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Our kids inspire us to fight to defeat DIPG.

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October 13, 2001 – July 3, 2022

Diagnosed: August 25, 2020

Written by Xavier’s family

Just one year ago, 19-year-old Xavier Tan was supposed to be living the most exciting chapter of his life. He was heading into his sophomore year at the University of California, Irvine where he played club volleyball and planned on pursuing a career in film and TV production.

When Xavier returned home for the summer, however, his siblings noticed a change in their normally happy, active baby brother.

“He seemed less engaged and less energetic,” said Kamila Tan, Xavier’s sister.

When Xavier started vomiting during the night, his parents took him directly to an urgent care clinic. There, doctors mistook his symptoms for COVID-19 and he was sent home to quarantine for 2 weeks. But as Xavier’s symptoms worsened, a scan on August 25, 2020, revealed a tumor and he was immediately prepared for emergency surgery to relieve hydrocephalus, or swelling in the brain.

The type of brain cancer Xavier is fighting is called DMG (diffuse midline glioma), a type of high grade glioma that has no cure or effective treatment options. DMG tumors are closely related to DIPG tumors and have a similar prognosis.

While utterly devastated, Xavier’s parents, Alina and Phil, immediately began searching for the best course of treatment for their youngest son. Phil spent hours talking to doctors and researching clinical trials, while Alina worked on developing a supplemental naturopathic course of treatment such as acupuncture, lymphatic massage and a vegetable-rich diet.

Xavier’s siblings wanted to help too. His brother, Kasimir, focused on keeping Xavier’s spirits up and making him laugh as often as possible. Kamila, who was living in Los Angeles when Xavier was diagnosed, came home to be with the family and set out to alleviate some of the medical costs, launching the GoFundMe campaign #XavierStrong.

Within days, Xavier’s story had gone viral and the campaign received donations from all around the world. Hundreds of messages of support and prayers from strangers touched by Xavier came flooding into the Tan family.

“We couldn’t imagine dealing with this without all of that support,” said Phil. “The generosity that people have shown, through the campaign, prayers and positive thoughts, has really helped us and we believe it’s helping Xavier cope with his cancer. It’s giving us hope.”

In December of 2020, Xavier began a clinical trial through PNOC (The Pacific Pediatric Neuro-Oncology Consortium) that used a combination of chemo drugs targeted to the molecular genetic profile of his tumor. However, by March, an MRI showed Xavier’s tumor had grown, thus ending the trial and leaving the Tan family disheartened and back at square one.

“There is no blueprint for what we’re going through as a family,” said Kamila. “To witness someone you love suffer from an illness that randomly chooses its victims, with no known cause and has no known cure, is almost unbearable.”

But the Tan family and Xavier’s innovative neuro-oncology team at Rady Children’s Hospital were not ready to give up. And after the researchers at Rady Children’s screened a panel of 175 drugs against Xavier’s biopsied tumor cells, they were able to identify which drugs proved most effective. This functional data provided a personalized list of potentially effective drugs, one of which was selected to treat Xavier.

His latest treatment plan also includes the investigational drug ONC201, which Phil learned was showing promise in many DMG and DIPG brain cancer patients. However, the expanded access trials for ONC201 in the US do not allow for the use of other cancer drugs.

“I believe that combination drug therapies are needed to fight this disease,” said Phil. “We learned that ONC201 is available in Germany ‘off trial’ and decided to pay for the drug out of pocket, with the help of the GoFundMe campaign, and combine ONC201 with other drugs. This is an option for families but the drug from Germany is expensive and not easy to get.” Due to a patent law, the drug cannot be shipped to the US, so a dear family friend makes the trip as needed to acquire the drug. “It’s like going to the ends of the earth to do whatever it takes,” said Phil.

This new combination therapy seems to be working as the tumor has slightly shrunk since it was started in May, 2021. “Some neuro-oncologists and nurses have mentioned that they rarely see these tumors stabilize or shrink after progression in a prior therapy, and this is very encouraging,” Phil explained.

While the last year has been a journey of heartbreak and tears, the Tan family is still full of determination and hope.

“All of us realize that each moment with Xavier is precious,” said Kamila. “This disease is volatile and unpredictable, but my family and I will do whatever it takes to improve Xavier’s quality of life and give him the best chance to fight. He’s such a wonderful person and he absolutely deserves that.”


What is DIPG?

DIPG is a devastating and aggressive brain tumor typically found in children.

What is ChadTough Defeat DIPG?

Learn about our founders, mission, and impact.