Mason Kelly is 2 years old; he has five older brothers and sisters and a new little sister and he has stage 4 neuroblastoma cancer. For the past four months, Mason has been living in hospitals, after his Oct.11 diagnosis, six days after his second birthday.
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On Feb. 11, Mason came home as a trial, something that both delighted and terrified his parents, Brian and Thi Kelly.
“He needs to be home with his family, ” said Thi, “but his immune system is so fragile.”
They worried about what would happen if Mason’s temperature went up; what if someone coughed on him and he got sick? They couldn’t take Mason out of the house, so someone must always be home with him, and they couldn’t let anyone but family in the house. After completing half of his course in chemotherapy, Mason has little immunity to fight disease. He has MRSA and lives with a port for antibiotics in his chest. He has cavities in his teeth from the acid in the vomiting caused by the chemo, night terrors and he has no hair. The night the Kellys brought Mason home after four months of isolation in a hospital room, he didn’t recognize the stars and moon as being outside. But, Mason Kelly is alive and the tumor that had a chokehold on his spine and diaphragm is shrinking.
Neuroblastoma cancer occurs rarely, only about 500-600 cases a year, but it is one of the three most common childhood cancers.
“It happens in utero,” explained Thi, “and incubates in the body like a ticking time bomb, then it attacks and is very aggressive.”
No cause has been determined for the disease and it is rarely hereditary. It’s difficult to diagnose because symptoms don’t always appear or appear only when the disease is well advanced and they are non-specific — fatigue, joint weakness, bruising, loss of appetite.
“He fell off a bike that was too big for him on his birthday,” said Thi. “Then he just wasn’t the same. He had bruises and they were getting worse instead of better.”
Three days later, Thi noticed that Mason didn’t want to walk, so she took him to the doctor.
“There’s really no screening for this disease; the blood tests and labs don’t show it,” said Thi. “The doctor sent us to ER where they gave Mason an x-ray, which showed an anomaly.” A decision to do a CAT scan was made and a tumor was found, stretching from diaphragm to sternum and wrapping itself like a hand around Mason’s spine. It was spreading out and Mason was diagnosed with stage 4 neuroblastoma.
“It was almost into his bone marrow and if it had been diagnosed a week later, the doctors said they wouldn’t have been able to treat him,” said Thi. “We were in the ER for about six hours. It felt like days as we found out something was wrong, then really wrong and then life threatening.”
Mason’s blended family is handling the family crisis in its own ways.
“The first two weeks all we did was cry,” said Thi, “but I contacted all their schools to let them know what was happening and they have been very helpful.”
Mason’s illness isn’t the first crisis the family has faced together. A daughter, born in 2009, died of Sudden Infant Death Syndrome.
“When Mason was born, we were terrified for the first year and then we were so glad that he had made it past that SIDS benchmark and then, a year later came the cancer diagnosis,” said Thi.
It’s difficult for the three oldest children, Alanna, 16, Christopher, 14 and Alyssa, 13, to talk about Mason’s illness. His 6- and 7-year-old brothers, Caden and Patrick, know something is going on, said Thi, but they don’t comprehend the severity of the problem. Marissa is only 6 weeks old and her baby life is surrounded by constant change.Thi was almost seven months pregnant with Marissa when Mason was diagnosed. “I delivered in Kaiser Roseville, with Mason upstairs in the same hospital,” she said.
The family is four months into a treatment process that will last until Mason is 5 and ready for kindergarten. His trial run at home ended a couple of days after it began. Mason is back in Kaiser Roseville waiting for his fourth and then fifth chemotherapy sessions. Next will be a surgery to remove the tumor, six weeks in University of California San Francisco’s Children’s Hospital for stem cell transplant, then two more months of chemo followed by six weeks of radiation. Three months after that, a course of extremely aggressive chemo will follow and then two years of labs to monitor his blood every three months until he can be declared cancer-free.
Neuroblastoma often reoccurs and doctors have told the Kellys that if even one cancer cell remains and the cancer reoccurs, Mason will have only a 20 percent chance of survival. “This is his one chance,” said Thi.
The stress of isolation due to his depressed immune system and complications and of the almost constant medical procedures have left him unable to achieve deep sleep and subject to night terrors. Still, Mason’s happy-go-lucky attitude keeps him smiling most days and attracts the nursing staff. “The window to his room was by the nurse’s station and he would wave at everyone who came by,” said Thi. With little to do except watch television, Mason has become an expert on cartoon characters.
Restricted from food because of the fluid that built up in his lungs after chemo, Mason would beg his mother for food because he was so hungry. He was confined to a bed and had to have physical therapy because his muscle mass was disappearing. Medication made him bloat up and his hair fell out.
“He didn’t look like my child anymore,” said Thi. “He was huge.”
The Kellys have received help. Parents pick up their two oldest children to carpool them to schools in Sacramento; Blue Oak Montessori organized meals and so did the Mormon church and another church near the Montessori school. The American Cancer Society provided gift cards for food when they stayed at the hospital and all kinds of people have offered their services to help with projects like clearing up fallen oaks on their property. Dr. Garland Windle of Georgetown, Brian Kelly’s former next-door neighbor in the Bay Area while Brian was growing up, was the family dentist after Brian moved to El Dorado County in the mid-1990s. He has been a support for the Kellys, and Dr. Greenbaum, who took over the practice after Windle’s retirement, has continued the help, supplying many practical items for the family. “The office staff has been so wonderful,” said Thi. “They even supplied toilet paper when we were out of it.”
Brian has been on disability from his state job since after Mason’s hospitalization and is coming to the end of it. The Kellys’ three vehicles all require maintenance because of the constant commuting to hospitals, which is also costing them a great deal of money for gas.
“All of the medical procedures are covered because we have Kaiser, but there is so much more that keeps coming and we are having a hard time keeping up,” said Thi. They heat with wood and propane, but don’t have $500 for the propane bill and the wood is running out. “Our oldest are on partial scholarships for Jesuit and St. Francis, but we may have to pull them out. We signed a contract for a year.”
Thi’s mother in Washington visits occasionally to help and her sister, Becky, is organizing a 5K run in May from Folsom to El Dorado Hills to raise funds for Mason’s care.
Help is appreciated, but there is a cost, the Kellys have found.
“It’s been life-saving and we are so grateful, but it’s also been hard,” said Thi. “We have no control over our lives and often volunteers have their own idea of what needs to be done, instead of what we would like to do. We don’t want to hurt anyone’s feelings by refusing their help.”
“We have to take it day by day,” said Brian Kelly. “Our schedule changes based on Mason’s condition.”
“My children are having to grow up to help out, especially our middle child,” said Thi. “One of us is always with Mason in the hospital and the other needs to be here with our other children, which spreads us pretty thin. I’ve given up being perfect and trying to keep up with meals and cleaning. I keep up the laundry, doing it when I get home from the hospital, but I’m emotionally and physically exhausted.”
Further details about the Run for Mason will be forthcoming and an account for Mason Kelly to help with expenses has been set up at Golden One Credit Union, at 3966 Missouri Flat Road in the K-Mart shopping center. The account number is 1588156.