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Below is an article that ran in the Emporia Gazette on Nov. 27, 2009 about Braysen Butter. The paper has given us permission to reprint it with their name and reporter’s byline. 4-Year Old Battling Cancer By Bobbi Mlynar Emporia Gazette Braysen Butter was in Children’s Mercy Hospital again this week to receive a platelet transfusion and other treatment needed after his temperature spiked over the weekend. The fever is a common reaction to the chemotherapy treatments he has been receiving. The weekend trip was the second in less than a week, and is something the family may need to do on a regular basis until the series of chemotherapy has ended. His mother, Jessica Butter of Madison, and his stepmother, Carrie Butter of Strong City, stopped in at Newman Regional Health’s emergency room to get an antibiotic started before heading on to the hospital in Kansas City. Braysen’s doctor had made arrangements with Newman to give him the dose of antibiotic because it is needed within 30 minutes of the fever’s start. This week, both women talked about Braysen’s diagnosis and what lies ahead as the blended family members work together to get Braysen the treatment he needs. The child had awakened in the middle of the night on a Saturday in early October, complaining of pain in his stomach. The following Monday, he was taken to his family doctor, Dr. William R. Browning, in Madison, who sent him to Emporia for urine and blood tests and a chest X-ray. “Everything came back fine,” according to a journal account on the CaringBridge website. A few days later, the pain returned and on Oct. 6, he was taken to the emergency room at Newman, where he had an ultrasound on his kidneys and bladder. Again, everything was reported normal. On Oct. 14, the pain returned and the family did as Browning had advised: they called the emergency room at Children’s Mercy Hospital. When the call eventually was returned, the nurse said that unless his pain was lasting an hour or more, they likely would send him home. “Thank God Dr. Browning just said to take him next time he had the pain,” Jess Butter wrote. When Braysen awoke not feeling well and the discomfort continued through the morning, Jess and Carrie took him to Overland Park Children’s Mercy Urgent Care. By midnight, a CT scan revealed that he had a tumor near his left kidney and needed to be transferred to the Children’s Mercy hospital in downtown Kansas City, Mo. The pair left Overland Park about 1 a.m. and with no experience with city driving, overshot Kansas City and ended up in Independence, Mo. “After driving around for two hours and pulling two different cops over for directions, we made it (there) about 3 a.m.” “They actually found the tumor on Oct. 16 and then it would have been the following Monday he had a biopsy, so it would have been that week we found out,” Carrie Butter said, taking a turn on the telephone from Braysen’s hospital room while Jess lay in bed with Braysen to keep him company. Within a few days after arriving at Mercy, biopsies and more tests led to a diagnosis. The tumor had characteristics of neuroblastoma, but it had begun to fall apart when the surgeon performed the biopsy. Approximately 75 percent of the original tumor remains to be treated. “Actually, he has a tumor that’s by his left kidney,” Carrie Butter said. “I think a lot of people think it’s attached to the kidney, and it’s not.” The disintegration of a quarter of the tumor gave Braysen some relief, though. “The small amount that they took out must have done the trick, because he hasn’t had any more of the pain that he was having,” she said. Tests have revealed that the 4-year-old also has bone cancer. Braysen has been categorized as being in Stage 4 of neuroblastoma, a high-risk stage determined by age, bone involvement and location of tumors. The child’s family is optimistic about his chances of being in the 15 to 30 percent of children in Braysen’s age group that achieve remission. “He’s a strong little boy,” Carrie Butter said. “He’s doing really well.” Braysen’s mother, Jess, talked more about her son’s condition when she was able to leave Braysen’s bed a short time later. The child has several more series of chemotherapy treatments, she said, then — if the tumor has shrunk enough — he will have surgery to remove the rest of the tumor. In the interim, doctors hope to remove stem cells from Braysen’s bone marrow in preparation for a stem-cell transplant in about six months. The next few months will not be easy ones for Braysen or the family. “Most of the parents here say they spent the first four months here,” Jess Butter said of the repeated trips to Mercy. “They can’t fight any bacteria. They can’t fight any germs at all. That’s why it’s so critical to get that antibiotic started right away at Newman’s.” So far, Braysen has had two blood transfusions and, during the weekend, a platelet transfusion. He has a Hickman catheter installed long-term and calls the apparatus his “tubies,” with one white tube to receive medications and a red tube for blood drawings, which Jess does on Mondays and Thursdays. Then she takes them to Newman laboratory, which forwards the results to a nurse practitioner at Children’s Mercy. Any occasional shots that are needed come through tiny needles administered while the 4-year-old sleeps. “He doesn’t realize he’s getting any shots and he doesn’t have to anticipate it all day,” Jess Butter said. Without the pain, Braysen is feeling better. “He doesn’t realize there’s anything wrong,” Jess Butter said. “We try to tell him that there’s stuff inside him that’s making him sick. He says, ‘No. My belly feels better, my leg doesn’t hurt. I feel better now.’” The family solved an auxiliary effect of the chemotherapy with cooperation from one of Braysen’s siblings, 7-year-old Dawson Butter. Braysen’s hair had begun to fall out last week on the way back from Kansas City. “It was all over the back of the seat on the way home,” Carrie Butter said. On Saturday, before the fever returned, Braysen got a buzz haircut. “And his 7-year-old brother got a buzz cut with him, so that was pretty neat,” Carrie Butter said. Braysen also has a 10-year-old sister and 15-year-old brother, Chelsea (Kelly) and Izak Butter. ###
—Braysen Buttler Story - November 27, 2009
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