Jhaysonn Pathak is Determined to BEAT the Odds, Again

Jhaysonn Pathak is in the fight of his life.

He’s been here before. Six years ago, an aggressive form of Hodgkin’s Lymphoma nearly killed him—and would have, but for his refusal to give up, his family’s devotion, and help from then-state Senator John Thrasher, the media and Mayo Clinic. Together, they triumphed against cancer—and the Medicaid bureaucracy—to save his life. Today, Jhaysonn is cancer-free.

In a twist of fate, now the cure is killing him. If he doesn’t get treatment—and soon—it will be too late.

In 2008, Jhaysonn was a typical college grad struggling to pay student loans and find his place in the world. The double-major Stetson University alum (music technology and classic guitar performance) did a turn studying Chinese medicine, and worked at a sushi restaurant in Deland, where he was happy but broke, before finding his dream job teaching English to children in South Korea.

“Always dreamed of backpacking across Europe, going on train rides … I wanted to do worldwide organic farming,” he says.

At first, his parents were less-than-thrilled to learn that their youngest son was moving a world away. That quickly changed when they saw how happy he was there.

Six months later, in March 2009, Jhaysonn was headed home to Jacksonville with, as he says, Hodgkin’s Lymphoma as his carry-on. Ahead of him lay years of treatment, including more than 150 bags of chemo, radiation, the works. Eventually, with nothing more to offer, doctors told Jhaysonn to get his affairs in order and seek palliative care, that there was nothing more to do.

Some people would’ve given up. But the Pathaks aren’t some people.

They found a targeted chemotherapy at Mayo Clinic that had a chance of beating the cancer back long enough for the stem cells his brother donated to create an immune system for Jhaysonn, then fought tooth and nail and enlisted a coalition to get Medicaid to approve it.

Miracle of miracles, it worked.

But the cells that helped save Jhaysonn’s life have turned on him, causing graft versus host disease (GvH), attacking his lungs and giving him bronchiolitis obliterans (BOS). With less than 20 percent of lung function remaining, Jhaysonn, who turns 33 on March 15, is in end stage lung disease. Simple activities exhaust him. His immune system is so compromised that the germs on a crowded elevator, or airport, or department store are life threatening. When he is not in the hospital or the doctor, he is at home, focused on getting better.

Diminished lung capacity causes CO2 to build up, which, coupled with the ravages of GvH and years of strong medicines, cause periodic fogginess that makes Jhaysonn pause in the middle of a sentence, or struggle to find a word.

But the words flow easily from behind the oxygen mask he wears 24/7 when he talks about South Korea, the doctors who have gone above and beyond for him, the band he was in at Douglas Anderson, Saws, which was inspired by Tool. When he mentions corresponding with Trent Reznor (yes, the Trent Reznor), his eyes light up behind the glasses he wears because the GvH has turned his tear ducts into scar tissue. “He would email me,” he says, incredulous.

Though disease has taken much from Jhaysonn, it has not taken his spirit, nor his humor, nor his faith. He jokes that if his blood were found at a crime scene, because of the transplant, authorities would arrest his brother, chuckles at how messed up it is that even emergency room doctors know who he is. He says that faith keeps him going and believes that God isn’t done with him yet. He’s not done with life, either.

Last year, Jhaysonn asked doctors to try mesenchymal stem cell (MSC) regenerative therapy. On their GoFundMe page for medical costs, Jhaysonn explains that these cells “play a part in building the human body.”

He’s received one vial so far—the only one Mayo had left from a trial last year—and it helped his lungs and GvH a little, but he needs many rounds of treatment. There are clinics that offer it, but, as is often the case, it isn’t covered by insurance.

So the Pathaks are raising money, giving everything they have to save their youngest and leaving the rest to God.

“I’m on a tightrope. I gotta get these stem cells in me to stay on that tightrope,” Jhaysonn says.

Jhaysonn’s story underscores the madness of the American healthcare system that lets people die when there is a cure. But in the midst of the paperwork, the parade of doctors, nurses, emergency room visits, bills, pills, hopes borne and hopes dashed, is a man with much life left in him yet.

When a reporter asks what he would do if tomorrow he wakes up healthy, he smiles. “Go for a run on the beach.”

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Learn more about Jhaysonn Pathak and donate to his treatment at gofundme.com/help-jhaysonn-stay-alive.

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