Aaron Lentz, 19, has battled a rare form of disease all of his life, never growing to accept it, always hoping there would be a cure.
He has Neurofibromatosis type I or NF-1, a tumor disorder that is caused by the mutation of a gene on chromosome 17 that is responsible for control of cell division. It creates tumors throughout his body. Most of them are benign.
But in January, on a routine check up at the National Institute for Health in Bethesda Md., Lentz found out one of the tumors on his back had become cancerous. It is a really aggressive form of cancer called malignant peripheral nerve sheath tumor or MPNST. It is a type of cancer that occurs in 8 to 13 percent of people with NF1.
He needed to have radiation immediately because the tumor had wrapped itself around a major blood vessel. Removing it would have been too risky, doctors said.
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“Some times I feel like I just can’t catch a break,” he said. “When I heard that, it just was the worst thing I’ve ever heard in my entire life. It was like a sucker punch from out of the darkness.”
Lentz, who lives with his grandparents in Garner, has struggled with the disease since he was 10 months old. It is a genetic disorder he inherited from his mother’s side of the family, His younger sister also has the disease.
The tumors growing on his body cause him pain. Some on his thighs and back. You can see them through his clothes. And it has gotten to the point where he can no longer walk without some type of assistance.
“I look in the mirror, and I don’t like myself,” Lentz said. “I don’t like the way I look.”
Aaron’s mom, Sheri Ezzell, moved the family to Florida about two years ago, to have a warmer climate for both kids, his grandmother said. But Aaron was not able to get proper medical care there for his disease.
So he moved back to Garner, while his mother worked to provide them money. Doctors in Florida told him they couldn’t handle his disease.
“This tumor grew so large that it actually grew over my nerves,” Lentz said. “So I can slap my leg as hard as I can. I can put a really cold drink on it, I can put a really hot drink on it. I will not feel it on my skin.”
“Nobody has heard of Neurofibromatosis,” Susan Lentz, his grandmother, said. “Nobody has heard that it can be pretty bad and Aaron can attest to that.”
Nearly half of the people who have the disease got it from their parents.
He was diagnosed with the disease when he was a baby. About 1 in 3,000 people have the disease. Dr. Brigitte Widemann, senior investigator and head of the Pharmacology and Experiemental Therapeutics Section at the National Institutes of Health, said some cases are more serious than others.
Some with the disease can function normally, like Aaron's mother, while those like Aaron live in constant pain.
But Widemann said doctors and researchers do not know why.
“That is one thing we don't understand yet,” Widemann said. “Some have severe manifestations and others have fewer.”
Aaron Lentz and his family have been seeing Widemann at the National Cancer Institute since he was seven.
“He’s a fabulous young man,” Widemann said. “I remember when I saw him in the very beginning. Aaron enrolled in one of my clinical trials.”
She said she told him that she wasn’t sure that she could shrink the tumor, but she may be able to stop the tumor from growing.
“He told me, ‘That’s not what I want. I want this to go away quickly. I want to be Spiderman,’” Widemann recalled Aaron telling her. “I will never forget that.”
Although doctors have not found a cure, Widemann said she and others are working hard to find one.
“I think hope is a really important concept,” she said. “There’s a lot of work going on. Over the past 15 years I have been working in the field, we have made great process.”
“He’s a brave young man.”
Many surgeries, many pills
He takes more than 20 pills a day, most stop the pain. Then comes radiation Monday through Friday at Duke University Medical Center.
He’s had about 10 surgeries throughout his life, including one for a broken leg. The hospital is almost like his second home, he says.
Susan Lentz works at Cracker Barrel, but she’ll soon have to stop because of a knee replacement. Aaron’s mother is a licensed massage therapist at Massage Envy in Florida. She moved back to Garner now that her son has cancer but she needs a North Carolina license to work.
“I’m sure I can find a job here, but are they going to have to be understanding about me having to take time off if he’s got to take time of for chemo,” Ezzell said. “They would only be so understanding to a point I think.”
The family lives off the social security money from Aaron’s grandfather.
Their medical expenses are paid for through Medicaid, but they need help paying the rest of the bills because no one has a reliable income. The family is trying to raise $25,000
When asked whether she some times feels guilty, Ezzell said, “I can’t help but feel that way, because I passed it down.” I just sometimes want to go outside and scream.”
Tuesday was Aaron’s last day of radiation.
Susan Lentz said Aaron will go back to NIH on April 15, three weeks after his final radiation treatment. A PET scan will determine what the next step will be, whether surgery or chemotherapy. If the tumor is still not operable, doctors will need to start chemotherapy immediately. But the ideal situation will be to have surgery.
And maybe this once, Aaron will catch a break.
How to give
The family has a go fund me account and is trying to raise $25,000 to help pay the bills. To donate go to gofundme.com/kxuyaw