Paso Robles resident Amanda Carminati was playing with her 10-month-old daughter at Barney Schwartz Park when the doctor’s office called: “You need to come in immediately.”
After dropping Zaley off at home with Grandma, Carminati was told by her doctor that she had acute myeloid leukemia, an uncommon type of cancer that had already claimed the lives of two aunts.
Carminati later discovered her situation was even more unusual: Her family is one of just a few known in the world to carry a rare genetic mutation that puts them at increased risk of developing AML.
The 23-year-old single mom said her first thought following the Oct. 25, 2012, diagnosis was of Zaley.
“My kid needs me,” she said. “I didn’t have time to process anything other than what was going to happen to my daughter and who was going to take care of her when I was gone.”
One and a half years later, Carminati has completed two stints of chemotherapy at Stanford Cancer Institute and is gearing up for her next challenge, a bone marrow transplant that could save her life.
But first, the Paso Robles High School graduate must deal with the aftermath of a bacterial infection that landed her in a local hospital just days after returning home from Stanford.
Although she finds this latest setback “super-frustrating,” “I just have to keep positive,” Carminati said. “The light at the end of the tunnel is so bright for me.”
A rare disease
Acute myeloid leukemia affects the bone marrow’s ability to produce healthy white blood cells, which fight infection; red blood cells, which carry oxygen; and platelets, which cause clotting, according to one of Carminati’s physicians, Dr. James Malone of Oncology Hematology Medical Associates in San Luis Obispo.
Instead, AML causes patients to produce malignant white blood cells that don’t mature, don’t die off and “grow and divide much more rapidly than they should,” Malone said, sucking up resources and crowding out production of healthy cells.
According to the American Cancer Society, about 18,860 new cases of AML are reported each year, with about 10,460 people dying from the disease annually.
The median age of diagnosis for an AML patient is 68 to 70, said Dr. Bruno Madeiros, assistant professor of hematology at Stanford University Medical Center and Stanford Cancer Institute faculty member.
Carminati and her relatives are more susceptible to developing AML earlier, Malone said, because they carry a rare hereditary mutation affecting the CEBPA gene, which encodes protein.
Madeiros said the familial genetic mutation that predisposes patients to develop AML at a young age is reportedly carried by fewer than 10 families worldwide.
Although Carminati knew that her father Tony’s sisters, Mary and Annette Carminati, had died from AML as teenagers in the 1970s, she wasn’t clear on the details. “It’s not like you sit down and talk about it at dinner,” she said.
Nor did she initially recognize the symptoms of AML, which can include anemia, exhaustion and excessive bleeding and bruises. After cutting her legs while shaving, she told her mother, “It looks like a shark attack.”
While working her usual nighttime catering shift, “I remember thinking, ‘What is the problem?’ I could barely hold up two plates of food, I was so cold and weak,” recalled Carminati, who contacted the doctor after experiencing abdominal pain.
“Now I look back and go, ‘Wow, I was so sick.’”
Undergoing intensive treatment
Five hours after Carminati told her mom, Vikki Carminati, about the diagnosis, her family arrived in the Bay Area.
Amanda Carminati started chemotherapy treatment at the Stanford Cancer Institute the following morning.
“I didn’t want to waste time,” she explained. “Any single mom in my shoes would have done the exact same thing.”
According to Carminati, her first round of chemotherapy at Stanford lasted 28 days, followed by a six-month stint at French Hospital in San Luis Obispo that ended in April 2013. She battled fatigue, nausea and hair loss.
“I don’t think emotionally I could have (handled losing) all my long hair,” Carminati said, so she asked her sister, Amy Castaniero, 26, a cosmetologist at Twist Studio Spa in Paso Robles, to cut it off.
“I think it was way harder for my sister than it was for me.”
For the next 10 months, Amanda was back home and officially in remission. But during the entire month of December, “I was just feeling really cruddy,” she recalled, with symptoms including a sore face and throat.
Antibiotics didn’t help, so Carminati went to Twin Cities Community Hospital in Templeton on New Year’s Day and asked a nurse to draw blood for labs. Hours later, Carminati received confirmation that the cancer had returned.
Taking only a few days to spend time with her daughter, Carminati returned to Stanford for more chemotherapy. While there, she and her doctors discussed the importance of getting a bone marrow transplant.
According to Medeiros, chemotherapy “is effective only a limited number of times” for an AML patient. “Without a transplant, (the) chances of (a patient with relapsed AML) being cured are almost nonexistent,” Medeiros said, calling it “the only real treatment option.”
In addition to replacing sickly blood cells with healthy ones, he said, a bone marrow transplant introduces cells from the donor’s immune system that can detect and eliminate leukemia cells.
“The immune system is finally responsible for keeping the body healthy,” Medeiros said.
Amanda returned home on March 6, once more in remission. The following night, she received a phone call from Stanford, saying that a bone marrow donor had been found.
“I went instantly numb. I started to cry, I was so happy,” Amanda recalled. “It’s such a blessing that there are these people out there who are so generous. They don’t even know me and they’re giving me a second chance at life.”
According to Malone, who did his hematology fellowship at Stanford starting in 1998 and served as a full-time faculty member there until 2005, a patient receiving a bone marrow transplant typically spends 30 to 40 days in the hospital receiving high doses of chemotherapy and radiation.
“It’s super-dangerous and risky to be around anyone at that point,” Carminati said, so patients are kept in near-complete isolation, cut off from family and friends.
Over the following two months, Malone added, the patient remains in the area for frequent outpatient care visits until cleared to go home. The whole process lasts 90 to 100 days, he said.
Unfortunately, Amanda will have to wait to start that process until she’s recovered from her most recent hospital stay. On March 8, she admitted herself to French Hospital due to a bacterial infection in her blood.
“This is way scarier than my cancer. This is the sickest that I’ve even been,” said Carminati, who remained at French on Wednesday.
Impact on family
Throughout Carminati’s ordeal, care of Zaley has fallen primarily to her grandparents, who have helped her with potty training and preschool. Both have had to take substantial time away from their jobs.
But Vikki Carminati, an employee of Paso Robles gun manufacturer Weatherby, said that she and her husband, who works for the city of Paso Robles’ Street Maintenance Division, have received strong support from their employers.
In order to be near Amanda during her treatment, they’ve also rented an apartment near Stanford from time to time. (For them, it was a more convenient option than a hotel.)
Between housing and gas costs, “It’s like we’re paying two mortgages a month,” Vikki Carminati said.
Despite the emotional and financial burdens, Vikki Carminati said she tries to stay positive.
“I’m tough (because) I have to be. I don’t have a choice,” she said. “I have to hold it together for the rest of the family.”
Amanda Carminati’s main motivation for recovery is her daughter, now 2. Although she video chats with Zaley nightly, she misses cuddling, playing and reading books with her.
“It’s not an option for me to fail at this. I have to get better for my kid,” Carminati said. “When I walk out of the hospital, I need to be a mom again.”
HOW YOU CAN HELP
A barbecue fundraiser dinner for Amanda Carminati will be held at 6 p.m. Saturday at the Pavilion at the Paso Robles Event Center, 2198 Riverside Ave.
The event, which includes live and silent auctions, aims to help cover travel, housing and treatment costs for Carminati and her family. Tickets are $50.
For more information, contact Nanci Bernard at 610-1708 or firstname.lastname@example.org.