Of Freedom, Answers, And Choosing Hope

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.