It all began around June 2018. We were between pediatricians and, after five months of searching, finally found one we loved. My kids were rarely sick—maybe a cold once a year—so there never felt like an urgent need. We had only visited urgent care once before, for a sports physical for my oldest.
At the time, my youngest was six years old, and he suddenly couldn’t go to the bathroom normally. When he did, it hurt so badly he would cry. My oldest had dealt with something similar when he was younger, so we followed the same recommendations. But as the weeks went on, things didn’t improve—they got worse. He couldn’t lie down to sleep and ended up sitting upright all night. I rubbed his back through the darkness while he whimpered in his sleep, hurting even then. During the day he seemed okay because he was moving around, but the moment his body rested, the pain would return.
After a week of this, I realized I couldn’t fix it. That’s when the endless doctor visits began. In just one month, we went to urgent care at our doctor’s office eleven times. Each time, we were sent home. I felt dismissed, like they thought I was exaggerating or imagining it. No one seemed to hear me. The first three X-rays showed only a small blockage in his large intestine, and they labeled it constipation. We were told to do bowel cleanses. But the pain never stopped. Back we went. Over two months—countless visits, scans, enemas, suppositories, bowel cleanses, and sleepless nights—there were still no answers. Nothing.
A friend finally suggested her pediatrician, who worked in the same building as our local SUTTER Hospital. That’s when we met our angel, the light in this terrifying journey. On just our second visit, she ordered another scan and gave very specific instructions to the technician. The scan was done on a Friday. Saturday morning, she called me on her personal cellphone from home. She said she saw a small shadow behind his left lung that she didn’t like. I was a mess all weekend. On Monday, she sent us to another SUTTER Hospital an hour away for a specialized pediatric scan.
As a single mom, I had to keep working. My office sat between our home and the hospital. My son stayed with my mom during the day, so she picked me up on her way, and we headed out together. Thank God for my mother. I was a nervous wreck the entire drive, repeating to myself, My kids don’t get sick. I held it together with my best fake smile. His dad was overseas and had no idea what was happening—I kept telling myself there was no reason to worry him yet.
We finished the scan and started the drive home. We stopped for food, and then my mom dropped me at work. The moment I stepped out of the car, I broke down. I couldn’t stop crying. My co-supervisor told me to go home, but still in denial, I insisted I was fine. Ten minutes later—the longest ten minutes of my life—I left. I called my mom to meet me so I could pick up my son. We met in a Walmart parking lot when my phone rang. It was his pediatrician. The time was 4:47 p.m. Her office closed at 5:00, and we were still thirty minutes away. She told me she would wait for us and asked me to bring my mom. I put my son in the car and told my mom to follow me. I don’t remember the drive. I don’t remember breathing.
I’m usually the strong one in my family. I don’t cry—or at least, I didn’t used to. I barely remember what the doctor said because my sobbing drowned everything out. My mom, who is normally a total mushball, was the one who called Dad and listened carefully to every word. That night, they found the tumor, and we were admitted to the ICU. His tumor was the size of a softball inside his tiny body, pushing his intestines and causing the blockage that explained the constipation. It had caused scoliosis, shoved his heart over, and attached itself to his left lung. By Wednesday, we had a name: Ewing’s Sarcoma. And suddenly, everything moved fast.
Wednesday night, his superhero oncology team laid out the plan, and chemo began immediately. Within the first nine days after diagnosis, they removed his tenth and eleventh ribs, part of his ninth rib, and a quarter of his left lung. He handled chemo incredibly well. He was hardly ever sick. He was amazing—fighting this monster like a total boss. Because the chemo appeared to be working, the team decided radiation wasn’t necessary. After ten months of chemo, every other week for five days at a time, he beat it.
Then, during the week of his six-month checkup, he started feeling pain again. That same week, we learned the monster was back. Inside my head, I was screaming every F-word imaginable, but you never would have known from the smile on my face. My little guy looked at me and asked what the doctors were saying. They paused and stared at me. I felt my throat closing, but with that same forced smile, I said, “Well, buddy, the monster’s back, so we have to fight him again.” He gave me a fist bump and said, “We got this, Mama.”
Inside, I was shattered. I wanted to rip the monster out of him and put it into my own body. I wanted to scream and punch walls. Even now, I catch myself holding my breath. I was a full-blown mama bear—and completely helpless. Why couldn’t I protect my baby? I blamed myself. I was angry. On the drive home, he asked, “Should I be worried?” I told him, “You let me do all the worrying.” Then he asked, “Am I gonna die?” And I said, “HELL NO. You’re not going anywhere.”
This year, I sold my house so I could stay home and care for him full-time. It was, without a doubt, the best decision I’ve ever made. He had surgery again to remove what his surgeon now calls his “nubs”—the remaining portions of his ninth, tenth, and eleventh ribs—along with the placement of a chest tube called a Broviac for chemo. We call it his fourth nipple. The joke still makes him laugh.
One doctor didn’t want him to get a feeding tube, but watching him barely eat and lose too much weight terrified me, so I pushed. We tried the NG tube first, which goes through the nose into the stomach, but it didn’t work. He threw it up at least twice a week. After months of anxiety and constant replacements, we chose the G-tube, a direct feeding tube into his belly. After that, the vomiting nearly stopped.
He has now completed twelve months of chemo and six full weeks of radiation. We pray—constantly—that it never comes back. Ever. He is strong, stubborn, and determined. At nine years old, he knows exactly what he wants. His smile lights up a room, and his laugh is contagious. Out of a million UNO games, I think I’ve beaten him maybe five times. He’s the reigning thumb-wrestling champion in our family, no matter how hard I try. He’s incredibly smart and questions everything. He and his brother, seven years apart, are best friends—so close they might as well be twins.
As parents and grandparents, we know our children better than anyone. We know every scar, every mole. My mom and I saw what others didn’t—the darkness in his eyes, the pain in his body. When no one listened to him, we had to fight for his voice. We had to scream for him. I pushed and pushed until someone finally listened. Thank God for that pediatrician who went above and beyond, who trusted her instincts and ours. Because of her determination, his care began the very same night.
My message to other parents is simple: listen to your kids. You are their biggest advocate. Push. Don’t stop pushing until you get answers.
