A slow leak.

This is long. I should probably take some care to edit it in tight, add some pictures, what have you, but I am not going to spend the time doing that. Those we read through will care more for the details than the format. It may help to review this post here.

As with any retelling, the conversations below, although shown as direct quotes, are an abridged version of real life events. Obviously, but I struggle with the missing pieces. Accurate to the best of my recollection, any reader should assume that this is a story, retold from my point of view. Know that I am an Enneagram 1 and truth, fact, and accuracy are the foundations I structure my understanding of this world around, AND that I am human…as such, any story retold inherently has my perception as the frame of reference, and this story is no different.

There is a lot of pain in this story, mostly in the “and because of this…” details that have changed our life. Right now, April 2020, everyone is living a weird version of life, under social distancing, and I find myself forgetting that although accentuated by global crisis, this has been our new normal for a while now. It reminds me of a moment 6-months after Beau’s diagnosis when I causally said, “…my son has cancer…” to a friend and almost threw-up because it felt like the first time the words had ever soured my tongue. 6-months in and my mind was still playing catch-up.

–

I ran in to them later that morning at Target. Which seemed coincidental because I had seen them during All-School Chapel earlier and wondered why Kyra wasn’t in her school uniform. I didn’t know the mom super well at that point, but at a small school you know everyone well enough.

“Why isn’t she in school today? Did y’all have a doctors appointment this morning?

“No, she hasn’t been there for some weeks now. She has been having chronic migraines, and well, we just aren’t sure how the building is contributing.”

I wasn’t following. The building? Huh?

“We think there is mold there. Or in some way, mold is contributing to the headaches…But anyway, how are you? How’s Beau? How are things?”

“Um….Mold at the school. That feels like a big deal… I haven’t heard anything about it.”

“Yeah, I mean, it is. We brought it up to the administration last spring. Nothing really moved forward then. Over the summer her migraines went away, she was fine. We thought she’d grown out of it. And then once school started up again, after a couple weeks, the migraines were back again. Like, bad. The school, I guess, did some testing, and we are waiting for those results.”

–

We had been back and forth on adhering to the Septra prescription for a while. Septra is a prophylactic antibiotic (that means you take it “just in case”, not “to treat” per say) and there are a lot of conflicting stories, both anecdotal and peer reviewed, about it’s safety. There is a long list of terrible side effects and a low probability of getting the germ that the Septra is meant to protect from. However, if you get said germ, a fungus actually, it’s very, very serious.

Even the naturopathic oncologist who we consult with on Beau’s care, and who is rather flexible on prophylactic medications, strongly urged we stay on Septra. The fungal infection is so serious in fact that it’s one of the leading secondary causes of morbidity in Pediatric Leukemia. So, as with many things on this cancer journey, it’s kind of Russian Roulette. Risk not taking Septra, or risk taking it. It’s all risky.

In the fall, as we started maintenance therapy, we had decided, reluctantly, to keep Beau on the Septra. It felt like the better choice to protect him from the unknowns of a fungal infection. At least, until we had more information.

–

“Do you think it would matter if the school had mold from all this water damage?” I asked Shelby, another mom and my PTO co-chair, as we walked up to the school building, gesturing towards the roof. Since seeing Kyra and her mom at Target I couldn’t stop thinking about mold.

“Yeah, I mean, I suppose it can’t be good. And look at all the tarps! I am sure there are leaks!”

There were tarps all about the roof. Tarps and sandbags covering large swaths of the roof. I guess I’d seen them for a while, but I hadn’t really noticed them until now.

We had to run by the accountant’s office, in the annex, to grab the PTO debit card to make some purchases for the PTO event we were coordinating later in the week. We walked in to her office and Shelby inquired about the debit card. I couldn’t believe what I was seeing.

“Amy, why are these here?” I interrupted as I motioned to the trash cans lined-up against the wall, the stained ceiling tiles moved from the dropped ceiling above, revealing another trashcan in the rafters.

“Oh that? That’s for when it rains, the water just pours in here.”

The paint on the walls behind the trashcans was buckling, with so much water damage that the paint had lifted from the drywall and began to slink towards the floor in one big sheet. The trashcans had inches of water in the bottom. Two big box fans pointed opposite directions to air out the wet and musty carpet.

“Amy…have you ever worried, or like, thought about there being mold in here?…I mean, this is crazy.”

“Well,… I guess not, really…. but it’d sure explain the congestion I’ve had for weeks, that I can’t get rid of.”

–

“Well you remember when all of our Fall Festival stuff was soaked?” Shelby had a much better memory than I did, she always had.

I had brought the mold stuff up with Shelby again, a week later, because it was playing incessant in my mind. Details swirling like pieces of a puzzle, I couldn’t make sense of. Suddenly, it was like everywhere I looked in the school building, all I could see was water damage. There were wet and stained ceiling tiles in the classrooms, in the front office, trashcans catching water drips in the hallways. As Shelby and I entered the PTO room she reminded me of the problems in there.

“All of this was wet when I came in the other day,” She motioned towards the pile of scarecrow costume supplies we’d used for the festival.” And that trashcan, the other day, it was almost half-full!”

I looked up and saw multiple ceiling tiles with the trademark, water damaged, light brown rings.

–

“Sawyer, tell Miss Betsy about what happened in your classroom the other day.”

Sawyer’s dad, our close family friend, knew that we’d decided to take the boys out of school for a couple weeks, until we had more information on the whole mold thing, and as such he knew I’d find unique value in the story Sawyer had to share.

“Oh Miss Betsy, it was so crazy. The other day, we were in class, and I was just sitting there, Like, ‘Ok, this is a normal day.” She started in, telling the story as any fourth grader would, with grand, pointless detail.

“Then I looked up and one of the lights, you know those lights in the ceiling? One of those, well, I was like right under it and it started getting all weird, and well, oh right, it’d been flickering for weeks, like I think since the start of school, or maybe not that long, but for a while. And then the ceiling all around it got all dark and brown. And I was like, “Um, Ms.Cramer…..” And so then she had me move from under it and I had to sit by the pencil sharpener. The pencil sharpener, so annoying, right?! And, like, the brown spot was a circle at first and the circle kept growing and growing and then, the light fell out of the ceiling!!! It smelled so bad, Miss Betsy, and then we had to switch classrooms because the smell was so bad. Like, I couldn’t even breath bad. No, Seriously!”

–

“…You know that’s crazy, but it wouldn’t surprise me. You know Cat? Her daughter is Reese in 4th grade? Her family owns the roofing company that replacing the roof, and the other day she said there are leaks everywhere.”

I’d tried to keep the whole mold topic to myself. I was sure that something needed to be said, but I wasn’t sure what and it didn’t feel right to sway opinion without knowing what was indisputable fact. But there we were at Jude’s birthday party with another family who has kids in both Beau and Jude’s class and the mom asked why our boys hadn’t returned to school after Christmas break, asking if we were “on extended vacation.”

I wish I was on vacation, I thought.

I explained the high-level of what I knew. There is active water damage all over the building, indisputable. The administration says they’ve known about active water damage for 4+ years, admitted. The pastor of the church, that rents the space to the school, has said from the pulpit they are in need of a new roof. The roof replacement is currently stalled because of litigation with the insurance company. There are tarps and sandbags all over the roof. There are trashcans collecting dripping water all over the building. There are water stained ceiling tiles. And…well….there are a handful of kids and staff with unresolved symptoms that doctors can’t provide a cause for. Weird stuff like stomach aches and migraines, and scary stuff like paralysis, auto-immune disorders and cancer. There is measured levels of mold in the building that are not safe for people who are immune compromised. That data was, finally, revealed after multiple tests said everything was “fine.”

Up to that point, I didn’t share anything outside of data. That was the moment in the story where the listener starts having to extrapolate.

“Do you know who wasn’t immune compromised prior to diagnosis, Beaudin. Do you know who is immune compromised now? Beaudin. So anyway, we are taking Jude out too. Because a building unsafe for one, is a building unsafe for all… And really, it’s being handled real smoke and mirrors like. Most of all, I think, the testing that is being done is inaccurate. Actually the testing is negating itself out right, if you look at the data. And the communications from the board, well they are reactive and withholding important parts of the complete picture…. and that, well just makes me loose my faith and trust in the board, which matters with a “healthy” kid, but is imperative with a “sick” one.”

I hated saying that last part to her, because it’s not data, it’s judgement. And through this all, I’ve seen that I do not like standing on the soapbox over things that are disputable.

I am not sure! I don’t know for certain! All I have is my own story, and I’m glad to share that as a personal narrative, but I don’t want to use it as kindling for a movement.

I don’t know.

But I’ve also learned that if you don’t stand on the soapbox, someone else will. Every voice deserves to be heard, not just those that speak first, or loudest, or from positions of authority.

“Well, Sam (this mom’s son, who is in the same 4th grade class as Kyra) has been having terrible migraines. We’ve been in the ER multiple times this fall over them. I wonder if this could be contributing?”

“Yeah, I don’t know.”

–

As more parents started to hear that the mold “situation” was, in fact, much more extensive than the single vague email from the administration two months prior would lead one to believe, people started reaching out. I began to get texts daily.

“Should we not re-enroll? I feel like they’re hiding something!!”

“Do you think my son’s migraines are from mold?”

“My son complains of headaches every day after school, do you think it’s the mold????”

“My daughter always has stomach aches, do you think that has to do with the carpet tests they are doing?”

“I thought you were on vacation, why aren’t you here?”

“I just heard Beau is still out of school, is he ok?”

“How could they not have told us all this was pending before reenrollment!”

I didn’t reply to most of them. I couldn’t answer for certain any of the texts. So I said nothing.

–

Belle. She had been in the hospital a couple days before I found out about it. Once I heard, I reached out to her mom. Belle was in an upper class, 5th grade actually, but her younger sister was Beau’s classmate. Surely I could help because I knew better than anyone what it looked like to be in the hospital with a gravely sick child and no diagnosis. Even if the only “help” I could offer was empathy. She was experiencing paralysis, severe, and they couldn’t pinpoint why. For days in the hospital, and weeks afterwards, she couldn’t walk without assistance, her body in a neurological paralysis, a form of neuropathy, for no apparent reason. Her best friend and classmate, Kyra, was the girl with migraines.

“Do you think what happened to her could have been related to mold?”

I asked her mom months later after the dust had settled. I knew that they had looked into every facet of cause. Even after discharge and weeks of follow-ups the doctors had no explanation of what was happening. I also knew she (the mom) had known about Kyra and the migraines and the testing.

“I mean, did you guys ever thing about mold as a reason for the neuropathy?”

“Absolutely.”

–

“Well, you remember Beaudin and his headaches last year?” Shelby chimed in as I laid out for her everything that had been happening over the last couple of weeks. We hadn’t been in school from 6 weeks at this point and the test results were coming back in a way that felt troublesome. It was becoming clearer and clearer that we weren’t going back.

“Who’s headaches?” I paused, confused.

“…. you know, his headaches… Beaudin! All last year….” she always remembered things better than I did.

“You remember, right? When you picked him up from school he’d always complain about his head?”

Oh My God, the headaches. My heart sank.

How could I not have remembered them?