Ugly Deja Vu

I keep telling myself I’m OK, and I’m just not. It’s not that I think my child is in anywhere near the danger he was in 10 years ago. It’s that I don’t want him in any danger at all. I don’t like that the neurosurgeons are interested in talking to us. You never want a neurosurgeon to want to talk to you. I don’t like that we have a meeting next week with a neurosurgeon and an oncologist. We haven't been to the neurosurgery department since like 2012, maybe 2013, and oncology had become the place we go to hear that our child does not have cancer anymore. Now it’s the place where they don’t know if he has cancer. I don’t think that whatever this thing is in Teague’s brain is cancer. But I don’t like that the oncologist said it’s possible. I don’t like what happens when you meet with doctors who want to do procedures on your child. You end up realizing that there was a reason they wanted to meet with you and then you realize that you agree with them, and you end up handing your child to them so they can cut his head open. I don’t like that what I thought was in the past, isn’t. I liked leaving all those things I felt in 2009, in 2009. I didn’t realize how much I had forgotten about how all of that felt. Now it’s all rushing back, and it feels different than it had come to feel as a memory. This is what remembering really is because it’s no longer the memory of having felt it. It’s feeling it again, in all its ugly realness. I know it shouldn’t feel the same, but it does. If we hadn’t been through what we went through, my emotions would be a lot more in the caution camp than the sound-the-alarms camp. But that archived File of Valuable Learning Experiences has been opened. And now I'm thumbing back through it in my mind. Sometimes, like right now, my chest feels tight and my gut is in knots. Sometimes brief tears will come out of nowhere. Like earlier today when I got off the phone with the neurosurgery department after they called to schedule our consultation. It all feels the same, and I had thought I would never have to feel these things again. I thought we were done. I wanted to be done.

A breath mint, cut down to about the size of the "thing," showing how little it takes to send me into orbit.

Hold on the Victory Lap

I don’t think I knew how badly I needed to be done. Teague’s 10-year MRI was something we had looked forward to, of course. It was something that would mark the end of our cancer road. As time passed, his sickness got that much further behind us, and we had settled into knowing that the news on follow-up day would always be good, and we wouldn’t have to think about cancer again for another year.

I used to be tense in the weeks leading up to a scan (probably why they call it “scanxiety”). I would have knots in my jaw, and I would stay up late, especially the night before, unable to unwind and sleep. And then after all the testing, when they’d tell us Teague was clear, tears would release and flow, even when I thought I hadn’t been “that” stressed.

That tension eased with time, faith, and prayer. It took years, but the last several follow-ups were pretty breezy for us. It wouldn’t hit me until we were on site that we were doing this because Teague is a cancer survivor and they’re making sure there’s still no evidence of residual disease.

Year 10 felt almost like a formality. Teague has gotten to where he thinks these scans are a pain in the butt, and we had assured him that this was for sure his last one. We walked in, ready to get it over with, making off-handed comments all day about how we never have to do this again.

But when they went over the results with us this time, they told us that there’s a tiny spot they’ve been keeping an eye on for the last five years. It’s a nodule or lesion or “focus of non-enhancing flair,” as it says in his chart. Pick a euphemism. It’s in the front right of his brain, 1mm in 2014, 2mm in 2016, 3mm in 2017, and 4mm now.

(But he rocked the audiogram. Stable for the last several years!)

Whatever it is, it’s tiny, but it’s growing, so they’re putting Teague’s images in front of the tumor board. That’s the team of neurosurgeons, oncologists, and radiologists—all the people who work with kids who have neuro tumors. They have a weekly meeting to review cases, collaborate perspectives, and decide what, if anything, to do.

As far as science goes, this is probably nothing to worry about. While we don’t know what it is, it’s probably not cancer. And if it is, it’s the least aggressive one I’ve ever heard of. But to have anything growing in Teague’s brain, however small and however slowly, and whether it’s cancer or not, is not great news, and it’s not something to ignore.

This growth is not near the old tumor site. Maybe that means it’s unrelated. Or maybe it’s a result of the radiation they shot through the top of his head, down toward the tumor site. Or maybe it’s a recurrence that just picked another spot because ependymoma can come back anywhere that spinal fluid flows. (Just felt a twinge of nausea to type that word.)

I don’t know what the worst part is. Maybe it was the moment Teague asked me, “What if I die?” I don’t think I'd ever before imagined how it feels to have your child ask you that and then look at you sideways when you tell him that’s not likely. So we talked more about how horrible and scary it would be if he died, and we went into detail about how low the risk is with this growth, and that they’re not even likely to want to do another surgery. I’m kind of big on my kids knowing I’m not lying to them. I don’t tell them something won’t hurt if it’s going to, so we had a pretty honest conversation.

That was over lunch. Quinn gave Teague a blessing of comfort when we got home. It’s always hard to tell with Teague if something is still bothering him. He just doesn’t complain about anything, and he accepts things and moves on. So I have no idea if he’s still scared, just rolling with it, or completely at peace. He says he’s good, no matter what I ask him. It's only when he asks the questions that you know he's stressing.

So now we wait for the tumor board. They meet today. And we pray for them to look closely and make the right call on what to do.

Waiting to hear from doctors has its own brand of suck. And it accesses old terrors that I thought were gone. This particular terror comes from that time, after Teague’s first surgery, when they told us that was all they needed to do. No chemotherapy. No radiation. And then the tumor board met, and we ended up in radiation treatment all summer. So while in my mind, I know this is probably nothing they’re going to act on, my heart says, “Yeah, they’ve tricked you before. Watch your back!”

At the very least, we know we have another MRI at year 11. Teague’s oncologist was clear about that. So we don’t get to be done yet. We didn’t get to walk out of Primary Children’s yesterday, freed. We’re still prisoners to this risk that’s always going to be lurking, it seems.