Benefit set for sick Mokena mom who usually is the fundraiser
BY SUSAN DEMAR LAFFERTY firstname.lastname@example.org April 27, 2013 1:30AM
Alicia Almanza, 40, who suffers from a unique form of cancer, Adenoid Cystic Carcinoma, poses with a sign promoting an upcoming fundraiser benefit at her home in Mokena, Illinois, Wednesday, April 24, 2013. Alicia hosts a walk every year to raise money for research and now the benefit will help with her own medical expenses. | Joseph P. Meier~Sun-Times Media
If you go ...
What: Hearts United for Alicia fundraiser
When: 2 to 7 p.m. May 5
Where: 115 Bourbon Street, 3359 W. 115th St., Merrionette Park
Tickets: $35 for adults; $15 kids; available at door, includes food, beverages, entertainment, raffles.
Updated: May 30, 2013 2:29PM
For more than half of her life Alicia Almanza has battled a rare form of cancer.
Diagnosed at 18 with adenoid cystic carcinoma — ACC — she had to “quit being a teenager,” the Mokena woman said. Even now, as this slowly progressing disease has taken over other parts of her body, she doesn’t live the normal life of a 40-year-old woman.
ACC often develops in the salivary and lacrimal glands in the head and neck and can slowly progress to the lungs and liver. Alicia’s cancer has spread to her spine, lungs and kidney.
But that has not stopped her from raising her daughter, who will graduate in May from Illinois State University, nor from raising $170,000 to research this particular type of cancer.
Even though her health has taken a turn for the worse in recent years, Alicia still uses words such as “lucky” and “fortunate” in describing her decadeslong battle.
“I was fortunate I was diagnosed early,” she said. The first symptoms were “shooting pains” in her face. ACC attacked her salivary glands and was discovered by her dentist.
The roof of her mouth had to be removed, causing Alicia to wear a prosthetic device so she can speak and eat.
That $7,000 device wears out over time, and she is now in need of a new one — her third one. To help defray that cost — which is not covered by insurance because it is considered “cosmetic” — Alicia’s family and friends will host a fundraiser, “Hearts United for Alicia,” from 2 to 7 p.m. May 5 at 115 Bourbon Street, 3359 W. 115th St., Merrionette Park.
Still, she said, she is “lucky” because she can eat solid foods, and “lucky” because her face is not disfigured by surgery, unlike other ACC survivors she has met.
Through her annual walk to raise money for ACC, Alicia has found out she is not alone.
“At first, Alicia was the only one we knew with ACC,” her mother and caregiver Donna Almanza said.
But through this event, they have met a lot of people — including south suburban residents — who not only continue to support each other but have become involved in organizing the walk.
“We all support each other and have become good friends,” Alicia said. She also has found support on the Internet and through Facebook.
“We share what we are learning,” she said.
“It’s so rare, but word is getting out about ACC,” her mother said. “Doctors don’t always know what it is. They have said, ‘It’s nothing you did wrong, you just have bad luck.’ ”
Those who participated in Alicia’s walk (which this year will be Sept. 7 at Hickory Junction in Mokena) also had an opportunity to meet Dr. Christopher Moskaluk, a University of Virginia physician who has been researching ACC for more than 20 years and is the recipient of Alicia’s fundraising efforts.
When she first was diagnosed, Alicia tried to find out what it was all about.
“A lot of people don’t realize that it does not go away. Once you get it, it’s always in your body,” she said.
In the beginning, life was relatively normal and allowed her to raise her daughter. She was able to go a couple of years without treatment. Over the years, she’s endured four surgeries.
Now that the cancer has progressed, treatments are more frequent.
“Historically, chemo and radiation don’t work on ACC. There’s no cure. I’m just buying time,” Alicia said. “Up until the last couple of years I was doing OK. Now things are getting worse. I do not have the same amount of time that everyone else does.
“My daughter is 22. Will I see her get married and have kids? This weighs heavily on my heart,” she said.
Her biggest challenge, she said, has been “accepting that there is no cure, that it is not going to get better, knowing that this is my life. It’s not the same as other 40–year-olds. I am slowly getting worse and worse. That’s a tough pill to swallow. At 40, I should be thinking about taking care of my parents and I’m not able to.”
Donna, however, said it is “an honor” to serve her daughter.
“Her life is so different. I miss going out to lunch or to the mall with her,” she said.
“For all the bad things that happened, I have been so lucky,” Alicia said. “My daughter is perfect and she will graduate from ISU this May. How lucky I am to be part of that. And my parents have been a huge part of that. I have the most amazing family.”