Susin Stillwell, left, checks her son Daniel Pepin's temperature Sunday. If he comes down with a fever he must be rushed to the emergency room because his immune system is weak from undergoing chemotherapy and radiation for a brain tumor that was removed May 31. (Mike Graffigna/News-Sentinel)

Galt family seeks experimental treatment for cancer-stricken boy

Daniel Ryan Pepin was living a pretty normal life for a 13-year-old seventh-grader at Galt's McCaffrey Middle School. He made the honor roll and had an insatiable appetite for science and social studies.

But on May 26, he discovered he had a serious brain tumor after being taken to the emergency room at Lodi Memorial Hospital following a series of headaches that his mother thought might be a sinus infection.

It's been a roller coaster ride the past two months. Pepin was taken by ambulance to UC San Francisco Medical Center on May 27. Four days later, he had surgery to remove a brain tumor. Complications caused by two post-surgery strokes kept him in the hospital until June 21. He didn't get out of bed for three weeks and had to use a walker for awhile. He also experiences short-term memory loss.

"It's been horrible having a death sentence hanging over a parent's head," said his mother Susan Stillwell. "It's the worst that can happen to a parent."

Stillwell and her ex-husband, Daniel Wallace Pepin, have stayed at a hospice next to the medical center in San Francisco as the young Pepin undergoes daily radiation as an outpatient. Stillwell has taken a year off from her job as an electrician, while her ex-husband quit his job in Colorado to be with his son.

Stillwell and her son come home every Friday afternoon and remain in Galt through the weekend until it's time to return to San Francisco for additional radiation.

The good news for the family is that Pepin will have his final radiation treatment on Thursday, but the challenge is only beginning.

His mom wants to take him to Houston for some promising treatment that has not been approved by the Food and Drug Administration. Therefore, the family's medical insurance will not cover the treatment. A trust fund has been established through a Galt attorney to cover costs.

Stillwell believes that Houston doctor Stanislaw Burzynski is the best hope for a full recovery from what is known as glioblastoma multiforme, an aggressive form of brain cancer.

Despite his intense radiation and chemotherapy, Pepin seems to be taking his fate pretty well.

"I was scared, worried," said Pepin, wearing light-blue T-shirt and shorts and glasses. "But the doctors said you don't have to worry. Twenty years ago, it would have been a big problem."

He says he's feeling fine and spends his days thinking about a career either as a paleontologist or a writer of George Lucas-type movies.

Pepin is fascinated by dinosaurs and enjoys video games, TV, history and animals.

But Stillwell has enough worry for the both of them.

"I put on a happy face when I'm around him," she said. "When he sleeps is when I cry."

It's particularly tough for Stillwell when she administers daily chemotherapy at home, which will continue for a year.

"He's on like 12 different medications," she said.

Daniel Pepin, 13, of Galt, was in good spirits Sunday despite undergoing surgery May 31 to remove a brain tumor. (Mike Graffigna/News-Sentinel)

When he comes home on weekends, he'd rather stay in his room -- which he calls his "entertainment center" -- rather than see his old school friends.

Nevertheless, Pepin visited the McCaffrey campus on the last day of school in June. Another time, three of his teachers and an assistant principal came to his house for a visit.

In fact, Pepin was awarded a medal from the school as "most courageous boy."

Pepin grew up in Lodi before moving to Galt with his mother four years ago. He attended Heritage Elementary School in Lodi and River Oaks Elementary in Galt before enrolling in seventh grade at McCaffrey last year.

Because his immune system is week, Pepin, scheduled to be in eighth grade in the fall, will miss an entire year of school, his mother said. If another student has chicken pox, for example, it could be fatal for Pepin, even though he has already had chicken pox, Stillwell said.

Pepin's brain cancer has also taken a toll on his 17-year-old sister, Priscilla Valenzuela, who attends Lodi High. She recalls the day she learned of her brother's tumor.

"I didn't believe my mom," Valenzuela said. "I said, 'Mom, shut up. It's not really happening.' "

Stillwell recalls, "I had to put the nurse on the phone. She said, 'Yes, he really has a tumor.' "

Yet it still didn't hit home to Valenzuela.

"I've known people who've had tumors before, and they were fine," she said. "I thought most tumors were benign."

Daniel Pepin's tumor isn't benign.

Attorney Len Reid Reynoso, chairman of the Galt Economic Development Task Force, established a trust fund in the task force's name. Because the task force, a committee of the Galt District Chamber of Commerce, is a registered nonprofit association, donors can deduct contributions from their income tax, Reynoso said.

Checks may be payable to the Galt Economic Development Task Force for Daniel Ryan Pepin, P.O. Box 364, Herald, CA 94538 or to Reynoso's office, 908 C St., Suite B, Galt, CA 95632. For more information, call 744-1870.

Contact reporter Ross Farrow at rossf@lodinews.com.