Carlos’s dad, Luis, is frequently away from home with his work in the Air Force. So when Luis was home for two solid weeks in May 2018, and Carlos just wanted to be held by him, it seemed maybe the boy was just being a little clingy.
But Carlos was also having leg cramps. Figuring he was low on potassium, his parents gave him bananas to eat. It didn’t help. “He started having them all day and all night,” said his mom, Nadia. “He wasn’t able to sleep, and he couldn't do anything in the daytime either. So we took him to the doctor.”
Then Carlos stopped walking. “And that's not Carlos,” said Nadia. “He likes to jump on the trampoline. He taught himself how to do backflips. He likes to climb. All of these things that he likes to do, he didn't want to do. He didn't even want to get up. So we took him back to the doctor, and she said that it was growing pains.”
Because Carlos is non-verbal due to autism, his parents urged the doctor to dig deeper. What if the boy was in pain, and couldn’t tell them?
What followed were more symptoms, more doctor visits, tests, hypothesized causes and a growing frustration. So, Nadia took him to the emergency room.
“It felt weird sitting in the ER with people who looked like they needed to be there and I'm in there because my kid has fever and leg cramps. They were like, ‘Are you sure you don't wanna take him to the urgent care?’ We were like, ‘No, we want him here.’ So they did blood work, and took us to the back, and like nine doctors came out. And it's never a good thing when you see that many doctors. My husband was at work, and I'm a stay-at-home mom, so I had all four of my kids. It's summer, we're in a new town so we don't have family there or anybody, and we had been in the ER since 8:00 in the morning and it was going on noon.”
They told her the worst case scenario was an autoimmune issue, and the best case scenario was a viral infection.
Nadia took to her personal circle, sharing information and requesting it. She called her sister-in-law who works at a hospital, and her friend who’s a doctor.
“We got his blood work back, and I started Googling and to Luis, I'm like, ‘I think our kid has cancer.’ And he was like, ‘Get off of Google. Google's not your friend when you're sick.’”
When the doctors came back in, they had still more doctors with them. There were some spots showing up in Carlos’s lungs. He would be admitted to the ICU and referred to St. Jude Children’s Research Hospital.
Family members traveled in to help with the other kids, and Carlos arrived at St. Jude in late May. Now there was an answer – a scary one. He had stage 4 neuroblastoma, with tumors in his lungs and his bones.
But treatments invented at St. Jude have helped push the overall childhood cancer survival rate from 20% to more than 80% since it opened in 1962. His treatment has included antibody therapy, chemotherapy, surgery, a stem cell transplant and radiation therapy.
And, Carlos has made strides in eye contact and affect while at St. Jude. His likes his doctor, because she lets him play with her stethoscope. He likes his nurses, and even gave one a high-five – something his parents had never seen him do before. He also loves Bingo Night in St. Jude housing, said Nadia, “and I think that's pretty neat.”
Carlos also likes lights, colors, music, blocks, the Rubik’s cube and sorting things by color and shape. He enjoys organizing everything from his mom’s pantry to messes made by his little brother.
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