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Zamora Moon fighting DIPG cancer

Organized by: Kate Shea

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THE STORY:

7-year-old daughter, Zamora Moon, had a 4-centimeter tumor on her brain stem that was inoperable and fatal. She probably had only six to nine months to live. Just hours earlier, Ms. Martinez had called Kaiser Permanente for advice, describing the symptoms her husband had told her Zamora had suddenly started exhibiting: difficulty reading, her eyes not tracking movement, trouble walking and losing her balance. Ms. Martinez was told Zamora should go for imaging tests immediately. "I still can't believe that this is happening to me. I feel like I should be back at work," said Ms. Martinez from a hospital room at the Kaiser Permanente Santa Clara Medical Center on Aug. 6. Zamora had been there for two days, since she began exhibiting serious side effects, including nightmares and hallucinations, from the steroids she was taking to reduce the swelling of the brain tumor. Ms. Martinez has taken a leave from her job as a kindergarten teacher so she can stay at Zamora's side. "I want to spend as much time with her as possible," she said. Mr. Lusinchi is a software engineer for Aspera, which specializes in data transfer. They live in the Kings Mountain neighborhood of Woodside. Zamora's 6-year-old sister, Xavia, was in the hospital room, as were the girls' best friends, Madeleine and Isabelle Markel, who had come from San Francisco with their mother, Johanna Markel, one of Ms. Martinez's best friends. Friend Elizabeth Chavez was also there from San Francisco, answering Ms. Martinez's phone and keeping the chaos organized. The girls love art and music -- Zamora plays the violin -- and, especially, pretending to be fairies with three other friends in a group they call the Sparks. The four worked on an art project together for a few minutes, until Zamora had to return to her hospital bed, where she lay surrounded by stuffed animals instead of the real animals she has at home, according to Xavia: three dogs, three cats, a bunny and a 40-year-old tortoise. The girls all attend Harvey Milk Civil Rights Academy in San Francisco's Castro District, where Ms. Martinez would, in a usual year, be getting ready to welcome her kindergarten class back to school. It had been only a week since Zamora was released from her last hospital stay, and only weeks since the family received the grim diagnosis. That diagnosis was that Zamora has a tumor called a diffuse intrinsic pontine glioma, known as DIPG. The name of the disease contains clues to why the diagnosis is so grim. According to the DIPG Registry website, the "diffuse" in the name means the tumor grows out into healthy brain tissue, making it "impossible to surgically remove DIPG tumors without damaging healthy tissue." Pontine means the tumor is in the pons, the part of brain that regulates, among other things, breathing, balance, bladder control and sleep. It is near where the spinal cord joins the brain. The fact that the tumor is in the brain, which is very good at protecting itself against intrusion from outside agents with what is called the "blood/brain barrier," also makes it nearly impossible to treat a DIPG tumor with chemotherapy. Most drugs never reach the tumor. According to the registry website, between 100 and 150 children a year are diagnosed with DIPG in the United States, most between the ages of 5 and 7. Only 10 percent live more than two years after their diagnosis. Between 10 to 15 percent of children with brain tumors have DIPG, it says. Radiation does reduce the size of the tumor, and Zamora's family had been driving 191 miles a week to and from the Santa Clara Kaiser for Zamora's treatments. They've also enrolled her in a clinical trial at the University of San Francisco. There, Zamora was sedated and a tiny part of the tumor carefully removed so doctors could study it to learn more about how to fight it. "That's what's lacking is an understanding of the tumor," said Ms. Martinez. "It's the most mysterious tumor of all." Dr. Michelle Monje-Deisseroth, head of the Monje Lab at the Stanford Institutes of Medicine, says that DIPG is the leading cause of brain tumor death in children. "We have made no progress in treating DIPG in over three decades," she said, "due in part to a lack of DIPG tumor tissue for research and a dearth of experimental models with which to study the disease." Dr. Monje-Deisseroth said the situation has begun to change recently "chiefly due to tumor tissue donations by families affected by DIPG and research funding support by pediatric brain tumor foundations," which she said are also largely the efforts of bereaved families. "We have made more progress in the past five years than we have in the previous 50, but we still have so very far to go," she said. Ms. Martinez said doctors have advised her to concentrate on the quality of what remains of Zamora's life, about making her eighth birthday on Sept. 24 very special, and perhaps asking the Make-A-Wish Foundation for help. "I'm not going to accept it," said Ms. Martinez resolutely. "I'm scouring the Internet for any kind of a cure." She's trying acupuncture, diet, herbs and essential oils, "anything I could possibly do." She turned Make-A-Wish away. One glimmer of hope, she and her friends say, is the work of Dr. Steven Gill, a British neurosurgeon who is raising money for a clinical trial of an experimental method of injecting chemotherapy drugs directly into the brains of children with DIPG. Because funding medical research can take so long, and time is one thing children with DIPG don't have, the doctor is raising the money online. According to one of the funding sites, Hubbub.net, a group called Funding Neuro has raised close to $930,000 of Dr. Gill's nearly $1.4 million goal. Ms. Martinez hopes she will be able to take Zamora to Great Britain to be part of the trial. Until then, they're just working to "keep her alive as long as possible." In the meantime, 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. An online GoFundMe campaign has raised enough money for Ms. Martinez to take a leave from her job; she's hoping the funds raised will also help pay for travel to be part of the British trial. "I'm trying to save my little girl's life," she said. "Every day that there's not a cure for her," she started, before finding herself unable to complete the sentence. "I'm trying to find an answer," she finally added. She has some advice for other parents. "Love your kids. Don't worry about those bills, that new car." Until your child has "almost been taken away from you," she said, you don't realize that possessions really aren't important. "You're the richest parent alive if your kids are healthy," she said.

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Kate Shea

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