GULFPORT, Miss. _ Ana Marie Ortiz has been tortured most of her young life.
Pain is her constant companion. More than anything, the 22-year-old wants the normal life others take for granted _ a career, a wedding, a home of her own.
Ana and her mother, Lisa Ortiz, have struggled with their faith, a faith anchored by Ana's father, a music teacher who believed God had gifted him with a beautiful voice. Ana and Lisa lost him along the way, through Ana's struggles with the cancer that has relentlessly returned.
During times Ana was deathly ill, other mothers with sick children asked Lisa, "Hasn't Ana suffered enough?" "Isn't it time to let her go?"
For Lisa, the thought is incomprehensible. She understands the women were being compassionate, but her own feelings are the opposite: Her daughter has suffered so much, she deserves to live.
"I'm not going to let my kid die," the 54-year-old mother said in the quiet of their living room, where she sat on Mother's Day with Ana to talk about all they have been through. "It's not OK ... I will never accept it."
SHE WANTED TO LIVE
Ana played and ran around the house like any other toddler. Then she started whining, demanding to be picked up and held. Her mother took Ana to the pediatrician when she developed a fever that spiked at 103 to 104 degrees. He twice recommended ibuprofen or acetaminophen.
The third time, the pediatrician's partner, who had experience with leukemia, ran blood tests. Lisa and Adam Ortiz learned their 19-month-old daughter had acute lymphoblastic leukemia.
And so began Ana's lifelong ordeal of toxic medications and excruciating procedures. Her mother had to hold her down while needles were injected in her hip for tests, and in her spine to withdraw fluid and inject chemotherapy drugs.
"She didn't understand why she had been held down and tortured from the time she was a baby," Lisa said.
Ana needed treatment for three years, but doctors at Tulane Medical Center stopped the experimental chemotherapy protocol just short of the recommended time because her kidneys were failing.
The leukemia rebounded with a vengeance when Ana was 5 years old. The recurrence necessitated strong doses of chemotherapy, administered through a central line placed in Ana's chest. Once again, steroids bloated her body, she frequently threw up and her hair fell out.
"I never in a million years would have thought this would happen to my beautiful little baby when she was born," her mom said.
The second round of treatments threw Ana into congestive heart failure.
"I did not want to die," she said. "I wanted to be well. And I wanted to go home and be a normal child. All I wanted was an assurance that I was going to be OK."
She lay in a medically induced coma at Tulane for 31 days.
While she was unconscious, she said, she found herself submerged in an ocean where, oddly, she could breathe. A man surrounded by light appeared. He said, "'Ana, everything is going to be all right. You are not going to die. Everything will be just fine."
She woke up happy, this child who had been so bitter and angry because she was too young to understand why people were torturing her.
She believed what the man had told her. Ana was able to attend school, completing grades three through five.
And then it happened a third time, when she was 10 years old. The cancer was at home in her blood. The only hope now was a bone-marrow transplant.
For her third battle with leukemia, the family went to St. Jude Children's Research Hospital in Memphis. Ana spent the better part of a year hospitalized. Recovery took three years more. She had chemotherapy and full-body radiation. This time, treatment destroyed her ovaries.
When Ana was finally able to enroll in school, she was a child surrounded by teenagers. Fellow students, and even teachers and principals, failed to understand she was trying to catch up. She was not a slacker.
"I would tell people, 'It's not my fault,'" she said. "'Leave me alone.'" Sometimes, she wished she were dead.
'Living for today'
Against all odds, Ana graduated in 2013 from Gulfport High School. She enrolled at the Jefferson Davis campus of Mississippi Gulf Coast Community College. Her studies finally started to make sense. She was bringing home As and Bs instead of Cs and Ds.
Her father died of a heart attack Dec. 19, 2015. One minute, he was talking to Lisa; the next, he was gone. Ana saw the energy leave his body.
By the time her father died, Ana had started feeling pain in her lower abdomen. At first, she thought she had a virus. She ignored it. But the pain would not go away. Finally, she told her mother and went to a doctor.
A colonoscopy was performed. Ana was diagnosed in February 2016 with Stage 4 rectal cancer. She was so angry and scared. She believed in God. She also believed God did not love her. Otherwise, why did this keep happening?
Chemotherapy shrank the tumor so she could have surgery. Her mother also took her to Louisiana to see a traiteur, skilled in the art of Cajun folk medicine. He laid hands on Ana, warming her abdomen. She and her mother believe the visit might have helped shrink the tumor and turn it from a menacing dark brown to pink.
Doctors removed her rectum, uterus, ovaries, fallopian tubes and 20 lymph nodes.
The years of chemotherapy, radiation and steroids have taken their toll. Among other things, Ana has brittle bones, fractured vertebrae and slight hearing loss. She had to go on hormones after her ovaries shut down.
"It feels like my body is so physically tired," Ana said. "It feels like I've already lived a very long life and I'm, like, 70 years old. It feels like that. I know I'm not 70. I know I'm 22 and I look like a kid. I know I look very young. But from all that I've been through, I feel like I've had such a long, long, horrible, painful life. And it feels like I've already lived a long time."
WILL TO LIVE
During her last recovery, Ana was lying in bed when a feeling of love and peace descended from nowhere and overwhelmed her. The feeling was divine, she said, not of this earth. She understood in that moment God does loves her. But it's complicated.
She does not understand why she has suffered so much for so long. Maybe, she thinks, the reason will be revealed to her one day.
She feels that she can do anything she wants. She and her mother are no longer worried about her diet, about avoiding this or that out of fear the cancer will return.
"I've learned, what's the point of living if you can't even enjoy just living?" Ana said. "It's taught me, actually, to treasure each day and moment that you're healthy because it could be gone in a second."
After she survived leukemia a third time, Ana thought she was done with cancer. She thought she had finally suffered enough to be granted the normal life she so badly wants.
Today, she is under no such illusion. Still, she is working toward a degree in education. She hopes one day to teach children or work as a cartoonist, maybe even at Disney.
At home, she draws cartoons and has painted her bedroom walls, adding bright geometric shapes on one and artfully placed paint splatters on the others.
"Done with cancer?" she said. "Nope. I don't have that feeling. I honestly don't know what's going to happen. That's why I'm living for today and doing whatever I want to because I don't know how long I'll be here."
Ana was wearing a tank top that said, "I am dauntless."
Her mother said: "My baby, my baby, my precious baby. It's so unfair not to be able to trade places. I can't trade places, no matter what I do. I just have to keep going for her. It's not right for a kid to die. To me, it doesn't make sense."
