News

Looking for a miracle

Woodside family refuses to give up hope of saving their child's life

For information on how to help and learn more about DIPG go here.

It was 2 a.m. on July 12 and her husband and two daughters were half a world away, visiting his parents in France, when Marisa Martinez got the call.

Her husband, Marc Lusinchi, told Ms. Martinez what French doctors had just sat him down to say: their 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.

Comments

4 people like this
Posted by Sophie
a resident of another community
on Aug 11, 2015 at 6:20 pm

Not good news for such a young child. My husband had "GBM" brain tumor given 12-18 months to live only lived 9 months so hard to see a grown man fall down in front of your eyes. I am hoping for the best for this little girl.


4 people like this
Posted by Pat
a resident of Menlo Park: Belle Haven
on Aug 12, 2015 at 12:51 pm

My heart goes out to this family, but clutching at straws for a miracle cure does no good. The doctors are, sadly, right. The family should focus on making the child's remaining time as wonderful as possible. I am critical of Kaiser's medical care since in my experience it puts cost before a patient's care; nevertheless, Kaiser's opinion in this case is correct.


4 people like this
Posted by Judy
a resident of Menlo Park: Central Menlo Park
on Aug 13, 2015 at 2:32 am

I support you, mom, in your desperate efforts to save your daughter - trying herbs, oils, whatever. Such efforts may keep you strong while you endure the horror of your daughter's disease. If you cannot save her, you will let go when the time is right. Your struggles may serve yourself and your family in ways that may not be clear at this time. Blessings.


1 person likes this
Posted by Elizabeth
a resident of Woodside High School
on Aug 13, 2015 at 10:20 am

IMPORTANT...
Dear Marisa, please read about GcMAF.

"Using the Protocols, a big part of which is diet, stage 4 cancer patients usually start improving in the first week, often experiencing a 25% tumour reduction. Some, after 6 months become as cancer free as the rest of us, providing the patient carries out the protocols, the SWISS Protocol in the clinic, and the Home Protocol at home. If you have had chemotherapy it will take considerably longer. If you have been “over chemoed” and your blood / immune system counts are low, we will have to get those back up first." Web Link

To slow the advance, try a ketogenic diet and do not let her eat what hospitals serve:: Web Link
I'm praying for your daughter.


Like this comment
Posted by Palo Alto
a resident of another community
on Aug 14, 2015 at 4:38 pm

Ms. Martinez,
If you are trying everything possible, one thing I would add to the above list that is not likely to hurt and may help (it crosses the blood brain barrier) is IVIG. You are basically getting a lot of people's antibodies injected right into your blood stream, and there is some research on the use of it to reduce metastases in late-stage cancers. (Investigate which preparations are least likely to cause side effects, it makes a difference.) Cost is usually the biggest barrier, and cancer centers who provide it seem to charge the most to desperate patients, unfortunately.

It's not likely to be a cure-all but it could buy you some time. There was a flurry of research on IVIG in cancer in the 1990's, and then a worldwide shortage put an end to it (there are some people who have no immune system who need it to live - luckily, new production methods have helped the supply, among other things), and the research just never took off again, even though it is now used as the mainline treatment for at least one kind of cancer.

I personally feel that improvements resulting from use of IVIG should be followed through to their logical end, to understand cancer better or refine the use of it as an adjunct treatment. For now, though, again, it's unlikely to hurt and it could help buy you time.

Another - albeit controversial - alternative is hyperthermic treatment for cancer, which is available in Europe but not really here. The trouble is that raising the temperature of the brain is risky business. That's much more expensive and risky than the above.

Lastly, I don't know whether they have ramped up enough to help yet, but Cancer Commons might be a good resource for sifting through the cancer information overload and finding others with similar cancers/tumor genotypes who had success.

My heart and prayers go out to your family. I hope you are successful in your quest.


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