Douglas High School junior James Lamb Jr. has been fighting the effects of spina bifida, a congenital disorder that left him paralyzed from the waist down, since he was born. In early January, doctors found a large, cancerous tumor and he's now fighting for his life.
He's had 35 surgeries in his 17 years to combat the effects of the disease, but this challenge is proving to be his greatest, according to his mother, Shaw Lamb.
"He's been through hell his entire life," she said. "He's always picked himself up, but he's having a hard time with this one. He's strong, but his spirits are down."
James has been lying in a room at the University of California San Francisco since mid-December after his symptoms, which included severe swelling, began. He's had two sessions of aggressive chemotherapy to shrink the cancerous tumor, but the medications have caused sores in his mouth and inhibited production of the white cells in blood needed to fight disease.
"It's very aggressive chemotherapy," Shaw said. "He's talking through his teeth because of the sores under his tongue and on his cheeks. It's very painful."
James is a bright, outgoing kid with a great sense of humor, who loves going to Douglas High School and loves his friends in the church youth group at Valley Christian Center, said Marty Folin, James' grandmother.
She would like him to have a laptop so his friends could contact him in his room to lift his spirits.
"He's really lonesome," she said.
"He does miss his friends," Shaw said. "We've lived in the valley since 1990. Even if we just had a Valley full of prayers, it would an amazing thing."
James has rhabdomyosarcoma, a fast-growing, highly malignant tumor that accounts for over half of the soft tissue sarcomas in children, according to information provided by the Pediatric Oncology Resource Center.
James's tumor, which is located in the pelvic area, is about the size of a plate. The chemotherapy will hopefully shrink the tumor so it can be surgically removed, but that decision won't be made for at least another 12 weeks, after the chemotherapy is completed, Shaw Lamb said.
The Lambs were dealt another blow Jan. 13 when Nevada Medicaid, the organization that has covered their son's medical expenses for years, cancelled its contract with the University of California in San Francisco.
Medicaid has offered to cover 10 percent of the Lamb's expenses over the next 90 days.
"They want everyone to be treated at Nevada facilities, but they don't have this type of facility in Northern Nevada," Shaw Lamb said. "Children come from Reno for special services at UCSF."
Lamb would be transferred to Las Vegas, but scar tissue from previous surgeries and the fact that his lower pelvic area has been rebuilt through his surgeries would create difficulties for surgeons and other physicians not familiar with the case, Shaw said.
"Medicaid is our biggest ordeal right now," she said. "If we can't get Nevada Medicaid to pay for his treatment here he will be moved to Sunrise Hospital in Las Vegas. If we move him there, his physician said his body isn't strong enough to start the chemotherapy up again.
"Moving him to Las Vegas would be a life-threatening option in our opinion," Shaw Lamb said.
The couple have contacted Gov. Kenny Guinn and Sen. Harry Reid's office as soon as they got the letter from Medicaid. At press time, they had received a call back from Harry Reid's office, where officials said they would make some calls.
"We haven't heard from them since," Shaw Lamb said.
She and her husband, James, who is disabled, have been staying at Koret Family House free of charge since first bringing their son to San Francisco in mid-December. He is their only child.
"He's my only grandchild," Folin said.
People from all over the country are sending James e-mails, but he can't respond to them because he's in isolation due to his low white cell count and can't access the hospital computer, Shaw said.
"A laptop would really help," Folin said.
Susie Vasquez can be reached at svasquez@recordcourier.com or 782-5121, ext. 211.
BREAKOUT
The Lambs have two weeks to find housing in California, a move that could qualify James for California medical benefits if Medicaid Nevada will no longer fund James's treatment.
They would prefer to stay close to Carson Valley, in Antelope Valley or South Lake Tahoe and would appreciate hearing from anyone with a three-bedroom home that accepts pets.
"Jamie is so connected to his school and youth group," James Lamb Sr. said. "We want to stay close so we can drive him back and forth to church and school."
Anyone with a home for rent can contact the Lambs at (775)450-5145.
