|By Jaclyn Cosgrove, The Oklahoman, Oklahoma City|
|McClatchy-Tribune Information Services|
"Mama, how much does Papa Ken's medicine cost?" the 6-year-old girl asked her mother.
"It costs lost of money, Baby," her mother said.
"Well, if I save my allowance for two months, I will give it to him, and then he will have enough money to get better."
By the end of the two months, Emerson's hot pink piggy bank will have about
If Emerson's grandfather,
"The prognosis is -- without treatment at this point, they're saying 24 months or less," Jolley, of
For the past several months, Jolley, 64, has debated with leaders at the
The VA has offered him other forms of treatment, but none have been shown to be effective in stopping the rare form of cancer he has, Jolley said.
"Patients are screened for clinical trials, and those who meet eligibility criteria have the option to participate in a clinical trial," Huycke said.
In 2013, six patients at the
Nationally, the VA medical system has faced fierce scrutiny, with attention over the past few months focused on the delays that veterans face when seeking care.
Jolley has seen those delays in his cancer treatment.
Over the next year, Jolley would wait months at a time for testing and screening. Nine months after Jolley had his first appointment, a doctor at a Texas VA hospital would tell Jolley he was in stage four of his cancer diagnosis.
"You may not want to do anything at this stage," the doctor said. "Just go home and get your affairs in order."
Shortly thereafter, Jolley would learn he had neuroendocrine carcinoid cancer, a rare form of slow-growing tumors mostly found in the gastrointestinal system, although they can grow in other parts of the body, according to the
Jolley disagreed and sought a second opinion at
It's a similar advice that Dr.
Halfdanarson, a gastrointestinal oncologist at the
"This is almost never covered by insurance -- that is a recurrent problem every week in my clinic," he said. "And most of my patients can't afford to go abroad for treatment."
Halfdanarson said peptide receptor radionuclide therapy works essentially by taking radiation directly to the cancer cells.
With neuroendocrine cancer, radiation typically given to cancer patients is impractical, for the tumors are widespread, and a doctor would have to radiate a large portion of the patient's body, he said. Additionally, chemotherapy hasn't been found to be effective either, he said.
However, peptide receptor radionuclide therapy has been found to be effective in treating the type of cancer Jolley has. Unless patients in the U.S. can get accepted into a clinical trial,
Jolley took the Vanderbilt doctor's advice and went to
When he returned to
At this point, Jolley had exhausted his retirement savings, spending thousands of dollars to go to
For the past year, Jolley has tried to persuade the OKC VA to pay for the radionuclide therapy through a clinical trial in
This month, Jolley was accepted into that trial and received his first treatment, which cost about
So far, Jolley has paid for the trial with borrowed money, family help and donations.
"I managed to pay for the first one," he said. "I have no idea how I'm going to pay for the second, but the Lord will provide a way."
Jolley must pay for the drugs he receives because the trial isn't sponsored by a drug manufacturer or university, said
Cork said a veteran from
Meanwhile, no one at the OKC VA has returned Cork's calls to clarify why they won't pay for Jolley's treatment, she said.
"They're not even trying to help their veteran at this point," Cork said.
Beyond the VA, Jolley has private health insurance through
In the meantime, Jolley's family is fundraising. Beyond their piggy banks, they've planned online fundraisers, a community dinner in
Meanwhile, Jolley's cancer has spread to his bones. After receiving his first treatment in
"I am not a quitter -- I battle," Jolley said. "And I will give up when they put me six feet under."
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