Tomorrow is Oscar’s brain MRI. I’ve been sitting with that all week — the particular kind of dread that comes when you know what waiting rooms feel like, when you’ve done this enough times that hope and fear have learned to coexist in your chest at the same time. I needed to write this before we go. Not because I have answers. Because I have a lot of moms in my corner who I think might need to hear that they’re not alone in what they’re carrying.
Oscar started throwing up around eighteen months. We weren’t worried — kids eat too fast, it happens. But then he stopped gaining weight. And then he started losing it. Month after month, the number on the scale went the wrong direction, and by his three-year checkup we were finally sent to a specialist. We went in expecting a quick fix. A diagnosis, a medication, we move on. It was nothing like that.
He was diagnosed with EoE — Eosinophilic Esophagitis — at three years old. It’s a chronic allergic condition where white blood cells build up in the esophagus, making it incredibly difficult and painful to eat. There is no cure. There is only management. And for Oscar, management has been one of the hardest things our family has ever navigated.
Eight years later, here is what that has actually looked like: sixteen scopes. Every product on the market tried and failed or stopped working. A dairy elimination diet. A full top-nine allergen elimination diet — do you know what it’s like to feed a child who can’t have wheat, dairy, eggs, soy, peanuts, tree nuts, fish, shellfish, or sesame? To pack his lunch every single day knowing that almost everything other kids eat could make him sick? Feeding specialists. Psychologists. Multiple specialists across multiple states. Years of appointments, blood draws, insurance calls, and sitting in waiting rooms trying to hold it together in front of your kid while you are absolutely not holding it together on the inside.
In late 2022 and early 2023 we hit a wall. Nothing was working. Oscar was really sick. The FDA approved treatment plans had all failed us and our only real remaining option was Dupixent — a biologic that had shown real promise for EoE patients. The problem: the retail cost is roughly $25,000 a month. You don’t just get an insurance approval for that. You fight for it.
We spent four months fighting. And then, right as we got approved, we switched insurance companies in January. My entire life for the month of December was phone calls — doctors, insurance companies, patient advocates, anyone who could help me get that approval in place the second our new plan went into effect on January second. I’ll always be grateful to the team at United Healthcare who had us approved in forty-eight hours once the plan went live. I will never forget that. You will never know what those forty-eight hours meant to our family.
After all of that, the medication didn’t even work at first. He seemed sicker than ever. We spent months adjusting the dosage, tweaking, waiting. And then finally something shifted. The right dose. Oscar started to get better. We exhaled.
And then the headaches started.
Mornings became a battle. He couldn’t wake up, couldn’t get out of bed. He was on the swim team and would finish practice and need to sit in his room for thirty minutes because his head was pounding. I told myself it was the EoE, or the medication, or just being a tired kid. Our doctor suggested we monitor it. I emailed her the same day and said I don’t want to wait — I will worry about a brain MRI every single day until we do one. So we did. Drove to Chicago, got it done, drove home. They said they’d call with results.
That night I got a MyChart notification referring us to neurosurgery. I googled everything, cried, and drank an entire bottle of wine. What the hell was wrong with my kid?!
That summer was filled with MRIs, sleep studies, and second opinions, and the diagnosis that came out of all of it was Chiari Malformation — a condition where brain tissue extends into the spinal canal and blocks the flow of cerebrospinal fluid. Serious enough that surgery was the recommended path forward. I remember we were on a family trip in Maine, pulling into my brother’s rental house driveway, and we sat in the car and had a video call with our doctor about scheduling brain surgery for my nine-year-old. Looking at this beautiful place and talking about this. I don’t know how we did it.
Oscar had surgery in September 2023 in Chicago. Walking out of that surgical floor while your child is on a table somewhere is one of the most surreal and gutting experiences of my life. Mike and I went to get breakfast and I’m pretty sure our waiter was about to call someone to “save me” — I sobbed silently the entire meal, couldn’t make eye contact with anyone, and we didn’t speak a word to each other. We just existed in the same space and tried to breathe. Afterward we walked to Lake Michigan and sat on the shore and watched the runners and the bikers and the waves and I remember wishing so badly that I was one of those people. That my head was clear. That I wasn’t sitting there in terror that something horrible was happening to my son.
My biggest fear wasn’t what surgery would do to his body. It was whether the boy who came out would be the same boy who went in. Whether he’d still have his spark, his personality, his absolute zest for life. He did. He came out exactly himself and I have never been more relieved by anything.
Since surgery the headaches seemed to subside, but we had a few other issues surface that took nearly a year to figure out and eventually led us to Mayo Clinic. Part of that process involved meeting with neurosurgery there to rule out whether what we were seeing was connected to his brain or the Chiari — it was not. His MRI looked good, with one exception: the fluid that had built up on his spine before surgery had never fully dissipated like it was supposed to. Since it wasn’t causing active problems they weren’t concerned, but we’d need to continue monitoring it.
In the fall of 2025 we finally got the news we had been chasing for eight years. Oscar’s first completely clean scope. Zero eosinophils. His EoE in full remission. Mike and I were ecstatic — Oscar was already waiting for the other shoe to drop. I hate that this is the way his brain works now. I understand it completely and I hate it for him. He has been through so much that he can’t fully let himself feel the good news without bracing for what comes next, and it breaks my heart even as I completely understand why.
He was right to brace. Because over the last several weeks the headaches are back. The exhaustion is back. The two things that have always been the loudest warning signs. And tomorrow we go back to Chicago and we wait and we hope.
Here is the part I don’t say enough out loud, and I’m saying it now because I think someone needs to hear it.
This is fucking hard. I am the expert on my son’s conditions — I do this willingly, it’s part of why I left my career, and I would not have it any other way. But nobody ever asks how you’re doing. Nobody thinks about what it costs the parents. Nobody talks about having to stay completely calm and positive in front of your kid while you are terrified on the inside, or about the tears in the car on the way home because that’s the only place you’re alone and you can finally fall apart. Nobody talks about getting hit with a devastating diagnosis and then walking back into the house and making dinner and helping with homework and pretending that the ground under you isn’t constantly shifting.
This most recent chapter has made me crave people who have actually walked this road. Not because the people in my life aren’t incredible — they are, and I’m grateful for every single one of them. But there is something about being truly understood by someone who has lived it that nothing else can replicate. If you’re that person — if you’re in the thick of something like this — I want to hear from you. I mean that.
I want to end with Oscar. Because he deserves that.
He is the bravest person I know. Not the bravest kid — the bravest person. He has been through more procedures, surgeries, dietary restrictions, and hospital stays than most adults will ever face, and he has done all of it with this warmth and kindness that I genuinely cannot explain. He makes people smile in waiting rooms. He checks on the nurses. He wants to start a foundation for kids going through what he’s been through — he’s been talking about it for years, and every time we start to build momentum something else happens with his health and we have to shift focus. But I know that when we do launch it, it will matter. Because that is who he is.
I am his mom and I am his advocate and I would do all of this a hundred times over for him. Tomorrow we go back to Chicago and we wait and we hope and we hold onto each other.
If you’re a mom driving home from an appointment with tears on your face because the car is the only place you’re allowed to fall apart — I see you. What you’re carrying is real and it is heavy and you are not doing it wrong. You’re not alone.
Send me a message. I mean it.
xo, Lauren