“People always ask me: ‘How do you stay so positive? Every time I see you, you have a big smile on your face,’ ” Ashley, 26, said after she entered hospice in the fall of 2011. “You have two options: You can curl yourself into a ball, be miserable and waste your life, or you can say, ‘Yeah, this is the hand I’ve been dealt.’ You deal with it, and you live your life.”
She wasn’t telling people to suppress their emotions. “It’s OK to cry if you want to cry. It’s OK if you want to scream. Let your feelings out.
“Every morning I tell myself, ‘You can do it. You’re going to manage.’ I choose to not let it defeat me. Yeah, you may be dying, but you can still live your life.”
She and her mother, Cyndi Horn, snuggled on a couch, a soft gray wrap around them. White hospital blankets covered Ashley’s right hip and leg; the left side had been amputated in 2009. Cyndi caressed Ashley’s bald head. They were each other’s best friends.
They talked over each other – there was so much to tell, and time was running out.
First, you need to know about Joe, Ashley’s teenage friend in Tennessee. He was diagnosed with Ewing’s sarcoma in his right leg in late 2006. A few months later, Ashley began to worry about a lump on her left leg. Joe suggested she might have cancer.
“Are you crazy? Why would you say that to me?” she asked. “But the pain got worse, and the mass on my leg grew.”
In May 2007, a sarcoma surgeon in Tampa diagnosed her at age 21, saying she was the youngest patient with malignant peripheral nerve sheath tumor (MPNST) that he had seen in six years.
“She was a baby back then,” Cyndi said. Ashley added: “My doctor didn’t think I’d make it through the first treatment and the first surgery.”
She ended up having 14 surgeries. Sometimes she thought: “I’ve done everything that they asked. I fight so hard. I follow the rules. I’ve done my part – why isn’t it working?”
But she focused on what she did have.
“I did four different sets of chemo and four different rounds of radiation, and I got four more years. I got four more birthdays, four more Christmases, four more years with my family. That was worth it.”
Finally, her doctor told her there was nothing more he could do for her.
“We knew four years ago that we’d never get ahead of it,” Ashley said. “But I want other people to know that it’s OK to take that risk. It’s OK to fight even if the outcome isn’t exactly what you hoped for.”
Her friend Joe had been offered chemo only as a palliative measure, and he chose not to do it. At first, Ashley was upset, but she came to understand his bravery.
“Now I’m at a point where I respect the decisions people make. Only you know when you’re ready to stop. I commend him for saying, ‘No, thanks.’ Who am I to tell him that he didn’t fight enough or hard enough?
“He’s been with me all the time,“ she added. For luck, Joe used to bend down and pick up a penny, if it was head’s up. Before he died, Ashley said, “he told me, ‘Whenever you’re having a bad day, if you see a penny on heads in an odd place, I’ll be there.’ ”
After she had her hemipelvectomy, she didn’t have the strength to get out of bed for more than a month. Then one day, she saw a penny, head’s up, in the threshold to her room — even though it had just been swept and mopped. She said she knew Joe had come to encourage her – like the Marine he was.
”He told you to move your butt,” Cyndi said. Ashley added: “That was the first day I could stand up.”
Back in 2004, Ashley had left Tennessee for Groveland, Fla., to help her sister with her newborn. She stayed six months with Jennifer Scarelli and Kaleb, bonding with him as if he were her own child.
Kaleb, her “Punkerdoodle,” was like a gift for a young woman who had always wanted children, but found out that she would never have one of her own.
“He was 3 when she was diagnosed,” Cyndi said.
In 2007, Ashley had come to Florida to see her sister and ended up in a job managing low-income housing. After a biopsy found sarcoma in her left leg, a surgeon referred her to the sarcoma program at the Moffitt Cancer Center in Tampa.
“Jennifer took a leave for the first year to help care for Ashley,” who lived in her home with Kaleb, Cyndi said. On days when she could do little, Ashley said, “He’d say, ‘How come Auntie’s not loud, Mommy?’ When he’d wake up, he’d say, ‘We’ve got to wash my hands so we can see Auntie.’ ” He would run in and kiss her on her forehead.
“He has five aunts, two sisters-in-law, two half-sisters, but he says, ‘I have only one Auntie.’ He will tell anyone his favorite person is Auntie,” Ashley said.
“He called her a one-legged weasel” one day while they were playing a game at Moffitt, Cyndi said, but he wouldn’t let anyone else pick on her. “He was really into Thomas the train,” Cyndi said, and he started taking the girl trains into bed and saying they were sick.
“He would say, ‘Lady is feeling pukey. I need to watch her.’ A psychologist says that’s the way he was coping,” Ashley said. “My nephew is gifted. When you tell him something, he understands it completely.”
When she went into the hospital, she would reassure him that the doctors were trying to make her better. Finally, she said, “My sister and brother-in-law had to explain that I was going to the hospital and I wasn’t getting better. They had to explain that Auntie was going to die. He said, ‘When that happens, don’t leave me home. I have to be there.’ He was smart enough to know that people leave kids at home when things like that happen.”
“I make jokes about dyin’, and Mom gets these big tears. My sister says, ‘That’s not funny.’ I wanted to clean out all this stuff, and I said, ‘We can call it a Going to Heaven Sale.’ Instead of you coming into my room and bawling hysterically,” Ashley said, looking at her Mommy, “I would so much rather do it now.”
A devout Catholic, Ashley had no doubt she was heading to Heaven.
Cyndi, who moved to Groveland in 2010 to care for Ashley, said: “No one wants to lose their child. But she said, ‘How am I supposed to be OK with my situation and come to terms with it if no one around me can accept it? I need my family to be OK with it.’ ”
In the past, if Ashley had wanted her mother to grill a pork chop at 10 p.m., no way would Cyndi have done it. But when she was caring for her daughter, Cyndi realized that she could do it, and even leave the dishes in the sink until the next day.
“The world isn’t going to come to an end,” Ashley said. With cancer, she said, “You get a whole new perspective on life. We live every day as if it were our last. No one is guaranteed tomorrow.”
Ashley was unemployed when diagnosed, and she had no health insurance. Moffitt gave her a grant to pay for her medical care, and the staff helped her apply for Medicaid and Social Security Disability Insurance. After two years, she was eligible for Medicare.
Nevertheless, cancer devastated their finances. Cyndi lost her job for taking time off to care for her daughter. They bought extra food because Ashley’s appetite and nausea fluctuated, and the same happened with her weight and clothes. They had to pay for gas to drive back and forth to Tampa, and they had regular expenses, such as rent and utilities. Cyndi worried she wouldn’t have the money for her daughter’s funeral.
Ashley died Nov. 14, 2011, about nine weeks after she turned 26. Her ashes rest in a beautiful white urn that she picked out. One of her last wishes was for her story to be told.