Zoe Wisnoski's son has a high fever so she searches for answers that are not always so easily given.

Zoe Wisnoski is a mom, adventurer, seeker of truth, and a person who tends to overshare. She lives in the tundra of Minneapolis, and drags her kids across the globe on experiences they may or may not want to be a part of.

Transcript

So, something you should know about me, I'm a Googler. Like, I just hoard data. In current form, that mostly surrounds my children and passion projects, but in a previous life, like pre‑children professional, I was a policy analyst.

I also like to pride myself with the fact that I'm no ordinary Googler. I keep my deep dives strictly peer‑reviewed. This is also known as academic snobbery.

But two‑and‑a‑half years ago, days before lockdown, my son got a fever of 102 degrees. It didn't go away. So, every diaper change we took, we recorded his temperature, monitoring him.

Days went by, weeks, and finally an inpatient stay where we saw every specialist under the sun and they couldn't figure it out, like even with all of the data that we had gathered on his temperature and our charts and printouts. They just didn't know.

One doctor even suggested that I stop taking his temperature and that I was going to make myself crazy, but I couldn't. My two‑year‑old was sick and they didn't understand why and it's all I had. I was already crazy.

So, we kicked over to hematology oncology and a very skeptical head of department did a bone marrow draw. After we left the hospital, we went home and I just felt this rush of relief. The doctor really seemed like he didn't think it would be anything. I was just so happy to rule out the word cancer, like that word that just sticks in your gut. Nobody wants it. I was really excited to get out of that and, in my head, it was done. The procedure was done and, therefore, the worry was gone.

We get home and my mom's there. She's cooking and making all the comfort and gets my son set up with Mickey Mouse in the den. I had this urgent need to go outside and to move. It was sunny and beautiful and there were these, you know, the white‑speckled flowers. It speckled the ground that we walk by. Like, this creek down the block it was melting. I just had to leave.

So, me and my mom we went for a walk. It was wonderful. I hadn't really talked to her in ages because of COVID. We just took a breath and it was the first time I ever felt like I could step away. I just unloaded to my mom, like this manic stream of consciousness for this walk and it was so lovely. I needed it so much.

Flash forward to us getting home. We walk inside and we step inside the house. My husband comes up, like aggressively almost, and he's like "Mimi,” that's what my son calls my mom, “you need to go now."

I get a little defensive. I'm like, "You don't talk to people like that. What are you doing?"

I turn to my mom and she's just pale. She's pale as a ghost. And she's like, “Okay, okay.”

That is what dropped my stomach. It wasn't my husband’s, who's the kindest soul ever, abnormal get‑out mode.

But she hugs me and she whispers in my ear, like, “Call me as soon as you can,” and just leaves.

I turn to my husband and he starts saying words like abnormal findings and leukemia and cancer. Apparently, in the 20 minutes that I let myself finally have on that walk, the doctor had called and they think it's fucking cancer. They think it's cancer.

So, we walk back into the kitchen to call the doctor and it's really dark. I remember just how our kitchen doesn't have like a lot of natural light in it, so even though it was a bright day, our lights weren't on and we didn't turn them on. We just sat at the island and we called him.

When he answered the phone, okay, this is a weird part of this moment, but when he answered the phone, there was air in the background and I remember thinking that this guy is going to play golf. I have no idea where I got that idea because, clearly, the head doctor would not tell us that he's going to go play golf this afternoon. But maybe it was because it's nice out or like I could hear the windows down, but I still am in this moment of outside this walk and haven't transitioned.

And then he says the sentence. “This is never the call we want to make." That is so vivid.

The next 10 minutes are taken up with this, like, word storm. It's very physical. We're like dark statues in the middle of the kitchen and everything is coming at us.

“You know, he has abnormal findings and they can't tell if it's ALL or AML,” which, apparently, are two different types of leukemia, “but this one has better odds and this one has a harsher treatment.” It's like a wave. It's a tidal wave.

At some point, I try to get the doctor to give me a percentage of likelihood that this actually is cancer, because he keeps saying, “We're not sure,” but, “probably” and, “maybe”. After I push him, my takeaway is that they're 80% sure.

I cling to that 80%. There is an 80% chance my child has cancer. And my mind really doesn’t compute that 20% of hope, unknown. All I'm drawn to is that 80%, that worst‑case scenario.

Again, when you don't have, you don't know. Like, I don't know.

So, we go on with the conversation. He's going to need a central line as soon as possible, because, regardless of what it is, they're going to need to start chemo. And we'll get him booked for Friday. I don't remember what day of the week, but Friday is what they said.

And then he goes, “Or, you know, if you want the weekend, we could do Monday.”

Just stop. Like, why would we wait a weekend? Let’s do this as soon as possible.

I can't compute it. And, finally, I understand that Sunday is Mother's Day, and he's asking me if I want to celebrate myself instead of get him the care he needs as soon as possible. I know he was being kind, but no, no, we do not need to do that.

So when we hang up the phone there's silence. I can't even hear Mickey Mouse in the background in the other room. It's dark and there's just these two statues where we were.

I learned in this moment that me and my husband handle crises in very different ways. His is much better than mine, by the way.

I turned to him and I'm like, “I'm gonna go make some calls after I hug my son. I'm gonna go make some calls.”

And he's like, “Cool, I'm gonna sit with Riley and watch Mickey Mouse.”

I said, “Okay.” And I go outside and I walk down and around and back my yard over and over and over while I call every single person with any connection to medicine that I can think of. I'm calling like old childhood classmates that I do not keep in touch with anymore, asking and I just need to know is this where we should be? Is this the best facility to treat him? Should I be flying somewhere else? What do I do? Just grasping, grasping for that data and that straw and that plan, because, in my mind, once we start, once we start chemo, it will be really hard to change. I don't know if that's true, but that is what I grasped too.

I finally go inside. It's pretty late. I get my son to sleep and we go into the bedroom. I look my husband in the eye and I hadn't done that yet. But I look him in the eye and we say it, we say the word, cancer. And it becomes real, like this is a possibility.

The doctor calls back in the morning. Lots of words were said, but I don't really have the memory. The memory that I take away from that call is there's a 40% chance he has cancer now and a 60% chance that it isn't, because some things are confusing.

And it wasn't cancer, thank God, but we also never really found out what it was. After nine months of fever onset, a doctor tried a treatment that was able to get rid of the fevers. Genetics came back a month or two after that 80% with the diagnosis of Tatton‑Brown‑Rahman Syndrome, something that was so rare that, at the time, which is only a few years ago, only 200 people were estimated to be diagnosed, TBRS, Tatton‑Brown‑Rahman syndrome doesn't really explain those nine months of fevers, but it confirms the fact that data is a privilege that the rare disease community does not have.

And so we continue. We monitor. We intervene when we need to. But I do now understand not to blindly grasp at the imperfections and use some critical thought, that the why doesn't really always matter, even if I am still demanding impossible statistic from every unwilling doctor.