Louisville Magazine

AUG 2016

Louisville Magazine is Louisville's city magazine, covering Louisville people, lifestyles, politics, sports, restaurants, entertainment and homes. Includes a monthly calendar of events.

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Page 67 of 140

LOUISVILLE MAGAZINE 8.16 65 chest tube. at big plastic bottle of soda at the grocery store? at's slightly less than the amount of fluid drained. ey had arrived at the immediate-care center around 6:30. It was nearly eight hours later when the doctor at Kosair led Goodson and her husband to an empty room, made them sit. He said that Trinity had cancer. ey were almost certain that it was lymphoma and would know for sure later that afternoon, after testing. "I can remember walking through the hall as a zombie when I first heard the words," Goodson says. "In the beginning, I felt so alone." But the Goodsons haven't been alone. In her time at Kosair, Trinity has met other children — different diagnosis, perhaps, but same journey, same feeling of abnormality. You get close to families, trade shoulders to cry on. In Trinity's four years of treatment, she's lost some friends. "You never think that your kid is going to have to go to a friend's funeral so young," Goodson says. Trinity wanted the closure, attended the funerals if she could. Even in the midst of tragedy, support continues. "All the new families," Good- son says, "I'm able to tell them, 'is is a club that you never, ever, ever want to be a part of. But once you're in it, you're in it for life. You'll always have someone on your side.'" Trinity's fears upon hearing she had cancer were about missing school and losing her hair. "She had four people at school that actually shaved their head for her," Goodson says. Angus has been with Trinity since just after her first surgery, the first of many long nights and hospital stays. Angus is a stuffed frog, given to her by a friend's brother. Trinity's immune system is too weak for visitors. When arranging the interview for this piece, Goodson and I settle on a phone conversation. When her sisters, one older and one younger, ar- rive home from school, Trinity is confined to her room until they have showered and changed, removed any bacteria or viruses from the outside world. Her younger sister, now nine, has been going through this routine since kindergarten. "It's an ongoing joke with her," Goodson says. "We have to 'de-cootie-fy' from school." e Goodson household has three high-efficiency filters, an electrostatic unit on the furnace, ultraviolet light to kill bacteria. "Before I was even allowed to bring her home, when she finished with (a bone-marrow) transplant, I actually had to have Coit cleaners come out and clean my ductwork," Goodson says. Carpets were sliced from the floors to diminish stirring up dust mites and worse. When Goodson cleans the house with a mixture of alcohol and water, Trinity must stay in her room, avoiding the upswept dust. When Trinity first came home from the hospital, Goodson would change bed sheets daily, now does so weekly. Angus gets a bath once a week. Trinity rides to the doctor in a car for that purpose only — wiped down with the alcohol-water combo once a week, packed with clothes for her and Good- son. Designated last-minute bags stay in the house — for medicine, books and Angus. "We don't have two of Angus," Goodson says. "So Angus is one of the last things that gets thrown into her bag." "It's actually quite underwhelm- ing," says Dr. Alexandra Cheerva, Trinity's oncologist from the beginning. "ere's no surgery involved. ey don't have to go to any special room." A bone-marrow transplant is like a blood transfusion. An intravenous infusion through the central line, like a catheter — Trinity's in her chest — and the donor marrow is transplanted. For about an hour or two, Trinity only needed to sit in her patient room, decorated blue and lime-green, perhaps taking medication for slight nausea. Trinity's initial donor (neither sister was a match) started with a simple cheek swab to test for her human leukocyte antigen (HLA) typing, a protein marker that must match the patient's. Donors are on a worldwide registry. When doctors need a donor, they check the database, receiving basic information: matching HLA, gender, approximate age. Both Trinity and her donor were tested for illnesses or complications in the week prior to the transplant date. at donor postponed, then backed out. ey secured a second donor. (For a year after the transplant, neither the donor nor the Goodsons could make more than anony- mous contact, per the registry's rules.) Before the transplant, Trinity received high doses of chemotherapy and radi- ation to attack the cancer cells, leaving her in a "blank" — but very fragile — state. e donor bone marrow, or stem cells, provides white and red blood cells, as well as platelets. Usually, transplant recipients are immunosuppressed for about a year, a period in which they are susceptible to viruses, bacteria, germs. A week before Trinity was set to receive her transplant from the second donor, a nasal swab tested positive for a cold-type virus usually found in newborns. "All the chemo that she had basically killed her immune system so much that that's basi- cally what she was, a premature newborn," Goodson says. is road, these past couple of years post-transplant, have not been easy for Trinity. "It's been a long and complicated journey," Cheerva says, one that included brain surgery after an infection. Surger- ies to put in a central line, like a more permanent IV, or her port — a harder-to- access-but less-obtrusive line inside her right rib cage. Her immune system has improved over the two and a half years since her bone-marrow transplant, but not enough. After a stem cell boost in early June, her CD4 count, the measure of her immune cells, was up to 200. (Cheerva estimates a normal range would be close to 500). "I thought everybody was going to go danc- ing in the streets," Goodson says. "Every- body thought that Dr. Cheerva was going to do a jig in the hallway." As of press time, her CD4 count was roughly 350. With a count higher than 200, doctors can begin decreasing medication — the slew of antivirals, antifungals, immuno- suppressants — and get on the road to immunization. On the road to school. Kosair hosted a pre-transplant party for her. "Pre-transplant," because, as Goodson explains, "You never know how long it's going to be before these kiddos are going to be able to be around a group of people again." Trinity chose food from Texas Roadhouse. A plethora of cake and ice cream, gifts. Other families and children they've met at Kosair, the families and children who can most identify with Trinity's journey, celebrated with her. Post-transplant, Trinity was lucky to avoid an extended stay in intensive care. She couldn't have fresh fruit or vegeta- bles — too much bacteria. No pepper because it harbors aspergillus fungus. e meals she ate had to be completely consumed within an hour of preparation. Most transplant patients are fed through a tube. Post-transplant, Trinity's body was recovering; she was tired. Now, Trinity is spunky. "We would always tell the doctors since transplant that we missed our happy, bubbly girl," Goodson says. "We're finally getting her back." If Trinity's older sister complains of a headache, she'll say, "I dealt with headaches for three months and nobody knew what was going on with me. Cry me a river."

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