08 December 2015

Make-A-Wish



HAVE YOU EVER HEARD OF MAKE-A-WISH? WELL, THEY ARE A-M-A-Z-I-N-G!!!!

AT LADYBUG'S LAST CHEMOTHERAPY TREATMENT WE WERE APPROACHED BY OUR HOSPITAL SOCIAL WORKER. SHE TALKED TO US ABOUT MAKE-A-WISH, WHAT THEY DID, WHO THEY HELP, ETC. AT THE END OF THE CONVERSATION SHE TOLD US THEY WANTED TO SUBMIT RYLIE FOR A WISH.I THINK THE SHOCK AND THE EXCITEMENT OF THE DAY WAS IN FULL SWING BECAUSE WE VERY CONFUSINGLY SAID OKAY. SHE TOLD US A REPRESENTATIVE FROM MAKE-A-WISH WOULD CALL IN A FEW WEEKS AND SENT US ON OUR WAY.  IT WASN'T UNTIL OUR FAMILY SHOWED UP LATER THAT AFTERNOON AND WE TOLD THEM ABOUT THE CONVERSATION THINGS REALLY STARTED TO SINK IN. SURE ENOUGH A FEW WEEKS LATER MAKE-A-WISH WAS CALLING ASKING ABOUT RYLIE. THEY WANTED TO KNOW EVERYTHING ABOUT HER. WHAT SHE LIKED? HOW SHE WAS FEELING? WE HAD AN AMAZING CONVERSATION, iI LEFT THE CONVERSATION FEELING SO INVIGORATED. FOR THE FIRST TIME IN A LONG TIME WE ALL HAD SOMETHING TO BE EXCITED ABOUT! WE WERE SENT SOME PAPERWORK TOLD WE'D MEET OUR WISH GRANTERS IN A COUPLE WEEKS TO TALK ABOUT RYLIE'S WISH AND GET A FEW OTHER SURPRISED FOR HER MOVING ALONG.  

IN JULY WE HAD THE OPPORTUNITY TO MEET OUR WISH GRANTERS AND SOME OF THE STAFF AT THE WISHING PLACE HERE IN SALT LAKE CITY. GOING TO THE WISHING PLACE FOR THE FIRST TIME IS SUCH A SURREAL EXPERIENCE. FROM THE MOMENT YOU OPEN THE DOOR, LITERALLY THE FIRST THING YOU SEE IS SPECIAL. THE FIRST THING YOU SEE IS A STAR, JUST FOR YOU'RE HERO- WELCOMING HER WITH OPEN ARMS. THE STAFF AND VOLUNTEERS ARE THERE FOR HER. THEY HAVE STUDIED HER EVERY WANT AND DESIRE. BEFORE THEY EVEN MET HER THEY KNEW HER. IT WAS BREATHE TAKING TO SEE. SURPRISING HER WITH A LITTLE SOMETHING AT EVERY TURN OF THE CORNER. IT'S A PLACE WHERE SHE CAN GO TO BE A KID. A PLACE TO FORGET ABOUT THE HOSPITAL, THE POKES THE SURGERIES, THE DOCTORS...... FOR A MOMENT NF DISAPPEARS AND YOU SEE YOUR KID BEING JUST THAT, A KID. 

IF BEING CHOSEN AS A WISH KID IS NOT ENOUGH- THESE KIDDOS ARE LITERALLY SHOWERED WITH LOVE FROM THE MOMENT YOU WALK IN THE DOORS. FIRST STEP, MEET YOUR WISH GRANTERS. WE ARE BLESSED TO HAVE TWO AMAZING INDIVIDUALS THAT TRULY EMBODY THE MAKE-A-WISH VISION. THEIR STORY, THEIR INVOLVEMENT WITH MAKE A WISH WILL SERIOUSLY BRING TEARS TO YOUR EYES


AFTER SOME BRIEF INTRODUCTIONS WE WERE WHISKED OFF ON A TOUR OF THE MAKE-A-WISH SALT LAKE CITY LOCATION. IT'S ABSOLUTELY BEAUTIFUL! THE LAND AND THE BUILDING WERE DONATED BY LOCAL BUSINESSES IN OUR AREA! OUTSIDE IS BEAUTIFULLY LANDSCAPED WITH THIS SPECIAL WISHING POND. A PLACE WE CAN ALWAYS COME BACK TO FOR A LITTLE PEACE. THEY'VE EVEN INVITED US TO HOST HER NEXT BIRTHDAY PARTY THERE! I'M TELLING YOU, THEY VERY MUCH OPERATE AN OPEN DOOR POLICY THERE! 



AFTER OUR TOUR WE HEAD UP TO THE WISHING TOWER! WE DIDN'T WANT RYLIE'S WISH TO BECOME OUR WISH SO WE TRIED TO REALLY TAKE A STEP BACK AND LET THEM WORK THERE MAGIC. SHE'S ONLY THREE AND AT THIS POINT WAS STILL A LITTLE FEARFUL OF ADULTS SHE DIDN'T KNOW BUT THEY HAD SOME AMAZING TRICKS UP THERE SLEEVES. THEY PLAYED A FEW GET-TO-KNOW YOU GAMES WITH HER, RAN AROUND, ATE SOME CANDY, AND GIGGLED A LOT. WITHIN ABOUT 20 MINUTES IT WAS LIKE SHE HAD KNOWN THEM FOREVER. SO, THEY MOVED INTO THE INTERVIEW PROCESS. ASKING HER QUESTIONS THAT WOULD HELP THEM FIGURE OUT THE PERFECT WISH - - - HER FAVORITE COLOR, HER FAVORITE ANIMAL, HER FAVORITE TREAT. HER ANSWERS WERE SO CUTE AND SO VERY TELLING! AFTER A LITTLE BIT OF THE INTERVIEW PROCESS THE QUESTIONS SEEMED TO BE REALLY STUMPING HER SO THEY PULLED OUT SOME FLASH CARDS. A HUGE PLAYGROUND, A PRINCESS BED, A HORSE (THIS IS WHERE DADDY AND MOMMY START GETTING NERVOUS- VISION OF A HORSE IN THE BACK YARD WERE DANCING IN OUR HEADS), A BEACH, AND THE MICKEY MOUSE CLUB HOUSE GANG. THEY WENT THROUGH EACH PICTURE WITH HER AND TALKED TO HER ABOUT WHAT EACH PICTURE MEANT. I WISH YOU COULD HAVE SEEN HER REACTION WHEN THEY SHOWED HER THE MICKEY MOUSE CLUBHOUSE GANG! SHE WAS SO EXCITED! SHE GRABBED THE PICTURE AND CLUNG ONTO IT FOR SEVERAL MINUTES. WHEN OUR WISH GRANTERS ASKED HER IF SHE WANTED TO MEET MINNIE MOUSE SHE EXCLAIMED " SHE'S ONLY ON TV!" WE ALL HAD A GOOD LITTLE LAUGH, FOR HER MINNIE MOUSE IS ON TV, THE THOUGHT SHE COULD ACTUALLY BE REAL AND GO AND MEET HER SEEMED TO COMPLETELY BEWILDER HER. SHE WENT ALONG WITH US, BUT YOU COULD TELL SHE THOUGHT WE WERE ALL A LITTLE CRAZY.... AFTER WE SENT OFF RY'S WISH WE HEADED DOWN STAIRS FOR SOME PAPERWORK AND OF COURSE SOME MORE TREATS.

AFTER WE SENT OFF RY'S WISH WE HEADED DOWN STAIRS FOR SOME PAPERWORK AND OF COURSE SOME MORE TREATS. WHILE MOMMY AND DADDY GET THE LEGAL/MEDICAL STUFF OUT OF THE WAY. THE GIRLS ENTERTAINED RYLIE WISH SOME MORE GIFTS AND SOME ROOT BEER FLOATS. BY THE TIME WE LEFT THAT EVENING RYLIE WAS CRYING WHEN WE TOLD HER IT WAS TIME TO GO HOME...


IT TAKES A FEW WEEKS TO APPROVE THE WISH SO WE HAD A LITTLE TIME TO WAIT AND PLAY....
ABOUT THREE WEEKS LATER OUR WISH GRANTERS CALLED AND SAID THEY'D LIKE TO COME OVER AND TALK TO RYLIE- THEY HAD A LITTLE SURPRISE FOR HER! 


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SO, HER WISH HAS BEEN GRANTED!!!!!!!!!!!!! DISNEY WORLD HERE WE COME!!!!!! WE HEAD OFF TO ORLANDO IN LATE JANUARY FOR A WEEK OF PURE MAGIC! WE ARE ALL GETTING REALLY EXCITED AND CAN'T WAIT TO MAKE SOME AMAZING MEMORIES! STAY TUNED FOR LOTS OF PICTURES



A SWEET LITTLE SIDE NOTE BECAUSE I LOVE THIS LITTLE GIRL AND HER DADDY SO MUCH! AS PART OF THE WISH PROCESS OUR MAKE-A-WISH STAFF MEMBER, OUR WISH GRANTERS, AND THE TWO OF US GOT TO MAKE A WISH FOR RYLIE. WHAT WE WANTED FOR HER AND HER FUTURE. DADDY'S WISH LITERALLY FILLED MY EYES WISH TEARS! ONE DAY, ONE DAY WE WILL FIND A CURE!

08 November 2015

Genetic Testing

AFTER THE INITIAL NEUROFIBROMATOSIS DIAGNOSIS THREE YEARS AGO DR. VISKOCHIL, LADYBUGS GENETICIST, SPOKE TO US ABOUT GENETIC TESTING. AT THE TIME, WE ALL AGREED THERE WAS NOT REALLY A NEED TO RUN THE TEST(S). RYLIE HAD NF, SHE FIT ALL THE CRITERIA, THE TEST WASNT GOING TO TELL US ANY DIFFERENT. AS TIME WENT ON RYLIES TUMORS DEVELOPED- SHE HAD A FEW SURGERIES AND STARTED CHEMO. AGAIN, THE SUBJECT OF GENETIC TESTING CAME UP. HOWEVER, THIS TIME NOT JUST FOR LADYBUG BUT FOR BRETT AND I AS WELL. YOU SEE NF IS A GENETIC DISORDER THAT CAN BE INHERITED FROM A FAMILY MEMBER OR DEVELOP FROM A SPONTANEOUS MUTATION; OUR MEDICAL TEAM TENDS TO BELIEVE LADYBUGS CASE IS STRICTLY A SPONTANEOUS MUTATION... JUST RANDOM LUCK… YAHOO! SEND US TO VEGAS!

LAST YEAR WE BEGAN SERIOUSLY THINKING ABOUT GENETIC TESTING FOR A FEW REASONS--- ONE, HAVING GENETIC TESTING DONE WILL TELL US EXACTLY WHAT TYPE OF NEUROFIBROMATOSIS MUTATION LADYBUG HAS. WHILE IT DOES NOT CHANGE ANYTHING FOR HER NOW NOR DOES, IT AFFECT MEDICAL DECISIONS THAT HAVE ALREADY BEEN MADE. WHAT IT CAN DO IS CHANGE HER FUTURE. SOME DAY IN THE FUTURE WHEN A CLINICAL TRIAL BECOMES AVAILABLE THIS PARTICULAR TEST WILL HELP US TO KNOW IF SHE WILL QUALIFY. IF THE CLINICAL TRIAL IS AIMED AT ATTACKING A SPECIFIC MUTATION, WE WILL NEED TO KNOW WHAT LADYBUGS MUTATION IS. IT GIVES US, AND THE NF RESEARCHERS INFORMATION WE NEED TO FIND A CURE. WE MAY NOT BE ABLE TO DO ANYTHING WITH THE INFORMATION RIGHT NOW BUT WE MAY BE ABLE TO USE IT IN THE FUTURE! THE SECOND REASON FOR DOING THE GENETIC TESTING ON ALL OF US IS FOR FAMILY PLANNING PURPOSES.IF NF IS A GENE WE ALL CARRY IT WOULD LIKELY BE PASSED ON TO FUTURE CHILDREN.
SO… WHY TALK ABOUT TAKING THE TESTS NOW? TWO REASONS REALLY. ONE, AS THIS YEAR COMES TO A CLOSE WE HAVE ALREADY HIT JUST ABOUT EVERY LEVEL YOU CAN THINK OF IN REGARDS TO INSURANCE DEDUCTIBLES AND PREMIUMS. DOING THE TEST THIS YEAR WILL SAVE US A GREAT DEAL OF MONEY. WHILE IT IS NOT THE MAIN REASON FOR OUR DECISION, IT IS A HUGE FACTOR. WE ARE TALKING THOUSANDS OF DOLLARS IF WE WAIT UNTIL NEXT YEAR OR EVEN THE YEAR AFTER THAT. THESE TESTS CAN BE EXTREMELY EXPENSIVE AND NOT ALWAYS COVERED BY INSURANCE ADD IN 3 PEOPLE THAT NEED TO BE TESTED IT CAN BECOME QUICKLY OUT OF REACH, DOING THE TEST THIS YEAR PUTS THINGS IN A LITTLE BIT MORE OF A  REACHABLE POSITION FOR US. THE SECOND AND PROBABLY THE HARDEST PART OF THIS DECISION INVOLVES BRETT AND I. THIS HAS BEEN SOMETHING WE HAVE STRUGGLED WITH FOR ALMOST 2 YEARS NOW- THE DECISION TO PERFORM THE TESTING OR TO FORE GO IT ALTOGETHER. WE HAVE KEPT THIS DEBATE PRIVATE FOR THE MOST PART, AND TO BE HONEST BRETT AND I AT TIMES HAVE AVOIDED DISCUSSING IT WITH EACH OTHER ALTOGETHER. THESE TESTS WILL VERY MUCH DETERMINE OUR FAMILIES FUTURE AND WE BOTH HAVE TO BE PREPARED TO NOT ONLY HEAR THE RESULTS BUT LIVE WITH THEM AS WELL.

BRETT AND I HAVE ALWAYS ASSUMED WE WOULD HAVE MORE CHILDREN. AFTER RYLIE WAS DIAGNOSED WITH NF WE BOTH AGREED IT CHANGED NOTHING AND WE MOVED ON WITH THE IDEAS OF HAVING ANOTHER BABY WHEN WE WERE READY, I MEAN WE HAD A 6 MONTH OLD. ADDING ANOTHER MEMBER TO THE FAMILY WAS STILL A LONG WAYS AWAY. FAST FORWARD A YEAR AND EVERYTHING CHANGED. RYLIE’S TUMORS WERE FOUND; SHE STARTED CHEMO, AND A WORLD WIND OF STRESS AND CRAZINESS ENSUED. WATCHING YOUR CHILD GO THROUGH SOMETHING AS EXTREMELY PAINFUL AS A YEAR OF CHEMOTHERAPY CHANGES THINGS. WATCHING YOUR CHILD SUFFER THROUGH THAT PAIN AND NOT BE ABLE TO DO ANYTHING ABOUT IT DAMAGES YOU. IT CHANGES THE WAY YOU INTERACT WITH PEOPLE, HOW YOU DO THINGS, AND THE WAY YOU PLAN FOR THE FUTURE… IT CHANGES EVERY SINGLE ASPECT OF YOUR LIFE. DREAMS YOU HAD CHANGE, PLANS FOR THE FUTURE CHANGE AND IT TAKES TIME TO ADJUST TO ALL OF THOSE CHANGES.
A FEW MONTHS INTO HER CHEMO TREATMENTS WE AGAIN HAD AN APPOINTMENT WITH THE GENETICIST. THE APPOINTMENT WAS PRETTY ROUTINE BUT ONE QUESTION AT THE END REALLY THREW US FOR A LOOP….. “DO YOU WANT TO HAVE MORE KIDS?” IT STOPPED BOTH OF US DEAD IN OUR TRACKS. YES... NO...YES, BUT CERTAINLY NOT NOW. OUR BABY WAS GOING THROUGH HELL AND WE COULD NOT EVEN THINK ABOUT ADDING A BABY TO THE MIX. FOR ONE HER CHEMO SCHEDULE DICTATED OUR ENTIRE LIFE, HOW WE WOULD EVER MAKE IT TO ONE MORE DOCTORS APPOINTMENT SEEMED COMPLETELY OUT OF REACH. MOREOVER, MY TRACK RECORD OF HAVING A DREAM PREGNANCY JUST DOES NOT SEEM TO EXIST. DR. VISKOCHIL WAS KIND AND UNDERSTANDING, REALIZING WE PROBABLY HAD NOT EVEN THOUGHT ABOUT THE TESTING SINCE WE LAST VISITED WITH HIM. HE REMINDED US THAT GENETIC TESTING WAS STILL ON THE TABLE AND IF/WHEN WE WERE READY TO HAVE ANOTHER BABY IT MIGHT BE SOMETHING WE WANT TO CONSIDER. YOU SEE, IF BRETT OR I CARRY THE NF GENE WE HAVE A 50/50 CHANCE OF PASSING NF ON TO ALL FUTURE CHILDREN. STATISTICS, THAT TO BE HONEST SCARES THE CRAP OUT OF US. IF RYLIE’S MUTATION WAS IN FACT SPONTANEOUS, WE HAVE MORE LIKE A 1 IN A MILLION SHOT... KIND OF A LIGHTNING DOES NOT STRIKE TWICE SCENARIO. FOR US WE NEED THESE ANSWERS BEFORE WE CONSIDER HAVING ANOTHER BABY.  

THAT APPOINTMENT, THAT QUESTION, HAUNTED ME ESPECIALLY FOR MONTHS AND IF I AM BEING HONEST, IT STILL HAUNTS ME. IT IS ALWAYS IN THE BACK OF MY MIND TAUNTING ME WITH A THOUSAND “WHAT IFS”. I HAD ALWAYS KNOWN WE WOULD HAVE ANOTHER BABY. WHILE WE NEVER HAD A SET NUMBER IN MIND, WE BOTH ALWAYS TALKED ABOUT “KIDS”, NEVER JUST A CHILD. FROM THE MOMENT RYLIE WAS BORN I WANTED HER TO HAVE A SIBLING. OKAY, THAT IS A STRETCH BUT YOU GET WHAT I AM SAYING. BRETT AND I BOTH HAVE SIBLINGS AND WHILE WE MAY DRIVE EACH OTHER COMPLETELY NUTS, WE KNOW THOSE 4 HAVE OUR BACKS NO MATTER WHAT. YOU HAVE A BUILT IN BEST FRIEND, A PROTECTOR, A PERSON WHO WILL ALWAYS BE WITH YOU COME HELL OR HIGH WATER. THE THOUGHT RYLIE MAY NEVER HAVE THAT EXPERIENCE TORE ME UP INSIDE. MY PREGNANCY WITH RYLIE WAS NOT EASY; IN FACT, I HATED EVERY SECOND OF IT AND COMPLAINED EVERY STEP OF THE WAY. I WAS CONSTANTLY SICK; I HAD THE WORST ACNE I HAVE EVER EXPERIENCED… EVERYWHERE, AND TOWARDS THE END STRUGGLED WITH PRE-ECLAMPSIA. IT WAS AWFUL. THERE WAS NO GLOW, JUST LOTS OF TEARS. THEN, THE MOST BEAUTIFUL BABY WE HAVE EVER LAID EYES ON WAS BORN. SHE CHANGED EVERYTHING. SHE MADE ALL THE TEARS AND MISERABLE DAYS WORTH IT. AGAIN, THE THOUGHT OF NEVER HAVING ANOTHER BABY NEVER CROSSED OUR MINDS. I ALMOST IMMEDIATELY BEGAN THINKING OF THINGS I WAS GOING TO DO BETTER THE NEXT TIME. YOU LEARN A LOT WITH YOUR FIRST CHILD AND I WANTED TO DO BETTER THAT NEXT TIME AROUND- TRY HARDER IN CERTAIN AREAS AND EASE UP ON THINGS THAT REALLY DID NOT MATTER.THE THOUGHT OF HAVING THAT CHOICE TO HAVE ANOTHER BABY TAKEN AWAY FROM US MADE ME MAD AND IT MADE ME MAD FOR A REALLY LONG TIME. I FELT LIKE WE WERE BEING PUNISHED FOR SOMETHING. THEN IT MADE ME SAD. SAD, I DID NOT ENJOY POSSIBLY THE ONLY OPPORTUNITY I WOULD EVER HAVE TO BE PREGNANT. I TOOK THAT EXPERIENCE FOR GRANTED AND IT DESTROYED ME. IT TOOK ME A LONG TIME TO REALIZE RYLIE’S NF DIAGNOSIS WAS NOT A PUNISHMENT FOR HER OR FOR US. IT HAS BEEN A HUGE BLESSING. WE HAVE LEARNED AMAZING THINGS ABOUT EACH OTHER, OUR FAMILY, AND OUR FRIENDS. WE HAVE MET NEW SOULS THAT HAVE TOUCHED OUR LIVES GREATLY AND WE HAVE HAD EXPERIENCES THAT WE WILL CARRY WITH US FOREVER.  TRAVELING THROUGH THAT REALIZATION TOOK TIME, TIME THAT WE NEEDED IN ORDER TO COME TO TERMS WITH WHATEVER THESE TEST RESULTS WILL TELL US. THIS MAY NOT HAVE BEEN THE LIFE WE DREAMED ABOUT ON OUR WEDDING DAY OR EVEN THE DAY RYLIE WAS BORN BUT IT WAS THE LIFE WE WERE GIVEN AND WE WANT TO ENJOY EVERY SECOND OF IT. 


THAT ONE QUESTION SPARKED A DEEP FEAR IN BOTH OF US AND ULTIMATELY A QUESTION WE HAD TO HAVE ANSWERED BEFORE WE DECIDE TO EXPAND OUR FAMILY. DID RYLIE INHERIT NF FROM ONE OF US? WHEN YOUR CHILD IS DIAGNOSED WITH A LIFE LONG DISEASE, YOU HAVE A LOT OF QUESTIONS. OUR FIRST QUESTION HAS ALWAYS BEEN HOW? HOW DID THIS HAPPEN? WE DID NOT EVEN KNOW WHAT NF WAS 3 YEARS AGO. KNOWING THIS IS A GENETIC CONDITION AND PERHAPS SHE GOT IT FROM US IS PHYSICAL AND MENTAL TORTURE. I WANT TO MAKE IT VERY CLEAR, WHILE WE HAVE NEVER BLAMED EACH OTHER, WE HAVE BLAMED OURSELVES REPEATEDLY. WE ARE ALWAYS SECOND GUESSING CHOICES WE MADE WONDERING IF THIS OR THAT DID THIS TO OUR BABY. IT DOES NOT MATTER HOW MANY TIMES A DOCTOR TELLS US WE DID NOTHING WRONG, YOU ALWAYS FEEL YOU DID. THESE TESTS ARE NOT ABOUT PLACING BLAME, THEY ARE JUST ANSWERS TO A PUZZLE WE ARE TRYING TO PUT TOGETHER. WE MAY NEVER BE READY TO HEAR THE RESULTS BUT WERE PREPARED TO HANDLE WHAT WE HEAR AND MOVE FORWARD WITH WHAT WE FILL IS BEST FOR OUR MARRIAGE AND OUR FAMILY.

SO, LAST WEEK WE OFFICIALLY STARTED THE GENETIC TESTING PROCESS. <INSERT HAPPY DANCE OR TERRIFIED FACES, IT REALLY JUST DEPENDS ON THE DAY> THE FIRST PART OF THIS TEST INVOLVED A SIMPLE BLOOD TEST FOR RYLIE. THE RESULT WERE SENT OFF TO A UNIVERSITY BACK EAST  WHERE THEY WILL STUDY EVERY PART OF HER DNA. ONCE THEY KNOW WHICH NF MUTATION SHE HAS, A REPORT WILL BE WRITTEN AND SENT OFF TO THE UNIVERSITY OF UTAH WHERE THEY WILL THEN CONTACT US WITH THE RESULTS. FROM THERE ANOTHER SET OF BLOOD TESTS WILL BE PREFORMED ON  BRETT AND I. OUR TEST IS MUCH LESS INVASIVE. ONCE THEY KNOW WHICH MUTATION RYLIE HAS THEY WILL ONLY BE LOOKING FOR THAT MUTATION WITH US SO WE HAVE A LOT LESS BLOOD THAT WILL NEED TO BE STUDIED. THINK OF IT THIS WAY; RYLIE’S TEST IS LIKE A RULER- OUR TEST IS MORE LIKE AN INCH ON THAT RULER. WHATEVER MUTATION SHE HAS ONE OF US WOULD HAVE TO HAVE IT IN ORDER FOR NF TO HAVE BEEN PASSED DOWN BY ONE OF US. IF THEY DO NOT SEE THAT PARTICULAR GENE PRESENT IN EITHER ONE OF US WE WILL KNOW WITH 100% CERTAINLY THAT RYLIE’S CASE WAS STRICTLY SPONTANEOUS.

WE’VE GOT ABOUT A 6 WEEK WAIT FOR RYLIE’S RESULTS SO WE EXPECT TO MEET WITH THE DOCTORS TOWARDS THE FIRST PART OF NEXT YEAR TO GO OVER HER RESULTS, AFTER THAT WE WILL LOOK INTO SCHEDULING OUR TEST AND AGAIN HAVE ANOTHER 6 WEEK WAIT FOR THOSE RESULTS. OUR HOPE IS TO HAVE SOME ANSWERS BY SPRING OF 2016.  IT IS A LONG TRIP DOWN THIS EVER CHANGING NF ROAD BUT WE ARE EXCITED TO GET SOME ANSWERS AND HOPEFULLY BE ABLE TO BETTER PREPARE FOR WHATEVER THE FUTURE MAY HAVE IN STORE FOR US. 

AND... JUST BECAUSE SHE'S CUTE... PICTURES! 


















26 October 2015

Scanxiety



Things have been quiet on the home front. Ladybug has been doing very well! The last few months have defiantly shown us how much chemotherapy affected her. Six months ago her blood counts were low, she had burst of energy but mainly she was a movie watching freak- while she still loves her movies she also loves playing outside, riding her bike, and just racing around with her friends. Shes a dancing and singing fool- there are days we wish for a few seconds of peace and quiet and then we remember what that quiet feels like. Ill take all her crazy toddler moments over another year of chemo any day! We are so proud of her- it makes me a little emotional thinking just how far she has come. She is thriving at school, learning lots of new moves in dance class, making all sorts of new friends in tumbling class. Shes really soaking in every second of her toddler days. Shes going to be graduating high school before I know it!


Time has flown by and before we know it weve approached ladybugs six month post chemo scans and Im not going to lie were having a lot of scanxiety around here. Every three months we have a series of appointments, tests that will tell us how those darn tumors are doing. Every three months we hold our breath and pray we hear good news, and pray, and pray, and pray some more. Wednesday we start those series of tests--- We will meet with Dr. Hoffman for some eye tests and will then proceed with an mri after the holidays. Cross your fingers and pray for good news!

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!