“Devastating” is the word Phil Tan uses to describe his 18-year-old son Xavier’s recent diagnosis with a rare and incurable brain cancer. But another word he started using this past week is “uplifting.”
Since the Tan family launched the #XavierStrong GoFundMe campaign on Saturday to raise money for Xavier’s medical care, Tan said they have been uplifted, surprised, overwhelmed and grateful for the more than $75,000 that has poured in from more than 750 donors in 30 states. Besides the donations, the Tans have also received hundreds of messages, comments and prayers from strangers who have been moved by Xavier’s story.
“We couldn’t imagine dealing with this without all that support,” Tan said. “The generosity that people are showing through this and other ways, like prayers and positive thoughts, is really helping us a lot, and we believe it’s helping Xavier cope with his cancer. It’s giving us hope for a miracle cure to happen.”
Jenny Perillo, a spokeswoman for GoFundMe, said she’s not surprised at how quickly the #XavierStrong account took off.
“People are capable of incredible empathy, and when given the chance, they’ll do what they can to ease the financial burden for others,” Perillo said.
On Aug. 24, Xavier was diagnosed with a grade 4 pediatric glioma cancer. He underwent two emergency brain surgeries and has been recuperating at his family’s home in Mission Hills since Monday as he prepares for an aggressive regimen of radiation or chemotherapy.
Xavier’s older sister Kamila Tan, 26, who has a master’s degree in public health, said the family hopes he will be admitted to one or two clinical trials being conducted at Rady Children’s Hospital. They are hopeful, but they are also realistic. The disease is growing fast, it has no cure and the long-term prognosis is cloudy. But as a religious Catholic family, the Tans are hoping for a miracle and all of the prayers they’ve received from near and far are helping.
“It’s like a hug from afar,” said Kamila, who lives in Los Angeles. “Xavier knows all about it. He looks at it and he just keeps saying ‘wow.’ We have people in Hawaii and across the country praying for him. He’s constantly in awe of how many people have rallied for him.”
Xavier is the youngest of Phil and Alina Tan’s three children, including Kamila and 22-year-old Kasimir. Xavier was a star player on the varsity beach volleyball team at St. Augustine High School and he played last year on the men’s club volleyball team at UC Irvine, where he was scheduled to start his sophom*ore year later this month. He is an avid photographer with a goal of majoring in film and media studies, Kamila said.
“He’s probably the kindest person I know on this planet,” she said. “He has such a good, genuine calm presence about him. Myself and Kas would fight so much all the time and Xavier would just say ‘let’s all just calm down.’ He wants everybody to get along and be happy. He brings light and goodness wherever he goes.”
When Xavier came home for the spring and summer, Kamila said her close-knit family noticed mild changes in him. He seemed less engaged and less energetic. His skin became pale and he started randomly vomiting in the morning and in the middle of the night. His parents took him to an urgent care clinic, but because he was exhibiting symptoms similar to COVID-19, he was sent home to quarantine for 14 days rather than admitted for tests.
Finally, in mid-August his symptoms worsened and he was admitted to Scripps Green Hospital, which later transferred him to Rady Children’s Hospital where brain cancer specialists diagnosed his glioma. Kamila said glioma is a cancer that grows in the gluey supportive cells that surround nerve cells.
The particular type of glioma that Xavier has affects only 6.6 in 100,000 people. Phil Tan said it’s the kind of random and “horrible bad luck” you read about but never expect to impact your own family.
“There’s a special connection every parent has with each of their kids. It’s hard to describe, but every parent knows this and it really comes out when you get news like this,” Tan said. “I’ve been crying uncontrollably ever since. Alina is feeling the same way.”
Xavier’s parents don’t use or follow social media, so they weren’t sure what to expect when their daughter decided to launch a GoFundMe campaign last weekend. Kamila said she thought she might be able to raise $10,000 of her $35,000 goal, but was “blown away” when donations more than doubled her goal amount in just a few days.
“I know things can go viral very quickly, so I’m not surprised by the viral nature of it, however I never expected it would’ve happened to my family,” she said. “With the GoFundMe, my family and I are really hopeful that we can improve Xavier’s quality of life and give him the best chance of fighting the disease. He’s such a wonderful person and he absolutely deserves that.”
To donate to Xavier’s GoFundMe account, visit gofundme.com and search for #XavierStrong.
