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SIERRA VISTA — A mother’s nightmare descended on a local family on Aug. 18, 2003.
Cecilia Nelson’s 7-year-old daughter, Alysianna, was hemorrhaging on the right side of her brain. In the local emergency room, scans revealed multiple cavernous malformations in her frontal lobe. She was flown by helicopter to Phoenix for emergency surgery.
“It was very scary,” Cecilia said. “It was a life-changing experience.”
That day in August was the beginning of a difficult journey for Aly and her family. Since that time, she has suffered more seizures, experienced more bleeding in her brain, undergone two major brain surgeries and spent innumerable days in hospital beds.
  
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Recently, Aly and Cecilia sat in the living room of their modest home on Santa Rita Drive and spoke frankly about their life. Aly is a willowy Latina with her mom’s good looks. She attends sixth grade at Our Lady of the Mountains School. Her heroes are Martin Luther King Jr. and George Washington. She wants to be a nurse one day. Most people call her Aly, but she really likes to be called Alysianna.
A long surgical scar is visible on the right side of her forehead, extending down to her right ear.
Aly, now 12 years old, remembered a face-to-face meeting with a doctor in Phoenix.
“I asked him if I was going to die.”
The mother looked at her daughter and remembered the physician’s reply.
“He said he was going to take very good care of you.”
On the day when the trouble began in 2003, Aly bumbled into a sliding glass door. She started to vomit and was “speaking real weird,” Cecilia said, “almost like she had banged her head really good.”
Cecilia took her to Sierra Vista Regional Health Center, but Aly could not get out of the car. She told her mom she had forgotten how to walk.
Aly’s first surgery lasted 16 hours as doctors removed one of the masses from her brain.
The neurosurgeon, “an incredible doctor,” had already warned Cecilia to be prepared for the worst.
“He told me, ‘You know, I’m going to be honest with you. Go home and make funeral arrangements.’
“Which I never made.”
The shell-shocked mother later described the ordeal in an essay: “It was the longest time of my life. When she was in recovery, we found out she was severely allergic to morphine and stopped breathing. The doctors suggested I speak to her so she would respond, but I couldn’t say a word. Life stopped for me at that moment as hers had. Everything went into slow motion, and I could see everyone in the room crying, and I couldn’t release my breath. I was in pieces.”
Aly’s aunt revived the sleeping princess with a song. That story has become a family legend.
The extended family has proven time and again to be a reservoir of resilience.
Cecilia, who is 31, grew up in a Spanish-speaking household in Bisbee. Her father worked in the mines. She is a first-generation American of Mexican heritage.
Her parents and a sister provide a close-knit network of support for single-mother Cecilia and her two daughters. Sophia is 8.
Aly’s dad is not in her life. This a tough issue for Aly. Mom soothes the pain.
“I tell her, ‘He’s missing out … What an incredible little person she is.’ It’s not her.”
Make A Wish Foundation stepped in when it was learned that Aly would need a second surgery in 2005. Her wish was to go to New York City.
Cecilia wanted to wait until after the second surgery, but the doctors said no and urged them to take the trip first. “So, what did that say?” Cecilia said.
The family was “bummed out” but traveled to Manhattan from March 12 to 18, 2005. Aly saw the Statue of Liberty. In Central Park, she ice-skated for the first time.
Cecilia’s father — Aly’s abuelo — was there, and he went to St. Patrick’s Cathedral and made a promise to the Virgin of Guadalupe that if his granddaughter made it OK through the second surgery, then he would take her to the Basilica of Guadalupe in Mexico City.
Meanwhile, Cecilia did not tell Aly about the surgery until after the New York adventure. Sometimes it is the mom’s job to do the worrying.
Lo and behold, Aly made it through the second surgery on March 22, 2005, and she accompanied her grandparents on the pilgrimage to the Basilica in June 2005.
The steps to the Basilica were steep. The second surgery had left Aly with paralysis on the left side of her body.
Yet the 9-year-old girl marched up those steps, carrying white roses and a red candle to the sanctuary.
“She climbed up there by herself with a friend of (the grandparents’) who was helping her carry these flowers that she was taking, and the candle, but (the friend) said she walked up like nothing, like there was nothing wrong,” Cecilia said.
True?
“Yes,” Aly said firmly, her eyes looking off in the distance as she remembered it.
Another trip to Mexico City is planned, and Aly is literally counting the days when she will return to the Basilica.
Aly’s home church, St. Andrew the Apostle Catholic Church, has been highly supportive of the family during these difficult times.
Carol Milloy, the mother of former Miss Sierra Vista Brandi Milloy, learned about Aly’s situation and passed it along to her daughter, who was competing on “Oprah’s Big Give” television show. Brandi arranged for Aly to be Miss Sierra Vista for a day. The event surprised and honored the young girl. It was contained in an episode broadcast by ABC on April 13 and was seen by millions of American TV viewers.
Parishioners also established an account at Wells Fargo so that tax-deductible donations could be funneled to the family to defray mounting medical costs.
Cecilia works from her home for the Arizona Department of Education.
“One of the requirements was that I needed to have a child with a disability,” Cecilia said. “So it works out fantastic for me, because I’m able to be home with her when she needs to be home. She still has a lot of seizures.”
Despite having health care insurance under Arizona Health Care Cost Containment System, Cecilia estimates that she owes about $15,000 in medical bills.
Aly has nine doctors, including specialists in Pasadena, Calif. Cecilia keeps a cabinet drawer full of all the paperwork. She takes meticulous notes and keeps track of whom she talks with.
Creditors are understanding, but it can be overwhelming at times, Cecilia said.
But this mother is relentless and will not back down when it comes to getting answers for her daughter.
One time she was peppering a Tucson doctor with questions.
“He looked at me and said, ‘You’re very aggressive,’ ” Cecilia said.
“And I said, ‘I appreciate your comment. However, this is my child …’ ”
Mom’s voice trembles as she explains the current situation. Aly’s situation is so tenuous, “the doctors suggested we just let her live her life right now,” Cecilia said.
If there is a third surgery, then Aly faces the risk of becoming a vegetable.
“What’s that?” Aly asked.
Cecilia reminded her of the former paralysis.
Aly shrugged.
The mother’s shoulders carry a different burden, and she is living from day to day. She knows the worst can happen, and she might not be able to prevent it.
She compares it to wearing a seat belt and naively believing that will guarantee no injury or death from a car accident.
Cecilia admitted she guards her emotions.
“I think I’ve gotten pretty good at that.”
Is that Aly’s attitude?
“Nope,” the daughter replied, with an emphatic “p.” Then she added cheerfully, “I just smile and look pretty.”
Hearing that, her mother released some good laughter and had to agree.
“That’s the way to do it,” mom said.
HERALD/REVIEW city editor Ted Morris can be reached at 515-4614 or by e-mail at cityeditor@svherald.com.
HOW TO HELP
Anyone who wishes to help defray Alysianna Nelson’s medical expenses may make tax-deductible donations in her name at any Wells Fargo branch.
Hope wrote on May 14, 2008 9:01 AM: