>> IT WAS ABOUT THANKSGIVING TIME OF 2009,
SO SHE WAS FIVE MONTHS OLD.
AND SHE STARTED GETTING REAL BAD UPSET STOMACHS,
TROUBLE GOING TO THE BATHROOM,
REAL FUSSY ALL THE TIME.
AND I KEPT TAKING HER BACK TO THE PEDIATRICIAN,
TELLING THEM THAT I THOUGHT THAT SOMETHING WAS NOT RIGHT;
THAT SHE JUST WASN'T COMFORTABLE,
SHE HAD GONE FROM SLEEPING 12 HOURS AT NIGHT TO WAKING UP
EVERY HOUR, SCREAMING, CRYING. SHE TURNED JAUNDICE.
AND SO WE TOOK HER BACK TO THE PEDIATRICIAN
AND THEY SORT OF WENT INTO PANIC MODE.
WE WENT TO CHARLOTTESVILLE THE NEXT DAY WHEN THEY
DISCOVERED THAT THERE WAS A TUMOR IN HER ABDOMEN.
SHE WAS DIAGNOSED WITH NEUROBLASTOMA AND IT WAS
DECEMBER 14 OF 2009.
SO THE STANDARD TREATMENT WAS WE STARTED WITH INITIALLY
EIGHT ROUNDS OF CHEMOTHERAPY.
AND AFTER EACH TWO ROUNDS, EDIE WAS SCANNED AGAIN
AND IT WAS AFTER THE TEN ROUNDS THAT THEY WERE FINALLY ABLE
TO GO IN AND JUST SORT OF CHIPPING AWAY AT PIECES
OF THE TUMOR.
>> IT WAS A LONG PROCESS, A VERY LONG PROCESS.
THE CHEMOTHERAPY, THE SURGERIES,
IT WAS KIND OF TOUCH-AND-GO AT THE BEGINNING.
SHE WENT THROUGH 12 ROUNDS OF CHEMO,
HAD FOUR MAJOR SURGERIES, AND AFTER ALL THAT WE HAD
FOUND OUT THE CANCER HAD COME BACK.
THAT'S WHEN WE WERE INTRODUCED
TO THE CHILDREN'S HOSPITAL OF PHILADELPHIA AND DR. MOSSE.
>> WHEN I FIRST MET EDIE SHE HAD NO HAIR.
SHE HAD A FEEDING TUBE BECAUSE SHE COULDN'T EAT
USING HER MOUTH.
SHE HAD DEVELOPED AN AVERSION TO FOOD.
SHE WAS NEEDING BLOOD TRANSFUSIONS AS A RESULT
OF THE CHEMOTHERAPY THAT SHE'D GOTTEN.
>> WE DIDN'T KNOW WHAT OTHER OPTIONS WERE OUT THERE
FOR US AND THANKFULLY WE HAD DR. MOSSE WHO STEPPED
IN AT THAT POINT AND RECOMMENDED THAT EDIE HAVE SOME ADDITIONAL
TESTING DONE TO SEE IF THEY COULD GET TO THE BOTTOM
OF WHY THIS KEPT COMING BACK IN THE SAME EXACT SPOT.
IT WAS A BLOOD TEST TO TEST FOR A GENE CALLED THE ALK GENE
THAT THEY HAVE TRACED BACK TO NEUROBLASTOMA
IN CHILDREN THIS YOUNG AGE.
AND EDIE WAS GIVEN THE BLOOD TEST AND HER BLOOD TEST
HAD COME BACK POSITIVE.
>> WE HAVE BEEN FOCUSED ON THE RARE FAMILIES WHERE
NEUROBLASTOMA IS INHERITED, KNOWING FROM OTHER DISEASES
LIKE BREAST CANCER THAT THESE FAMILIES CAN TEACH US
ABOUT WHAT DRIVES THE CANCER.
AND IN 2008, WE MADE THE DISCOVERY THAT THESE
FAMILIES ALL HAVE ABNORMALITIES IN THE DNA
OF THIS GENE WE NOW CALL ALK, WHICH STANDS FOR
ANAPLASTIC LYMPHOMA KINASE.
IT'S A GENE THAT WHEN IT'S TURNED ON,
IT ALLOWS THE TUMOR TO GROW.
AND SO FORTUNATE FOR US, IT ALLOWS US THE OPPORTUNITY
TO THINK OF WAYS TO TURN IT OFF.
>> DR. MOSSE HAS FOUND THIS LINK AND MEDICINE THAT CAN
HELP TURN THIS ALK GENE OFF.
>> THEY OBVIOUSLY, YOU KNOW, FELT THAT IT WAS--
IT COULD BE THE ANSWER FOR EDIE.
THEN WE, YOU KNOW, TOOK A LEAP OF FAITH
AND SAID LET'S TRY IT.
SHE DID REALLY WELL AND SURPRISINGLY SO WHEN WE CAME
TO BE SCANNED AT THE BEGINNING OF NOVEMBER
THE CANCER WAS GONE.
SO SHE WAS DIAGNOSED CANCER-FREE IN NOVEMBER OF 2011.
SO THIS HAS BEEN THE LONGEST TIME THAT SHE HAS BEEN
CANCER-FREE SINCE SHE WAS DIAGNOSED IN DECEMBER OF '09.
>> AND NOW HERE SHE IS AFTER SIX MONTHS OF TREATMENT ON
THIS DRUG AND SHE HAS A FULL HEAD OF BEAUTIFUL BLONDE HAIR,
SHE'S GOT A FANTASTIC PERSONALITY.
WE TOOK HER FEEDING TUBE OUT.
AND SHE IS JUST A COMPLETELY NORMAL HEALTHY-APPEARING
TODDLER WHO'S DANCING AND SINGING AND CAUSING LOTS
OF TROUBLE AND IT IS VERY REWARDING.
IT GIVES A LOT OF HOPE.