PROGNOSIS FOR FUTURE FAMILIES IN THEIR SHOES.
-- LEADING TO A BETTER PROGNOSIS FOR FUTURE FAMILIES IN THEIR
SHOES.
♪ NASH ROGERS IS A THIRD GRADER
WHO LIVES IN BRENTWOOD.
HE LOVES CARS AND LEGOS.
HE’S SMACK DAB IN THE MIDDLE OF THREE SISTERS, AND HE IS LIVING
WITH AN INOPERABLE BRAIN TUMOR.
>> SO, WE HAVE FOUR KIDS.
LUCA IS OUR OLDEST.
SHE IS 13.
WE HAVE SAYLA, WHO IS 11 NOW.
NASH, WHO IS EIGHT.
AND GRETTA IS OUR BABY, WHO IS SIX.
>> NASH IS AN EIGHT-YEAR-OLD BOY.
HE IS PRETTY QUIET, PRETTY MILD MANNERED, JUST AS HAPPY TO SIT
DOWN AND WATCH AN IPAD OR RIDE HIS BICYCLE.
NOT A WILD KID.
AND I’D SAY ABOUT A MONTH BEFORE CHRISTMAS, WE NOTICED HE HAD
SOME BALANCE ISSUES AND HE KEPT FALLING OVER.
AND THAT’S WHEN WE TOOK HIM TO THE DOCTOR AND THEN ENDED UP AT
CHILDREN’S WITH THIS DIAGNOSIS.
ERIN: THE DEVASTATING DIAGNOSIS, DIFFUSE INTRINSIC PONTINE
GILOMAS.
-- GLIOMA.
OR DIPG, HIGHLY AGGRESIVE AND DIFFICULT TO TREAT BRAIN TUMORS,
FOUND AT THE BASE OF THE BRAIN.
>> THINK OF LIKE POISON IVY WRAPPED AROUND A TREE.
THAT’S WHAT THAT TUMOR IS DOING TO HIS NERVES.
THAT STRANGULATION IS WHAT’S CAUSING THEM TO NOT FUNCTION.
♪ ERIN: MOST CASES OF DIPG OCCUR
BETWEEN FIVE AND SEVEN YEARS OF AGE.
AND SADLY, FEWER THAN 10% OF CHILDREN SURVIVE TWO YEARS FROM
DIAGNOSIS.
>> I WOULD SAY WE FOCUS ON KEEPING HIM HAPPY, KEEPING HIM
BUSY, AND THEN ALSO HIS CARE AT THE SAME TIME.
I MEAN, WE’RE JUGGLING DOCTOR’S APPOINTMENTS AND SCHEDULE AND
TREATMENTS.
AND, YOU KNOW, SO JUST KIND OF MANAGING THAT WHILE STILL GIVING
HIM SOMEWHAT OF A NORMAL LIFE.
ERIN: THERE ARE NOT A LOT OF TREATMENT OPTIONS FOR DIPG, NASH
UNDERWENT RADIATION TO TRY TO SHRINK THE TUMOR, AND NOW HE IS
PARTICIPATING IN A CLINICAL TRAIL THROUGH THE JIMMY FUND.
>> THE TRIAL MAY HELP NASH, BUT MOST LIKELY, IT’S GOING TO
HELP SOMEBODY ELSE IN THE FUTURE.
>> THESE KIDS, I MEAN, THE PROGNOSIS, UNFORTUNATELY, IS
THEY’RE GOING TO SUCCUMB TO THIS DISEASE ON AVERAGE WITHIN A YEAR
OF DIAGNOSIS.
SO EVERY YEAR, 400 KIDS COULD BE GETTING DIAGNOSED AND PASSING
AWAY.
AND NOT ENOUGH FUNDING IS OUT THERE TO ADEQUATELY START
TRIALS, DEVELOP NEW TREATMENTS, PROLONG THE INEVITABLE
THAT’S THE BIGGEST GOAL, IS TO KEEP THESE KIDS HERE LONGER.
ERIN: RIGHT NOW, THE ROGERS FAMILY IS FOCUSED ON LIVING IN
THE MOMENT, AND KEEPING NASH HAPPY, WHICH OF THESE DAYS
INVOLVES -- >> LEGOS.
[LAUGHTER] ♪
>> IT’S BEEN A NICE OUTLET FOR HIM.
HE REALLY CAN’T WALK ON HIS OWN ANY MORE.
FINE MOTOR SKILLS ARE LACKIN BUT LEGOS IS SOMETHING HE CAN
STILL BE INVOLVED IN.
HE MIGHT NOT BE ABLE TO PUT THE PIECES TOGETHER NECESSARILY,
BUT HE CAN ABSOLUTELY CORRECT YOU WHEN YOU ARE PUTTING THE
PIECES TOGETHER WRONG.
♪ ERIN: THE ROGERS FAMILY HAS A
SUPPORTIVE COMMUNITY OF FRIENDS AND FAMILY RALLYING AROUND THEM.
THEY EVEN HAD A CAR SHOW AT THE NEW ENGLAND DRAGWAY TO PUT A
SMILE ON NASH’S FACE AND TO HELP RAISE AWARENESS FOR DIPG
[CARS REVVING] >> FIRST OFF, HE IS NAMED AFTER
NASH, THE CAR COMPANY, THAT IS NEED TO.
I WOULD TAKE HIM TO A CAR SHOW.
IT WAS JUST SOMETHING THAT WE DID TOGETHER.
WHAT BETTER WAY THAN TO HAVE A CAR SHOW?
ERIN: AT THE BASH FOR NASH EVENT, NASH AND EVAN AUSTIN GOT
TO MEET EACH OTHER IN PERSON, EVAN IS ANOTHER DIPG WARRIOR WHO
LIVES RIGHT DOWN THE ROAD IN HAMPTON, NEW HAMPSHIRE
♪ >> SO, EVAN IS A PRETTY AMAZING
KID.
HE’S REALLY HAPPY.
HE’S VERY LAID BACK AND VERY CHIL
HE ALWAYS HAS BEEN.
BUT HE LOVES STARWARS.
HE LOVES LEGOS.
HE LOVES BASEBALL.
JUST REALLY ANYTHING THAT MOST 7-YEAR-OLD LITTLE BOYS LIKE.
ERIN: EVAN WAS DIAGNOSED WITH DIPG WHEN HE WAS 5 AND A HALF,
AFTER HIS PARENTS NOTICED HE WAS TALKING IN HIS SLEEP AND HAVING
BALANCE ISSUES.
>> NOBODY SHOULD BE TOLD THAT YOUR CHILD HAS CANCER AND
THERE’S NOTHING THAT WE CAN DO ABOUT IT.
IT’S BEEN REALLY HARD, BECAUSE HE’S SUCH A HAPPY KID THAT WE
DON’T WANT TO REALLY LET HIM KNOW WHAT THE PROGNOSIS IS, YOU
KNOW, BUT I KNOW THAT HE HAS A BRAIN TUMOR.
HE KNOWS HE HAS CANCER.
THERE’S NO WAY AROUND THAT.
BUT, YOU KNOW, HE’S JUST KIND OF LIVING HIS BEST LIFE EVERY DAY.
♪ ERIN: EVAN HAS UNDERGONE
RADIATION TWICE TO HELP SHRINK THE SIZE OF HIS TUMOR, AND HIS
PARENTS HAVE ALSO TRIED A VARIETY OF OTHER THERAPIES, FROM
A KETOGENIC DIET, TO MEDICAL CANNABIS, AND HYPERBARIC OXYGEN
SESSIONS.
>> SO, WE KNOW THAT THERE’S NOT A MAGIC BULLET OUT THERE, BUT WE
KIND OF JUST -- YOU KNOW, WE ARE WILLING TO TRY ANYTHING, LIKE
ANY PARENT WOULD, AND KIND OF SEE THESE AS LIKE TOOLS IN A
TOOLBOX MORE THAN INDIVIDUALLY ON THEIR OWN, SOMETHING THAT’S
GOING TO CURE HIM, BECAUSE WE KNOW THAT’S NOT.
WE ALSO HOPE THAT OUR STORY WILL OFFER SOME OTHER FAMILIES A
LITTLE BIT OF HOPE.
WE WERE GIVEN SUCH A SMALL WINDOW OF TIME WHEN HE WAS FIRST
DIAGNOSED, THAT WE NEVER WE NEVER THOUGHT HE WOULD STILL BE
HERE AT THIS POINT.
SO, HOPEFULLY WE CAN OFFER SOME FAMILIES SOME HOPE FOR A LITTLE
BIT MORE TIME THAN THEY ORIGINALLY THOUGHT.
ERIN: THE AUSTINS AND THE ROGERS HOPE THAT TOGETHER THEY CAN
RAISE AWARENESS AND FUNDING TO HELP FIND A CURE FOR DIPG AND TO
HELP IMPROVE THE PATH FOR FUTURE FAMILIES WHO WILL WALK IN THEIR
SHOES.
>> THE RESILIENCE OF CHILDREN OVERALL AMAZES M
I MEAN, DOES NASH LOVE THE CONDITION HE IS IN?
NO, HE DOES NOT.
BUT DOES HE JUST GET UP EVERY DAY AND BE POSITIVE AND HAVE A
GOOD DAY?
HE REALLY DOES.
AND I SEE THIS WITH THE OTHER CHILDREN THERE, THE CHILDREN
THAT WE HAVE SEEN AT THE HOSPITAL AND AT THE JIMMY FUND
CLINIC.
THESE KIDS AMAZE ME.
♪