16 August 2015

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! 

06 August 2015

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!