CHASE AWAY CANCER

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.

If you had asked me on the morning of January 8th – MRI morning – if I thought I still lived a cancerous life, I would have known it wasn’t as bad as it had been once upon a time, but after a pause to weigh it all, I would have most likely said yes. Yes, our collective family life is still very much filled with the indirect weight of cancer.

However, the last four weeks have proven that I have indeed forgotten more than I remembered.

I forgot what it was like to live in a place where I take one step without seeing the step after or even knowing when the movement will be required of me.

I forgot what it was like to have people feed me practicality and logic when I just need a hug and the acknowledgment that life is hard, but this won’t break me.

I forgot the near hourly feeling of not being enough for children who want me to process something for them that even I don’t understand.

I forgot the weight of their sobs – how much I hate that they hurt when I gave birth to protect them from, not direct them through, the nightmares at their door.

I forgot what it feels like to live a life half in and out of the hospital, feeling the dread of landing there again even as I relax into the second home – the love-hate relationship with a building filled to the brim with stories of pain and hope.

I forgot all the suggestions that get given.

I forgot how much the well-meaning can can sometimes hurt.

I forgot how much I still want to hear from people even if hurts like hell itself because there is nothing worse than silence in a struggle like this.

I forgot how quickly the days pass when I’m focused on keeping everyone breathing.

I forgot how that breath is a gift.

I forgot that every moment is so excruciatingly precious that it should never be taken for granted.

I forgot that God is enough and wants to be enough. Even though I write those very words all the time, I did not remember the feel of it in truth.

I forgot that sometimes I need blood and pain to remember the things I should never forget – the things in life that truly matter. And I hate myself for that a little bit. Surely, there’s an easier way.

I forgot that remembrance in seasons is actually a gift because these days in their awfulness still manage to showcase the most precious aspects of life on this earth.

I’m not sure if having it all dulled by a long season with more “normal” was worth the pain of it creeping back in (because with a diagnosis like this, it is a slow creep and not an epic crash – it’s an unfolding and not an exploding – but it still hurts – perhaps more so because it is the second and not the first), but for every piece I’m forced to remember, for every new nuance that appears, I claim it for the story it will become, the tool it can be – and in so doing, the moment can wound, but not hold me forever, because there will be a purpose to it.

I forget… but for better or worse, continuing Chase’s cancer journey ensures that I will remember again. And then comes hope…

Moment by moment.

“Is his unfailing love gone forever?
Have his promises permanently failed?
Has God forgotten to be gracious?
Has he slammed the door on his compassion? And I said, “This is my fate;
the Most High has turned his hand against me.”
But then I recall all you have done, O Lord;
I remember your wonderful deeds of long ago.
They are constantly in my thoughts.
I cannot stop thinking about your mighty works.” Psalm 77:8-12