>> IN OCTOBER, EARLY OCTOBER,
PERHAPS LATE SEPTEMBER OF 2010, WE NOTICED
SOME LUMPS ONE DAY WHICH VERY QUICKLY WERE GROWING
AND LED US TO OUR PEDIATRICIAN WHERE, AFTER SOME TESTING,
DIAGNOSED HIM WITH ANAPLASTIC LARGE CELL LYMPHOMA.
AND SO HE STARTED ON A CONVENTIONAL CHEMOTHERAPY
AND WAS RESPONDING QUITE WELL TO THAT.
AND HE WAS TREATED UNTIL MARCH OF LAST YEAR,
2011, AND SEEMED TO BE-- EVERYTHING SEEMED
TO BE GOING GREAT.
AND THEN SOMETIME LATE IN MARCH WE WERE SEEING THINGS
WHICH BROUGHT US BACK AGAIN TO CHOP WHERE AFTER A WEEK
OR TEN DAYS OF HOSPITAL STAY AND SOME DIAGNOSES IT DID
CONFIRM THAT IT WAS A RELAPSE OF HIS LYMPHOMA.
WELL IT'S A KIND OF AN OVERWHELMING AND SOMEWHAT
OF A HELPLESS FEELING BECAUSE WHILE HE'S ON TREATMENT IT
CAME BACK AND SO NOW WHAT, YOU KNOW.
>> SO I MET ZACK PROBABLY A LITTLE OVER A YEAR AGO
WHEN HE CAME HERE WITH LYMPHOMA THAT WAS NOT RESPONDING
TO STANDARD TREATMENTS.
WE HAD A TRIAL AND STILL HAVE A TRIAL OPEN HERE
OF A NEW MEDICATION THAT WE THOUGHT MIGHT BE EFFECTIVE
FOR HIM GIVEN THE KIND OF GENETIC CHANGES THAT HAVE
OCCURRED IN HIS LYMPHOMA.
>> WHEN THE DOCTORS GAVE US THE OPTION OF PARTICIPATING
IN THE STUDY, OF COURSE, WE HAD A MEETING,
AND AT THAT POINT WE WERE CONSIDERING SOME MORE SEVERE
STANDARD CHEMOTHERAPY OR THIS.
AND WE HAD SOME APPREHENSION BECAUSE OF BEING AN UNKNOWN,
BUT WE HAD A MEETING WITH THE DOCTORS AND I REALLY SENSED,
AS THEY WERE EXPLAINING THE DRUG AND WHAT THEY
HOPED IT WOULD DO, EXCITEMENT AND HOPE.
AND WHEN WE CAME OUT OF THAT MEETING,
PAM ASKED ONE OF THEM, "IF THIS WAS YOUR CHILD,
WHAT WOULD YOU DO?"
AND HE DIDN'T EVEN HESITATE, HE SAID,
"I WOULD GO ON THE STUDY."
>> AND SO HE CAME HERE AND ENROLLED ON THAT TRIAL
AND HAD A VERY REMARKABLE RESPONSE TO THERAPY.
BEFORE HIS LYMPHOMA WAS RESISTANT TO CHEMOTHERAPY.
SO WE WOULD GIVE HIM CHEMOTHERAPY AND IT WOULD
HAVE NO IMPACT ON THE LYMPHOMA.
AND NOW ON THIS MEDICATION HIS LYMPHOMA IS GONE
AND IT'S BEEN GONE FOR OVER A YEAR,
WHICH IS REMARKABLE.
>> SEVEN OF THE EIGHT PATIENTS WITH LYMPHOMA
WHO WENT ONTO THIS TRIAL HAVING HAD A LOT OF PRIOR
TREATMENT, INCLUDING MORE THAN A YEAR OF INTENSIVE
CHEMOTHERAPY, AND OFTENTIMES WHEN THE DISEASE COMES
BACK THESE CHILDREN ALSO HAD WHAT WE CALL TRANSPLANT,
WHICH IS LETHAL DOSES OF CHEMOTHERAPY.
OF THE EIGHT PATIENTS WITH LYMPHOMA WHO WENT ON,
SEVEN OF THE EIGHT HAVE HAD SUBSTANTIAL BENEFIT
FROM THIS DRUG AND THEIR SYMPTOMS CLEARED WITHIN DAYS
OR A COUPLE OF WEEKS OF STARTING THIS PILL.
>> WE WERE VERY AMAZED AT HOW QUICKLY HE RESPONDED
TO THIS MEDICATION.
REALLY, IN TWO DAYS HE WAS VERY OBVIOUSLY RESPONDING
IN A DRAMATIC, POSITIVE WAY.
>> HE'S BEEN ABLE TO GO BACK TO SCHOOL AND RUN AROUND
AND JUST BE A KID AND SO THAT'S BEEN REALLY VERY WONDERFUL
TO BE ABLE TO WATCH AND TO PLAY A SMALL ROLE IN.
>> THE SECOND DAY THAT HE WAS ON THE DRUGS
WE DECIDED TO TAKE A WALK DOWN TO THE PLAYROOM,
AND HE LITERALLY WENT OUT OF HIS ROOM AND RAN DOWN THE HALLWAY.
I MEAN, YOU COULDN'T BELIEVE IT WAS THE SAME KID
THAT WAS LAYING IN BED ALL DAY.
SO, IT WAS JUST A MIRACLE.
THE DRUG SAVED HIS LIFE.
>> WE HAVEN'T SEEN ANY SIDE EFFECTS AND I TELL PEOPLE
WHO HAVEN'T MET HIM, I TELL THEM I HAVE A SON THAT HAS LYMPHOMA.
I SAID, "IF YOU SAW HIM HERE YOU WOULDN'T BELIEVE ME THAT HE HAS
LYMPHOMA BECAUSE HE RUNS ON HIGH OCTANE ALL DAY LONG
AND HE'S DOING VERY WELL.