PALO ALTO, Calif--

Emma Rust

Wow.  Talk about the value of 2nd opinions.  
 
While visiting Japan last November, the family of Emma Rust of Orinda, CA, was told by doctors there that 5-year-old Emma had a fatal brain tumor.  “I just couldn’t believe it,” said mom Junko.  “The doctor gave us the diagnosis while Emma was coloring in the next room.  I couldn’t stop crying.  The doctor said she may last a year.”  Then, unbelievably, one week later at Packard Children’s Hospital, doctors were telling Junko and husband Tyler the exact opposite.  “They told us to keep saving money for Emma’s college fund, that they could treat her tumor,” said Junko.  “We were jumping up and down!”
 
How Emma and her family went from the lowest of lows to the highest of highs in such a short period of time underscores the importance of not only seeing physicians who have experience treating the most severe cases, but also the big-time value of a 2nd opinion.
 
Certainly no one thought Emma’s life was in danger when the family traveled from California to Japan last fall for an uncle’s wedding.  It was a happy time for the princess-loving Emma (Tinker Bell’s her fave).  But when Emma’s right arm and hand went completely limp a few days into the visit, everyone was very worried.  “We took her in for a CT and an MRI and got the worst news possible.  The neurosurgeons there told us Emma had a pontine glioma in the brain stem, that it was untreatable, and she would die.”  Meanwhile, Emma was becoming sicker every day.  “The doctors were pretty certain there was no hope,” said Junko.  “Emma likes Japan, so we even thought we might be staying in Japan for whatever time she had left.” 
 
Of course, the family frantically scoured cyberspace for info that would offer hope.  Meanwhile, thousands of miles away in Connecticut, Emma’s Googling grandma Katie discovered the neuro-oncology program and research of Paul Fisher, MD, a Packard Children’s specialist in children’s brain tumors who annually sees over 250 kids having a new or established brain tumor.  Global phone calls ensued between the family and Dr. Fisher, who agreed to see Emma ASAP.  The family flew back to California on Sunday and saw Dr. Fisher and neuro-oncology fellow Sonia Partap, MD on Monday.  That’s when the prognosis flip-flop began.  “As soon as I walked in the room and saw Emma,” said Dr. Fisher, “I knew something about the diagnosis wasn’t right.  She was able to move her eyes horizontally, something a child with her type of tumor shouldn’t be able to do.”  Fisher had previously reported the importance of this clinical distinction in the journal Cancer in 2000.  Dr. Fisher looked at Emma’s scans and diagnosed a different tumor, a pilocytic tumor of the brain stem, what he calls “one of the good ones.”
 
Dr. Fisher then brought in Michael Edwards, MD, Chief of Pediatric Neurosurgery.  Dr. Edwards, who performs over 400 neurosurgeries a year, concurred.  “Emma’s tumor is definitely treatable,” said Dr. Edwards, who removed Emma’s glioma in a 7-hour operation on December 15.  A subsequent follow-up MRI in January was clear.  “Dr. Fisher and Dr. Edwards saved our baby,” said dad Tyler.  “These men gave us her life back.  Instead of dying, she’s back to giggling more than anybody I know.”
 
A lot of those giggles occurred last weekend when Emma celebrated her 6th birthday (pic attached).  There’ll be plenty more for Emma and perhaps other patients who don’t give up hope after receiving a shocking first opinion.  “Out in the general community and sometimes even in the medical community, people think that all brain stem tumors mean death,” said Dr. Fisher, “but that’s not so.  We’re lucky to have the expertise, experience and research that other places and other parts of the world might not have, and this can save lives.”