Jeff Cornejo is a problem-solver. A self-described nerd and pc whiz, this Charlottesville, Virginia, father of two women has all the time relied on his capacity to sort things for his children. So when his teenage daughter turned 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 totally different pediatric specialists. Plus, numerous hours of fear and analysis. However lastly, the dad and mom realized their teen’s unexplained ache was from a uncommon sort of blood most cancers.
Cornejo admits his endurance was worn skinny by a typically sluggish and overly sophisticated healthcare system. However he’s additionally extremely grateful to UVA Well being Youngsters’s — particularly pediatric oncologist Brian Belyea, MD, — for saving his daughter’s life.
“Dr. Belyea is a superhero. If I might erect a monument in his honor or pay for his child’s school, I might do this,” Jeff says.
However discovering the precise 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 possibly 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 time, she barely made it by summer time camp in Pennsylvania. She had insufferable abdomen ache nobody might clarify. Most cancers was not prime of thoughts. As quickly as she received dwelling, 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 Youngsters’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, nevertheless it was additionally what probably induced the ulcers. They handled her ulcers, hoping her ache would go away. She solely received worse.
Many Specialists & Checks 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, consultants from seven departments got here by and interviewed us,” Cornejo says. Many assessments have been run. The dad and mom repeatedly heard, ‘We don’t know what’s fallacious.’ Cornejo admits this expertise was extremely irritating. “In my skilled life, I do a whole lot of troubleshooting. Having the ability to resolve issues is so a part of me. I’ll take a look at something and assume, ‘How will we make that higher and the way will we resolve that sooner?’”
At one level a health care provider instructed Jeff and his ex-wife that their daughter could possibly be psychotic and wanted to go to Maryland so she could possibly be admitted to a psychiatric ward for teenagers.
Most cancers on the Root of Her Unexplained Ache
Trying again, Cornejo realizes the highway to diagnosing a fancy and uncommon most cancers shouldn’t be 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 by 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 workforce — regardless 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 appeared 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).
Is Your Baby Coping with Unexplained Ache?
At UVA Well being Youngsters’s, we will help get your loved ones the solutions you want.
Clear Path Ahead After Lymphoma Prognosis
Regardless that they have been going through a life-threatening most cancers, in some methods the worst half was over. They’d 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 together with his daughter’s docs. 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 start out treating tomorrow. I do know you’ve got a bunch of questions:
- What’s the survival price?
- Are there experimental therapies?
- What’s the perfect remedy?
- What does UVA do and never do?
- Do we’ve got to journey?
- Is there one other physician?’”
Belyea answered each query intimately. He earned Cornejo’s full belief.
A Remedy for Teen’s Unexplained Ache & Most cancers
Delving into the whole lot he might discover on his daughter’s situation and remedy, Cornejo realized the remedy was developed 30 years in the past. However Belyea and the oncology workforce at UVA Well being Youngsters’s are so good at managing unintended effects that the survival price is above 90%.
“Seems he is the physician for my child’s most cancers,” Cornejo says.
Belyea instantly received Madeline comfy with a cocktail of medicine, together with opioids, to alleviate her ache. Her drugs have been so effectively managed, she by no means developed any dependency on them. The hospital employees have been prime notch, Cornejo says.
The chemotherapy remedy wanted to kill each most cancers cell in her physique was grueling. Madeline misplaced her hair. She shrunk to lower than a dimension 0. She was out and in of the hospital for 197 days.
Most cancers & Ache Gone, Fear Stays
With youngster life specialists and a highschool trainer on employees at UVA Well being Youngsters’s, Madeline had numerous help throughout her most cancers remedy. She was in a position to proceed her junior yr from her hospital room. This was pre-COVID, so Madeline’s mates came around and one in all her dad and mom slept over each evening. Cornejo arrange his consulting enterprise from her hospital room.
At present, Madeline is flourishing in school and stays cancer-free. She doesn’t assume 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 stuffed 4 notebooks with each symptom, check, and remedy. 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 lady. However when you’ve got a toddler 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.
