Ophthalmology

FRIDAY MARKED LADYBUG’S FIRST OPHTHALMOLOGY VISIT POST CHEMO. TO SAY WE WERE ALL NERVOUS FOR THIS APPOINTMENT WOULD BE A BIG UNDER STATEMENT! OVER THE LAST 18 MONTHS ANY OUNCE OF BAD NEWS WE HAVE RECEIVED HAS COME FROM OPHTHALMOLOGY SO WE ARE ALWAYS HOLDING OUR BREATHE WHEN IT COMES TIME TO MEET WITH THEM! I AM PRETTY SURE I HAD AT LEAST 5 MELTDOWNS PRIOR TO THAT 

 APPOINTMENT…. THE EAR INFECTION AND NEW SET OF ANTIBIOTICS SURELY DID NOT HELP MATTERS! 

GOOD NEWS! THE SWELLING IN BOTH OF HER EYES IS STILL DOWN. NOTHING SEEMS TO BE ACTING UP… AND EVEN BETTER NEWS HER RIGHT EYE RESPONDED TO TREATMENT VERY WELL!!! SHE IS NOW SEEING 20/30 OUT OF HER RIGHT EYE (SHE WAS ABOUT 20/80 WHEN WE STARTED)!

HER LEFT EYE IS STILL THE SAME- NO CHANGE- WHICH I GUESS YOU CAN TAKE ONE WAY OR THE OTHER… HER EYESIGHT HASN’T GOTTEN ANY WORSE WHICH IS GREAT NEWS, BUT IT HASN’T GOTTEN ANY BETTER, WHICH ISN’T THE GREATEST NEWS. GIVEN ALL SHE HAS BEEN THROUGH THE LAST FEW MONTHS WE CHOOSE TO SEE THIS AS A WIN. STABLE IS GOOD.

CURRENTLY, IN HER LEFT EYE ALL SHE IS ABLE TO SEE IS SHAPES- BASICALLY SHADES OF LIGHT AND DARK. IF SHE CLOSES HER RIGHT EYE SHE WOULD SEE THERE IS SOMETHING IN FRONT OF HER BUT SHE WOULDN’T BE ABLE TO MAKE OUT EXACTLY WHAT IT WAS. CRAPPY, YES- BUT IF THERE IS A SILVER LINING IN ALL OF THIS IT DOESN’T SEEM TO AFFECT HER MUCH. BY OUR BEST GUESS HER TUMORS LIKELY STARTED TO GROW ABOUT THE SAME TIME SHE STARTED TO WALK SO SHE DOESN’T REALLY KNOW ANY DIFFERENT. THIS HAS BEEN ALL SHE’S EVER KNOWN SO IT HASN’T TAKEN A GREAT DEAL OF TIME FOR HER TO ADJUST. SHE’S NOW WEARING HER CUTE LITTLE SAFETY GLASSES ALL OF THE TIME WHICH KEEPS HER RIGHT EYE SAFE AND OF COURSE MAKES HER EVEN CUTER THAN SHE EVER WAS BEFORE! 

IF ALL GOES WELL WITH THE POST TREATMENT SCANS ON MONDAY WE WILL SEE DR. HOFFMAN AGAIN IN 3 MONTHS- AFTER THAT WE MOVE TO EVERY 6 MONTHS! WHAT WILL WE EVER DO WITH ALL OF THAT TIME ON OUR HANDS! 

3 Months.

TIME SURE FLIES WHEN YOU'RE HAVING FUN! IT'S BEEN 3 MONTHS SINCE RYLIE COMPLETED HER CHEMOTHERAPY TREATMENTS AND ITS BEEN A WHIRLWIND OF FUN! 

RYLIE STARTED DANCE! 

WE'VE PLAYED AND PLAYED AND PLAYED WITH FAMILY AND FRIENDS! 

AND... THE BEST NEWS OF ALL...WE FINALLY FINISHED OFF THE LAST OF HER PRESCRIPTIONS! WE ARE OFFICIALLY CHEMO FREE! 

THE LAST FEW WEEKS HAVE BEEN FULL OF SMILES, LAUGHTER, AND SUNSHINE. SMILES WE'VE TREASURED. YOU SEE TOMORROW IS A BIG DAY FOR OUR LITTLE FAMILY... TOMORROW STARTS THE FIRST ROUND OF A SERIES OF TESTS RYLIE WILL NEED TO HAVE OVER THE NEXT FEW WEEKS TO DETERMINE IF THE LAST YEAR WAS "SUCCESSFUL". ANY TUMOR GROWTH COULD MEAN A NEW CHEMOTHERAPY PROTOCOL- ANOTHER YEAR OF CHEMO... ANOTHER YEAR OF PUTTING LIFE ON PAUSE. 

THIS TIME SEEMS TO BE A LITTLE MORE TERRIFYING THAN THE LAST. LAST TIME WHILE WAITING FOR SCANS WE WERE COMPLETELY IN THE DARK.... THIS TIME WE KNOW. WE KNOW WHAT COULD POTENTIALLY LIE AHEAD. WE'VE SEEN THE NASTY SIDE EFFECTS OF CHEMO. WE'VE WALKED THROUGH THE SLEEP DEPRIVATION. WE KNOW WHAT WERE GETTING INTO. THOSE THINGS, ALL OF THOSE THINGS WE CAN HANDLE. THE THOUGHT OF TELLING RYLIE SHE HAS TO START CHEMO AGAIN LITERALLY RIPS OUR HEARTS INTO PIECES. IT IS NEARLY IMPOSSIBLE TO WRAP OUR HEADS AROUND. 

THIS WEEK HAS BEEN FULL OF EMOTIONS- AT TIMES OVER TAKING OUR BODIES. I'VE BEEN FROZEN IN FEAR MORE TIMES THIS WEEK THAN EVER BEFORE. I'VE BROKE DOWN AND CRIED AND BEGGED GOD TO WATCH OVER OUR GIRL, TO GIVE HER THE CHANCE TO KEEP HER LIFE THE WAY IT IS. TO JUST LET HER BE A KID. 

TOMORROW IS A BIG DAY. WE'VE GOT AN AFTERNOON FULL OF EYE EXAMS, AND WHILE WE WILL HAVE TO WAIT FOR THE MRI RESULTS ON THE 17TH FOR COMPLETE ANSWERS-TOMORROW SHOULD GIVE US A PRETTY GOOD IDEA OF WHAT THE NEXT CHAPTER WILL LOOK LIKE. CROSS YOUR FINGERS AND TOES. SAY A FEW PRAYERS. AND SEND ALL THE POSITIVE THOUGHTS YOU HAVE OUR WAY! 

Throw Back Thursday

ONE YEAR AGO TODAY WE WERE WALKING INTO PRIMARY CHILDREN'S HOSPITAL. CHECKING IN FOR SURGERY AND LADYBUG'S FIRST TWO ROUNDS OF CHEMOTHERAPY. I DON'T REMEMBER A LOT FROM THAT DAY. I WAS SO NUMB ALL MORNING. I, WE HAD NO IDEA WHAT TO EXPECT. NEITHER ONE OF US HAD EVER WATCHED SOMEONE GO THROUGH CHEMO AND THE FACT THAT OUR FIRST EXPERIENCE WAS GOING TO BE WITH OUR DAUGHTER TERRIFIED US. WE JUST SAT IN SILENCE. BOTH TOO AFRAID TO TELL THE OTHER ABOUT OUR FEARS. WE DIDN'T HAVE TO SAY ANYTHING, YOU COULD FEEL IT. LADYBUG'S PORT PLACEMENT SURGERY WAS DELAYED BY SEVERAL HOURS AND TO BE HONEST WE DIDN'T SEEM TO MIND. THE LONGER SHE STAYED WITH US THE LONGER SHE STAYED "NORMAL"... THE LONGER OUR LIVES STAYED CONTROLLABLE. 

LATER THAT AFTERNOON WHEN THEY FINALLY ROLLED HER OUT OF SURGERY COMPLETE PANIC SET IN. I'M NOT SURE IF IT WAS SEEING OUR DAUGHTER LAYING IN A HOSPITAL BED WITH NO COLOR, COMPLETELY UNRESPONSIVE OR THE HARSH REALIZATION THAT WE WE'RE ON OUR WAY UP TO THE ONCOLOGY WARD BUT IT ALL BECAME TOO MUCH TO HANDLE. I WAS SICK TO MY STOMACH. I FELT LIKE I COULD BARELY BREATHE. I JUST WANTED TO CRAWL INTO A CORNER AND CRY. AS WE MOVED FROM THE FIRST FLOOR TO THE DREADED FOURTH FLOOR I HAD TO CONVINCE MYSELF TO STAY. I WAS READY TO TURN AROUND AND RUN OUT OF THAT HOSPITAL AS FAST AS I COULD. AS THE ANESTHESIA WORE OFF RYLIE'S PAIN INCREASED. SHE WAS CRYING, SCARED, AND COMPLETELY OUT OF IT. I FELT LIKE THE WALLS WERE CAVING IN. I REMEMBER LEAVING HER ROOM FOR A FEW MINUTES. I THINK I SAID I NEEDED TO USE THE BATHROOM BUT TRUTH BE TOLD I JUST NEEDED SOME AIR. I NEEDED A FEW MINUTES TO GATHER MYSELF UP, CONVINCE MYSELF IT WAS GOING TO BE OKAY BEFORE I WENT IN AND TRIED TO CONVINCE MY DAUGHTER OF THE SAME. 

I THOUGHT I HAD IT ALL TOGETHER THEN I OPENED THE DOOR BACK TO RYLIE'S ROOM AND SAW OUR FAMILIES STANDING THERE. MY EYES IMMEDIATELY FILLED WITH TEARS AND THEN IT HAPPENED. BRETT'S SISTER HUGGED ME AND I REMEMBER JUST CRYING. IT WAS THE FIRST TIME ALL DAY I HAD FELT SAFE. WE DIDN'T HAVE TO SAY ANYTHING. JUST KNOWING THEY WERE THERE SAVED US FROM COMPLETE DESTRUCTION. AS A PARENT YOU ALWAYS TRY TO PUT ON A BRAVE FACE, WE HAD DONE IT FOR MONTHS. TELLING OUR FAMILIES IT WOULD ALL BE OKAY. I'M SURE THEY SEEN RIGHT THROUGH OUR PATHETIC ATTEMPTS TO MINIMIZE THE SITUATION AND OUR SHEER TERROR BUT THEY NEVER SAID ANYTHING. THEY JUST SHOWED UP WHEN WE NEEDED THEM THE MOST. STAYED FOR A FEW MINUTES. HUGGED US AND TUCKED US IN FOR THE NIGHT. I HAVE NO DOUBT THAT WE WOULD NOT HAVE SURVIVED THIS LAST YEAR WITHOUT EACH AND EVERY ONE OF THEM. THEY HAVE DONE MORE FOR US IN THE LAST 12 MONTHS THAN WE COULD EVER DO FOR THEM IN THE REST OF OUR LIFETIME. THEY WERE OUR ANCHORS! 

TODAY IS NOT ABOUT TEARS AND SADNESS. YES, THIS YEAR HAS SUCKED! IT HAS BEEN THE HARDEST THING I HAVE EVER BEEN THROUGH IN MY LIFE. IT HAS TESTED ME IN WAYS I DIDN'T THINK COULD EVER BE POSSIBLE. BUT, IT HAS ALSO BEEN ONE OF THE BEST YEARS OF OUR LIVES. THIS YEAR HAS FORCED US TO CONFRONT ISSUES HEAD ON. IT'S FORCED US TO RELY ON EACH OTHER AND UNDERSTAND NO ONE IS PERFECT. IT'S FORCED US TO ASK FOR HELP- HELP I NEVER WOULD HAVE SOUGHT OUT BEFORE. HELL, OUR DAUGHTER GOT TO SPEND ONE DAY EVERY MONTH ALONE WITH HER LOVED ONES. ONE-ON-ONE TIME WE USUALLY TAKE FOR GRANTED. SHE WAS ABLE TO FORM A BOND WITH HER GRANDPARENTS THAT MANY KIDS DON'T GET... I MEAN SERIOUSLY! HOW MANY KIDS DO YOU KNOW THAT GET TO GO SPEND A FULL DAY WITH THEIR GRANDPARENTS BY THEMSELVES EVERY MONTH--- NO DISTRACTIONS JUST PURE FUN! OUR SISTERS HAVE PICKED HER UP FROM SCHOOL, TAKEN HER FOR SLEEPOVERS... THE LIST GOES ON AND ON. THEY HAVE BEEN OUR HAPPY IN THE SADDEST OF TIMES, OUR SAFETY NET!

WE ARE SO INCREDIBLY LUCKY. OUR LITTLE GIRL SURVIVED! SHE IS THRIVING! WE GET TO TAKE HER HOME EVERY NIGHT, TUCK HER INTO BED, AND KISS HER SWEET FACE EVERY MORNING. IT MIGHT NOT BE THE PERFECT ENDING YOU SEE IN THE MOVIES BUT IT'S OUR LIFE. NF TORMENTS US WITH ENDLESS DOCTORS APPOINTMENTS AND THE FEAR OF THE UNKNOWN, BUT NF ALSO GAVE US LOVE AND APPRECIATION. TODAY, WE WILL CELEBRATE ALL WE HAVE TO BE THANKFUL FOR AND THE TREMENDOUS AMOUNT OF LOVE WE HAVE FOR EACH AND EVERY ONE OF YOU. THANK YOU FOR STICKING BY OUR SIDES! IT;S BEEN ON HECK OF A YEAR! 

HAPPY END OF CHEMO LADYBUG!

 Check out LadyBug's 1 year chemo journey here!

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!