Dwight and Mary Brader had a storybook life. They had a loving marriage, a young daughter who was the apple of their eye, and they lived on a farm in Nebraska. Mary worked nights as a nurse at a hospital thirty minutes away and Dwight had just finished training as an electrician in addition to keeping up with the farm chores.
And then their lives took a sudden, sharp turn. Dwight was diagnosed with nonHodgkins lymphoma. The local oncologist was optimistic that Dwight would be cured, even though his tumor was the size of a grapefruit.
Dwight started treatment in the fall of 1998. His chemotherapy sessions were scheduled on Fridays so that he could be out of bed and at work on Monday morning. He did all the chores on the farm, as well as worked as an electrician.
Dwight doted on four year old Amanda, and she on him. Since Mary worked nights and slept days, Dwight and Amanda spent a lot of time together. Amanda would fall asleep on Dwight’s lap as he mowed the fields. They cared for the animals and played catch together. Dwight did all the things that a loving husband and father needed to do, despite being very ill from chemotherapy.
Through the years of treatment, Amanda and her dad had many special times together. When Mary was working, Dwight would wink at Amanda and say “Don’t tell mom about this” while they watched “The Simpson’s” on TV, ate Little Debbie Cakes, and drank Pepsi, things that Mary would not allow. When they went fishing, Dwight cautioned Amanda, “Now don’t get stuck with the fish hook or Mom will kill us,” seconds before she did just that!
Dwight needed a stem cell rescue and sought treatment at a medical center in Omaha. It was there that they learned that he had Hepatitis C. No one could explain to him how he had contracted it, but Mary assumed that he had received contaminated blood products from one of his many transfusions, even though technology had existed to screen blood products for hepatitis viruses for ten years. For months, they did not know that many others in the area had also contracted the virus through reuse of syringes at the local oncology clinic.
The Hepatitis C diagnosis was devastating. Dwight was very discouraged, and no longer had the same optimism about beating cancer. He struggled to carry on as husband, father and provider, but had more and more times of sickness and disability.
As Dwight’s health declined, Amanda stepped into the role of his caregiver. She began dispensing his pills, flushing his port and taking his temperature when she was in kindergarten. When she was a baby, the family had gotten in the habit of sleeping in the same king sized bed. This habit paid off during Dwight’s illness, because when Mary worked nights Amanda would sense when Dwight was running a fever. She would wake, take his temperature and call the neighbors to ask for a ride to the Emergency Department when it read 105 F. She would ride along to the hospital, and after she saw that he had been admitted, return home as dawn was breaking and got ready to catch the school bus.
When the news broke of the Nebraska outbreak, in which 99 Nebraskans contracted hepatitis C through reuse of syringes during chemotherapy, the family was shocked and angry. Dwight would switch off the TV when newscasts reported on the story to shield Amanda, but she was able to piece together the story.
As Dwight’s health continued to decline, the disruption to family life increased. Amanda became more and more independent and responsible for cleaning, cooking and laundry while her mother worked and took Dwight to doctor’s appointments. She learned to drive at a young age and would beg to drive the car when she feared her mother would fall asleep from exhaustion at the wheel. Amanda took on all these responsibilities before she was 10 years old.
Medical personnel felt that Hepatitis C was adding to Dwight’s health challenges and recommended that he undergo treatment for the virus. Dwight took the injections and pills for 4 weeks, but his blood counts dropped so low that he could no longer tolerate the treatment and it was discontinued. Soon he underwent another stem cell transplant. On the days that Mary worked, Amanda was Dwight’s caretaker. She could recognize when Dwight was in need of medical care and would make the decision to call the shuttle to take him to the clinic for visits. Life became one series of medical crises after another for the family, with Dwight’s health steadily declining.
After a valiant struggle, Dwight passed away with Amanda and Mary tenderly caring for him until the end on August 12, 2004. His death certificate listed cause as “graft vs host disease” but Mary wonders how much Hepatitis C contributed to the failure of the stem cell rescue. She will never know.
Amanda was 10 years old when Dwight died. She has had to grow up without him. But she keeps his memory alive in her heart and knows that he is with her. She has felt him help her with her homework as she has done science reports on Hepatitis C and nonHodgkins lymphoma. She even used his port in a sealed jar as a visual for a speech.
Amanda says she forgives the medical professionals that reused syringes that transmitted Hepatitis C to her father. “I’ll forgive but I won’t forget. I know I have to forgive and can’t hold onto the hate, because it would eat me up inside.”