All Good

Teague is out of surgery. He's conscious, he's forced his eyes open (he thought he had to get permission and asked if he could yet), and he's talking. He's had some ice chips and swallowed two Tylenol. And then he asked if he could rest a little, so now he's drifting in and out of sleep.

The morning began early; we entered a crowded waiting room at 5:45 a.m. All the first-on-the-list kids were lined up for whatever surgeries they were having. In our pre-op room, Teague had to wipe down with pre-treated cloths to get extra clean, then he got into his gown. 

Rockin' the gown. He did not love the open-back feeling and had me tie it tighter.

Dr. Cheshier showed us Teague's latest image, marked the right side of his head to indicate which side the procedure would be done on, and showed us where he'd make the incision, a four-inch opening just behind the hairline. 

Totally fine with Dr. Cheshier's choice of marking. I'm all about the boy who lived.

By 7:40 or so, Teague was down the hall with the anesthesiologist after hugs for Quinn and me at the big double doors. By 9, the OR nurse called to let us know that Teague had been safely sedated and that they had made the initial incision (kind of a gut-turning thing to hear because I imagined them doing it, and that was not a good image). 

Headed back.

We breakfasted in the hospital cafeteria. Not because we were hungry, but because we know this place, and that's seriously the only good meal they serve here. After that, hunger is better. We ate and talked with a good friend who came to spend time with us, and that really helped keep our minds off of the waiting and any thoughts of what they were doing in there. 

Teague was coming out of surgery a little before lunchtime, but we didn't get to see him just yet. He was headed to Imaging for a post-op MRI to confirm that they had gotten everything. Dr. Cheshier explained that the area with the growth looked like normal brain tissue, so he literally couldn't tell by looking straight at it where the abnormality was. He had to go by the image, so they needed to confirm that they had indeed gotten the lesion. If not, it would be a U-turn back to the OR to get it. Even though the surgeon would consider that the same surgery, I'm not sure I would. But it didn't end up mattering. Imaging came back with what we wanted to hear. The chunk they took out, a cube of brain tissue about the size of the end of my finger from the last knuckle, was the chunk that contained the tumor, and it's on its way to pathology now.

Groggy but awake, and surprised at all the things he's hooked up to. 

Teague is comfortable for now. He's resting but will respond when spoken to. He hasn't asked for food yet, and he was surprised to see all the lines he's still hooked up to. 

Teague will stay the night in the PICU. There's a recliner in here for me, and it lays flat, so that will be my bed tonight. I'm choosing that over a bed in the Ronald McDonald house, which may be more comfortable, but if I'm here for my kid, I'll just stay with my kid. Quinn will go home to be with the other kids for the night.

He says he feels OK. "There's just a little pain on the right side of my head." (Could he be funnier?)

Thank you to all who have prayed for Teague and for our family. Thank you to all who have carted our kids around, made food, brought treats and cards for Teague, and walked our dog. I know that when you watch stuff like this happen to other people, you feel like you can't help, but your love helps. We feel the impact of your prayers. And we love you back. 

T Minus 30

Teague’s surgery is scheduled for one month from today, September 19. He’ll have an MRI the day before to determine exactly where they’ll go in (read: where they’ll cut). Then we’ll know if it’ll be behind Teague’s hairline or in front of it, along it, on his forehead, or what.

Surgeons think in terms of the best way in. Moms think in terms of maiming. In my mind I just see this long red scar running down the side of his forehead because that’s where your mind goes when you’ve been stewing on it for the last few weeks and you still have a month to think about it. I believe it will go fine. But the truth is, it’ll be what it is. We won’t know the outcome until we get it.

I’m feeling OK about things generally, but I know I’m not normal. Like, I’m quickly trying to schedule family pictures before they mess up Teague’s face or ruin his brain or both, and that's kind of embarrassing. The cuckoo part of me has created this nasty program that runs in the background of my daily, we’re-all-good mindset. Its message is that we have one more month for things to be as they are.

Time is my enemy. Last time, there was no time. Decisions were made and carried out right then, and there wasn’t room for second-guessing. The worrying came after the fact, when it was all done. In a weird way, it’s easier to make battlefield “Did we just DO that??” decisions than methodical “Is this what we should do?” ones.

Not that any of it is easy. What a weird concept. That’s the word Dr. Cheshier used to describe this procedure. Easy. Because he’s a neurosurgeon, and it’s easy compared to the things he normally does. But it’s not easy compared to the things we normally do. I’m still hung up on the chunk of brain they’re going to remove. It makes me sick, and it scares me.

I have to find a word that makes sense to me that can get me to that “easy” place. Something that lets me be reasonable as I think about the risks. Something that lets me be real without the crazy. “Easy” is  not that word.

Life has hard things in it, all the time. It doesn’t stop. Sometimes you get little breathers, but there’s always a challenge, always a worry, always something beyond your control, always something you don’t feel quite prepared for.

There’s always a reason to have faith that you’re being refined. Faith that through the grace of God, you’ll get the help you need to get through it. Faith to learn better than ever before how to trust God more completely than ever before.

I don’t know where I am with that. All I’ve got right now is knowing that the decisions we’ve made up to this point are the right ones.

(First day of seventh grade was today.)

Craniotomy It Is

We’re doing the craniotomy, which is a procedure similar to the way you cut out the top of a pumpkin to carve it. Except on Teague’s head.

Originally I was pretty dead-set on the needle biopsy because please, let’s not mess with this kid any more than we have to. But we met again yesterday with Dr. Cheshier, and while this growth is small enough to be removed with a needle, it’s more complete if he takes a margin.

We’re all very sure that whatever this thing is, it's benign (everyone except Quinn, that is—he’s already 10 miles down the cancer road in his mind, living in all the stress that brings). But benign things can regrow if you leave some behind, and we don’t want to ever have to do this again.

So here it is. Tiny, little troublemaker. Image makes it look like it's on the left, but they tell us MRIs are that way, and it's on the right. 

The procedure will involve an incision of several inches, most likely along Teague’s hairline just above his temple. Dr. Cheshier will retract the flesh, saw out a patch of skull, then take out a cube of brain tissue where this growth is. He tore off a piece of measuring tape to show us the length of what he’ll take out, but said to imagine it like the end of a Slim Jim for full dimensions. To a surgeon, it’s small, but to a mom, it looks huge. Because we’re talking about a piece of my child’s brain.

 The size of the chunk to be removed. Kind of horrifying. This is also about the depth from the outside of Teague's head to where the growth is, roughly 2 cm. 

Dr. Cheshier will then put the piece of skull back and secure it with pieces of titanium. I asked if we have to have the plates because really? Plates in his head? He said yes. When Teague was two, his skull was soft and was still growing and forming new bone, so they just sutured the piece of skull back in place. It’s different now. If the doc doesn’t put the plates on, the bone won’t stay still enough to heal, and eventually an indentation will form. So titanium plates it is.

Teague will spend 8 – 12 hours in ICU so they can watch for bleeding. Brain bleeds are rare, but they happen. Because you can't tie off vessels in the brain, they have to cauterize, which causes little scabs that can loosen and bleed. That only happens in about 5% of patients, and it’s within the first few hours if it’s going to happen. Teague will stay a night or two on the floor, and they’ll do an MRI before we leave the hospital to double-check for bleeding.

Dr. Cheshier explained that while this area of the brain does do lots of things, the info is repeated in other places, kind of like having cloud backup. So any gaps should be filled. He expects Teague to be unaffected by the resection. Prayers for that to be the case.

Pathology will come back within a week. They won’t do an immediate frozen sample on this one because the lesion is so small that they’ll need the whole thing for pathology. If it comes back as anything more than a non-cancerous, stupid nothing, everyone but Quinn will be surprised.

I keep mom-guilting that we should have done Teague’s MRI earlier in the summer. Not like we didn’t have things going on, like a missionary coming home and moving into a new house. And we had honestly expected to just go up there that one day, check everything, and come home and forget about it. Now we’re headed back to the land of brain surgery with regular follow-up MRIs.

I’m not thrilled about Teague having surgery right as he starts junior high. He’ll probably miss a good week of school, and he’ll go back with a visible, healing incision. New school, new town, and this. Bleh. But he doesn’t seem too bothered about it. This kid has always been so much better than I am.

Bring It On

The meeting was Wednesday. Quinn and me and Teague, Dr. Cheshier (neurosurgeon), and our oncologist, Dr. Bruggers. Teague was a hard sell to even show up. Not because he was nervous, though that may have been part of it; he said he wasn’t up for a boring car ride. But since this meeting was all about whether we should have this thing removed, and because the thing in question is in Teague’s head, he had to be part of it.

Teague only had two questions for the surgeon: 1. Have you done this before? and 2. I’m going to be asleep the whole time and won’t feel it, right? With satisfactory answers to both of those, Teague was on board.

Here are the details.

The “thing” is on the top portion of his brain, nowhere near the former tumor site. If you take your right hand and just set it on top of that side of your head, it’s under there. Right middle frontal gyrus.

It’s tiny, like a tic-tac, if tic-tacs were round, and it’s not deep in there; just sitting kind of on top of his brain. I realize now that I don’t actually know how deep. Another question for the surgeon.

Seeing it on the scan was an experience for me. Up until that point, I had thought of it as small and superficial and I could easily lean toward leaving my child the heck alone. We had gone in there knowing, though, that we should have it taken out—we don’t want to later wish we had. Looking at my son’s beautiful, normal brain and then seeing a bright white spot on it solidified that decision. It took me to a “get that out of my kid’s head” place.

Dr. Cheshier said the procedure will be “easy” and that he may be able to get it with a biopsy needle and leave a minimal scar. Just one or two nights in the hospital, no ICU.

Here’s the “but.” There’s a chance he may see fit to do a craniotomy (cutting a little jack-o-lantern plug in Teague’s skull) so he can take a bit of a margin—I didn’t know you could do that in a brain, but evidently you can. Then if pathology comes back with something surprising, like if it is some weird low-grade cancer of some sort, they’ll already have a margin and they’ll know more.

Personally, I’m not expecting this to be cancer. No one is. It’s just some stupid growth. It’s a ball of hair and fingernails or something benign. It didn't enhance with the contrast on the MRI, and cancer usually does. So that's encouraging.

A craniotomy would require an incision of several inches so he could peel back skin and make room to get in there. He would do that along Teague’s hairline so that it would be able to hide better when it heals. It’s definitely a plan B.

Oh, and there’s risk of brain bleed with either procedure because evidently this growth is in a rather vascular area.

Either way, it’s another freaking brain surgery for Teague. I might not be done being upset about that. I go back and forth between being horrified about it and being OK. In my OK moments, I wonder if I’m crazy. This is brain surgery, but because I can compare it to what we did 10 years ago, it seems minor.

In my not-OK moments, it feels at worst like we’re back in that place where our kid could die and at best I realize that they’re going to open his head and dig in his brain. It’s kind of terrifying.

When I allow all the similarities in, like getting calls from the neurosurgery department or talking about hospital stays and cutting my kid’s head open and sutures and scars and recovery, it brings back the old cancer-world feelings, and I get edgy.

But it really is different this time.

The first time, everything was immediate. We found the tumor on a Friday, and Teague was in surgery first thing Saturday morning. This time, they’re just scheduling us like a normal appointment. It'll either be on Wednesday or Friday of next week.

The first time, they opened up the back of Teague’s head, pushed apart the lobes of his cerebellum, removed a cancer that was almost as big as a ping-pong ball, and scraped bits of tumor off of his brain stem. This time, they may be able to get it with a biopsy needle.

The first time, Teague had a 10-day stay in the hospital followed by a couple of months of radiation and all that came with that. This time, we’re looking at one or two nights and then rest up at home.

It’s still pretty scary. I know I’m carrying stress somewhere because my jaw is knotted. And sometimes I feel heavy-hearted and can’t place why until I think about it.

But the kid is OK. He still has that gift he got long before he came into our family—something God gave him when created him that I hope he never loses. I don’t know exactly what it is. There’s a purity and a calmness to it. Maybe it’s trust or faith or bravery or love or all of it.

It showed every day when he was fighting cancer and many more times and in many more situations as he’s grown from a toddler to a preteen. And it showed in his reply to my sister when she messaged to see how he was doing with the decision to go under the knife. He said, “I’m feeling really good about this. Bring it on!!!!”

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.