A fundraiser to help with Zamora Moon Martinez-Lusinchi's medical expenses is scheduled for 2 to 6 p.m. Saturday, March 19, at the San Gregorio General Store in Pescadero. There will be live music by Atkinson Kincheloe Beynon & Cefalu. Participants are asked to bring food to share.
Eight months ago when her then 7-year-old daughter was diagnosed with a fatal and inoperable brain cancer, Marisa Martinez was told she should just accept the inevitable and try to make her daughter's last months comfortable and happy.
Ms. Martinez, who lives with her husband, Marc Lusinchi, and their two daughters in Woodside's Kings Mountain neighborhood, said she should could not accept that. Instead the family has worked tirelessly to find treatments for their daughter, Zamora Moon Martinez-Lusinchi, who is now 8.
Zamora, who was given six to nine months to live when she was diagnosed, has surprised the cancer doctors because imaging shows her tumor is about half the size it was, Ms. Martinez said.
"She can walk again, she can talk normally," she said.
Zamora has a diffuse intrinsic pontine glioma, known as DIPG. This type of brain tumor grows out into healthy brain tissue, making it impossible to surgically remove, especially because of its location near where the spinal cord joins the brain, in the pons, which regulates breathing, balance, bladder control and sleep. The brain's own defenses keep most chemotherapy drugs from reaching the tumor.
Ms. Martinez said that because the cancer is rare, striking between 100 and 150 children a year in the U.S., it has been little researched. So she has done her own research. "I've just been scouring every piece of information," available she said. "I've spent hours and hours and hours."
One of the treatments was found after a story about Zamora ran in the Almanac in August. A Menlo Park researcher told the family about an unconventional treatment being used in clinical trials in Israel but not approved for use in the U.S. Ms. Martinez spoke to the doctors there and "made sure everything was legitimate" before trying it with Zamora.
The family had also hoped to take part in a clinical trial in England of an experimental method of injecting chemotherapy drugs directly into the brains of children with DIPG. But because Zamora's tumor has cysts in it, and the drugs tend to pool in a cyst, she is currently ineligible for the trial, Ms. Martinez said.
While they wait and hope for the cysts to go away, on March 5, Zamora went to Germany for a third session of treatment involving several of the most recent cancer-fighting developments: virotherapy, immunotherapy and hyperthermia. Zamora was injected with Newcastle Virus, a form of bird flu that does not affect humans, engineered to attack the cancer cells. Her own cells are used to create a vaccine against the cancer; and her body temperature was boosted in an attempt to kill cancer cells.
Ms. Martinez said Zamora is the first American citizen to undergo the treatment.
"I'm cautiously optimistic," she said.
Ms. Martinez said that through a Facebook page set up for Zamora, she has connected with many other families whose children have DIPG, and shared with them what she has learned. She was recently invited to talk about DIPG on a Los Angeles radio show.
"A lot of people kind of see me as a roaring lion," she said. "I'm just a fighter; I won't accept" that Zamora's cancer is a death sentence. "I've been an advocate for parents," she said.
The community has rallied around the family, both in San Francisco, where Ms. Martinez has taught for 22 years, including 17 years in Hunters Point and two years at Harvey Milk, and in Kings Mountain, where they've lived for nine years.
Ms. Martinez took a leave from her job as a kindergarten teacher for the first semester of the school year, but she returned to work in January. Mr. Lusinchi is a software engineer for Aspera, which specializes in data transfer.
A fundraiser to help with Zamora's medical expenses is scheduled for 2 to 6 p.m. Saturday, March 19, at the San Gregorio General Store in Pescadero. There will be live music by Atkinson Kincheloe Beynon & Cefalu. Participants are asked to bring food to share.
GoFundMe.com has a fundraising campaign for Zamora. Contributions may also be sent to the San Gregorio General Store, 7615 Stage Road, Pescadero, CA 94074.