2015 NF Forum and Leadership Summit

NF FORUM AND LEADERSHIP SUMMIT

SCOTTSDALE, ARIZONA

APRIL 15-19, 2015

"WE ALL FACE CHALLENGES. IT'S NOT THE CHALLENGES BUT RATHER YOUR RESPONSE TO THE CHALLENGE THAT DEFINES YOU. CHOOSE YOUR RESPONSE CAREFULLY."

15 Truths...

LAST NIGHT SOME DEAR FRIENDS SENT ME A LINK TO AN ARTICLE- 15 TRUTHS TO HAVING YOUR CHILD DIAGNOSED WITH CANCER. THIS ARTICLE HIT ALL TO CLOSE TO HOME. NO, LADYBUG DOES NOT HAVE CANCER, SHE HAS NEUROFIBROMATOSIS. IT'S A COMMON MISCONCEPTION WE'VE BATTLED AGAINST FOR MONTHS. THEY ARE TWO ENTIRELY DIFFERENT THINGS, YET THEY ARE SO SIMILAR.  AT SOME POINT I STOPPED FIGHTING THE COMPARISON. WHY... BECAUSE CANCER SUCKS! NF SUCKS! HELL, TUMORS IN GENERAL SUCK! CANCER AND NF MAY BE TWO DIFFERENT DIAGNOSIS' BUT THEY ARE BOTH TREATED WITH POISON. POISON THAT DESTROYS THE "NORMAL" LIFE WE THOUGHT OUR CHILD WOULD HAVE. DIFFERENT JOURNEY'S TRAVELING DOWN THE SAME ROAD. 

LOVE AND PRAYERS TO ALL OF OUR CHEMO BUDDIES! 

May is NF Awareness Month!

MAY 17TH IS WORLD NF AWARENESS DAY! HELP US FIND A CURE FOR THE 2 MILLION PEOPLE SUFFERING WORLD WIDE. 

What's Next?

NOW THAT CHEMOTHERAPY HAS COME TO AND END WE'VE HAD A FEW QUESTIONS...WHAT’S NEXT?

WHILE THIS CHEMOTHERAPY PROTOCOL IS DONE WE STILL HAVE A FEW MORE THINGS ON THE AGENDA THE NEXT FEW MONTHS. ON MAY 4TH AND 5TH LADYBUG WILL GO THROUGH A SERIES OF EVALUATION, EXAMS, AND TESTS. ALL LOOKING AT ONE THING... HOW HER TUMORS RESPONDED TO THE CHEMOTHERAPY. MAKING SURE THE TUMORS ARE STABLE AND ALL OTHER ASPECTS OF HER HEALTH ARE IN CHECK. OUR HOPE IS THAT COME MAY 4TH WE WILL HAVE A BETTER IDEA OF HOW THINGS ARE LOOKING AND HOPEFULLY A GLIMPSE INTO THE FUTURE, REMAINING HOPEFUL THIS WILL BE OUR ONE AND ONLY EXPERIENCE WITH CHEMO. IF THOSE TESTS GIVE US THE ALL CLEAR WE WILL SCHEDULE SURGERY TO REMOVE LADYBUG'S PORT SOME TIME IN MAY! {{{HAPPY-HAPPY-HAPPY DANCE}}} FINGERS CROSSED!

ACCORDING TO OUR MEDICAL TEAM LADYBUG HAS ABOUT A 50/50 SHOT OF A RELAPSE SO THE PLAN WILL BE TO RE-CHECK THE TUMORS EVERY 3 MONTHS WITH OPHTHALMOLOGY EXAMS AND MRI'S. SHOULD ANYTHING OF CONCERN SHOW UP WE'LL MEET AND MAKE A PLAN. 

AFTER THE PORT SURGERY WE WILL LOOK INTO SCHEDULING ANOTHER EYE SURGERY WITH DR. HOFFMAN TO RE-ALLIGN THE PLACEMENT OF LADYBUG'S EYE. NO DATE YET, STILL WEIGHING OPTIONS. 

AND OF COURSE WE'VE GOT THE NO MORE CHEMO PARTY COMING UP ON AUGUST 29TH AFTER THE 5TH ANNUAL UTAH  NF WALK. WE HAVE SO MUCH TO BE GRATEFUL FOR AND WE'RE READY TO CELEBRATE WITH EVERYONE WHO'S HELPED US THROUGH THE YEAR! 

STAY TUNED- HOPEFULLY SUMMER BRINGS MORE GOOD NEWS AND HAPPY, STABLE TUMORS!

Chemotherapy- Round 12!

WE DID IT! SHE DID IT! OUR LITTLE HERO HAS COMPLETED 12  (OKAY 11.5) ROUNDS OF CHEMOTHERAPY!!! WE COULD NOT BE PROUDER OF THIS LITTLE HERO! 

OF COURSE IN TRUE LADYBUG FASHION WE HAD TO GO OUT WITH A BANG! WE WERE ALL OF ABOUT 5 MINUTES INTO TREATMENT WHEN THE NAUSEA HIT AN ALL TIME HIGH. OUR POOR GIRL WAS SICK WITHIN MINUTES. WE AGAIN STOPPED TREATMENT, MET WITH THE MEDICAL TEAM AND DECIDED ON THE BEST WAY TO MOVE FORWARD. MORE MEDS FOR THE NAUSEA AND WE STARTED BACK UP AGAIN. BY THIS TIME OUR FAMILIES WERE ARRIVING FOR THE END OF CHEMO CELEBRATION, I STEPPED OUTSIDE FOR MINUTE TO SAY HELLO. MY SISTER DECIDED TO COME IN AND SAY HELLO AND GIVE LADYBUG A LITTLE HUG. UPON ENTERING THE ROOM SHE NOTICED LADYBUG’S FACE SEEMED TO BE SWOLLEN, HER EYES IN PARTICULAR. GIVEN SHE HAD BEEN CRYING OFF AND ON FOR THE LAST HOUR WE CHALKED IT UP TO THAT. A FEW MINUTES LATER THINGS SEEMED TO BE GETTING WORSE. LADYBUG BECAME INCREASINGLY UNCOMFORTABLE AND MY SISTER MENTIONED HER LEFT EYE JUST DIDN’T LOOK RIGHT. BRETT TOOK ONE LOOK AT HER AND KNEW SOMETHING WAS WRONG. THE ENTIRE LEFT SIDE OF HER FACE WAS RED AND SWOLLEN, AT THIS POINT WE COULD BARELY SEE HER LEFT EYE. IT HAD BEEN LESS THAN 5 MINUTES AND THINGS WERE DEFINITELY NOT IMPROVING. I GRABBED OUR NURSE, WHO PROMPTLY HIT THE STOP BUTTON ON THE INFUSION AND IMMEDIATELY PAGED THE DOCTOR. THAT WAS IT. THE ONCOLOGY TEAM TOOK ONE LOOK AT HER AND DECIDED WE JUST COULD NOT GO ON ANY FURTHER- HALFWAY THROUGH ROUND 12 AND WE WERE OFFICIALLY CALLING IT QUITS! CHEMOTHERAPY WAS DONE. FINISHED. COMPLETE. EXCITEMENT QUICKLY TURNED TO DOUBT. WE WERE SCARED. WHAT IF NOT COMPLETING THE TREATMENT PLAN CAUSES THE TUMOR TO START GROWING AGAIN… WHAT IF………OUR MEDICAL TEAM QUICKLY STOPPED US AND ASSURED US WE WERE DOING THE RIGHT THING. WE WERE DOING EXACTLY WHAT THEY WOULD BE DOING IF IT WAS THEIR CHILD. BECAUSE OF THE SEVERITY OF THE REACTION LADYBUG WAS HAVING THE MEDICAL TEAM WATCHED HER FOR 45 MINUTES TO ENSURE THE MEDICATION WERE WORKING PROPERLY AND GETTING HER BACK TO OUR HAPPY BABY. THE DRUGS HAD OUR GIRL ACTING A LITTLE CRAZY…

 A LITTLE LESS THAN AN HOUR LATER OUR FAMILY HAD ARRIVED, GRANDPA WAS ON THE PHONE, AND WE WERE READY TO CELEBRATE. READY TO CELEBRATE EVERY SINGLE POKE, TEST, EXAMINATION, TEAR, AND SMILE. 12 MONTHS CAME RUSHING BACK IN THE BLINK OF AN EYE. EVERYTHING SHE HAS BEEN THROUGH ALL HERE IN THIS MOMENT… OUR GIRL DID IT! 

WARNING! GRAB YOUR TISSUES!

THERE ARE NO WORDS TO DESCRIBE THE APPRECIATION WE HAVE FOR THE ONCOLOGY DEPARTMENT. THESE AMAZING INDIVIDUALS HAVE LITERALLY KEPT US AFLOAT THROUGH ALL OF THE TRIALS AND TRIBULATIONS. I HOPE NONE OF YOU WILL EVER HAVE TO MEET THESE AMAZING FOLKS BUT IF YOU DO, KNOW YOU ARE IN GREAT HANDS. WE’VE GOT SOME AMAZING PEOPLE UP HERE AT PRIMARY CHILDREN’S! 

TO OUR FAMILY, THANK YOU ALL FOR YOUR LOVE AND SUPPORT. WE LOVE YOU ALL SO MUCH!

TO OUR LADYBUG, MISS RYLIE MARKAY. WE LOVE YOU SO MUCH. BABY GIRL YOU ARE ONE OF THE MOST INSPIRATIONAL SOULS WE HAVE EVER HAD THE PLEASURE OF MEETING. TO SAY WE ARE PROUD OF YOU IS THE UNDERSTATEMENT OF THE CENTURY. A FEW MONTHS BACK WE WERE SENT A QUOTE…

“SOME PEOPLE NEVER GET TO MEET THEIR HERO, WE GET TO RAISE OURS!” 

LADYBUG, WE LOVE YOU SO MUCH. THANK YOU FOR SHOWING US THE TRUE MEANING OF LOVE. WE’VE CLOSED THIS CHAPTER. WE’RE MOVING ON TO THE NEXT PHASE. REGARDLESS OF WHAT COMES YOUR WAY WE WILL BE HERE. THE THREE OF US- STANDING STRONG. REMEMBER, NO MATTER WHAT COMES ABOUT YOU CAN DO HARD THINGS. IN THREE YEARS YOU’VE ACCOMPLISHED SO MUCH. THE BEST IS YET TO COME. GO GET IT! 

Almost There.

WE’RE ALMOST THERE. ONE MORE TREATMENT AND WE’RE A BALL OF MIXED EMOTIONS OVER HEAR… OKAY DAD IS HOLDING STRONG BUT MOMS A CRAZY EMOTIONAL MESS AND IT’S ONLY FRIDAY! AS I LAID AWAKE LAST NIGHT THOUGHTS AND EMOTIONS RUNNING WILD I CAME ACROSS AN ARTICLE AN NF FRIEND POSTED, A SWEET MESSAGE QUITE FITTING FOR OUR LAST PRE-CHEMO/EASTER WEEKEND.  (READ ARTICLE HERE: STRENGTH OF AN EGG)

WE JUST GOT OFF THE PHONE WITH ONCOLOGY- GETTING OUR LAST SET OF INSTRUCTIONS FOR CHEMO WEEKEND. WE’VE GOT BLOOD DRAWS ON SATURDAY, MEDS, FAMILY FUN, AND CHEMO FIRST THING MONDAY MORNING. ALL STANDARD THINGS WE DO EVERY WEEKEND BEFORE CHEMO. THEN THEY BEGAN TO REVIEW OUR SCHEDULE FOR MONDAY. WE WILL GO THROUGH OUR STANDARDS OF MEETING WITH THE DOCS AND NURSES AND THEN WE WILL HEAD BACK TO THE INFUSION AREA FOR CHEMO. THEN… BEFORE WE HEAD HOME WE WILL GET TO TAKE PART IN THE CEREMONIAL RINGING OF THE BELL! SIGNALING WE’RE DONE! “NO MORE CHEMO”! AS THEY TALKED ABOUT RINGING THE CHEMO BELL MY EYES FILLED WITH TEARS… SHE DID IT! WE DID IT! WE ACTUALLY MADE IT! 12 LONG, TERRIFYING MONTHS BUT WE MADE IT!!! WHILE WE ARE SO EXCITED TO CLOSE THIS CHAPTER OF OUR LIVES, TO SAY WE’RE NOT COMPLETELY TERRIFIED WOULD BE A TOTAL LIE. FOR THE LAST 18 MONTHS WE HAVE SPENT NEARLY 2+ WEEKS OF EVERY MONTH UP AT PRIMARY CHILDREN’S, SURROUNDED BY THE COMFORT OF THE DOCTORS AND NURSES WHO HAVE BECOME FAMILY TO US. THESE AMAZING INDIVIDUALS HAVE HELD OUR HANDS WHEN WE WERE SCARED, CHEERED OUR GIRL UP WHEN SHE WASN’T FEELING WELL, AND THEY HAVE PATIENTLY TAUGHT US EVERYTHING WE NEEDED TO KNOW TO MAKE SURE WE KEPT LADYBUG HAPPY AND HEALTHY. OTHER THAN OUR FAMILIES THEY HAVE BEEN THE ONE STEADY THING IN OUR LIVES. THE ONE THING WE COULD ALWAYS COUNT ON NEVER CHANGING. WHILE NO ONE ENJOYS THE HOSPITAL, WHEN YOU SPEND SO MUCH TIME UP THERE IT TURNS INTO YOUR HOME AWAY FROM HOME. THOSE INDIVIDUALS TURN INTO SO MUCH MORE THAN JUST PEOPLE, THEY TURN INTO FRIENDS. THIS HAS BECOME OUR NORMAL. THIS HAS BECOME THE LIFE WE ARE COMFORTABLE WITH. WE HAVE THE ROUTINE DOWN, WE KNOW WHAT TO EXPECT AND WHAT TO DO IF THINGS GET OFF COURSE. WE'VE MEMORIZED THE CHEMO BIBLE FRONT TO BACK. WE KNOW OUR MARCHING ORDERS. MONDAY BEGINS A NEW CHAPTER FOR US. WHILE WE ARE SO EXCITED TO KICK OFF OUR SUMMER DOING ALL THE THINGS WE MISSED OUT ON LAST YEAR, MONDAY ALSO BRINGS A GREAT DEAL OF UNCERTAINTY, ANXIETY, AND FEAR. IT’S THE REALIZATION THAT WHILE WE CLOSE THIS CHAPTER WE’RE NO WHERE NEAR THE END OF OUR STORY. LADYBUG’S FUTURE IS UNCERTAIN. WHILE THE LAST FEW MONTHS HAVE BROUGHT STABLE AND HAPPY TUMORS, WE KNOW THINGS CAN CHANGE AT ANY TIME. WE’VE GOT ABOUT A 50/50 SHOT THE TUMORS START GROWING AGAIN. THERE ARE A LOT OF UNKNOWNS WITH NF, WHICH MEANS OUR LIVES ARE FULL OF COMPLETE UNCERTAINTY. THE FEAR CAN PARALYZE YOU AT TIMES. THERE ARE DAYS WE ARE NEARLY ON OUR KNEES BEGGING FOR ANSWERS, HOPING SOMEONE CAN TELL US WHAT THE FUTURE HOLDS FOR OUR BABY. I AM AN EXTREME PREPARER AND NOT KNOWING WHAT TO PLAN FOR DRIVES ME TO THE BRINK OF INSANITY AT TIME. WE SEE THE STRUGGLES SO MANY OF OUR NF FRIENDS GO THROUGH AND IT'S HARD TO NOT KNOW WHAT THE FUTURE HOLD FOR YOUR OWN CHILD…THEN THERE ARE DAYS OF SUNSHINE. DAYS WHEN LADYBUG GETS THE CHANCE TO BE A NORMAL, CRAZY TODDLER! THOSE DAYS GIVE US HOPE. THOSE DAYS ARE WHAT MOTIVATE US TO KEEP GOING. THOSE DAYS SHOW US WE CAN AND WILL BEAT NF NOT MATTER HOW LONG IT MAY TAKE! 

SO, THIS WEEKEND IS ABOUT CELEBRATING! CELEBRATING EVERY- SINGLE -VICTORY OF THE LAST 12 MONTHS! CELEBRATING THE FACT THAT OUR 2 YEAR OLD DAUGHTER ACCOMPLISHED SOMETHING MOST GROWN ADULTS CAN NOT EVEN THINK OF HANDLING. IT’S ABOUT CELEBRATING THE FACT THAT THROUGH IT ALL OUR LITTLE FAMILY FORGED AN UNBREAKABLE BOND. IT'S ABOUT CELEBRATING THAT EVEN THROUGH COMPLETE EXHAUSTION MOM AND DAD ARE STILL STANDING. IT'S ABOUT CELEBRATING THE MOST AMAZING LITTLE GIRL WE'VE EVER HAD THE PLEASURE OF KNOWING! IT WAS SAD, UGLY, AND COMPLETELY DREADFUL BUT WE DID IT AND WE DID IT TOGETHER! THIS WEEKEND IS ABOUT PUSHING ALL OF OUR FEARS OF THE FUTURE ASIDE. IT’S ABOUT TAKING IN EVERY SINGLE MOMENT AND CELEBRATING THE FACT THAT OUR HERO DID IT! LOOK OUT ROUND #12… WE’RE COMING!