Teenage Woman’s Unexplained Ache Results in Uncommon Most cancers Analysis

Jeff Cornejo is a problem-solver. A self-described nerd and laptop whiz, this Charlottesville, Virginia, father of two women has all the time relied on his skill to make things better 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 option to repair their daughter.

It took 37 days, 3 journeys to the emergency division, a number of misdiagnoses, and the collective experience of seven completely different pediatric specialists. Plus, numerous hours of fear and analysis. However lastly, the mother and father 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 gradual 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 school, I might try this,” Jeff says.

However discovering the appropriate repair for his daughter’s abdomen ache was not simple.

Unexplained Abdomen Ache That Would not Cease

In February 2018, not lengthy after her 16^th birthday, Cornejo’s youngest daughter, Madeline, began complaining of abdomen pains. Her major 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 reduction. However by summer season, she barely made it by means of 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 dwelling, her mother and father took her straight to the closest emergency division.

“We spent 20 hours there, doing all types 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 mentioned 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 reduction, however it was additionally what seemingly brought about the ulcers. They handled her ulcers, hoping her ache would go away. She solely acquired worse.

Many Consultants & Assessments 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 means of and interviewed us,” Cornejo says. Many checks have been run. The mother and father repeatedly heard, ‘We don’t know what’s flawed.’ Cornejo admits this expertise was extremely irritating. “In my skilled life, I do quite a lot of troubleshooting. Having the ability to resolve issues is so a part of me. I’ll have a look at something and assume, ‘How can we make that higher and the way can we resolve that sooner?’”

At one level a physician instructed 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 will not 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 means of 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 seemed 30 weeks pregnant.

When different specialists and coverings failed to assist, Belyea mentioned, ‘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).

Clear Path Ahead After Lymphoma Analysis

Despite the fact that they have been dealing with a life-threatening most cancers, in some methods the worst half was over. They’d a proof 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 degree. He’s seen me for a month and discovered 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 might have a bunch of questions:

• What’s the survival charge?
• Are there experimental therapies?
• What’s the perfect remedy?
• What does UVA do and never do?
• Do we have now 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 every part he may discover on his daughter’s situation and remedy, Cornejo discovered the remedy was developed 30 years in the past. However Belyea and the oncology workforce at UVA Well being Kids’s are so good at managing unintended effects that the survival charge 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 drugs have been so nicely managed, she by no means developed any dependency on them. The hospital employees have been high 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 measurement 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 instructor on employees at UVA Well being Kids’s, Madeline had a lot of assist throughout her most cancers remedy. She was in a position to proceed her junior 12 months from her hospital room. This was pre-COVID, so Madeline’s mates came over and one in every of her mother and father slept over each night time. Cornejo arrange his consulting enterprise from her hospital room.

As we speak, Madeline is prospering 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 mother and father 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 remedy. He has a brand new mission to assist make the healthcare system work higher.

Madeline’s mother and father will all the time fear about their little lady. 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.