Jasper man raising money for costly treatment

Photos by Marlena Sloss/The Herald
Danny Barnett of Jasper hugs his sister, Crystal Barnett of Loogootee, as she leaves after a visit while his wife, Beverly, left, sits at Beverly's mother's home in Huntingburg on Wednesday. Danny was diagnosed with cancer in 2016, underwent chemotherapy and treatments, was in remission for 18 months and cancer resurfaced in December. The family is raising money for a new drug treatment and donations can be made at https://www.gofundme.com/f/medicine-for-danny. "It's just so exhausting and there's not an end to it," Danny said.

By ALLEN LAMAN
alaman@dcherald.com

JASPER — Danny Barnett just wants his life back.

He wants to go back to work. He wants to wake up in the morning and feel anything but tired. He wants answers, explanations to make sense of what he’s going through and how he can fight through it.

Since the summer of 2016, the Jasper man has battled a rare form of cancer that has rocked his world. Now, in his third bout with the disease, Danny is entering uncharted territory. To receive a new treatment doctors recommend, he needs to raise $125,000.

“I guess the main thing is that it’s just so exhausting,” Danny, 44, said as he fought through tears. “And there’s not an end to it. It just keeps going.”

The disease manifested in the form of bruises. He and his family didn’t think much of them at the time, but as they grew and expanded, so did their concern. The first doctor thought they were chemical burns. He was later misdiagnosed with stage 4 of T-cell lymphoma. A skin biopsy nearly a year later revealed the final verdict — and a much grimmer revelation.

Danny did have cancer. But not just any form. Tests showed that he had blastic plasmacytoid dendritic cell neoplasm, an extremely rare and aggressive type that attacks bodily organs.

“I would have had a better chance of winning the lottery than [getting] the cancer I got,” Danny said. “Why couldn’t I win the lottery?”

In Danny’s case, the disease stormed his skin, leaving him physically plagued with dark sores, at least one of which ballooned to the size of a grapefruit.

“They call it the widow maker,” Danny explained. “Because usually you don’t know where you’ve got it and you just die.”

According to the Leukemia and Lymphoma Society, little data exists regarding BPDCN and there is no established treatment. The combination of a bone marrow transplant from his sister, Crystal, and extremely high doses of chemotherapy wiped the affliction into remission for 18 months. It resurfaced in December.

Crystal Barnett of Loogootee and her brother, Danny Barnett of Jasper, hold up their tattoos which commemorate the day Crystal donated her bone marrow to Danny at Patty Chandler's home in Huntingburg on Wednesday. "It makes me think how lucky we are to have him," Crystal said about the tattoo.

Now, he is basically a “guinea pig,” explained his wife, Beverly. IU Health has only treated two other patients with BPDCN. Both have passed away.

Danny wasn’t worried after his diagnosis. When the cancer came back, he was scared. Now in his third fight, that feeling is intensified.

“Because they don’t know what they’re going to do after this,” he said of his doctors. “They don’t have a clue.”

Beverly later added: “It’s a struggle not knowing what our next step is.”

But Danny keeps fighting. His family is both his support system and the reason he doesn’t give up.

He is currently undergoing an oral chemotherapy pill that works well with leukemia and lymphoma patients. It is designed to attack the bad cells in his body, but can leak into the bloodstream and cause a major drop in a person’s white blood cell count and cause other side effects.

If the cancer doesn’t respond to it, another type of chemotherapy can be tried, but there’s no guarantee it would work. His IU Health doctor wants him to try a drug that was recently introduced.

Called Tagraxofusp, the FDA-approved medication has never been given in Indiana — or any IU hospital in the world — and carries risks of its own. Capillary leak syndrome could be triggered, causing tiny blood vessels to irreversibly leak into the body and further deteriorate Danny’s quality of life. Spinal fluid leakage is also a possibility.

But the family believes that if it could save his life, the risks are worth it.

The cost for five doses of the medication is $250,000, and Danny’s medical insurance will only cover half the price tag. Those five doses may be enough. Or he may require more.

His family has reached out to organizations for help, but so far, they haven’t had any luck. Those who would like to donate to Danny can do so here.




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