аÄÃÅÁùºÏ²Ê¿ª½±Ö±²¥

Voices: Natalie

Natalie was 15 years old when she died. Numerous photographs taken before she fell ill show a somewhat short, slightly stout teenager whose toothy smile exudes great enthusiasm.

Natalie was a natural leader who played on her high school’s softball and volleyball teams and participated enthusiastically in her local 4-H chapter. The year before her death, in fact, she had won the Grand Champion prize at the county fair for her favorite steer. She was a member of her local Youth for Christ organization and Bible Club and played an active role in the youth group of her Methodist church. On the date she would have celebrated her 16th birthday, her four best friends organized a game day at the local fire station, during which dozens of family members and friends gathered to play board games, eat pizza, and remember Natalie.

She fell ill around Christmastime. Like other teenagers, she had suffered pain in her knees off and on for several years. One day, however, the pain awakened her from sleep. Her mother took her to the emergency room, where the physician ordered blood tests, which showed that she was severely anemic. A bone marrow biopsy was performed, which revealed that her bones were packed with abnormal small, round, blue cells. She was referred to the children’s hospital at the state’s university medical center, where a CT scan showed a mass in her pelvis and multiple abnormally enlarged lymph nodes. A biopsy of one of these lesions proved that she was suffering from rhabdomyosarcoma, a malignant tumor that arises from muscle cells. The malignant tissue in the lymph nodes proved that the tumor had already spread to other parts of her body.

In hopes of shrinking the tumor, Natalie was placed on an aggressive chemotherapy regimen. Follow-up CT and MR scans were performed to assess the tumor’s response. Unfortunately, the scans showed that the mass in her pelvis was not shrinking. In fact, the tumor-containing lymph nodes were actually growing. Her doctors tried different chemotherapy regimens, but each time the tumor failed to respond. The lesions would stop growing for a time, but they never shrank, and before long they would expand again. Eventually, the tumor extended its reach to other parts of her body, including her lungs.

During the eight months between diagnosis and death, Natalie grew progressively thinner and weaker. Because of the pain she was experiencing and the effect of the treatment on her immune system, she was unable to attend school. Fortunately, her teachers were willing to visit her home to teach her.

In the warmest months of the following summer, it became clear that Natalie was declining fast. She could no longer eat and would not even look at her favorite food, baked potatoes. Her oncologist told the family that she would probably live only a matter of weeks.

The Make-A-Wish Foundation contacted the family, and Natalie requested for her special wish that they remodel and refurnish her bedroom. Knowing that her sister, with whom she shared the room, would be the only one using it in the coming years, Natalie made sure she was very involved in the planning. Many family members and friends transformed her bedroom into a palace, in which everything, including the carpet, walls, furniture, shelves, and even television set were painted Natalie’s favorite colors: purple, lime green, and blue. A week later, having grown so sick that she refused even to take sips of ice water, Natalie died at home in her new purple bed.

Six months later, Natalie’s mother and aunt talked with me about her illness. They did so without even a hint of bitterness.

"Was Natalie angry about what happened to her?" I asked. "After all, she was a vibrant young girl, everybody’s best friend, with so much going on in her life. Then abruptly, out of the blue, she is stricken with a terrible cancer that fails to respond to any treatment."

"No," her mother responded. "Natalie never got down about it. She believed that what was happening to her was God’s will, that God had a plan for her."

"What about you?" I asked. "How are you coping?"

"Of course we miss her, but we are not angry. Who would we be angry at? We are sorry she got sick, but we believe that Natalie is now in a better place, with God. We know that she is happy and whole there, and that she is waiting for us to join her."

"I don’t see how you can avoid feeling cheated."

"If you thought this is the only life we had," continued Natalie’s mother, "you might get depressed or angry, but when you know that there is a better life ahead, you are just glad that Natalie’s suffering is over."

"It is amazing to me that you are so at peace about it."

"Obsessing over our misfortunes would be selfish. Who ever said that life is just about what I want?"

As I finished my conversation with Natalie’s mother and aunt,
I asked them whether anything good had come from Natalie’s illness and death.

"Yes, I think so," said her aunt. "Her friends’ priorities have been changed. They spend less time arguing with one another and worrying about material things. It also brought out in all of us things we didn’t know were there. Coming out to the house after school to teach Natalie taught her teachers what it really means to care for a student. It also brought the people of our county together. By the end, everyone knew Natalie and what she had been through."

"Do you suppose," asked her mother, "that learning about Natalie’s experience could help people become better at caring for those in need?"

Dr. Richard Gunderman is professor of radiology, pediatrics, medical education, liberal arts, and philanthropy at Indiana University-Purdue University at Indianapolis. "Natalie" is an edited excerpt from We Make a Life By What We Give, published 2008 by Indiana University Press.