Parents share story of young son who died from rare brain tumor

Parents share story of young son who died from rare brain tumor


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SANDY — Last fall, Alex Terry was a bright, lively 6-year-old living in Sandy. In November, he developed a cold, sore throat and laryngitis. But an ear, nose and throat specialist discovered his right vocal cord and soft palate were paralyzed.

An MRI revealed a tumor on his brain stem, which turned out to be a Diffuse Intrinsic Pontine Glioma (DIPG). Alex's parents, Andrew and Katherine, say they were blindsided by what happened.

"To find out that it's DIPG, and the prognosis that goes with it ... it's just the worst nightmare," Katherine Terry said.


"To find out that it's DIPG, and the prognosis that goes with it... it's just the worst nightmare." Katherine Terry, Alex's mother

DIPG is rare, incurable and, with Alex, swift moving. The cause is unknown.

"We just don't know," said Dr. Carol Bruggers, a pediatric oncologist from the University of Utah's school of medicine. "There's a molecular change that happens somewhere in there where the usual mechanisms of self-control don't work anymore and it goes out of control."

Chemo, radiation and medication slowed the tumor briefly but through it all, his parents say, Alex led them.

"He went from (a) 6-year-old, (to a) 7-year-old, to acting way beyond his years," Katherine Terry said.


We just don't know. There's a molecular change that happens somewhere in there where the usual mechanisms of self-control don't work anymore and it goes out of control.

–Dr. Carol Bruggers, pediatric oncologist


"Deep down, I think he knew it was serious," Andrew Terry said. "Which is why we never felt we had to ever have a conversation with him, you know, this could be the outcome."

Some children suffer blindness, inability to swallow, loss of movement while still aware. The Terrys say Alex was getting weaker but died just five months later.

They tell other parents to hold on.

"A lot of small miracles (happened) along the way, even to the day that he passed away, the way that he left us," Andrew Terry said. "You can't give up that hope."

The Terrys have four other children; Katherine was seven months pregnant when Alex was diagnosed.

Alex passed away in April. The Terrys encourage donations for childhood cancer research.

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