‘I felt my throat closing. ‘Buddy, the monster’s back. We have to fight him again.’ He gave me a fist bump. ‘We got this, Mama.’: Mom shares son’s journey battling Ewing’s Sarcoma twice

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“It started around June 2018. We were in between pediatricians and finally found one we loved after 5 months. My kids aren’t usually sick — maybe a cold once a year, maybe — so the urgency wasn’t there to find one. We had gone to the urgent care maybe once for a physical for my oldest to play sports.

At the time, my youngest was 6 and he couldn’t go poop like normal and when he would, it would hurt so much he would cry. My oldest had trouble too when he was young, so we did what was recommended back then. But as the weeks passed, it got worse. He couldn’t sleep laying down, he slept sitting up. I rubbed his back all through the night, and he would whimper in his sleep from the pain. During the day, he was okay because he was moving around. Once his body was resting, the pain started.

This lasted a week and after that, I couldn’t fix it. Then all the doctor’s visits started. We had gone to the urgent care at our doctor’s office a total of 11 times in a month. They kept sending me home. I felt like they thought I was making this up. No one was listening to me. They couldn’t figure out why he was in so much pain. With the first three X-rays, they only saw a small blockage in his large intestine. They determined it was just constipation, so they suggested a bowl cleanse. The pain continued. Back to the doctors we went. In a span of 2 months— countless visits, scans, enemas, suppositories, bowl cleanses, and sleepless nights —and NOTHING.

One of my friends suggested their pediatrician, who was in the same building as our SUTTER Hospital in our town. This is when we met our angel, the light in this horrific journey. On our second visit with her, she requested another scan and this time, she was very specific with the tech. I remember the scan was done on a Friday. She called me from her cellphone from home Saturday morning, telling me she saw a small shadow behind his left lung she didn’t like. I was a mess all weekend. Monday, she wanted me to go to another SUTTER Hospital an hour away for a special type of scan for children.

Being a single mom, I had to work. My office was in between where we lived and where she wanted us to go for the scans. At the time, my son would stay home with my mom so on her way, she picked me up, and off we went. Thank God for my mother. As she drove us, I was a nervous wreck. I kept telling myself, ‘My kids don’t get sick.’ I was holding it together with the best fake smile. Dad was overseas and knew nothing going on, my thought was, why worry him for nothing?

We got the scan done and started driving home. We stopped to grab some food on our way back and then my mom dropped me off at work. Once I got out of the car, I couldn’t stop crying. My co-supervisor told me, ‘Go home,’ but still in denial I kept saying I was fine. After about the longest 10 minutes ever, I left. I called my mom so I could get my son from her. We met at a Walmart parking lot when I got the call from his pediatrician. It was 4:47 p.m. Her office closes at 5:00 p.m. and we were still 30 minutes away. She said she’d wait for us and to bring my mom. I put my son in the car and told my mom to follow me. I don’t remember the drive there. I don’t even remember breathing.

I’m usually the strong one in my family. I don’t cry… Well, I used to not cry much. I really don’t remember the conversation with the doctor. I couldn’t hear anything past my wailing. My mom, who is usually a mushball, called Dad and listened to everything the doctor said. That night, the tumor was found and we were admitted to the ICU. When we found it, his tumor was the size of a softball in his tiny body, pushing his intestines and causing the blockage, the reason for constipation. It caused him to develop scoliosis, shoving his heart over and it attached itself to his left lung. By Wednesday, we knew the type of cancer was Ewing’s Sarcoma and the ball started rolling.

Courtesy of Jennifer Badillo

Wednesday night, his superhero oncologists came up with the plan and chemo started that night. They removed his tenth, eleventh, and a portion on his ninth rib, and a fourth of his left lung, all within the first 9 days of diagnosis. He took extremely well to the chemo. He was hardly ever sick — he was amazing. He was fighting this monster like a total boss. This team decided he didn’t need radiation, because we thought the chemo was working. So, after 10 months of chemo, every other week for 5 days. He beat it.

Courtesy of Jennifer Badillo

The week of his 6-month check-up, he started to feel pain again. That week, we found out the monster came back. I was saying a lot of F-words in my head when they were telling me. You would never have known with the smile on my face. Here’s my little guy, looking at me, asking what were they saying. The doctors stopped and looked at me. I could feel my throat closing. I just said with the same stupid smile, ‘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.’

I wanted to die. I wanted to take the monster out of him and put it in my body. I wanted to scream, hit something. To this day, I catch myself holding my breath. Being such a mama bear and feeling so helpless. Why couldn’t I protect my baby? I blamed myself. I was so angry. On our way 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.’

Courtesy of Jennifer Badillo

This year, I decided to sell my house so I could stay home and take care of his needs. It was, by far, the best decision. He had the same surgery he initially had to remove what his surgeon now called his ‘nubs’ — the remainder of the ninth, tenth, and eleventh rib — along with a chest tube called a broviac to receive chemo. We call it his fourth nipple. He gets a chuckle with the nipple joke.

One of his doctors didn’t want him to get a feeding tube, but seeing him not eating and losing too much weight was concerning, so I pushed for the feeding tube. At first, we tried the NG tube, which is when the tube goes through your nose into your belly. This didn’t work. He would throw it up at least twice a week. After a couple of months of dealing with the anxiety of the tube getting replace, he decided on the G tube, which is a direct feeding tube in your belly. After that, he hardly threw up.

Courtesy of Jennifer Badillo

He just completed his 12 months of chemo, along with 6 full weeks of radiation. We can only pray it will never return, EVER! He’s strong and bull-headed. He knows, at age 9, what he wants and he’s determined. His smile can brighten up the room. His laugh is super contagious. Out of a million games of UNO, I think I might have beaten him five times. He’s a thumb wrestling champion in our family, and believe me I really try to win. He is so smart, he questions everything. His brother and he are 7 years apart, and they’re best friends. They could be twins.

Courtesy of Jennifer Badillo
Courtesy of Jennifer Badillo

As a parent or grandparent, we know our kids better than anyone else. We know where all their moles are and each of their scars. My mom and I could see what the doctors couldn’t. The blacking in his eyes. The pain in his body. We need to fight for his voice when no one would listen to him. We needed to scream for him. I pushed and pushed for a medical professional to listen. Thank God his new pediatrician was as worried as we were and she went above and beyond to find what no one else did. She pushed to have his care investigated, and with her determination, his care started the same night. My advice to other parents — listen to your kids, you are their biggest advocate. Push until you get results.”

Courtesy of Jennifer Badillo
Courtesy of Jennifer Badillo

This story was submitted to Love What Matters by Jennifer Badillo of Stockton, CA. You can follow their journey on Instagram here and here. You can support Mateo’s Go Fund Me page here. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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‘Miranda, stop it. You can’t be in that much pain. You’re being a killjoy. Knock it off.’ I was popping Advil. I lost all feeling in my leg.’: Teen battles Ewing’s Sarcoma after being written off, ‘I am a survivor, not a statistic’

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