By Theresa Vargas
Washington Post Staff Writer
Monday, August 11, 2008
Shaken and ready, the can in Dani Greene's hand draws the attention of the apron-clad 4- and 5-year-olds sitting at the table in front of her.
"Okay, we're going to play with shaving cream," the special education preschool teacher says in a sing-song voice.
"No, it's glitter," Niles Ayers, 5, corrects her.
"Okay, today we're going to play with glitter, but it's white and sometimes people call it shaving cream," Greene happily surrenders.
For the next 15 minutes, the seven children and their teacher will get lost in tracing letters and shapes with unsteady fingers. They will giggle and squeal and become coated in the lesson plan up to their elbows.
Only five years ago, on another summer day, Greene would write in her diary about how she longed for a day like this. How after receiving a diagnosis of acute myelogenous leukemia at 26, and undergoing a bone marrow transplant, she wanted to work: "I want to feel like I make a difference. I want to come home and have a story about my day, whether good or bad . . . I want the hair to stop growing on my back, my neck, my shoulders, my arms, my face, and my legs. I want to feel pretty and thin. I don't want to feel like people know me before they meet me as 'the girl with cancer.' " Passages like this make the book her parents recently published about the family's ordeal feel intimate, feel like one is sitting with Greene in 2002 when she learns there is a 99 percent chance she has leukemia and she futilely clings to the 1 percent chance she does not.
The book, "It's Good to Know a Miracle: Dani's Story," is far from a bestseller. The Maryland couple who wrote it, Jay and Sue Shotel, had to pay for it to be printed, and on an average day recently, it had a sales ranking of 383,434 on Amazon.com. The couple estimates that 500 have sold.
But even as sales remain small, the words of this local family are already reaching across the country and serving as a survival guide of sorts for families dealing with cancer.
The book landed in Jennifer Muri's hands last month, a little more than a year after her father, Robert Muri, got a diagnosis of acute lymphoblastic leukemia at 46.
"Before, he was a really strong, healthy guy," Jennifer Muri, 25, of Spokane, Wash., said. "There was nothing wrong with him. No physical problems whatsoever."
Then her father came down with the flu in May of last year and couldn't get well. Like Greene, Robert Muri was prepped for chemotherapy within 24 hours of his diagnosis. Jennifer Muri said that her stepmother gave her the book and that she read it in two days. She has also turned back to it amid the blur of hospital visits, comforted by the parallels she can trace between her father and Greene.
Although the book delves into the family's emotions, it is grounded in the medical reality of Greene's situation. The pages are filled with definitions of such words as "neutropenic" and "albumen."
"During this day, our first full day in the parallel universe of cancer, our formal education begins. The cavalry speaks a new language here," reads one passage. "We begin to understand the purpose of distinct drugs . . . how some are used to ease pain while others are used to cure infections; and we cannot forget the chemical therapy drugs, and the interesting names given to the poisons that were put inside Dani's body to do their discriminate vs. indiscriminate killing."
"It makes the not knowing not seem as scary, because you know someone else has already gone through it," Muri said. "It's just so great to know there are people out there that care enough to share their story. As hard as it is, I can't imagine going through it and reliving it."
The Shotels never set out to write a book.
Sue Shotel, a retired Montgomery County secondary school administrator, said she picked up a notepad out of habit early in her daughter's illness and started keeping meticulous notes. She would scribble down everything from her daughter's blood pressure to the movies they watched from the hospital bed. She began writing down dialogue so that she could replay the day to her husband, Jay Shotel, a professor at George Washington University.
In the end, the couple was left with three scribble-filled notebooks.
"In 2004, we said we have to do something with this," Jay Shotel said. Little had been written from the perspective of caregivers, and the one book his family had found comfort in was already dated. He said he and his wife decided they could break down what they had learned, translating the hospital jargon for other families. "You know, it's a foreign language," Jay Shotel said.
It helped, of course, that they also knew by then that the book would have a happy ending. If their daughter had died, the couple said, the book would have likely never been born.
"I think it probably would have been buried with her," Jay Shotel said.
But Greene found a bone marrow donor countries away in Thomas Heimhuber, a 30-year-old German man. He would attend her wedding in October 2005. She had been dating her now-husband, Scott Greene, three months at the time of her diagnosis, and he is by her side page after page in the book.
"You changed and enlightened my life more than I can tell," Scott Greene writes to her on Feb. 7, the day the bone marrow arrives and which she now celebrates as her new birthday. "I can't imagine being happier or with someone more perfect."
Because the chemotherapy diminished the couple's chances of having children, they are hoping to adopt and have already been approved by an agency. Dani Greene, now 32, said she always knew she wanted children. She has a master's degree in special education and early
childhood, but she said this experience has helped her connect to her students in a way she couldn't before.
"My whole life, I've been pretty normal," she said. But then chemotherapy took her hair, and another drug caused her face to swell, a hump to form on her back and hair to grow where it previously hadn't. While it lasted, she said, it no longer felt like people were looking at her. "People were staring at me," she said.
"I think it's so important for me to make these children feel the same" as other children, Greene said. "I would have done that anyway, but now I'm so much more aware of it because I was different in my life."
She says this while sitting in her classroom at Jamestown Elementary in Arlington County. A sandbox is plopped in the middle of the room, and alphabets, expressed in letters and sign language, stretch across one wall. She has just said goodbye to the students in her usual way, making each pick a color. Zachary Hoffman, 4, picked green.
"I wish I had a little green box to put my Zachary in," Greene sings. "I'd take him out and [kiss, kiss, kiss] and put him back again."
"Ewww," one boy squeals, repeating his disgust each time until his turns comes. Then, he's all smiles.
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