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Fighting the battle of his life
"Dean Moe Jr., 13, sat quietly, with hands folded at the family's big, dark wood dining table, his green eyes sparkling. It was a hint of the indomitable - and sometimes mischievous - spirit behind the eyes. Like most boys his age, he has to fend off the intrusions of lively younger brothers into his room and special stuff. Like many boys his age he struggles to master math, a mandatory skill for a future as an astrophysicist-astronaut. I want to help map some of the first exploration of Mars, he said, bright eyes snapping with excitement. But unlike most boys his age, a two-year battle with a rare cancer has given Dean Jr.'s first steps into young manhood a more deliberate tread. When I was his age all I thought about was girls and motorcycles, said Dean Sr., home on a break from his job as a Kitsap County Sheriff's deputy. The way young people with cancer such as Dean Jr. live day-to-day sets them apart from their peers, said his mother Jennifer. Almost all their life starts revolving around the cancer. Their perspective is totally different. It's not girls, it's not motorcycles, it's just about life and living your life to the fullest, not superficial things, she said. The family's life - and finances - have also revolved around Dean Jr.'s battle with a form of cancer so rare it took a pathologist in Texas to recognize it. They spent July and August at Ronald McDonald House at Seattle's Children's Hospital as Dean Jr. fought low white blood cell counts and fevers. They returned to their Port Orchard home only recently after one of Dean's close friends at the unit died. He decided he wanted to be in a more positive atmosphere, surrounded by his family, for this battle. But young Dean has been a fighter from the beginning. The second of the Moe's five children, he was nine weeks premature even though his mother spent 15 weeks in bed to prevent an early birth. Despite a birth weight of 3-1/2 pounds, he did really well. He wasn't on a respirator or ventilator, Jennifer said. He even went home sooner than other premies, at five rather than nine weeks, said Dean Sr. He's always been a fighter, said Jennifer. After that the only fighting he was involved with was squabbles with his three brothers and sister, until two years ago. when his parents took him in for a problem with his foot. His toe was real big and it kept breaking and breaking, Jennifer said. At first (the doctor) kept telling us it was trying to heal. Then we thought it might be a bone tumor. An orthopedic surgeon at Children's confirmed it. He said it was a kind of carcinoma that would come back in two years, and that it did start in the cartilage and went into the bone, said Jennifer. The surgeon also said the carcinoma wouldn't spread from young Dean's foot. He was wrong on both counts, said Jennifer. The cancer turned out to be a form of sarcoma, which starts in soft tissue. Dean Jr. had two tumors, one in his foot and one in his lung. But the surgeon didn't think the two tumors were related, said Jennifer. After samples were sent to pathologists all over the United States, one in Texas identified it as fibromixoidsarcoma. It normally strikes adults, and is so rare only 27 adults and six children were reported diagnosed with it, said Jennifer. The surgeon amputated her son's toe and removed the lung tumor. Then Dean Jr. went through intensive chemotherapy that ravaged his immune system. He's had severe allergic reactions to medicines such as Benedryl, used to control nausea, and can't receive blood transfusions, said his mother. The first time they hit him with the hardest chemo regimen they could, she added. After the chemo, Dean Jr. had CT scans every three months, and magnetic resonance imaging and bone scans. Bone scans can not only tell if it moves in the skeletal structure, but in the soft tissue, said Dean Sr. When his son went back for the routine scans in July, an X-ray revealed another tumor right next to where they removed the first. They wanted to wait a month and see if it grew. By August, the tumor had not only grown, it changed behavior as well. (The X-ray) showed bright spots, which showed it was growing bone on one side, said Dean Sr. The family - they've included Dean Jr. in all decisions from the beginning - had three choices: do nothing, remove part of the lung, or do another course of chemo. It didn't take me very long to decide, said Dean Jr. He was willing to go along with removing part of the lung but he didn't want tumors removed one at a time. It hurt too much, because of the garden hose-sized tube used to drain fluids from his lungs after the operation, he said. The family chose to go with chemotherapy, using a drug called Gemcitabine. It's approved for treatment of pancreatic cancer in adults. But for Dean Jr., it's experimental. Doctors discovered one of the side effects of the drug was that it inhibited growth of new blood vessels to the cancer to feed it. Dean Jr. is doing better on this regimen, said Jennifer. He's regained some of his weight, seven pounds, he lost from the first time. It's been a month and a half, and he still has his hair also, she noted. He's still thin, but solid muscle just from playing around, doing things like climbing trees and scuffling with his siblings. Even though his immune system is suppressed, he hasn't been as sick, or as susceptible to illnesses as his brothers and sisters. Young Dean is also home schooled with his other siblings, Britany, 15, James, 12, Charles, 6, and Andrew, 2. Jennifer Moe credits her son's upbeat attitude and positive outlook for how well he's doing. A practical joker at times, Dean Jr. once switched leads on his heart monitor and pretended to be dead, totally panicking his nurse. But the tears come and his mother's voice quavers when she talks about reality and the future. We told them we didn't want to know survival rates, because it's all or nothing, she said. We've seen kids with a 90 percent survival rate die, and some with a zero survival rate go home. You do it or you don't, said Dean Sr. Or as young Dean put it, quoting the sage Yoda from The Empire Strikes Back, (Do, or do not.) There is no try. "