JACKSONVILLE, Fla. -- Jhaysonn Pathak has one chance to live.
But a government rule stands between him and the life saving stem cell transplant he needs to fight a rare form of cancer. And his case is far from unique.
Beneath the mask that protects him from the outside world, there is the hint of a smile on Jhaysonn's face. He's talking about guitar.
"It's so versatile. When I say guitar it could be anything from classical to rock to jazz. It's guitar," he said.
His music is about the only thing that can still make it past the fatigue.
A Born Musician
"First, I played cello. My brother's friend came over one day and started playing Metallica. That was life changing," he said.
A stand-out classical guitar student at Douglas Anderson, Jhaysonn went on to Stetson University where he helped his professor create an entirely new major.
"My second semester, I was studying recording techniques. That spiraled into me helping him in the creation of a music technology degree with technology circuit boards, etc.," he explained.
But after graduation, when music didn't pay the bills, Jhaysonn took a teaching job in South Korea. "I found that in South Korea they really need English teachers. Not so much classic grammar - although I would teach that too - but how to make your English sound authentic."
The country with its rich culture and fascinating history also helped him find a new authenticity in his music.
"I was writing a lot of music - a lot of things I thought were really good - and lyrics because I want to also be a writer. I want to do a lot of things."
But in April 2009, those wants fell behind one basic need: survival.
"I had this big lymph node pop up on my neck. At first I thought it was a virus or a fungal thing. So I prayed about it, and changed my diet a little bit, but it didn't get better," he said.
Diagnosis and a Long Road to Recovery
Jhaysonn was diagnosed with a rare form for non-Hodgkins Lymphoma. He came back to the states and began a grueling course of chemotherapy.
"As soon as they would drop the bag on... boom, I would crash," Jhaysonn said.
Twenty-two treatments later, the cancer is still there, and Jhaysonn is spent. "I'm tired," he said.
His immune system shot, Jhaysonn spends his days in isolation, mostly on his computer. And his music? "No, I'm pretty much dead inside creatively."
It's something his mother, Theresa Pathak, can barely discuss without dissolving into tears.
"Hard, heartbreaking. You learn to take one day at a time. You look for that spark whenever he smiles. In a lot of ways, it feels like that smile is gone. I just want that smile back," she said.
Jhaysonn is down to the final chemo treatments available. His only hope for survival rests in the stem cells of his big brother, Matthew, a soldier in the U.S. Army.
Jhaysonn's father, Ron Pathak, said it's a miracle match.
"Only 25 percent of siblings are a match and he's a perfect match. When they were younger, people always thought they were twins," he said.
"It's really fitting that he would play such a huge role in Jason's healing. Without Matthew, we'd be looking all over the world. It's just another sign that God's hand is on this. I just wish we could do something about the political nonsense."
The "political nonsense" Pathak is referring to could cost Jhaysonn his life. Uninsured, he's had to rely on Medicaid for his treatments. Everything was approved for the transplant and then at the last moment, a bombshell worse than any chemo.
"A week before Christmas, we hear from Medicaid...(saying) you don't have enough in-patient days to do the transplant. They are saying there are only 30 days a year available through Medicaid," Ron said.
"Because he doesn't have enough of those days left, they are denying his transplant."
If Jhaysonn waits until July 1, his days renew, but his doctors said that will be too late.
"The thing that infuriates me about this whole (health care) argument that's going on now out there, is that they are using this death panel title as something that's new," Ron Pathak said. "That's such a lie. It's already there."
Ironically, had Jhaysonn stayed in South Korea, he wouldn't have this dilemma.
"Whenever I mentioned he was living in South Korea, people would say 'how courageous' because they think of Korea as a third-world country and maybe in some ways it is, but there, his full treatment - 100 percent - would be covered," said Theresa Pathak.
"But he comes home to the United States and it's 'sorry, you're uninsurable'. Really? How is it in the greatest country in the world we can't take care of the least?"
A Possible Answer
The Pathaks found a sympathetic ear in state senator and cancer survivor, John Thrasher, R-8th District.
"It should never happen in America," he said. "It shouldn't happen anywhere, but certainly not with the resources we have in this country."
After a months worth of work from Thrasher's office and a media spotlight on the issue, Medicaid agreed to extend Jhaysonn's hospital days.
But Thrasher concedes that if Jhaysonn, not his father, had been forced into weeks of phone calls, arguments and paperwork, he probably wouldn't have made it very far.
"He probably would not have, and there are others in his situation," Thrasher said.
In fact, there are 10 other patients at Shands Gainesville in that same situation right now. Thrasher said he will work to help those 10 as well.
Jhaysonn's family, while grateful, has been here before. They've come close, only to have a last-minute glitch. Their only alternative is to raise money to cover the costs.
Any money not used for Jhaysonn's care, they will donate to those 10 other patients.
Still, they said there shouldn't be a price tag on their son's life - or anyone else's.
"Your children always look to you to provide," said Theresa Pathak. "We thought we had the Medicaid system that kicks in and helps you when you you can't do anymore. Well, finish the job."
For now, for Jhaysonn, it appears the job will be finished. When it is, his mother hope he can get back to being her son again, and the music can return to their lives.
"There's a lot of moments in my head when I say I'm not a statistic, I'm an individual", said Jhaysonn.
Update on Jhaysonn 2/18/11
Jhaysonn was admitted to Shands Gainesville on February 11th. He received Matthew's perfectly matched cells on February 18th. His father tells us, so far, so good. The next 30 days will be critical.
Stetson University's School of Music in Deland is hosting a benefit concert for Jhaysonn on March 3rd at 7:30. For more information follow the link below.
MORE: Help the family with expenses, or become a blood donor for Jhaysonn.
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