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Marisa Martinez is the type of person who, when told something is impossible, instead of giving up, simply redoubles her efforts and recruits more allies to help her fight.
So, a few months ago, when an oncologist told Ms. Martinez that her 9-year-old daughter’s brain cancer had metastasized, spreading to her spine and cranial nerves, and the end was near, she refused to abandon hope.
“It was devastating,” said Ms. Martinez, a kindergarten teacher from Woodside, whose daughter Zamora was diagnosed with an inoperable brain cancer 19 months ago. The family was told then that Zamora had six to nine months to live.
But just as Ms. Martinez had done then, she refused to accept the doctor’s prognosis.
She turned out to be right. “The doctor misread the scan, and the tumor board hadn’t looked at it,” she said. Zamora’s brain tumor “has never metastasized,” she said.
Rare disease
Zamora Moon Martinez-Lusinchi, who plays the violin, loves art and pretending to be a fairy with her 7-year-old sister and friends, has a diffuse intrinsic pontine glioma tumor, known as DIPG. According to the DIPG Registry website, these tumors grow out into healthy brain tissue, making it “impossible to surgically remove DIPG tumors without damaging healthy tissue.” They grow near where the spinal cord joins the brain, where breathing, balance, bladder control and sleep are regulated.
Fewer than 150 children a year are diagnosed with DIPG, and only 10 percent live more than two years beyond diagnosis, according to the DIPG Registry website.
Treatment is difficult because the brain protects itself against intrusion from outside agents through what is called the “blood/brain barrier,” meaning most drugs never reach the tumor.
When Zamora was diagnosed, her family — which also includes father Marc Lusinchi and sister Xavia — was advised to concentrate on the quality of what remained of Zamora’s life.
Fighting for her life
Instead, Ms. Martinez has spent the past 19 months fighting the cancer with everything she can find, including several experimental treatments in far-flung parts of the world.
“I’m not trying to give her a couple more months to live,” said Ms. Martinez, who is on leave from her job as a kindergarten teacher at the Harvey Milk Civil Rights Academy in San Francisco’s Castro District. “I’m trying to save her life.
“I want to see her graduate from high school.”
Zamora has received the treatments given to most children with DIPG — radiation therapy and steroids — and took part in a clinical trial at the University of California, San Francisco, where the tumor was biopsied to help determine what drugs might fight it.
In Germany, Zamora has had several rounds of an experimental combination of virotherapy, immunotherapy and hyperthermia.
The little girl, who was diagnosed when she was about to enter second grade in the school where her mother works, was injected with Newcastle disease virus. Newcastle, a form of bird flu, does not affect humans but does attach itself to cancer cells. Zamora’s own cells were used to create a vaccine to go after the Newcastle, and the cancer cells it had attached itself to, after her body temperature was boosted to weaken the cancer cells.
Zamora is also part of a clinical trial in England of an experimental method of injecting chemotherapy drugs directly into the brains of children with DIPG. She has had a hole drilled in her skull and a port put in so drugs can bypass the blood-brain barrier.
In addition, Ms. Martinez said, after the Almanac ran a story about the family, who live in the Kings Mountain neighborhood off Skyline Boulevard, they were contacted by a local scientist who shared an unconventional medical treatment with them that she credits with keeping Zamora’s tumor from growing.
All the treatments, Ms. Martinez said, are “like puzzle pieces, and each one has to be put together to complete the picture.”
“I’m going to do everything I can to save her,” she said.
A death bed
She repeatedly has been told Zamora was about to die. In August, when Zamora began having trouble swallowing, a supporter built a deck, a pond and a lounge chair for Zamora in the garden right outside her home, under the redwood trees. “If she passed away, I wanted her to pass away outside with the trees,” Ms. Martinez said. “It’s like a mom creating a death bed for a kid,” she said.
“It’s been hard.”
After another round of radiation therapy, however, Zamora began improving. The treatment was supposed to gain her only another four or five months, but she has gone beyond that point, and Ms. Martinez said that gives her hope. “She has a fighting chance,” Ms. Martinez said.
Ms. Martinez has also worked constantly to raise money to pay for the treatments, airfare, hotels and taking time off work, almost none of which will be paid for by insurance.
A difficult childhood
What keeps her going?
“I think it’s how I grew up,” she said. “There are things in my past that made me not want to give up.”
Ms. Martinez said she overcame a lot of hardships as a child, a time that she really doesn’t like to talk about.
At 17, she left her home in New Mexico and moved to New York City, where she worked as a model for two years. Her big break was working in a national Coca Cola ad, but instead of pursing modeling as a career, she took the cash she’d earned and went back home to go to college, where she got a degree in special education.
She said she chose the field so she could help other children with difficult lives.
At 20, Ms. Martinez decided to find the father she’d never met. Told it was an impossible task, she responded: “I’m going to meet my dad. I don’t care what any of you say.”
“It’s a kind of drive within me,” she explains. “You tell me no, and I say yes.”
Armed only with her father’s name and age, Ms. Martinez traveled to his home country of Spain, put up fliers and sent out letters, and called everyone in the Madrid phone book with his last name.
Finally, she found him, in Barcelona, with the help of some of those she’d met during her search. “My whole family in Spain is so supportive now,” she said. “It was amazing.”
The hard way
At times, Ms. Martinez has chosen the most challenging path.
For 17 years, she practiced her stressful career as a special education teacher in one of the poorest areas of San Francisco, Hunters Point, before moving to Harvey Milk and becoming a kindergarten teacher.
Ms. Martinez said she’s asked herself: “Why does my kid get cancer? I already paid my dues. But life doesn’t work like that.”
Ms. Martinez is used to “overcoming obstacles,” she said. “It takes somebody with that kind of core” to fight the battle she’s fighting, she said.
“I’m not going to dwell on feeling sorry for myself — that never worked out,” she said, but added: “I miss being a teacher. It’s really hard on me.”
More information
Donations can be made online to help pay for Zamora’s medical care and expenses. Donations can also be made through PayPal using Ms. Martinez’s email address: Catzmartinez@aol.com
DIPGRegistry.org has information about the disease, research and resources.
Facebook.com/ZamoraMoon has updates on Zamora’s condition.