Jeff Cornejo is a problem-solver. A self-described nerd and laptop whiz, this Charlottesville, Virginia, father of two ladies has all the time relied on his means to make things better for his children. So when his teenage daughter grew to become wracked with excruciating ache, Jeff couldn’t relaxation till he and his ex-wife discovered a strategy to repair their daughter.
It took 37 days, 3 journeys to the emergency division, just a few misdiagnoses, and the collective experience of seven completely different pediatric specialists. Plus, numerous hours of fear and analysis. However lastly, the dad and mom discovered their teen’s unexplained ache was from a uncommon kind of blood most cancers.
Cornejo admits his persistence was worn skinny by a typically sluggish and overly difficult healthcare system. However he’s additionally extremely grateful to UVA Well being Kids’s — particularly pediatric oncologist Brian Belyea, MD, — for saving his daughter’s life.
“Dr. Belyea is a superhero. If I may erect a monument in his honor or pay for his child’s faculty, I might try this,” Jeff says.
However discovering the fitting repair for his daughter’s abdomen ache was not straightforward.
Unexplained Abdomen Ache That Would not Cease
In February 2018, not lengthy after her 16th birthday, Cornejo’s youngest daughter, Madeline, began complaining of abdomen pains. Her main care physician ordered blood work. When that turned up nothing, they thought perhaps she had a abdomen bug or recurring signs from an earlier bout with Lyme illness. Solely excessive doses of ibuprofen gave her aid. However by summer season, she barely made it via summer season camp in Pennsylvania. She had insufferable abdomen ache nobody may clarify. Most cancers was not high of thoughts. As quickly as she acquired residence, her dad and mom took her straight to the closest emergency division.
“We spent 20 hours there, doing every kind of blood work, X-rays, a CT scan. The CT picture confirmed a few of her lymph nodes have been giant however nothing too regarding.” Medical doctors have been stumped, Cornejo shares. They stated go to UVA Well being Kids’s the place they’ve pediatric GI specialists.
Pediatric GI specialists discovered Madeline had abdomen ulcers. So that they took her off the excessive doses of ibuprofen. It was the one factor that gave her aid, however it was additionally what doubtless induced the ulcers. They handled her ulcers, hoping her ache would go away. She solely acquired worse.
Many Specialists & Exams Discover No Clear Solutions
Madeline was screaming and writhing in ache for 20 hours a day, till collapsing from exhaustion. They went again to the emergency division.
“At UVA, specialists from seven departments got here via and interviewed us,” Cornejo says. Many checks have been run. The dad and mom repeatedly heard, ‘We don’t know what’s mistaken.’ Cornejo admits this expertise was extremely irritating. “In my skilled life, I do plenty of troubleshooting. With the ability to remedy issues is so a part of me. I’ll take a look at something and suppose, ‘How will we make that higher and the way will we remedy that quicker?’”
At one level a health care provider informed Jeff and his ex-wife that their daughter may very well be psychotic and wanted to go to Maryland so she may very well be admitted to a psychiatric ward for teenagers.
Most cancers on the Root of Her Unexplained Ache
Trying again, Cornejo realizes the street to diagnosing a posh and uncommon most cancers just isn’t all the time a transparent path.
“We felt we have been pushing the hospital system. However we didn’t have the choice of giving up,” Cornejo says. “To their credit score, they labored via the method,” he provides.
Together with pediatric specialists in GI, rheumatology, infectious illness, and ache administration, an oncologist (most cancers professional) was a part of Madeline’s care staff — despite the fact that initially most cancers was an unlikely suspect because the supply of her unexplained ache. However then extra clues surfaced. Madeline developed a fever, her irritation markers have been off the charts, and her in any other case flat abdomen swelled. In 3 days, she regarded 30 weeks pregnant.
When different specialists and coverings failed to assist, Belyea stated, ‘I’d like a crack at this once more.” He took fluid from her stomach and a small pattern (biopsy) of a swollen gland in her neck. Lastly, they knew what they have been battling — anaplastic giant cell lymphoma, anaplastic lymphoma kinase-positive (ALK+ALCL).
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Clear Path Ahead After Lymphoma Analysis
Although they have been dealing with a life-threatening most cancers, in some methods the worst half was over. That they had an evidence for her ache — and a plan of motion to kill the most cancers cells.
Spending a lot time on the hospital, Cornejo was by now on a first-name foundation along with his daughter’s medical doctors. He vividly remembers the day Brian Belyea took cost of his Madeline’s care.
“Right here’s the place Brian actually begins to shine,” Cornejo says. “He’s already my superhero and now he is available in and takes it as much as one other stage. He’s seen me for a month and found out how I tick. So he is available in unbelievably ready and says, ‘Right here’s the deal. We’re going to begin treating tomorrow. I do know you might have a bunch of questions:
- What’s the survival fee?
- Are there experimental remedies?
- What’s the very best therapy?
- What does UVA do and never do?
- Do we now have to journey?
- Is there one other physician?’”
Belyea answered each query intimately. He earned Cornejo’s full belief.
A Treatment for Teen’s Unexplained Ache & Most cancers
Delving into all the pieces he may discover on his daughter’s situation and therapy, Cornejo discovered the therapy was developed 30 years in the past. However Belyea and the oncology staff at UVA Well being Kids’s are so good at managing unwanted side effects that the survival fee is above 90%.
“Seems he is the physician for my child’s most cancers,” Cornejo says.
Belyea instantly acquired Madeline snug with a cocktail of medicine, together with opioids, to alleviate her ache. Her medicines have been so effectively managed, she by no means developed any dependency on them. The hospital workers have been high notch, Cornejo says.
The chemotherapy therapy wanted to kill each most cancers cell in her physique was grueling. Madeline misplaced her hair. She shrunk to lower than a measurement 0. She was out and in of the hospital for 197 days.
Most cancers & Ache Gone, Fear Stays
With little one life specialists and a highschool trainer on workers at UVA Well being Kids’s, Madeline had a number of assist throughout her most cancers therapy. She was capable of proceed her junior 12 months from her hospital room. This was pre-COVID, so Madeline’s pals came over and one among her dad and mom slept over each evening. Cornejo arrange his consulting enterprise from her hospital room.
Immediately, Madeline is prospering in school and stays cancer-free. She doesn’t suppose a lot about that point in highschool when her unexplained ache turned out to be most cancers. However her dad and mom can always remember having a child face most cancers. Jeff even documented the ordeal intimately. He took and printed greater than 5,000 black-and-white images. He and his ex-wife crammed 4 notebooks with each symptom, check, and therapy. He has a brand new mission to assist make the healthcare system work higher.
Madeline’s dad and mom will all the time fear about their little woman. However when you might have a baby who’s had most cancers, you’ll all the time have to remain in your toes. You hope the most cancers by no means comes again however are all the time on the look ahead to it: ‘A cough isn’t only a cough,’ Jeff says.