3 siblings diagnosed with rare brain tumor


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It's hard enough dealing with cancer when one member of your family has it, but imagine three of your four children all developing the same brain tumor.

Steve, Calleen and Caitlyn Williams
Steve, Calleen and Caitlyn Williams

Doctors at Primary Children's Medical Center call it a rare event, and one that's sure to be written up in medical literature.

Eight-year-old Braxton, 3-and-1/2-year-old Caitlynn, and 20-month-old Jaden have developed the same kind of life-threatening brain tumor at different times. Twelve-year-old sister Kelsey is the only one without the cancer.

"The subtype of the tumor is very rare. The fact that it is familial is even rarer than that," said Dr. Carol Bruggers, with pediatric oncology at Primary Children's Medical Center.

Jaden Williams
Jaden Williams

Bruggers talks about a very rare subset of brain tumor, called atypical teratoid rhabdoid tumor(ATRT), which in its broader type makes up only 20 percent of brain tumors.

But for the Williams family, they're dealing with a little-known subset of ATRT, which is even rarer.

Then to have that same tumor hit three of their four kids, for Calleen and Steve, that's overwhelming.

"It totally blew us away, because they told us it was so rare for our first one to get it to begin with. We didn't think it would be in our second one, and then when they did the genetic testing and told us she (Caitlynn) was carrying the gene, we thought there was no way. A third child? How do you do that?" Calleen Williams said.

Braxton Williams
Braxton Williams

Treatment includes surgery for Caitlynn and chemotherapy for her brother Jaden.

Eight-year-old Braxton went through surgery, chemo and radiation treatments four years ago. His cancer is in remission, which by itself is unusual.

"He's beaten the odds for what we know about this tumor, and he's beaten the odds for what we now know what appears to be true for familial. He's older, he's alive, and he's doing well," Bruggers said.

Kelsey, Braxton, Caitlyn and Jaden Williams
Kelsey, Braxton, Caitlyn and Jaden Williams

"I think Braxton has had a positive effect on us, because he's gone four years, so it gives us hope for all of our kids," Steve Williams said.

Though the gene for this tumor is on the father's side, Steve says, as far as he knows, it hasn't shown up anywhere else.

A fund has been set up for the family. If you'd like to help them financially, you can donate to the "Williams Family" account at any Cyprus Credit Union branch.

E-mail: eyeates@ksl.com

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