for standing with us.

Ace Hardware has over 5,000 stores around the world, most of which are independently owned and operated by local entrepreneurs. Since 1991, Ace has been a proud partner of Children’s Miracle Network (CMN) Hospitals. Through Ace retailers and customers, vendor partners, and Corporate team members, over $100 million has been raised for CMN Hospitals, including Chase’s own Lurie Children’s Hospital of Chicago.

It’s silent and dark past the glowing of the computer screen in this living room, messy room space…

He’s laying on the floor, wrapped in blankets and love, with only the top of his fuzzy head peaking out. The siblings are all with their caregivers already and he just wanted to be close – to not be alone.

He said he wouldn’t sleep, but he has.

Oh my Chase… another Thursday morning, another Thursday cancer surgery. Then, when you were only two and so young in soul and body, I didn’t know who you would be or what would happen – and neither did you. At that point, you didn’t even know what the word surgery meant. Oh, but now you do, my darling old soul, young boy, and I’m both thankful and sorry for it.

Holding to the anchor promise that God doesn’t make mistakes and in this, I hope – even when it hurts. Don’t forget this today, and don’t let me forget it either. This is just another part of the story.

See you on the other side – again, sweet boy.

Moment by moment.

By the time you read this post, Chase will be on his way to the hospital. surgery is scheduled for approximately 7:30AM.

He doesn’t speak out often, but when he does, it’s often the gentle rock and hum of the car that brings out. “Will they take the whole thyroid out or just a part of it, Mom?”

I can feel my hands tighten on the steering wheel. “They whole thing, baby. They don’t want to leave any of it in – in case it grows more cancer.”

“Yeah.” His voice is small and resigned. “Because if there was more cancer, then I’d have to go for another surgery and I can’t do it, Mom. I just got my freedom and if I keep getting cancer and going into the hospital, then I won’t be free any more.”

Some questions come with no answers, and some words hurt like broken skin, but there are some things we know, and I’d love for you to know them with us – even if it’s just simply waiting with us as we wait.

What exactly happened?

On January 8, 2019, during a routine brain and spine MRI, the images picked up a spot on Chase’s thyroid. Originally thought to be a benign nodule, further testing proved that the spot was indeed papillary thyroid carcinoma – Chase’s second cancer in his barely nine years of life.

How is Chase handling this?

Right now, he is very nervous about the surgery. When he first found out, he was terribly concerned for how his friends would react to the news. He didn’t want them to worry for him, but this aspect has subsided as his school has embraced him with open arms. Overall, one moment he will be his regular Chase self, and then the next he will be deeply silent, not responding to anyone speaking to him, sitting and cuddling close in the silence because it’s on him and none of us have the right words and we all know it.

Is there a sure clinical reason for this diagnosis?

There is currently speculation as to whether this type of an occurrence stems from an aspect of his grueling ATRT treatment, however, the truth is that Chase’s generation of ATRT are on the “event horizon” – the first generation with a nearly 60% eradication rate and the idea of long term survival (defined as living for 5-6 years from diagnosis) is still very much unfolding. However, studies show that due to what children with cancer endure, by the time they’re in their 40s (should they live that long), 95% of childhood cancer survivors will have chronic health problems and 80% will have severe or life-threatening conditions. So even though we may not know the exact why of this secondary cancer, it’s not entirely unexpected.

This should be pretty easy because you’ve dealt with cancer before, right?

Yes, but also no. It feels crazy to survive the toll of brain cancer in our family space and then feel totally gut-punched over something as seemingly simple as the thyroid, but that’s the truth of it. Of course, we know the ins and the outs of the hospital and all things medical much better than we did six years ago, but carrying a second cancer when there’s already been a first is akin to asking someone with a broken arm to carry a bag of groceries. Technically, they can do it, and technically, the groceries are very necessary things, but the existing fracture makes the load that much more painful and the body that much weaker as a result.

At least it’s a good cancer, right?

You could say that, but uttering those words doesn’t mean it cannot and does not hurt terribly. The diagnosis doesn’t have to be the worst cancer to painfully undermine. For someone who knows the hospital as well as he knows his own house, whose body is riddled with scars and brain is full of trauma and broken memories, who has buried friends who should have started the next grade with him – it’s enough that it’s cancer. In the world of Chase, there is no good cancer. After the surgery and treatment, Papillary Thyroid Carcinoma will prove itself to have been so much better and easier than ATRT, but on this side of it, sitting with a diagnosis and a hundred little stressors like needles, it feels heavy and hard and deeply overwhelming. And for those of us old enough to understand, it feels stupid too because we know that clinically, there’s no call for it to be as overwhelming as it feels.

What comes next?

At this point, all we know for sure is that Chase is scheduled for a full thyroid removal surgery on Thursday, February 21st and will most likely be in the hospital for a few days to recover. This will be his first overnight admission since he finished ATRT treatment at the end of 2013.

If they take out the thyroid, then he’s done, right?

Even though the cancer will most likely be completely removed with the thyroid (barring any silent spread), I believe there will be at least one round of some type of treatment (possibly being re-admitted to an isolated hospital situation for radioactive iodine therapy), but at this point, everything from which floor in this hospital he will be admitted to – all the way to how much treatment he needs and what tests and their frequency going forward – everything will be decided based on the outcome of his surgery. One team has already spoken the speculation that the cancer has not spread, but all teams are being very cautious in their optimism because of Chase’s medical history.

What can we do to help?

Honestly, be aware of us, don’t forget us, and don’t assume it’s all okay, because we are feeling more than a little broken. But then, please just pray for us – remember us. The phrase “moment by moment” was the heartbeat of our brain cancer fight, but this time around, I deeply feel the words “choosing hope“ (there is a story to these words that I’ll save for another day). Hope is a choice and it’s necessary and it’s hard too. Last time was like scaling a high, awful mountain, but this time is like waking up in the middle of a desert and realizing you’ve probably been out in the sun too long already without resources. So, pray that we would keep choosing hope over sadness, and joy over despair – not because cancer is a happy, rainbow sunshine thing, but because this is only another chapter – not the full story. And that’s terrifying and amazing all at the same time.

Willfully choosing hope in the now. …moment by moment.

This morning, Chase’s friend, Benjamin will be in surgery to have his port removed after years of leukemia battle. As his mom and I sat over tea yesterday afternoon, we talked the reality of treatment ending and the symbolism of cutting out the last life-saving device. And somehow, it seems fitting this morning, as our hearts are with Benjamin in the operating room, to scroll back to June, 2014… These are the words I wrote when Chase’s last port was removed and they’re fresh again today in honor of a leukemia warrior on the operating table and his parents who will sit in the waiting room – waiting for their sweet boy and a new chapter too: the fight for life after the fight with cancer. So here’s to the final bridge between treatment and what comes after…

“The general protocol is that after six months of clear scans, we remove the port.  …even for the ATRT kids.  And as I look at Chase, I don’t see any reason to make an exception.”

We took a moment to absorb the words our attending doctor was speaking.  Even with the concern of relapse and all that comes with an ATRT diagnosis, the port could and should be removed.

This small piece of foreign material currently embedded in Chase’s chest has somehow come to both symbolize and encapsulate the last two years.  It was the first thing in and will be the last thing out.  We’ve had it placed, and replaced…and re-replaced again…and again.  We’ve fought to keep it, repair it, and protect it.  We became trained and comfortable in the procedures to sterilize it and triage when there was a problem.  It was a picture of the need for chemo, yes, but it also provided life-lines of blood, platelets, fluids, medicines, and even nourishment when he could not eat.

His access has at times been on both sides of his chest and in both arms as well.  It’s been a double lumen Broviac Hickman, a PICC, and a port.   It has inexplicably infected multiple times, been infiltrated by a deadly chemo, cracked and broken and once, even slipped out as he turned in his sleep.

Chase’s first and shortest Broviac was placed on August 16, 2012 when he was only 2 years old.  He doesn’t remember a time in his life when he didn’t have either tubes coming out of his body or an access point for the tubes embedded under his skin.  In it’s own way, it’s become part of his body and his identity, so when he was told that it was to be removed, he became very angry and questioned whether the doctors were going to remove his skin and bones as well – so much is this small device a part of him.

This constant access to his body was in some ways the craziest complication of his treatment months, yet a complete blessing too.  But now it’s time for the last remnant of the chemo chapter that can be removed to be separated from his body.  No more flushing it and locking it to keep it clean.  No more crash kit with clamps, swabs, and gloves in a bag that goes everywhere Chase does.  No more ER fever guidelines.  When he goes in for MRIs or labs, he’ll require a peripheral IV…just like a “normal” child.  A scary and wonderful thought.

He has equally fought it and protected it, and he’ll go into an operating one more time and they’ll open his chest and cut it out of the muscles into which it has been so carefully sewn.

And when they did indeed cut it out and away, he let out a long sigh, sat up in the bed in the middle of the recovery space, and whispered: “I’m free…”

So, farewell, to all the well-used, well-loved and hated ports today. We’ll miss you, but not really.

Moment by moment.

Is it strange to read about a port removal from 2014 to honor another port removal in 2019? …to read harsh and sad words surrounded by pictures of boys in the sun selling lemonade? The total incongruence and yet pain-fluidity is at the heart of the childhood cancer battle for many of us. We are irrevocably linked in our procedures and timelines and solidified in the joy of our strong moments as much as bonded in the sadness of our weak ones – no matter the year we start or end. Welcome to childhood cancer, dear ones. Thank you for getting on the roller coaster with us.