Jeff Cornejo is a problem-solver. A self-described nerd and computer whiz, this Charlottesville, Virginia, father of 2 girls has always relied on his ability to fix things for his kids. So when his teenage daughter became wracked with excruciating pain, Jeff couldn’t rest until he and his ex-wife found a way to fix their daughter.
It took 37 days, 3 trips to the emergency department, a few misdiagnoses, and the collective expertise of 7 different pediatric specialists. Plus, countless hours of worry and research. But finally, the parents learned their teen's unexplained pain was from a rare type of blood cancer.
Cornejo admits his patience was worn thin by a sometimes slow and overly complicated healthcare system. But he’s also incredibly grateful to UVA Health Children's — especially pediatric oncologist Brian Belyea, MD, — for saving his daughter’s life.
“Dr. Belyea is a superhero. If I could erect a monument in his honor or pay for his kid’s college, I would do that,” Jeff says.
But finding the right fix for his daughter's stomach pain was not easy.
Unexplained Stomach Pain That Wouldn't Stop
In February 2018, not long after her 16th birthday, Cornejo’s youngest daughter, Madeline, started complaining of stomach pains. Her primary care doctor ordered blood work. When that turned up nothing, they thought maybe she had a stomach bug or recurring symptoms from an earlier bout with Lyme disease. Only high doses of ibuprofen gave her relief. But by summer, she barely made it through summer camp in Pennsylvania. She had unbearable stomach pain no one could explain. Cancer was not top of mind. As soon as she got home, her parents took her straight to the closest emergency department.
“We spent 20 hours there, doing all kinds of blood work, X-rays, a CT scan. The CT image showed some of her lymph nodes were large but nothing too concerning.” Doctors were stumped, Cornejo shares. They said go to UVA Health Children’s where they have pediatric GI specialists.
Pediatric GI specialists found Madeline had stomach ulcers. So they took her off the high doses of ibuprofen. It was the only thing that gave her relief, but it was also what likely caused the ulcers. They treated her ulcers, hoping her pain would go away. She only got worse.
Many Experts & Tests Find No Clear Answers
Madeline was screaming and writhing in pain for 20 hours a day, until collapsing from exhaustion. They went back to the emergency department.
“At UVA, experts from seven departments came through and interviewed us,” Cornejo says. Many tests were run. The parents repeatedly heard, ‘We don’t know what’s wrong.’ Cornejo admits this experience was incredibly frustrating. “In my professional life, I do a lot of troubleshooting. Being able to solve problems is so part of me. I’ll look at anything and think, ‘How do we make that better and how do we solve that faster?’”
At one point a doctor told Jeff and his ex-wife that their daughter could be psychotic and needed to go to Maryland so she could be admitted to a psychiatric ward for teens.
Cancer at the Root of Her Unexplained Pain
Looking back, Cornejo realizes the road to diagnosing a complex and rare cancer is not always a clear path.
“We felt we were pushing the hospital system. But we didn’t have the option of giving up,” Cornejo says. “To their credit, they worked through the process,” he adds.
Along with pediatric specialists in GI, rheumatology, infectious disease, and pain management, an oncologist (cancer expert) was part of Madeline’s care team — even though initially cancer was an unlikely suspect as the source of her unexplained pain. But then more clues surfaced. Madeline developed a fever, her inflammation markers were off the charts, and her otherwise flat stomach swelled. In 3 days, she looked 30 weeks pregnant.
When other specialists and treatments failed to help, Belyea said, ‘I’d like a crack at this again.” He took fluid from her abdomen and a small sample (biopsy) of a swollen gland in her neck. Finally, they knew what they were battling — anaplastic large cell lymphoma, anaplastic lymphoma kinase-positive (ALK+ALCL).
Is Your Child Dealing with Unexplained Pain?
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Clear Path Forward After Lymphoma Diagnosis
Even though they were facing a life-threatening cancer, in some ways the worst part was over. They had an explanation for her pain — and a plan of action to kill the cancer cells.
Spending so much time at the hospital, Cornejo was by now on a first-name basis with his daughter’s doctors. He vividly remembers the day Brian Belyea took charge of his Madeline’s care.
“Here’s where Brian really starts to shine,” Cornejo says. “He’s already my superhero and now he comes in and takes it up to another level. He’s seen me for a month and figured out how I tick. So he comes in unbelievably prepared and says, ‘Here’s the deal. We’re going to start treating tomorrow. I know you have a bunch of questions:
- What’s the survival rate?
- Are there experimental treatments?
- What’s the best treatment?
- What does UVA do and not do?
- Do we have to travel?
- Is there another doctor?’”
Belyea answered every question in detail. He earned Cornejo’s complete trust.
A Cure for Teen’s Unexplained Pain & Cancer
Delving into everything he could find on his daughter’s condition and treatment, Cornejo learned the treatment was developed 30 years ago. But Belyea and the oncology team at UVA Health Children’s are so good at managing side effects that the survival rate is above 90%.
“Turns out he is the doctor for my kid’s cancer,” Cornejo says.
Belyea immediately got Madeline comfortable with a cocktail of drugs, including opioids, to relieve her pain. Her medications were so well managed, she never developed any dependency on them. The hospital staff were top notch, Cornejo says.
The chemotherapy treatment needed to kill every cancer cell in her body was grueling. Madeline lost her hair. She shrunk to less than a size 0. She was in and out of the hospital for 197 days.
Cancer & Pain Gone, Worry Remains
With child life specialists and a high school teacher on staff at UVA Health Children’s, Madeline had lots of support during her cancer treatment. She was able to continue her junior year from her hospital room. This was pre-COVID, so Madeline’s friends came to visit and one of her parents slept over every night. Cornejo set up his consulting business from her hospital room.
Today, Madeline is thriving at college and remains cancer-free. She doesn’t think much about that time in high school when her unexplained pain turned out to be cancer. But her parents can never forget having a kid face cancer. Jeff even documented the ordeal in detail. He took and printed more than 5,000 black-and-white photographs. He and his ex-wife filled 4 notebooks with every symptom, test, and treatment. He has a new mission to help make the healthcare system work better.
Madeline's parents will always worry about their little girl. But when you have a child who’s had cancer, you’ll always have to stay on your toes. You hope the cancer never comes back but are always on the watch for it: ‘A cough is never just a cough,’ Jeff says.
