tag:blogger.com,1999:blog-1034815176305546692024-03-14T08:24:52.174-06:00THE LADYBUG GANGRylie's NF JourneyAnonymoushttp://www.blogger.com/profile/00163471267380896406noreply@blogger.comBlogger103125tag:blogger.com,1999:blog-103481517630554669.post-62733668223734922472015-12-08T14:01:00.001-07:002015-12-08T18:36:54.582-07:00Make-A-Wish<div class="MsoNormal">
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<span style="font-family: "corbel" , "sans-serif"; font-size: 10.0pt; line-height: 115%;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIl24DVTyenVlEjU57pp7r1MADe9GQeHbmPpbVQiQRuBv3jzir-m2iMPV6ENvcQa9uYGEErRg2b70D3IWjn7Q1tUdK8yTuS7RkD4QOA4rK_tQo-yxpiRt2Exxse9CYCI53-1a4FMmTATXN/s640/blogger-image--530720029.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIl24DVTyenVlEjU57pp7r1MADe9GQeHbmPpbVQiQRuBv3jzir-m2iMPV6ENvcQa9uYGEErRg2b70D3IWjn7Q1tUdK8yTuS7RkD4QOA4rK_tQo-yxpiRt2Exxse9CYCI53-1a4FMmTATXN/s640/blogger-image--530720029.jpg" /></a></span></div>
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<span style="font-family: "corbel" , "sans-serif"; font-size: 10.0pt; line-height: 115%;">HAVE YOU EVER HEARD OF MAKE-A-WISH? WELL, THEY ARE
A-M-A-Z-I-N-G!!!!</span></div>
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<span style="font-family: "corbel" , sans-serif;"><span style="font-size: 10pt; line-height: 115%;">AT LADYBUG'S LAST CHEMOTHERAPY TREATMENT WE WERE </span><span style="font-size: 13.3333px; line-height: 15.3333px;">APPROACHED</span><span style="font-size: 10pt; line-height: 115%;"> BY <span style="font-family: "corbel" , sans-serif;">OUR</span> HOSPITAL SOCIAL WORKER. SHE TALKED TO US ABOUT </span></span><a href="http://utah.wish.org/" style="font-family: Corbel, sans-serif; font-size: 10pt; line-height: 115%;">MAKE-A-WISH</a><span style="font-family: "corbel" , sans-serif;"><span style="font-size: 10pt; line-height: 115%;">, 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 </span><span style="font-size: 13.3333px; line-height: 15.3333px;">EXCITEMENT</span><span style="font-size: 10pt; line-height: 115%;"> 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 OU<span style="font-family: "corbel" , sans-serif;">R FAMILY SHOWED UP LATER THAT AFTERNOON AND WE TOLD THEM ABOUT THE CONVERSATION THINGS REALLY STARTED TO <span style="font-family: "corbel" , sans-serif;">SINK IN. </span></span>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<span style="font-family: "corbel" , sans-serif;">, i<span style="font-family: "corbel" , sans-serif;">I LEFT THE CONVERSATION FEELING SO <span style="font-family: "corbel" , sans-serif;">INVIGORATED</span>. FOR THE FIRS<span style="font-family: "corbel" , sans-serif;">T TIME IN A LONG TIME WE ALL HAD<span style="font-family: "corbel" , sans-serif;"> SOMETHING TO BE EXCITED ABOUT<span style="font-family: "corbel" , sans-serif;">! WE WERE SENT SOME PAPERWORK TOL<span style="font-family: "corbel" , sans-serif;">D WE<span style="font-family: "corbel" , sans-serif;">'D <span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;">MEET</span> OUR WISH GRANT<span style="font-family: "corbel" , sans-serif;">ERS IN A COUPLE WEEK<span style="font-family: "corbel" , sans-serif;">S TO TALK ABOUT RYLIE<span style="font-family: "corbel" , sans-serif;">'S WISH AND GET A FEW OTHER SURPRISED FOR HER MOVING ALONG. <span style="font-family: "corbel" , sans-serif;"> </span></span></span></span></span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "corbel" , sans-serif;"><span style="font-size: 10pt; line-height: 115%;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;">IN JULY WE HAD THE OPPORTUNITY TO MEET OUR WISH GRANTERS AND SOME OF THE STAFF AT THE WISHING <span style="font-family: "corbel" , sans-serif;">PLACE HERE IN SALT LAKE CITY. GOING TO THE WISHING PLACE FOR THE FIRST TIME IS SUCH A <span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;">SURREAL</span> EXPERIENCE. FROM THE MOMENT YOU OPEN THE DOOR, LITERALLY <span style="font-family: "corbel" , sans-serif;">THE FIRST THING YOU SEE IS <span style="font-family: "corbel" , sans-serif;">SPECIAL.<span style="font-family: "corbel" , sans-serif;"> THE FIRST THING YOU SEE I<span style="font-family: "corbel" , sans-serif;">S A STAR, JUST FOR YOU'RE HERO- WELCOMIN<span style="font-family: "corbel" , sans-serif;">G HER WITH OPEN ARMS<span style="font-family: "corbel" , sans-serif;">. T<span style="font-family: "corbel" , sans-serif;">HE STAFF AND VOLUNTEERS ARE THERE <span style="font-family: "corbel" , sans-serif;">FOR HER. THE<span style="font-family: "corbel" , sans-serif;">Y<span style="font-family: "corbel" , sans-serif;"> HA</span>VE STUDIED HER EVERY WANT AND DESIRE. BEFORE THEY EVEN MET HER THEY KNEW HER<span style="font-family: "corbel" , sans-serif;">. 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 <span style="font-family: "corbel" , sans-serif;">POKES</span> THE SURGERIES, THE DOCTORS...... FOR A MOMENT <span style="font-family: "corbel" , sans-serif;">NF DISAPPEARS AND <span style="font-family: "corbel" , sans-serif;">YOU SEE YOUR KID BEING JUST THAT, A KID. </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "corbel" , sans-serif;"><span style="font-size: 10pt; line-height: 115%;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;">IF BEING <span style="font-family: "corbel" , sans-serif;">CHOSEN AS A WISH KID IS<span style="font-family: "corbel" , sans-serif;"> NOT EN<span style="font-family: "corbel" , sans-serif;">OUGH<span style="font-family: "corbel" , sans-serif;">- THESE KIDDOS ARE LITERALLY SHOWERED WITH LOVE FROM THE MOMENT YOU WALK IN THE DOORS. FIRST STEP, MEET YOUR WIS<span style="font-family: "corbel" , sans-serif;">H GRANTERS. WE <span style="font-family: "corbel" , sans-serif;">ARE BLESSED TO HAVE TWO AMAZING <span style="font-family: "corbel" , sans-serif;">INDIVIDUALS THAT TRULY EMBODY THE MAKE-A-WISH VISION. THEIR STORY, THEIR <span style="font-family: "corbel" , sans-serif;">INVOLVEMENT WITH MAKE A WISH WILL SERIOUSLY BRING TEARS TO YOUR EYES<span style="font-family: "corbel" , sans-serif;">! </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "corbel" , sans-serif;"><span style="font-size: 10pt; line-height: 115%;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;">AFTER SOME BR<span style="font-family: "corbel" , sans-serif;">I<span style="font-family: "corbel" , sans-serif;">E<span style="font-family: "corbel" , sans-serif;">F INTRODUCTIONS WE WERE WHISKED OFF ON A <span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;">T</span>OUR OF THE MAKE-A-WISH</span></span></span></span></span></span></span></span></span></span></span></span></span> SALT LAKE CITY LOCATION. IT'S ABSOLUTELY <span style="font-family: "corbel" , sans-serif;">BEAUTIFUL</span>! THE LAND AND THE BUILDING WERE DONATED BY LOCAL BUSINESSES <span style="font-family: "corbel" , sans-serif;">IN OUR AREA! OUTSIDE IS BEAUTIFULLY LANDSCAPED WITH THIS SPECIAL WISHING POND. A PLACE WE CAN ALWAYS COME BACK TO FOR A LITTLE PEA<span style="font-family: "corbel" , sans-serif;">CE. THEY'VE EVEN INVITED US TO HOST HER NEXT BIRTHDAY PARTY THERE! <span style="font-family: "corbel" , sans-serif;">I'M TELLING YOU, <span style="font-family: "corbel" , sans-serif;">THEY VERY MUCH OPERATE AN<span style="font-family: "corbel" , sans-serif;"> OPEN DOOR POLICY THERE! </span></span></span></span></span></span></span></span></span></span></span></span> </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><o:p></o:p></span></span></div>
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<span style="font-family: "corbel" , sans-serif;"><span style="font-size: 10pt; line-height: 115%;"></span></span><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVxGKskKinIua9WgJPc-8rcNKr8JoyU2FmtPEaNpTBEt4QJNNLPfoHAagxhrAowtZnf_Fal5S0Us5f6rdhj5ktonScXhEmkneJgxraJWToXGeNfpOnmPGXq2JLkcRxrGNFZRXNXay5k6_J/s640/blogger-image-1396440176.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVxGKskKinIua9WgJPc-8rcNKr8JoyU2FmtPEaNpTBEt4QJNNLPfoHAagxhrAowtZnf_Fal5S0Us5f6rdhj5ktonScXhEmkneJgxraJWToXGeNfpOnmPGXq2JLkcRxrGNFZRXNXay5k6_J/s320/blogger-image-1396440176.jpg" width="240" /></a></div>
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<span style="font-family: "corbel" , sans-serif;"><span style="font-size: 10pt; line-height: 115%;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;">AFTER OUR TOUR WE HEAD UP<span style="font-family: "corbel" , sans-serif;"> TO THE WISHING TO<span style="font-family: "corbel" , sans-serif;">WER<span style="font-family: "corbel" , sans-serif;">! WE DIDN'T WANT R<span style="font-family: "corbel" , sans-serif;">YLIE'S WISH TO BECOME OUR WISH SO WE TRIED TO REALLY TAKE A STEP BACK AND LET THEM WORK THERE MAGIC. SHE<span style="font-family: "corbel" , sans-serif;">'S ONLY THREE AND AT THIS <span style="font-family: "corbel" , sans-serif;">POINT <span style="font-family: "corbel" , sans-serif;">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<span style="font-family: "corbel" , sans-serif;">, RAN<span style="font-family: "corbel" , sans-serif;"> AROUND, ATE SOME CANDY, AND GIGGLED A LOT. WITHIN ABOUT 20 MINUTES <span style="font-family: "corbel" , sans-serif;">IT WAS LIKE SHE HAD KNOWN THEM FOREVER. SO, THEY MOVED INTO THE INTERVIEW PROCESS. ASKING HER QUESTIONS THAT WOUL<span style="font-family: "corbel" , sans-serif;">D HELP THEM FIGURE OUT THE<span style="font-family: "corbel" , sans-serif;"> PERFECT WISH - - - HER FAVORITE COLOR, HER FAVORITE ANIMAL, HER FAVORITE TREAT. HER ANSWERS WERE SO CUTE AND SO VERY TELLING<span style="font-family: "corbel" , sans-serif;">! AFTER A LITTLE BIT OF THE INTERVIEW PROCESS THE<span style="font-family: "corbel" , sans-serif;"> QUESTIONS SEEMED TO BE REALLY STUMPING HER SO THEY PULLED OUT SOME FLASH CARDS. A HUGE PLAYGROUN<span style="font-family: "corbel" , sans-serif;">D, A<span style="font-family: "corbel" , sans-serif;"> PRINCESS BED, A HORSE (THIS IS WHERE DADDY AND MOMMY START GETTING <span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;">NERVOUS</span>- VISION OF A HORSE IN THE BACK Y<span style="font-family: "corbel" , sans-serif;">AR<span style="font-family: "corbel" , sans-serif;">D</span> WERE DANCING IN OUR HEADS), A BEACH, AND THE MICKEY MOUSE CLUB HOUSE GANG. THEY WENT THROUGH EACH PICTURE WITH HER AN<span style="font-family: "corbel" , sans-serif;">D TALKED TO HER ABOUT WH<span style="font-family: "corbel" , sans-serif;">AT EACH PICTURE MEANT. I WISH YOU COULD HAVE SEEN HER REACTION WHEN THEY SHOWED HER THE MIC<span style="font-family: "corbel" , sans-serif;">KEY MOUSE CLUBHOUSE GAN<span style="font-family: "corbel" , sans-serif;">G! SHE WAS SO EXCITED<span style="font-family: "corbel" , sans-serif;">! SHE GRABBED THE PICTURE AND <span style="font-family: "corbel" , sans-serif;">CLUNG ONTO IT FOR SEVERAL MINUTES<span style="font-family: "corbel" , sans-serif;">. WHEN OUR WISH GRANTERS ASKED HER I<span style="font-family: "corbel" , sans-serif;">F SHE WANTED TO MEET MINNIE MOUSE SHE EXCLA<span style="font-family: "corbel" , sans-serif;">I<span style="font-family: "corbel" , sans-serif;">M</span>ED " SHE<span style="font-family: "corbel" , sans-serif;">'S ONLY ON TV<span style="font-family: "corbel" , sans-serif;">!" WE ALL HAD A GOO<span style="font-family: "corbel" , sans-serif;">D LITTLE LAUGH, FOR HER MINNIE MOUSE IS <span style="font-family: "corbel" , sans-serif;">ON TV, THE THOUGHT SHE COUL<span style="font-family: "corbel" , sans-serif;">D ACTUALLY BE REAL AND GO AND MEET HER SEEMED TO COMPLETELY BEWILDER HER. SHE WENT ALON<span style="font-family: "corbel" , sans-serif;">G WITH US, BUT YOU COULD TELL <span style="font-family: "corbel" , sans-serif;">SHE THOUGHT WE WERE ALL A LITTLE CRAZY.... <span style="font-family: "corbel" , sans-serif;">AFTER WE SENT OFF <span style="font-family: "corbel" , sans-serif;">RY'S WISH WE HEADED DOWN STAIRS FOR SOME PAPERWORK AND OF COURSE SOME MORE TREATS. </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "corbel" , sans-serif;"><span style="font-size: 10pt; line-height: 115%;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;">AFTER WE SENT OFF <span style="font-family: "corbel" , sans-serif;">RY'S WISH WE HEADED DOWN STAIRS FOR SOME PAPERWORK AND OF COURSE SOME MORE TREATS. WHILE MOMMY AND DADDY GE<span style="font-family: "corbel" , sans-serif;">T THE LEGAL/MEDICAL STUFF OUT OF THE WAY. THE <span style="font-family: "corbel" , sans-serif;">GIRLS <span style="font-family: "corbel" , sans-serif;">ENTERTAINED</span> RYLIE WISH SOME MORE GIFTS AND SOME <span style="font-family: "corbel" , sans-serif;">ROOT BEER FLOATS. BY THE TIME WE LEFT THAT EVENING RYLIE WAS CRYING WHEN WE TOL<span style="font-family: "corbel" , sans-serif;">D HER IT WAS TIME TO GO HOME... </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></div>
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<span style="font-family: "corbel" , sans-serif;"><span style="font-size: 10pt; line-height: 115%;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;">SO, HER WISH HA<span style="font-family: "corbel" , sans-serif;">S BEEN GRANTED<span style="font-family: "corbel" , sans-serif;"><span style="font-family: "corbel" , sans-serif;">!!!!!!!!!!!!! DISNEY WORLD HERE WE COME!!!!!! </span>WE HEAD OFF TO ORLANDO IN LATE JANUARY FOR A WEEK OF PURE MAGIC! WE<span style="font-family: "corbel" , sans-serif;"> ARE ALL GETTIN<span style="font-family: "corbel" , sans-serif;">G REALLY EXCITED AND CAN'T WAIT TO MAKE SOME AMAZING MEMORIES! STAY TUN<span style="font-family: "corbel" , sans-serif;">ED FOR LOTS OF P<span style="font-family: "corbel" , sans-serif;">ICTURES<span style="font-family: "corbel" , sans-serif;">! </span></span></span></span></span></span></span></span></span> </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></div>
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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<span style="font-family: "corbel" , sans-serif;"> DAY, ONE DAY WE WILL FIND A C<span style="font-family: "corbel" , sans-serif;">URE! </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></div>
Anonymoushttp://www.blogger.com/profile/00163471267380896406noreply@blogger.com0tag:blogger.com,1999:blog-103481517630554669.post-76430582030320254512015-11-08T15:19:00.000-07:002015-11-08T15:19:09.322-07:00Genetic Testing<div class="MsoNormal">
<span style="font-family: "corbel" , "sans-serif"; font-size: 10.0pt; line-height: 115%;">AFTER THE INITIAL NEUROFIBROMATOSIS DIAGNOSIS THREE
YEARS AGO DR. VISKOCHIL, LADYBUG</span><span style="font-family: "corbel" , "sans-serif"; font-size: 10.0pt; line-height: 115%; mso-bidi-font-family: "Times New Roman";">’</span><span style="font-family: "corbel" , "sans-serif"; font-size: 10.0pt; line-height: 115%;">S
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 WASN</span><span style="font-family: "corbel" , "sans-serif"; font-size: 10.0pt; line-height: 115%; mso-bidi-font-family: "Times New Roman";">’</span><span style="font-family: "corbel" , "sans-serif"; font-size: 10.0pt; line-height: 115%;">T
GOING TO TELL US ANY DIFFERENT. AS TIME WENT ON RYLIE</span><span style="font-family: "corbel" , "sans-serif"; font-size: 10.0pt; line-height: 115%; mso-bidi-font-family: "Times New Roman";">’</span><span style="font-family: "corbel" , "sans-serif"; font-size: 10.0pt; line-height: 115%;">S 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 <b>CAN BE</b>
INHERITED FROM A FAMILY MEMBER <b><i><u>OR </u></i></b>DEVELOP FROM A SPONTANEOUS
MUTATION; OUR MEDICAL TEAM TENDS TO BELIEVE LADYBUG</span><span style="font-family: "corbel" , "sans-serif"; font-size: 10.0pt; line-height: 115%; mso-bidi-font-family: "Times New Roman";">’</span><span style="font-family: "corbel" , "sans-serif"; font-size: 10.0pt; line-height: 115%;">S CASE IS STRICTLY A
SPONTANEOUS MUTATION... JUST RANDOM LUCK… YAHOO! SEND US TO VEGAS! <o:p></o:p></span></div>
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<span style="font-family: "corbel" , "sans-serif"; font-size: 10.0pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "corbel" , "sans-serif"; font-size: 10.0pt; line-height: 115%;">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 <b>WHEN</b> 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 LADYBUG</span><span style="font-family: "corbel" , "sans-serif"; font-size: 10.0pt; line-height: 115%; mso-bidi-font-family: "Times New Roman";">’</span><span style="font-family: "corbel" , "sans-serif"; font-size: 10.0pt; line-height: 115%;">S 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. <o:p></o:p></span></div>
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<span style="font-family: "corbel" , "sans-serif"; font-size: 10.0pt; line-height: 115%;">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</span><span style="font-family: "corbel" , "sans-serif"; font-size: 10.0pt; line-height: 115%; mso-bidi-font-family: "Times New Roman";"> I</span><span style="font-family: "corbel" , "sans-serif"; font-size: 10.0pt; line-height: 115%;">S 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 </span><span style="font-family: "corbel" , "sans-serif"; font-size: 10.0pt; line-height: 115%; mso-bidi-font-family: "Times New Roman";">–</span><span style="font-family: "corbel" , "sans-serif"; font-size: 10.0pt; line-height: 115%;"> 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</span><span style="font-family: "corbel" , "sans-serif"; font-size: 10.0pt; line-height: 115%; mso-bidi-font-family: "Times New Roman";"> HAVE</span><span style="font-family: "corbel" , sans-serif;"><span style="font-size: 10pt; line-height: 115%;"> 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 </span><span style="font-size: 13.3333px; line-height: 15.3333px;">PREPARED</span><span style="font-size: 10pt; line-height: 115%;"> TO NOT ONLY HEAR THE RESULTS
BUT LIVE WITH THEM AS WELL. <o:p></o:p></span></span></div>
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<span style="font-family: "corbel" , sans-serif;"><span style="font-size: 10pt; line-height: 115%;">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 </span></span><u style="font-family: Corbel, sans-serif; font-size: 10pt; line-height: 115%;">WHEN</u><span style="font-family: "corbel" , sans-serif;"><span style="font-size: 10pt; line-height: 115%;"> 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 </span><span style="font-size: 13.3333px; line-height: 15.3333px;">STRESS</span><span style="font-size: 10pt; line-height: 115%;"> AND CRAZINESS </span><span style="font-size: 13.3333px; line-height: 15.3333px;">ENSUED</span><span style="font-size: 10pt; line-height: 115%;">. 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 </span></span><b style="font-family: Corbel, sans-serif; font-size: 10pt; line-height: 115%;">EVERY SINGLE ASPECT</b><span style="font-family: "corbel" , sans-serif;"><span style="font-size: 10pt; line-height: 115%;"> OF YOUR LIFE. DREAMS
YOU HAD CHANGE, PLANS FOR THE FUTURE CHANGE AND IT TAKES TIME TO ADJUST TO ALL
OF THOSE CHANGES. <o:p></o:p></span></span></div>
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<span style="font-family: "corbel" , sans-serif;"><span style="font-size: 10pt; line-height: 115%;">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 </span></span><i style="font-family: Corbel, sans-serif; font-size: 10pt; line-height: 115%;">DREAM </i><span style="font-family: "corbel" , sans-serif;"><span style="font-size: 10pt; line-height: 115%;">PREGNANCY JUST DOES NOT SEEM TO </span><span style="font-size: 13.3333px; line-height: 15.3333px;">EXIST</span><span style="font-size: 10pt; line-height: 115%;">. 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. <o:p></o:p></span></span></div>
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<span style="font-family: "corbel" , sans-serif;"><span style="font-size: 10pt; line-height: 115%;">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 </span><span style="font-size: 13.3333px; line-height: 15.3333px;">DESTROYED</span><span style="font-size: 10pt; line-height: 115%;"> 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. </span></span><br />
<br />
<span style="font-family: "corbel" , sans-serif;"><span style="font-size: 10pt; line-height: 115%;"></span></span><br />
<span style="font-family: "corbel" , sans-serif;"><span style="font-size: 10pt; line-height: 115%;"><o:p></o:p></span></span></div>
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<span style="font-family: "corbel" , sans-serif;"><span style="font-size: 10pt; line-height: 115%;">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 </span><span style="font-size: 13.3333px; line-height: 15.3333px;">A LOT</span><span style="font-size: 10pt; line-height: 115%;"> 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 </span></span><u style="font-family: Corbel, sans-serif; font-size: 10pt; line-height: 115%;">NEVER </u><span style="font-family: "corbel" , sans-serif;"><span style="font-size: 10pt; line-height: 115%;">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. <o:p></o:p></span></span></div>
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<span style="font-family: "corbel" , sans-serif;"><span style="font-size: 10pt; line-height: 115%;">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% </span><span style="font-size: 13.3333px; line-height: 15.3333px;">CERTAINLY</span><span style="font-size: 10pt; line-height: 115%;"> THAT RYLIE’S
CASE WAS STRICTLY </span><span style="font-size: 13.3333px; line-height: 15.3333px;">SPONTANEOUS</span><span style="font-size: 10pt; line-height: 115%;">. <o:p></o:p></span></span></div>
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<span style="font-family: "corbel" , "sans-serif"; font-size: 10.0pt; line-height: 115%;">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. </span></div>
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<span style="font-family: "corbel" , "sans-serif"; font-size: 10.0pt; line-height: 115%;">AND... JUST BECAUSE SHE'S CUTE... PICTURES! </span></div>
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Anonymoushttp://www.blogger.com/profile/00163471267380896406noreply@blogger.com0tag:blogger.com,1999:blog-103481517630554669.post-892143088827407572015-10-26T13:29:00.001-06:002015-10-26T13:30:22.504-06:00Scanxiety<!--[if gte mso 9]><xml>
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<span style="font-family: "Blue Highway D Type"; font-size: small;">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. She</span><span style="font-family: "Times New Roman","serif"; font-size: small;">’</span><span style="font-family: "Blue Highway D Type"; font-size: small;">s 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. I</span><span style="font-family: "Times New Roman","serif"; font-size: small;">’</span><span style="font-family: "Blue Highway D Type"; font-size: small;">ll 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. She</span><span style="font-family: "Times New Roman","serif"; font-size: small;">’</span><span style="font-family: "Blue Highway D Type"; font-size: small;">s really soaking in every second of
her toddler days. She</span><span style="font-family: "Times New Roman","serif"; font-size: small;">’</span><span style="font-family: "Blue Highway D Type"; font-size: small;">s going to be graduating high school
before I know it! </span></div>
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<span style="font-size: small;"><br /></span></div>
<br />
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<span style="font-family: "Blue Highway D Type"; font-size: small;">Time has
flown by and before we know it we</span><span style="font-family: "Times New Roman","serif"; font-size: small;">’</span><span style="font-family: "Blue Highway D Type"; font-size: small;">ve approached ladybug</span><span style="font-family: "Times New Roman","serif"; font-size: small;">’</span><span style="font-family: "Blue Highway D Type"; font-size: small;">s six month post chemo scans and I</span><span style="font-family: "Times New Roman","serif"; font-size: small;">’</span><span style="font-family: "Blue Highway D Type"; font-size: small;">m not going to lie we</span><span style="font-family: "Times New Roman","serif"; font-size: small;">’</span><span style="font-family: "Blue Highway D Type"; font-size: small;">re
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! </span></div>
Anonymoushttp://www.blogger.com/profile/00163471267380896406noreply@blogger.com0tag:blogger.com,1999:blog-103481517630554669.post-23224587473216830162015-08-16T12:24:00.000-06:002015-08-16T12:24:24.353-06:00Ophthalmology<!--[if gte mso 9]><xml>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvuodhn3tXPhpX2LMNGJzerzwSqF_mLqlYO8UYsnFXKrqPZXfRNMbXZ5MKxcDFCDmhUpAkbYLGWsjNNfYtD-M8LA5pBSX1u8lyW0rgClrOYKkszPyfYkVjVwN8iqVQVHmWUsc9Uv7SGyMJ/s640/blogger-image-192301198.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvuodhn3tXPhpX2LMNGJzerzwSqF_mLqlYO8UYsnFXKrqPZXfRNMbXZ5MKxcDFCDmhUpAkbYLGWsjNNfYtD-M8LA5pBSX1u8lyW0rgClrOYKkszPyfYkVjVwN8iqVQVHmWUsc9Uv7SGyMJ/s200/blogger-image-192301198.jpg" width="200" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBNkqd00sVXI0fBR-_trqxB4v3JF94ByF6QpcJofs08bXpWgyyBJDhWlOuPpPoDxClbJ8J5WrbgqhVxBXtAvUPH9_j8ob06nxBrlLHcyWCVu-GywiL_YYB2ZHgqXp4vCPMMtjhvgembyqe/s640/blogger-image-2041105988.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBNkqd00sVXI0fBR-_trqxB4v3JF94ByF6QpcJofs08bXpWgyyBJDhWlOuPpPoDxClbJ8J5WrbgqhVxBXtAvUPH9_j8ob06nxBrlLHcyWCVu-GywiL_YYB2ZHgqXp4vCPMMtjhvgembyqe/s200/blogger-image-2041105988.jpg" width="200" /></a></div>
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<span style="font-family: "Corbel","sans-serif";"></span></div>
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<span style="font-family: "Corbel","sans-serif";">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 </span></div>
<div class="MsoNormal">
<span style="font-family: "Corbel","sans-serif";"> APPOINTMENT…. THE EAR
INFECTION AND NEW SET OF ANTIBIOTICS SURELY DID NOT HELP MATTERS! </span></div>
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<b style="mso-bidi-font-weight: normal;"><u><span style="font-family: "Corbel","sans-serif";">GOOD NEWS!</span></u></b><span style="font-family: "Corbel","sans-serif";"> 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)!</span></div>
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<br /></div>
<div class="MsoNormal">
<span style="font-family: "Corbel","sans-serif";">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. </span></div>
<div class="MsoNormal">
<span style="font-family: "Corbel","sans-serif";">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! </span></div>
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<span style="font-family: "Corbel","sans-serif";">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! </span><span style="font-family: "Corbel","sans-serif";"> </span></div>
Anonymoushttp://www.blogger.com/profile/00163471267380896406noreply@blogger.com0tag:blogger.com,1999:blog-103481517630554669.post-87194380592909642182015-08-06T20:46:00.001-06:002015-08-06T20:46:51.614-06:003 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! <div><br></div><div>RYLIE STARTED DANCE! </div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOU4XQN0y9I-7jXILkS9XVh29QC8rG1etFGQQEVeHQ2IQE1IMUlGBQ2AXQSUmYn2fiabFZO8Q4nvZP-alGiG41eA0HOkH1B9ysrgiIcWgWpOHy77GwG6Qc3cuNfo5OMUa3J18wYyAoVbie/s640/blogger-image-1806565592.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOU4XQN0y9I-7jXILkS9XVh29QC8rG1etFGQQEVeHQ2IQE1IMUlGBQ2AXQSUmYn2fiabFZO8Q4nvZP-alGiG41eA0HOkH1B9ysrgiIcWgWpOHy77GwG6Qc3cuNfo5OMUa3J18wYyAoVbie/s640/blogger-image-1806565592.jpg"></a></div></div><div><br></div><div>WE'VE PLAYED AND PLAYED AND PLAYED WITH FAMILY AND FRIENDS! </div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwWWY7LWhCcwiPly_qpnR8Sak74TGDnE9HNtqCoZWxmw41uc1Sbt-LrInmJI5xjqd5eaB1bUXn0ySCJeprj1ukAxDigBTtpI3nBDLKtwBa29wcENOXtmJ6i-6R0rJg8fruuzRvdDKYx1GI/s640/blogger-image-776691383.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwWWY7LWhCcwiPly_qpnR8Sak74TGDnE9HNtqCoZWxmw41uc1Sbt-LrInmJI5xjqd5eaB1bUXn0ySCJeprj1ukAxDigBTtpI3nBDLKtwBa29wcENOXtmJ6i-6R0rJg8fruuzRvdDKYx1GI/s640/blogger-image-776691383.jpg"></a></div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLEOTWhQR4nNk6l6ujl-eAUvL1mwPoVVv3tOoxai5APlPyWhHQ2wzzv53WRNTcu7ZAP0kYNUsKsuD9EMhRHFIXkGsWDwfZcQM5B_i1cNvtEB0cli_ux-HwgBzbA8HR_080ArOHOsOhu4Jo/s640/blogger-image--1082376988.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLEOTWhQR4nNk6l6ujl-eAUvL1mwPoVVv3tOoxai5APlPyWhHQ2wzzv53WRNTcu7ZAP0kYNUsKsuD9EMhRHFIXkGsWDwfZcQM5B_i1cNvtEB0cli_ux-HwgBzbA8HR_080ArOHOsOhu4Jo/s640/blogger-image--1082376988.jpg"></a></div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAlfJchK5HrHbn4msoUbo6yIP6TbYG5hovrFKJygNQvAGk3ieNsRnjbc1ervjE0ZXoxEquxumF_47eHHA29jOX0C4wjrO5qCbGf1wSL2AJyYYPKfCeJa1ecZujNm0vr3JLjjPY-Q2pJdf1/s640/blogger-image--504413881.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAlfJchK5HrHbn4msoUbo6yIP6TbYG5hovrFKJygNQvAGk3ieNsRnjbc1ervjE0ZXoxEquxumF_47eHHA29jOX0C4wjrO5qCbGf1wSL2AJyYYPKfCeJa1ecZujNm0vr3JLjjPY-Q2pJdf1/s640/blogger-image--504413881.jpg"></a></div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZWcvyZjsYgskIUZe71oZSQJiAR0pHFL1_D-ttjiydTDF0YEf1x0JZ_iexJkj-nv0rGzJgp0fNCN3JOffYy01TpeO5b5Li_tZ0tJGaRX3eEN-FFdO2L6wrhCG5YrrXwmXGwVxxwnyX2k9L/s640/blogger-image-2139393582.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZWcvyZjsYgskIUZe71oZSQJiAR0pHFL1_D-ttjiydTDF0YEf1x0JZ_iexJkj-nv0rGzJgp0fNCN3JOffYy01TpeO5b5Li_tZ0tJGaRX3eEN-FFdO2L6wrhCG5YrrXwmXGwVxxwnyX2k9L/s640/blogger-image-2139393582.jpg"></a></div><br></div><div>AND... THE BEST NEWS OF ALL...WE FINALLY FINISHED OFF THE LAST OF HER PRESCRIPTIONS! WE ARE OFFICIALLY CHEMO FREE! </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSOExuddmwmma88VahCDSk44bQJBIYB4fLC_Jy6SOfTomhnEGJLHyYVvFgns_JwLVJAMvLjeoEPbEg5PiZtX0b-Cx4gJixi53I65mcRm7bROwOUTnOKjZSWkFPD-uY1rTpshHifTO5eCbS/s640/blogger-image-1192544718.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSOExuddmwmma88VahCDSk44bQJBIYB4fLC_Jy6SOfTomhnEGJLHyYVvFgns_JwLVJAMvLjeoEPbEg5PiZtX0b-Cx4gJixi53I65mcRm7bROwOUTnOKjZSWkFPD-uY1rTpshHifTO5eCbS/s640/blogger-image-1192544718.jpg"></a></div><br></div><div><br></div><div>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. </div><div><br></div><div>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 <b>KNOW</b> 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. </div><div><br></div><div>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. </div><div><br></div><div>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. <span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">CROSS YOUR FINGERS AND TOES. SAY A FEW PRAYERS. AND SEND ALL THE POSITIVE THOUGHTS YOU HAVE OUR WAY! </span></div>Anonymoushttp://www.blogger.com/profile/00163471267380896406noreply@blogger.com0tag:blogger.com,1999:blog-103481517630554669.post-26509775696856770342015-05-07T16:21:00.000-06:002015-05-07T16:39:45.787-06:00Throw Back Thursday<!--[if gte mso 9]><xml>
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<![endif]--><span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: x-small;">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. </span></span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: x-small;">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 <i><b>ONCOLOGY</b></i> 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. </span></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: x-small;">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! </span></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: x-small;">TODAY IS NOT ABOUT TEARS AND SADNESS. <b>YES, THIS YEAR HAS SUCKED!</b> 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. <b>BUT</b>, 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! </span></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: x-small;">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! </span></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: x-small;">HAPPY END OF CHEMO LADYBUG!</span></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: x-small;"> <a href="https://www.facebook.com/theladybuggangnf">Check out LadyBug's 1 year chemo journey here! </a></span></span></div>
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Anonymoushttp://www.blogger.com/profile/00163471267380896406noreply@blogger.com0tag:blogger.com,1999:blog-103481517630554669.post-18126451589280026412015-04-30T12:22:00.001-06:002015-04-30T12:28:15.620-06:002015 NF Forum and Leadership Summit<div style="text-align: center;">
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<span style="font-family: "Corbel","sans-serif";">NF FORUM AND LEADERSHIP SUMMIT</span></div>
<div style="text-align: center;">
<span style="font-family: "Corbel","sans-serif";">SCOTTSDALE, ARIZONA</span></div>
<div style="text-align: center;">
<span style="font-family: "Corbel","sans-serif";">APRIL 15-19, 2015</span></div>
<div style="text-align: center;">
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dy1gKQyNc8iKeN15gjEiluuskZ6Gs3VEfXKRU5m5Z5GUxjP7tK43sN2CMsInorchUhB8GTwSUJ9ORE2pFiZ' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div>
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<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span style="font-family: "Corbel","sans-serif";"><i>"WE ALL FACE CHALLENGES. IT'S NOT THE CHALLENGES BUT RATHER YOUR RESPONSE TO THE CHALLENGE THAT DEFINES YOU. CHOOSE YOUR RESPONSE CAREFULLY."</i> </span></div>
<span style="font-family: "Corbel","sans-serif";"><br /></span></div>
Anonymoushttp://www.blogger.com/profile/00163471267380896406noreply@blogger.com0tag:blogger.com,1999:blog-103481517630554669.post-70651334929314816612015-04-30T10:48:00.002-06:002015-04-30T10:48:43.505-06:0015 Truths...<!--[if gte mso 9]><xml>
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<span style="font-family: "Corbel","sans-serif";">LAST NIGHT SOME DEAR
FRIENDS SENT ME A LINK TO AN ARTICLE- <a href="http://acancermomslife.com/2015/04/25/15-truths-of-having-your-child-diagnosed-with-cancer/">15 TRUTHS TO HAVING YOUR CHILD DIAGNOSED WITH CANCER</a>. 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. <b>WHY... BECAUSE</b><span style="mso-spacerun: yes;"><b> CANCER SUCKS! NF SUCKS! HELL, TUMORS IN GENERAL SUCK! </b>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. </span></span><br />
<br />
<span style="font-family: "Corbel","sans-serif";"><span style="mso-spacerun: yes;">LOVE AND PRAYERS TO ALL OF OUR CHEMO BUDDIES! </span></span></div>
Anonymoushttp://www.blogger.com/profile/00163471267380896406noreply@blogger.com0tag:blogger.com,1999:blog-103481517630554669.post-61256956220705534612015-04-30T10:36:00.000-06:002015-05-17T20:23:43.818-06:00May is NF Awareness Month!<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;"><span style="font-family: Corbel, sans-serif;">MAY 17TH IS WORLD NF AWARENESS DAY! HELP US FIND A CURE FOR THE 2 MILLION PEOPLE SUFFERING WORLD WIDE. </span></div><div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;"><span style="font-family: "Corbel","sans-serif";"><span style="mso-spacerun: yes;"><br></span></span></div><div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;"><span style="font-family: "Corbel","sans-serif";"><span style="mso-spacerun: yes;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhw4QR_lG9NOHwhcv0W75byyKg47QvIoi8Dpv1q86psYOyobA1q0VEZ85km81GjvKb1LMxKBYxcTiA18_XqYzOrHeB-gGXCzEaLQFuU09olp0pYfemqJ2q8g8psGusWr_H96TFeZxIuOr8g/s640/blogger-image-44596399.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhw4QR_lG9NOHwhcv0W75byyKg47QvIoi8Dpv1q86psYOyobA1q0VEZ85km81GjvKb1LMxKBYxcTiA18_XqYzOrHeB-gGXCzEaLQFuU09olp0pYfemqJ2q8g8psGusWr_H96TFeZxIuOr8g/s640/blogger-image-44596399.jpg"></a></div><br></span></span></div><div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;"><span style="font-family: "Corbel","sans-serif";"><span style="mso-spacerun: yes;"><br></span></span></div><div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;"><span style="font-family: "Corbel","sans-serif";"><span style="mso-spacerun: yes;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfe-LrgvpMVzIwCh57SAuOS_lq9QLP9NH0D5rD5MzBevAlY-hMaA9lrs_4F9sD2G3_5U44oOpUPxU2tIn4GWAaFS5YGRj3d0a3E9qTbsKmW-L3_z4Pr5cN6vT4-2Kso-tD4a-5D53DKCVO/s640/blogger-image--424972194.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfe-LrgvpMVzIwCh57SAuOS_lq9QLP9NH0D5rD5MzBevAlY-hMaA9lrs_4F9sD2G3_5U44oOpUPxU2tIn4GWAaFS5YGRj3d0a3E9qTbsKmW-L3_z4Pr5cN6vT4-2Kso-tD4a-5D53DKCVO/s640/blogger-image--424972194.jpg"></a></div><br></span></span></div>
Anonymoushttp://www.blogger.com/profile/00163471267380896406noreply@blogger.com0tag:blogger.com,1999:blog-103481517630554669.post-15101389691833171062015-04-09T16:04:00.004-06:002015-04-09T16:04:56.595-06:00What's Next? <!--[if gte mso 9]><xml>
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Anonymoushttp://www.blogger.com/profile/00163471267380896406noreply@blogger.com0tag:blogger.com,1999:blog-103481517630554669.post-56832532809535789192015-04-09T15:41:00.000-06:002015-04-09T15:44:09.258-06:00Chemotherapy- Round 12! <!--[if gte mso 9]><xml>
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<span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;">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! </span></div>
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<span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;">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 <i>COMPLETING</i>
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…</span></div>
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<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dz8y5TS5zNX0RqgOGNAC4_4Yg4o_NkQjd5hhSNyi0me4FYcBM1m5-ASm2pErYsoydIjx8w0X0ENQyEZTpfR' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div>
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<span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;"><span style="mso-spacerun: yes;"> </span>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! </span></div>
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<span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;"><span style="font-size: xx-small;"><i><span style="color: red;">WARNING! GRAB YOUR TISSUES!</span></i></span> </span></div>
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dxXHdZXC5FZW2Np29nStog6sgarUSrdYrCc2lGDrLDvWkT45Y44SmcmkyVqb-DH2pzXcQkw-XK7-DakpAfWMQ' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div>
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<span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;">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! </span></div>
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<span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;">TO OUR FAMILY, THANK YOU ALL FOR YOUR LOVE AND SUPPORT. WE LOVE YOU ALL SO MUCH! </span></div>
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<span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;">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… </span></div>
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<span style="color: #e06666;"><i><b><span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;">“SOME PEOPLE NEVER GET TO MEET THEIR HERO, WE GET TO
RAISE OURS!” </span></b></i></span></div>
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<span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;">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! </span></div>
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Anonymoushttp://www.blogger.com/profile/00163471267380896406noreply@blogger.com0tag:blogger.com,1999:blog-103481517630554669.post-17889673027103177912015-04-03T09:46:00.000-06:002015-04-03T09:51:10.013-06:00Almost There.<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiy1SK2vFiMrip8HdqyQFDYGpl8bZTiUpj2TIS6IqTTAsbeaJ8xwDNxayVONy5cD04CWPbREgPOaCznX2KwE6Gzu2bMoTMoDrw4RpBgRbQl8Fi3WSrlhBzPn3qJZpjqaaT-S-dvmSMTKBH/s1600/10425369_1429569557305451_2260775621856146948_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiy1SK2vFiMrip8HdqyQFDYGpl8bZTiUpj2TIS6IqTTAsbeaJ8xwDNxayVONy5cD04CWPbREgPOaCznX2KwE6Gzu2bMoTMoDrw4RpBgRbQl8Fi3WSrlhBzPn3qJZpjqaaT-S-dvmSMTKBH/s1600/10425369_1429569557305451_2260775621856146948_n.jpg" height="320" width="320" /></a></div>
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<span style="font-size: x-small;"><span style="font-family: Verdana,sans-serif;">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: <a href="https://www.facebook.com/momcologyorg/photos/a.537557112964045.1073741826.424422260944198/813766412009779/?type=1&theater">STRENGTH OF AN EGG</a>)</span></span></div>
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<span style="font-size: x-small;"><span style="font-family: Verdana,sans-serif;">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 <u>NEVER
</u>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! </span></span></div>
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<span style="font-size: x-small;"><span style="font-family: Verdana,sans-serif;">SO, THIS WEEKEND IS ABOUT CELEBRATING! CELEBRATING <b>EVERY- SINGLE -VICTORY</b> 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! </span></span></div>
Anonymoushttp://www.blogger.com/profile/00163471267380896406noreply@blogger.com0tag:blogger.com,1999:blog-103481517630554669.post-36922150599280216752015-03-26T13:32:00.003-06:002015-03-26T13:32:25.502-06:00What a week...<div class="MsoNormal">
<span style="font-family: "Corbel","sans-serif";">WHAT A MONTH!
AFTER A PRETTY TOUGH ROUND OF CHEMO WE WERE A LITTLE ANXIOUS ABOUT LOCK DOWN
THIS GO ROUND. WELL, LAST WEEK LOCK DOWN CAME AND WENT. NO MAJOR PROBLEMS, NO ILLNESSES, AND NO TUMMY TROUBLES. WE THOUGHT WE WERE IN THE CLEAR… SMOOTH SAILING FOR THE REST
OF THE MONTH….. YEP, ASSUMING NEVER PAYS OFF FOR US! </span></div>
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<span style="font-family: "Corbel","sans-serif";">THINGS TOOK
A NICE LITTLE TURN THIS WEEKEND PROVING THAT EVEN WHEN YOU THINK YOU HAVE THIS
WHOLE "CHEMO" THING UNDER CONTROL EVERYTHING CAN CHANGE IN AN INSTANT! WE’VE BEEN
WORKING WITH LADYBUG ON POTTY TRAINING A LITTLE BIT- NOTHING SET IN STONE JUST
GETTING HER USE TO THE IDEA. SATURDAY SHE SEEMED TO REALLY GET EXCITED ABOUT
THINGS, WE HAD A COUPLE ACCIDENTS BUT SHE WAS DOING GREAT! SUNDAY HOWEVER,
SEEMED TO BE AN ENTIRELY DIFFERENT STORY. FROM THE MOMENT SHE WOKE UP SHE WAS
MISERABLE. SHE WOULDN’T GO TO THE BATHROOM. NOT ON HER POTTY, NOT IN THE TOILET,
AND NOT IN HER DIAPER. WE WENT ALL DAY… HER HOLDING IT UNTIL SHE LITERALLY
COULDN’T ANYMORE AND THEN AS YOU GUESSED IT WE WOULD HAVE A MASSIVE MESS TO
CLEAN UP. SHE JUST KEPT CRYING, TELLING US SHE HAD TO GO POTTY BUT SHE COULDN’T.
WE WERE A LITTLER PERPLEXED BUT CHALKED IT UP TO HER NOT BEING READY TO BE
POTTY TRAINED. WE THOUGHT WE’D GIVE IT ANOTHER GO MONDAY AND SEE WHERE THE DAY
TOOK US… WELL THE DAY TOOK US RIGHT INTO PRIMARY CHILDREN’S. WE AGAIN WENT
THROUGH THE SAME SONG AND DANCE… SHE WOULDN’T GO POTTY. INSTEAD SHE SPENT THE
DAY CRYING AND WHIMPERING IN PAIN. WHEN WE GOT HOME THAT NIGHT WE ATTEMPTED
SOME MORE FLUIDS AND A LAXATIVE TO SEE IF THAT WOULD HELP… NOTHING! BY 8PM SHE
WAS IN SO MUCH PAIN SHE JUST CRIED AND CRIED. OUR MAIN CONCERN BECAME THE
POSSIBILITY THAT SHE HAD A UTI. SO, WE GAVE ONCOLOGY A CALL AND ASKED FOR SOME
HELP. THEY WERE CONCERNED ABOUT THE SAME THING, OR PREVENTING A UTI IF THAT’S
WHERE WE WERE HEADED, SO THEY ASKED US TO COME IN. SO, AT 8PM WE LOADED UP AND
HEADED UP TO THE HOSPITAL… ER VISIT #4 FOR LADYBUG.</span></div>
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<span style="font-family: "Corbel","sans-serif";"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5F69_v0czCVyIK1762HSasO_cxF4jPnpQlZJvsqaVRntegLCM3E05vVdG05CE_0R_4DTvolUHp6D_VZl0ktjHfTO_2CFmWq9RHIZGUu-COd1ep4pAivJui_-ZYzEaLuoahyR4DCFns5mG/s640/blogger-image--123664710.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5F69_v0czCVyIK1762HSasO_cxF4jPnpQlZJvsqaVRntegLCM3E05vVdG05CE_0R_4DTvolUHp6D_VZl0ktjHfTO_2CFmWq9RHIZGUu-COd1ep4pAivJui_-ZYzEaLuoahyR4DCFns5mG/s640/blogger-image--123664710.jpg" /></a></span></div>
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<span style="font-family: "Corbel","sans-serif";">IT WAS
POSSIBLY THE LONGEST NIGHT…. EVER! SHE WAS MISERABLE AND WE WERE ALL EXHAUSTED! AFTER 7 HOURS… A BLADDER SCAN ,BLOOD DRAWS,
PORT ACCESS, FLUIDS, AND A CATHETER THE DIAGNOSIS WAS IN… SEVERE CONSTIPATION. WHAT?!? YEA, EXACTLY WHAT WE THOUGHT! HOW IS THAT EVEN POSSIBLE?
MOST KIDS ON THIS TYPE OF CHEMO PROTOCOL EXPERIENCE SOME CONSTIPATION BUT
LADYBUG IN THE PAST HAS BEEN THE EXACT OPPOSITE. WE WERE A LITTLE STUNNED TO SAY THE LEAST...</span></div>
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<span style="font-family: "Corbel","sans-serif";">HERE’S THE PROBLEM WITH CHEMO
AND CONSTIPATION…. YOU CAN’T REALLY USE TRADITIONAL METHODS OF RELIEVING THAT
PAIN FOR A BABY OR TODDLER. NO ENEMA’S, NO SUPPOSITORIES… CHEMO MAKES THE SIMPLEST
OF PROBLEMS MUCH MORE COMPLICATED. BECAUSE HER COUNTS ARE STILL PRETTY LOW
FROM THE LAST ROUND OF CHEMO THERE WAS NOT MUCH WE COULD DO TO HELP HER. ONCOLOGY DID NOT FEEL COMFORTABLE MOVING FORWARD WITH ANY SORT OF ENEMA, THE RISK OF INFECTION JUST DIDN'T OUTWEIGH THE REWARD. SO,THEY
PRESCRIBED US 3 DIFFERENT LAXATIVES TO GIVE HER 4 TIMES PER DAY IN HOPES WE COULD GET
THINGS REGULATED AND BACK ON TRACK.THE HOPE WAS IF WE ELEIVATED THE CONSTIPATION SHE WOULD START URINATING.</span></div>
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<span style="font-family: "Corbel","sans-serif";">IT’S STILL A
WORK IN PROGRESS, SHE’S HAD A REALLY ROUGH LAST COUPLE OF DAYS, BUT SHE’S FINALLY
GOING TO THE BATHROOM AGAIN! HER TUMMY HURTS AND WE’RE ALL EXHAUSTED BUT WE’RE
GETTING THERE… ONE MORE ROUND OF CHEMO. ONE MORE ROUND!!!</span></div>
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Anonymoushttp://www.blogger.com/profile/00163471267380896406noreply@blogger.com0tag:blogger.com,1999:blog-103481517630554669.post-23615622863814652532015-03-16T08:54:00.001-06:002015-03-16T08:54:30.253-06:00Chemotherapy- Round 11SO happy to have round 11 done! It was a doozie! <div><br></div><div>LadyBug's chemo appointment this month was scheduled nice and early... So we packed up our favorite friends and headed up to the hospital. </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSZO_3qlacpPnWa4g85ZDuX_-pEul03BekhCylomiL71zYcn9dtDQ0J9R1KPen9qI4LnoTcq1aFiuEeSH3l-LE-9NdvnBXQJ3el-wnP2YfXuZ8QjCZf8ssGOUtJIgQ88tzvLGEEcDb-XIY/s640/blogger-image-1446438042.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSZO_3qlacpPnWa4g85ZDuX_-pEul03BekhCylomiL71zYcn9dtDQ0J9R1KPen9qI4LnoTcq1aFiuEeSH3l-LE-9NdvnBXQJ3el-wnP2YfXuZ8QjCZf8ssGOUtJIgQ88tzvLGEEcDb-XIY/s640/blogger-image-1446438042.jpg"></a></div><br></div><div>Amazingly there was no traffic so we got up to the hospital a little earlier than expected. So we grabbed some breakfast smoothies and settled in to watch the light show in the lobby- always LadyBug's favorite! </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBycyuqvXbxYMLV9R5bD8dDQaM_4YyFH4ml22TK1eecB1ZPrHBcfbouaIbnATChxE_NZp8XyQBjpaEWJkEBKPxk_oVMVuMxFoOfTgGqHLBkdwSPYE-SuHWKRZxO_WDqrqPb0u_4L59eERt/s640/blogger-image--508020026.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBycyuqvXbxYMLV9R5bD8dDQaM_4YyFH4ml22TK1eecB1ZPrHBcfbouaIbnATChxE_NZp8XyQBjpaEWJkEBKPxk_oVMVuMxFoOfTgGqHLBkdwSPYE-SuHWKRZxO_WDqrqPb0u_4L59eERt/s640/blogger-image--508020026.jpg"></a></div><br></div><div>After breakfast we headed up to Oncology. LadyBug's got this routine down... We get her blood pressure checked. Temperature checked. And then her height and weight measurements. Then... we play! The first part of the morning is all check-ups and chatting with mommy and daddy so LadyBug grabs some toys and plays with all the new and exciting things. She's pretty spoiled up there so this is probably her favorite part of the day! </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQfyV54HpZGTuRLJEZgJFwM9lVe-x6wGVgoNHU13wrXq9Xg4GGpKxvWFn0hCxcezZ3owbEvY3fs2TpMAfVEX5GnLMFlle_uKeP5ZyJ7V1m13aEfFwsUwXbl6aJkPFX4fgJCY9zeXi8Woju/s640/blogger-image--1341694598.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQfyV54HpZGTuRLJEZgJFwM9lVe-x6wGVgoNHU13wrXq9Xg4GGpKxvWFn0hCxcezZ3owbEvY3fs2TpMAfVEX5GnLMFlle_uKeP5ZyJ7V1m13aEfFwsUwXbl6aJkPFX4fgJCY9zeXi8Woju/s640/blogger-image--1341694598.jpg"></a></div><br></div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmmZg4iA1icAEWISj_6h-iOIviJNqAcrK5kYQwGJraZ88pd2RdYk36pBKmPl4nogo1XoL-6Srkj41WcnPeUXMdCBHslljmsom3JWfi7yhO6VsLoXs7dVtO016bQSuFfa04RNG1UT12zaNS/s640/blogger-image--1005150940.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmmZg4iA1icAEWISj_6h-iOIviJNqAcrK5kYQwGJraZ88pd2RdYk36pBKmPl4nogo1XoL-6Srkj41WcnPeUXMdCBHslljmsom3JWfi7yhO6VsLoXs7dVtO016bQSuFfa04RNG1UT12zaNS/s640/blogger-image--1005150940.jpg"></a></div><br></div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEif4L29tkt1ALhdTsrsM1D9DeYtdVGd67W1cbTtXB8nTghbg8hAwsx9x6Hu8Dk5ABmgQMutcHGb2WBQyLT_J0MsaYFoL8WQQuYdsiIZm9AJpVr4B5JJ0o8FwVA2QzfyvqDScanu2YRyXBrt/s640/blogger-image--1762469802.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEif4L29tkt1ALhdTsrsM1D9DeYtdVGd67W1cbTtXB8nTghbg8hAwsx9x6Hu8Dk5ABmgQMutcHGb2WBQyLT_J0MsaYFoL8WQQuYdsiIZm9AJpVr4B5JJ0o8FwVA2QzfyvqDScanu2YRyXBrt/s640/blogger-image--1762469802.jpg"></a></div><br></div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjnukUbrhOllzH3MJZqaRLauO8CI7-8sr8qLrX-_0ZKg-gq07BXaEymkDmv7LfUEueb5A-uvfXPxTWbewj73xKymuRF28uzhQ8XQCxO3rJIteCocsz4N8J-fdB_xRA3tZ4waxZ8gn5RzhO/s640/blogger-image-1242954201.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjnukUbrhOllzH3MJZqaRLauO8CI7-8sr8qLrX-_0ZKg-gq07BXaEymkDmv7LfUEueb5A-uvfXPxTWbewj73xKymuRF28uzhQ8XQCxO3rJIteCocsz4N8J-fdB_xRA3tZ4waxZ8gn5RzhO/s640/blogger-image-1242954201.jpg"></a></div><br></div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWv8Ry4GYGi5S5HtybtF7cM7-Tf9FFJCue0Eo8dGvRX4khtf56n0Gb7PMwYDsXPToHJMrxjLAfOPgnAz176399YLw2_kxi1ZxmwwCn-ac-gglh3ANEqD7KCxwARAoY79cpUcE3FgCeiWDE/s640/blogger-image-1826477793.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWv8Ry4GYGi5S5HtybtF7cM7-Tf9FFJCue0Eo8dGvRX4khtf56n0Gb7PMwYDsXPToHJMrxjLAfOPgnAz176399YLw2_kxi1ZxmwwCn-ac-gglh3ANEqD7KCxwARAoY79cpUcE3FgCeiWDE/s640/blogger-image-1826477793.jpg"></a></div><br></div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPSoyc8tk54xz8I1BOTVgT47fcqu2yEDNTe9WP13IGHLrPGmmouCIXs74LfwS8ep4vAzCtykDA9INHcc3OM2TBZXKctC3Q40OoSAfbYnk440woaLqjng3aSy8fVAWCCPq0sr_5LltQ-d4d/s640/blogger-image-38906645.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPSoyc8tk54xz8I1BOTVgT47fcqu2yEDNTe9WP13IGHLrPGmmouCIXs74LfwS8ep4vAzCtykDA9INHcc3OM2TBZXKctC3Q40OoSAfbYnk440woaLqjng3aSy8fVAWCCPq0sr_5LltQ-d4d/s640/blogger-image-38906645.jpg"></a></div>Then things changed.... About 5 minutes after we snapped this picture all hell broke loose. Chemo has finally, after 11 months won the battle. Our poor girl went through about 15 tortorous minutes of throwing up, gagging, and throwing up some more. After 11 months of thinking we've finally got <span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">this routine down the biggest wrench was tossed into the mix. Our poor baby was throwing up like crazy and all we could do was stand there in complete and utter confusion. In 11 months nothing like this had ever happened- we had NO clue what to do! We were kind of Frozen in fear. I think we were both ready to grab her and take off running! She was sick and we couldn't do anything to help her. We had no extra cloths, the iPad was covered, everything was a mess! I think the entire thing caught LadyBug by surprise as well... After about 15 minutes of constant sickness she finally caught a little break and just burst into tears. Everyone around her was hustling to get her cleaned up, her doctors were paged, and the nurses were quickly getting us moved over to a clean spot... All the craziness just seemed to scare her even more. In the midst of the craziness LadyBug looked up at me and with the saddest face said "I'm sorry mommy". Holding it together at that point flew right out the window. Tears just flooded from my eyes... Here she is going through complete torture and she's apologizing to me! The unfairness of the entire situation just broke me, shattered my heart into a million pieces. Here we were so close to the finish line and everything seemed to be spinning out of our control...</span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif">Because of the allergic reaction and now the puking the chemo infusion was slowed way down and we had a few more hours added to our day. So, we snuggled up and enjoyed one of her favorite movies. </font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif"><br></font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhC_ETDS-lESlOuQvgBeb9xTQCep-GMLriU-AFoT7iglW4mF0lB69ctPvdUtITWv43R2iIQ3D8Y5QkwG9iMmGE08iFsw5P1Zki0vGqJtg_BSxFXtMrPNqIoTN66f5ufdzmBOoUNOd6Txm2V/s640/blogger-image--1953558276.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhC_ETDS-lESlOuQvgBeb9xTQCep-GMLriU-AFoT7iglW4mF0lB69ctPvdUtITWv43R2iIQ3D8Y5QkwG9iMmGE08iFsw5P1Zki0vGqJtg_BSxFXtMrPNqIoTN66f5ufdzmBOoUNOd6Txm2V/s640/blogger-image--1953558276.jpg"></a></div></font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif"><br></font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLEizc5vX6y2PyzQWX6mxNb1IdHSCy3jIbYrUs-AXOfl_n8vF4GPnSN93Ox_cM67mHnas3Smbwgi65QflS-NWVrFnHxUmcJnxq31LlFW1ohtgf83iA6OLcECD_6D5fyMubkvBD3i52gb44/s640/blogger-image-583776384.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLEizc5vX6y2PyzQWX6mxNb1IdHSCy3jIbYrUs-AXOfl_n8vF4GPnSN93Ox_cM67mHnas3Smbwgi65QflS-NWVrFnHxUmcJnxq31LlFW1ohtgf83iA6OLcECD_6D5fyMubkvBD3i52gb44/s640/blogger-image-583776384.jpg"></a></div><br></font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif">In an effort to bring a smile back to her face we hitched a ride to the car in a wagon...</font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhapKMNCZItvN8UfDjR1uiVykacerY6cgs_oTtefpgHqmiRD6hm3UAxuC36hV9rhqzJ__hpa9gkExqpIqRRVKxmK8SD89qgxJDU7z7rvw-pxjcC4lccOD4AUeV1x0rTxN-0awiIjuNRD9nY/s640/blogger-image-705304332.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhapKMNCZItvN8UfDjR1uiVykacerY6cgs_oTtefpgHqmiRD6hm3UAxuC36hV9rhqzJ__hpa9gkExqpIqRRVKxmK8SD89qgxJDU7z7rvw-pxjcC4lccOD4AUeV1x0rTxN-0awiIjuNRD9nY/s640/blogger-image-705304332.jpg"></a></div> </font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif">Then we jumped in the car and headed home to rest! </font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif"><br></font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNOxrKyqxLNszPgTdvXdxuqElQhCJwwNOlGS_fXf2Im27atX93T5ejgDNVCGY7341KJwuvq4RSwaXv_I3iGjJXw7jVIfyFApW6gpjuEL1zXveBufC8ymNZgSS3RCyllL3IDQTVfNGcUyv7/s640/blogger-image-2042071045.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNOxrKyqxLNszPgTdvXdxuqElQhCJwwNOlGS_fXf2Im27atX93T5ejgDNVCGY7341KJwuvq4RSwaXv_I3iGjJXw7jVIfyFApW6gpjuEL1zXveBufC8ymNZgSS3RCyllL3IDQTVfNGcUyv7/s640/blogger-image-2042071045.jpg"></a></div> Puke duty... </font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif"><br></font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif">The rest of the week we settled in at home snuggling and giving LadyBug a chance to rest and recovery... Get her energy up a little before lockdown! </font></div>Anonymoushttp://www.blogger.com/profile/00163471267380896406noreply@blogger.com0tag:blogger.com,1999:blog-103481517630554669.post-64632544888835650412015-03-16T08:00:00.001-06:002015-03-16T08:00:42.923-06:00#EndNF with the Utah GrizzliesWe had one of the most amazing weekends (last weekend)... Started off with a little Disney on Ice action with the family....<div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrAJjRiQ-TNrSPuUQIU5m9scYm3sMTSCp54056eHaWczbBzwT-LAwU2Ms-WwRkGdwcQftOHcRz3t8-jdcbruHTrK12kk8Sf7BC4LGpucf0pxz0S5wwCTEX1JlwdBtOecMJfs3T9WpCFK3M/s640/blogger-image--84139453.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrAJjRiQ-TNrSPuUQIU5m9scYm3sMTSCp54056eHaWczbBzwT-LAwU2Ms-WwRkGdwcQftOHcRz3t8-jdcbruHTrK12kk8Sf7BC4LGpucf0pxz0S5wwCTEX1JlwdBtOecMJfs3T9WpCFK3M/s640/blogger-image--84139453.jpg"></a></div><div><br></div><div><br></div><div><div class="separator" style="clear: both;">Then it was off to the #EndNF Night with the Utah Grizzlies! Honestly one of the best nights... Fun with all of our NF buddies... Can it get any better than that?!? <span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">Our fellow NF Hero T and his mom work hard every to get an NF night set up with the Grizzlies. Last year we were in the midst of the {{{TUMOR}}} battle so we didn't make it out, this year it was the perfect pre-chemo family fun night! </span></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">LadyBug was SO excited! She was literally counting down all morning... And the day did not disappoint! Late Friday afternoon we received a call from our friends inviting LadyBug to help two other heros drop the puck right before the game! We were really excited but we had no idea she would love it as much as she did! The Grizzlies sure know how to make a kid feel special- they literally roll out the red carpet for them. She talked about it all night- telling anyone and everyone that was sitting next to us... Showing off her puck with pure joy. She has carried that thing around with her all week! </div><br><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOjmKNFUHSepB43dsDpNzU1ppCqi0J9EjIivqUIt0n8TULNmq4TPrkHTQ-ekNNK0_9cG78PE9OCg8uOVftAoG5CmVQr93MC_XFOC-iEzIymHRj9ncGxqzSdg1LsiCCA_6BIFMDQdcKS9wB/s640/blogger-image--1351580421.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOjmKNFUHSepB43dsDpNzU1ppCqi0J9EjIivqUIt0n8TULNmq4TPrkHTQ-ekNNK0_9cG78PE9OCg8uOVftAoG5CmVQr93MC_XFOC-iEzIymHRj9ncGxqzSdg1LsiCCA_6BIFMDQdcKS9wB/s640/blogger-image--1351580421.jpg"></a></div><div> Pre-Game fun with cousins and friends </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4-mfS_oh-MGEUwWn7X_X1BBntjmh-MNyO0E5Z8gDfwJJrdlIovbpYbkDYtt0NKP0edkNo_TrzhaqzowsbK2X_FPw9z_13_dChMF1MQSsXwfpOv6fK3bD3RNrQ-eCoAO9XBFXgM_s1AgIn/s640/blogger-image--1521060213.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4-mfS_oh-MGEUwWn7X_X1BBntjmh-MNyO0E5Z8gDfwJJrdlIovbpYbkDYtt0NKP0edkNo_TrzhaqzowsbK2X_FPw9z_13_dChMF1MQSsXwfpOv6fK3bD3RNrQ-eCoAO9XBFXgM_s1AgIn/s640/blogger-image--1521060213.jpg"></a></div><div> Waiting in the tunnel for her big moment</div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNns5YGr1xkMxmV4UJ3kI4u5mdV1U0KFcwNMT9oe2PwFEzAu_lMuBMcRzA380DC3eKgZp0pcTjfVBDlvCZ9BmRldFfuhH9AePn1gpSwJCnvL5YtuB539y8oX2H1689JAhhGo5Lk9njlgfT/s640/blogger-image-186732040.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNns5YGr1xkMxmV4UJ3kI4u5mdV1U0KFcwNMT9oe2PwFEzAu_lMuBMcRzA380DC3eKgZp0pcTjfVBDlvCZ9BmRldFfuhH9AePn1gpSwJCnvL5YtuB539y8oX2H1689JAhhGo5Lk9njlgfT/s640/blogger-image-186732040.jpg"></a></div><br><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXPoua36fpk-xidsg-5R3hzNX4Tv94sG1oKMSLA6abMpr_wemxbrVdu9OM5okklhXD4Mks9fcIyHQyPFa0wZYLYXcAV1CtQ38mbpzx8RQsXL7CZbUvl-jIwWRIac-7IRdaGcSJ4EaWV0ko/s640/blogger-image-1896374541.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXPoua36fpk-xidsg-5R3hzNX4Tv94sG1oKMSLA6abMpr_wemxbrVdu9OM5okklhXD4Mks9fcIyHQyPFa0wZYLYXcAV1CtQ38mbpzx8RQsXL7CZbUvl-jIwWRIac-7IRdaGcSJ4EaWV0ko/s640/blogger-image-1896374541.jpg"></a></div><div> Cutest little NF Heros! </div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCzukqu-nKMdj-FQhg-4e2neE-HQdYLpiDC_3hj-gIInqoO686bRZOor-c-_ZlCuO0evXT0WOPrfq6d0pprCSRX97V6QmNeCta0OAEVtAihTLca-wL4WbZXxzVolPWpmWuY7Z_ycqf3yOu/s640/blogger-image--829791828.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCzukqu-nKMdj-FQhg-4e2neE-HQdYLpiDC_3hj-gIInqoO686bRZOor-c-_ZlCuO0evXT0WOPrfq6d0pprCSRX97V6QmNeCta0OAEVtAihTLca-wL4WbZXxzVolPWpmWuY7Z_ycqf3yOu/s640/blogger-image--829791828.jpg"></a></div><br><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGJi3snAtN1po9-52JQ42YhGMf2RBHPaApU7CuZsAiIh2S20TUulLtrmGAFlJHTcWnAZI4yiI_Tk4dSXYHscmhLy6dy-7utl8-FeWjMRbtnE5qmShm5qjDuMjM_dLJjuHE3O4h4jpXq6ik/s640/blogger-image-1230108844.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGJi3snAtN1po9-52JQ42YhGMf2RBHPaApU7CuZsAiIh2S20TUulLtrmGAFlJHTcWnAZI4yiI_Tk4dSXYHscmhLy6dy-7utl8-FeWjMRbtnE5qmShm5qjDuMjM_dLJjuHE3O4h4jpXq6ik/s640/blogger-image-1230108844.jpg"></a></div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcp83pIhJKnUD87LY4AUbqTUQN9L3jbrMYqX0Lht_VlaS5Mviw2gbFFDlBPj7jbBoUl9P1YS6LXLj6NbWMMaLLTDhtscEkN_aPpOySlD3-AagAwy3f80oGg1HEB5FlkoBwKsV16TaO-kIN/s640/blogger-image--1805063271.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcp83pIhJKnUD87LY4AUbqTUQN9L3jbrMYqX0Lht_VlaS5Mviw2gbFFDlBPj7jbBoUl9P1YS6LXLj6NbWMMaLLTDhtscEkN_aPpOySlD3-AagAwy3f80oGg1HEB5FlkoBwKsV16TaO-kIN/s640/blogger-image--1805063271.jpg"></a></div><br><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiklprc8hDPYFtf2uIYFhBJIEzpSrWKBBdW4HjRLcM82bqymC9Ki4vmnP1mUiIv4xbVDNsUuD8WyrxuBomM25loLYlOm4nlRgTD85BLX2EGZeOBpqudie35MsY5bZ20RJ2sIukmMDP9v8r9/s640/blogger-image--1520709035.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiklprc8hDPYFtf2uIYFhBJIEzpSrWKBBdW4HjRLcM82bqymC9Ki4vmnP1mUiIv4xbVDNsUuD8WyrxuBomM25loLYlOm4nlRgTD85BLX2EGZeOBpqudie35MsY5bZ20RJ2sIukmMDP9v8r9/s640/blogger-image--1520709035.jpg"></a></div><div> Smiles all night long! </div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhKDmmi6G7Yk_TzgkMKtSzZigCn1UcWiVPN_ZePiFyyAbgftNxhQPVFYSt7PgW63jh3l92lPjwDqqhqlstnuEiOuI9DDr33Dp_ifNo8NX1OLXEjkCU6_a_OwNfO60v_E-wHocQHG7krdDr/s640/blogger-image-55106167.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhKDmmi6G7Yk_TzgkMKtSzZigCn1UcWiVPN_ZePiFyyAbgftNxhQPVFYSt7PgW63jh3l92lPjwDqqhqlstnuEiOuI9DDr33Dp_ifNo8NX1OLXEjkCU6_a_OwNfO60v_E-wHocQHG7krdDr/s640/blogger-image-55106167.jpg"></a></div><br><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmUj6tq5yOmXyIMA7Jk8mPylgDuMOe7vWrWa9aDnqkomJRY1xaO8vKsPgwz_LoQ2Nhr6WGlyUFp9-4kNOVs3oZ86rJ-TCMAVM7ywcoNFYRH_kL6Q9sfVhyphenhyphennGmgPMFQnXeaM07pdsRTc9Qw/s640/blogger-image-1346939270.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmUj6tq5yOmXyIMA7Jk8mPylgDuMOe7vWrWa9aDnqkomJRY1xaO8vKsPgwz_LoQ2Nhr6WGlyUFp9-4kNOVs3oZ86rJ-TCMAVM7ywcoNFYRH_kL6Q9sfVhyphenhyphennGmgPMFQnXeaM07pdsRTc9Qw/s640/blogger-image-1346939270.jpg"></a></div><br><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOZuHfY4YpeVzBNZwj67Bky2FOsAhgPgcCrv2w34hVFUDoyIk1JJZRVeJ7pDt2eYIGvmlDH-sv8A5taZr1dYRNbbD0Nvv9RuNzgi-YpORhOPztm3NpkA_BrpG8CbxNWnXi5ozLlt3JV-VF/s640/blogger-image-1690569695.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOZuHfY4YpeVzBNZwj67Bky2FOsAhgPgcCrv2w34hVFUDoyIk1JJZRVeJ7pDt2eYIGvmlDH-sv8A5taZr1dYRNbbD0Nvv9RuNzgi-YpORhOPztm3NpkA_BrpG8CbxNWnXi5ozLlt3JV-VF/s640/blogger-image-1690569695.jpg"></a></div><br><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUZIIdXTQrpJsorR1ep62OPOUZOFMIYm8J5vlyn3nfIjZNEKMAU33dItDsZq0cg080jzKREc7hSh-jaXdltxTSsVR0aJXVwKJu1LiKTDU_QnkdjNjtAShyphenhyphen3lW_qR0AcUSn1qmL-h0RwEQy/s640/blogger-image--963346988.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUZIIdXTQrpJsorR1ep62OPOUZOFMIYm8J5vlyn3nfIjZNEKMAU33dItDsZq0cg080jzKREc7hSh-jaXdltxTSsVR0aJXVwKJu1LiKTDU_QnkdjNjtAShyphenhyphen3lW_qR0AcUSn1qmL-h0RwEQy/s640/blogger-image--963346988.jpg"></a></div><br><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2VuJgJEoynWNg74uPIIUfGGpJOCbho0_fk9kze6Sv6Ym2VYvR7n0QxGuWewczIr7GySOunAjZXecMWrxWeRGCPqB7OMfzhDusHtUmEwH04yWUbEpqc-OCXvr_AEDjyLu751pvEJBUXsrm/s640/blogger-image-346897122.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2VuJgJEoynWNg74uPIIUfGGpJOCbho0_fk9kze6Sv6Ym2VYvR7n0QxGuWewczIr7GySOunAjZXecMWrxWeRGCPqB7OMfzhDusHtUmEwH04yWUbEpqc-OCXvr_AEDjyLu751pvEJBUXsrm/s640/blogger-image-346897122.jpg"></a></div><br><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgY1A-0N8sTh7SBwvRcXGuhN3FgA5ma6MsP7AOqElqy-nypKTZRTtT9LVLNSImws2JTTac0tMallh3Z5k3er39jkqs6OOUaap7aUFJUe7K43vvnBRC9nCqjxp1lfz4Mo0hkmgnOXturEOgw/s640/blogger-image--1598484457.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgY1A-0N8sTh7SBwvRcXGuhN3FgA5ma6MsP7AOqElqy-nypKTZRTtT9LVLNSImws2JTTac0tMallh3Z5k3er39jkqs6OOUaap7aUFJUe7K43vvnBRC9nCqjxp1lfz4Mo0hkmgnOXturEOgw/s640/blogger-image--1598484457.jpg"></a></div><div> Popcorn and French Fries!!! </div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjnsERg5NskVbBwkOYtvhtfjf4KG2lcpZSHWlDTANfFL4W3adY9ljrCv5aAa-JJTy3GOmxMMQ6LNJKtuuoms1VReh7t9O2uybqaOkr1lcj5OQFziQXPh_Er-rYHQKjKfRfKdJvZyDkmrgy/s640/blogger-image-864628275.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjnsERg5NskVbBwkOYtvhtfjf4KG2lcpZSHWlDTANfFL4W3adY9ljrCv5aAa-JJTy3GOmxMMQ6LNJKtuuoms1VReh7t9O2uybqaOkr1lcj5OQFziQXPh_Er-rYHQKjKfRfKdJvZyDkmrgy/s640/blogger-image-864628275.jpg"></a></div><br><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5lw7CvLY4ojidQ3Sc7ffR6laNQCOt_CItVd3EkQPFNsWPRn1mLz9SjRunAF1YcPz7rXCNC66pvC-fQA3U6QyBb7VPWTw0zB84Dd1qeDgSmL-_UpKl3DREhuBXuVNQUh6GLrXbVsdhRsAm/s640/blogger-image--827483809.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5lw7CvLY4ojidQ3Sc7ffR6laNQCOt_CItVd3EkQPFNsWPRn1mLz9SjRunAF1YcPz7rXCNC66pvC-fQA3U6QyBb7VPWTw0zB84Dd1qeDgSmL-_UpKl3DREhuBXuVNQUh6GLrXbVsdhRsAm/s640/blogger-image--827483809.jpg"></a></div><br><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUEhXLy78GUmj5oLfRrFLemZTOiWHmVLlDMVW3gWrOIS0r6FWfYsyx5zFl-le6YEkG4eVfetz8UfUGuKnkCkq-2Qwe2tsKFxaDMkelWEZZbG9HOQvDhWqru_nlBIhI5-yxsD-aq5pP5YZy/s640/blogger-image--501600796.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUEhXLy78GUmj5oLfRrFLemZTOiWHmVLlDMVW3gWrOIS0r6FWfYsyx5zFl-le6YEkG4eVfetz8UfUGuKnkCkq-2Qwe2tsKFxaDMkelWEZZbG9HOQvDhWqru_nlBIhI5-yxsD-aq5pP5YZy/s640/blogger-image--501600796.jpg"></a></div><br></div></div></div></div></div></div></div></div></div></div></div></div></div></div></div></div></div></div></div><div>A great big shout out to the Utah Grizzlies for hosting such an awesome event! Your kindness and generosity will be with these kids for years and years to come! </div><div><br></div><div>#EndNF</div>Anonymoushttp://www.blogger.com/profile/00163471267380896406noreply@blogger.com0tag:blogger.com,1999:blog-103481517630554669.post-4362202687199930922015-02-12T09:02:00.002-07:002015-02-12T09:02:36.919-07:00One Year.<!--[if gte mso 9]><xml>
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<br />
<span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt;">I’M GOING
TO TRY AND GET THROUGH THIS WALK DOWN MEMORY LAND WITHOUT TOO MANY TEARS… </span><br />
<br />
<span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt;">ONE YEAR.
IT’S BEEN EXACTLY ONE YEAR SINCE OUR LIVES WERE FOREVER TURNED UPSIDE DOWN. SOME DAYS IT FEEL LIKE THAT WAS FOREVER AGO, OTHER DAYS IT FEELS LIKE IT WAS JUST A FEW HOURS AGO. 365
DAYS AND I CAN STILL REMEMBER EVERY SINGLE MOMENT OF THAT INITIAL CONVERSATION
WITH THE DOCTORS, EVERY DETAIL OF THE REST OF THAT WEEK… IT WAS THE WEEK THAT
FOREVER CHANGED OUR FAMILY. </span><br />
<br />
<span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt;">THE DAY
STARTED OUT LIKE ANY OTHER DAY. MOM AND DAD WENT TO WORK, LADYBUG WENT TO
SCHOOL, AND WE ALL MET UP LATER THAT AFTERNOON FOR ONE OF HER 6-MONTH ROUTINE EYE
EXAMS. WE HAD ALREADY HAD 3 OF THESE APPOINTMENTS SINCE HER NF1 DIAGNOSIS AND
THEY ALWAYS WENT THE SAME… QUICK CHECK OF HER EYES AND WE WERE TOLD EVERYTHING
LOOKED GREAT! WE WERE ALWAYS SENT ON OUR WAY WITH A WAIVE AND A FRIENDLY “SEE
YOU IN 6 MONTHS”. <span style="mso-tab-count: 1;"> </span></span><br />
<br />
<span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt;">I REMEMBER
THE EXACT MOMENT I KNEW THIS APPOINTMENT WAS GOING TO BE DIFFERENT. A NURSE
ALWAYS DOES A FEW QUICK TESTS AND CHECKS WITH RYLIE BEFORE WE SEE DR. HOFFMAN
AND AS SHE WENT THROUGH THE THEM I NOTICED SHE KEPT TRYING TO GET RYLIE TO LOOK
AT HER. IT WAS ALMOST AS IF SHE WAS PLEADING HER TO JUST LOOK AT THE CARDS.
TYPICALLY WE GO THROUGH ONE, TWO, MAYBE THREE TESTING CARDS… BUT TODAY CARD AFTER
CARD THERE WAS JUST NO RESPONSE FROM RYLIE. IT WAS AS IF SHE DIDN’T EVEN SEE
THE CARDS….</span><br />
<br />
<span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt;">STUPID
TRIVIAL THINGS STARTED GOING THROUGH MY HEAD… SHE’S GOING TO NEED GLASSES! HOW
DO YOU KEEP GLASSES ON A ONE YEAR OLD? HOW DO YOU KEEP A ONE YEAR OLD FROM BREAKING
GLASSES? ARE PEOPLE GOING TO STARE AT HER? ARE KIDS GOING TO MAKE FUN OF HER?
THINGS THAT SEEMED SO MAJOR... I ACTUALLY REMEMBER LOOKING AT BRETT SAYING “$20
BUCKS SAYS WE LEAVE HER WITH GLASSES”. HE KIND OF GAVE ME THE “YEP” LOOK. </span><br />
<br />
<span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt;">IT WASN’T
LONG BEFORE WE WERE ABLE TO MEET WITH DR. HOFFMAN. AND AGAIN, AS SOON AS HE
STARTED LOOKING AT HER EYES I JUST KNEW. I COULD JUST FEEL IT. SOMETHING WASN’T
RIGHT. I HAD THAT HORRIBLE FEELING TAKE OVER MY ENTIRE BODY. YOU KNOW THE
FEELING, THAT PARALYZING FEAR OF THE UNKNOWN. HE DIDN'T HAVE TO SPEAK, HIS FACE
SAID IT ALL. SOMETHING WAS DEFINITELY WRONG. SHE HAD A TUMOR. NOT SURE HOW BAD,
BUT HE WAS SURE IT WAS A TUMOR. IT WAS LIKE TIME STOOD STILL ALL WHILE THE
WORLD BEGAN RUSHING BY US AT SUPER SONIC SPEED. I COULD HEAR EVERY WORD DR.
HOFFMAN WAS SAYING BUT ALL I COULD DO WAS PLEAD WITH MY HEART TO HOLD IT
TOGETHER. WITH RYLIE SITTING ON MY LAP AND BRETT RIGHT NEXT TOO US I JUST KEPT
TELLING MYSELF “DON’T CRY. DON’T CRY.” IT WASN’T UNTIL DR. HOFFMAN HANDED ME A
TISSUE THAT I REALIZED I WAS ALREADY CRYING. THE TEARS JUST WOULDN'T STOP. I
HAD NO IDEA HOW TO PROTECT MY BABY FROM THIS... WE HAD NO IDEA HOW TO FIX IT.
IT WAS BY FAR THE MOST DEVASTATING AND TERRIFYING MOMENT OF OUR LIVES. THAT
MAN WAS MORE THAN JUST HER DOCTOR- WAS SO KIND, SO SWEET, AND SO RE-ASSURING TO
US. OUR WORLD WAS UNRAVELING AND I HAD NO IDEA WHAT TO DO. IN THE KINDEST WAY,
HE GRABBED MY HAND AND SAID “DON’T WORRY MOM, THAT’S WHY YOU COME SEE ME SO
OFTEN… SO WE CAN FIX THIS!” IT WAS SO COMFORTING TO HAVE HIM THERE. WE DIDN'T
KNOW WHAT THE PLAN WAS BUT I KNEW HE WOULD FIGURE ONE OUT. </span><br />
<br />
<span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt;">WE STOOD
THERE STUNNED AND IN SILENCE AS HOFFMAN’S OFFICE WORKED TO GET AN MRI
SCHEDULED. VEP TESTING SCHEDULED. ONCOLOGY APPOINTMENTS SET. WE JUST WANTED TO
GET OUT OF THERE... FIND A PLACE TO FALL APART AND SEARCH FOR GUIDANCE. SOMEHOW,
SOMEWAY WE MANAGED TO GET OUR THINGS GATHERED UP AS WE WERE USHERED OVER TO THE
MORAN EYE CENTER FOR SOME ADDITIONAL TESTS.IT JUST FELT SO UNREAL. SO, NOT
FAIR! I DON’T REMEMBER WALKING TO THE CAR, OR THE SHORT DRIVE OVER TO THE MORAN
EYE CENTER… THE NEXT THING I REMEMBER WE WERE SITTING IN THE PARKING GARAGE…
SHAKING, CRYING. WE WERE SCARED TO DEATH. I REMEMBER LOOKING AT BRETT, TEARS
STREAMING DOWN HIS FACE. THE ANGER IN HIS EYES... IT BROKE MY HEART ALL OVER
AGAIN. HE'S ALWAYS BEEN THE STRONG ONE, THE OPTIMISTIC ONE... TO SEE HIM SCARED
BROUGHT ON A WHOLE NEW LEVEL OF FEAR. </span><br />
<br />
<span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt;">WE WERE A
MESS. I COULDN’T EVEN THINK STRAIGHT. IT TOOK US FOREVER TO GET CHECKED IN
BECAUSE EVEN THE SIMPLEST “WHATS YOUR ADDRESS” QUESTION SENT ME INTO A STATE OF
FOG. WE COULDN’T BREATHE. WE JUST DIDN’T KNOW WHAT TO DO OR WHERE TO GO FROM
HERE. HOW DO YOU RECOVER FROM NEWS LIKE THIS? IT FELT LIKE WE WERE
DROWNING! </span><br />
<br />
<span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt;">EVERY TEST
THEY RAN JUST SEEMED TO FURTHER CONFIRM DR. HOFFMAN’S SUSPICIONS. NO ONE COULD
REALLY TELL US EXACT DETAILS UNTIL THE MRI A COUPLE DAYS LATER BUT WHAT THEY
COULD TELL US IS IT DIDN'T LOOK GOOD. THINGS HAD JUST CHANGED TOO MUCH SINCE
THEY HAD LAST SEEN HER IN SEPTEMBER. IN A MATTER OF WEEKS THINGS ONLY WENT FROM
BAD TO WORSE WITH THE TUMORS PROGRESSING QUICKER THAN ANYONE COULD HAVE
IMAGINED. WE WERE TOSSED INTO WEEKS OF UNCERTAINTY AND APPOINTMENTS AND FINALLY
JUST TWO DAYS AFTER HER SECOND BIRTHDAY SHE STARTED CHEMO. </span><br />
<br />
<span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt;">OUR WORLD
FOREVER CHANGED THAT DAY AND IT HAS NEVER BEEN THE SAME SENSE. HELL IF YOU
PUT THAT LITTLE FAMILY IN FRONT OF ME TODAY I DON’T EVEN THINK I WOULD
RECOGNIZE THEM. I KNOW WITHOUT A SHADOW OF A DOUBT I AM NOT THE SAME PERSON I
WAS A YEAR AGO. THIS ENTIRE ORDEAL HAS SOFTENED ALL OF US. IT’S PROBABLY THE
MOST HUMBLING EXPERIENCE WE HAVE EVER BEEN THROUGH. YOU SEE HOW MUCH PEOPLE
LOVE AND CARE FOR YOU AND IT CHANGES YOU, W IT COULDN’T. HOW DO YOU THANK
PEOPLE FOR GIVING YOU STRENGTH AND SUPPORT WHEN YOU CAN'T MUSTER UP YOUR OWN?
YOU SEE HOW HARD EACH DAY IS AND YOU FEEL FOR FAMILIES DEALING WITH SIMILAR
SITUATIONS, SOMETIMES THEIR SITUATION MAKE YOURS LOOK LIKE A WALK IN THE PARK.
YOU WANT TO HELP MAKE THEIR DAYS BETTER JUST LIKE PEOPLE DID FOR YOU. YOU TAKE
STOCK OF YOUR LIFE AND WHAT'S IMPORTANT TO YOU. IT'S MADE US WANT TO BE BETTER
PEOPLE, FOR RYLIE AND FOR OURSELVES. WE'VE HAD MOUNTAINS OF CHALLENGES
AND SCORES OF BAD DAYS. WE'VE BEEN PUSHED TO OUR LIMITS AND THEN PUSHED SOME
MORE. WE'VE BROKE DOWN AND THOUGHT WE COULDN'T GO ON... AND JUST WHEN WE
REACHED OUR BREAKING POINT THERE WAS ALWAYS SOMEONE THERE TO HELP US PICK UP
THE PIECES AND START FRESH. IT'S TRUE WHAT THEY SAY... “IT TAKES A VILLAGE”.
OUR VILLAGE IS <b style="mso-bidi-font-weight: normal;">HUGE.</b> THERE ARE FAR
TOO MANY PEOPLE TO THANK, FAR TOO MANY SUPPORTERS WE'VE NEVER EVEN MET. ONE
THING IS CERTAIN WE NEVER WOULD HAVE SURVIVED THIS LAST YEAR WITHOUT EACH AND
EVERY ONE OF YOU! EVERY SINGLE MOMENT WE’VE NEEDED SOMEONE, A LITTLE PICK ME UP
SOMEONE HAS BEEN THERE TO RESCUE US FROM OURSELVES. IT'S BEEN A YEAR OF LIFE
LESSONS AND I'M SURE WE HAVE FAR MORE TO LEARN BUT GOD WILLING THIS
CHAPTER WILL CLOSE IN THE NEXT FEW MONTHS. AND WHILE WE HOPE TO NEVER ENDURE
THIS AGAIN WE WILL REMEMBER THESE LESSONS AND STRIVE TO LIVE EVERYDAY WITH
LOVE, LAUGHTER, AND EXTREME GRATITUDE. </span><br />
<br />
<span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt;">AND THIS
GIRL… SHE’S EXPERIENCED FAR TOO MANY CHALLENGES IN THE LAST 12 MONTHS AND
NEVER HAS SHE COMPLAINED. WHILE SHE MAY SHED A FEW TEARS SHE ALWAYS DOES
EXACTLY WHAT THE MEDICAL STAFF ASKS OF HER. OUR HEARTS BURST WITH PRIDE WHEN WE
THINK OF EVERYTHING SHE HAS HANDLED IN THIS LAST YEAR! GROWN ADULTS STRUGGLE
WITH THINGS SHE DOES DAY IN AND DAY OUT. SHE HAS GROWN SO MUCH IN THE LAST YEAR
IT’S UNBELIEVABLE. TO SAY WE ARE PROUD OF HER WOULD BE THE UNDERSTATEMENT OF
THE YEAR. SO MANY PEOPLE NEVER GET TO MEET THEIR HERO; WE GET THE CHANCE TO
WAKE UP EVERY MORNING AND RAISE OURS! </span><br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_qgqMmxKtx_KpRvShqs9Poi8y3DsDS8Pscail_dR6dUxclJgQZqTWbu-xqUrAuQcd8WLGnvFAdnlMT1H80jBzcDxa68ikpt7Co0CpAP0XUBFBmdraaFZhnahmIIB4SrKyMKfk2qNbnC5Y/s1600/Rylie.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_qgqMmxKtx_KpRvShqs9Poi8y3DsDS8Pscail_dR6dUxclJgQZqTWbu-xqUrAuQcd8WLGnvFAdnlMT1H80jBzcDxa68ikpt7Co0CpAP0XUBFBmdraaFZhnahmIIB4SrKyMKfk2qNbnC5Y/s1600/Rylie.jpg" height="640" width="424" /></a></div>
<div style="text-align: center;">
<br /></div>
<br />
<span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt;">RYLIE
MARKAY, WE LOVE YOU SO MUCH! WE ARE SO PROUD OF YOU AND ALL OF THE
ACCOMPLISHMENTS YOU HAVE MADE THIS YEAR. MOST ADULTS CAN NOT HANDLE THE THINGS YOU ENDURE YET YOU DO IT EVERYDAY. YOUR STRENGTH INSPIRES US EACH AND EVERY SINGLE MOMENT OF EVERY DAY. THANK YOU FOR TEACHING US SOME OF THE MOST IMPORTANT LESSONS SOMEONE
WILL EVER HAVE THE PRIVILEGED OF LEARNING. YOU’VE MADE US BETTER PARENTS; HECK
YOU’VE MADE US BETTER PEOPLE IN GENERAL. WE KNOW THE NEXT FEW MONTHS MAY BE
JUST AS CHALLENGING AS THE LAST 12 BUT REMEMBER WE WILL ALWAYS BE RIGHT NEXT TO
YOU, HOLDING YOUR HAND AND ENCOURAGING YOU TO KEEP GOING. TOGETHER, THE THREE OF
US WILL BEAT THIS! <span style="mso-spacerun: yes;"> </span><b style="mso-bidi-font-weight: normal;"><span style="color: #e00a47;">WE LOVE YOU LADYBUG!!!</span></b> </span><br />
Anonymoushttp://www.blogger.com/profile/00163471267380896406noreply@blogger.com0tag:blogger.com,1999:blog-103481517630554669.post-57211952357927401342015-02-06T08:15:00.001-07:002015-02-09T20:49:00.003-07:00Chemotherapy- Round 10<span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;">SLEEPING BABY, SO WE BLOG 😉</span><div><span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;"><br></span></div><div><span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;">TWO MORE ROUNDS!!! TWO MORE ROUNDS!!! </span><br>
<br>
<span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;">CAN YOU BELIEVE WE JUST COMPLETED THE 10TH ROUND OF CHEMOTHERAPY!!! ONLY TWO MORE TO GO!!! TRYING NOT TO GET TOO EXCITED BUT SEEING THAT FINISH LINE, CLOSING THIS CHALLENGING CHAPTER, JUST BRINGS A SMILE TO OUR FACES. </span></div><div><span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;"><br></span></div><div><span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;">THIS GIRL DID SO AMAZING TODAY! SHE WAS STILL PRETTY HEAVILY SEDATED DURING CHEMO SO SHE JUST SLEPT THE AFTERNOON AWAY... MAKES THINGS A LITTLE EASIER WHEN YOU SPEND JUST UNDER 10 HOURS AT THE HOSPITAL! </span></div><div><br></div><div><span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;">ONCE WE GOT UPSTAIRS WE WERE ABLE TO MEET WITH OUR ONCOLOGY TEAM AND DISCUSS THE MRI RESULTS. THINGS ARE LOOKING GREAT. MRI RESULTS SHOW ANOTHER SMALL DECREASE IN THE TUMORS. COMPARED TO HER MRI LAST YEAR AT THIS TIME... WOW! WHAT A DRAMATIC DIFFERENCE! THIS GIRL HAS REALLY FAUGHT HER WAY THROUGH THIS LAST YEAR! SEEING THE TWO SCANS SIDE BY SIDE IS JUST UNBELIEVABLE. SHE'S A TOUGH GIRL! MAN, WE'VE COME A LONG WAY! ONCOLOGY WAS SO PLEASED WITH THE SCANS. IT'S HARD TO EXPLAIN THE FEELING... IT'S LIKE WE'VE MADE IT TO THE CHAMPIONSHIP GAME... WE'VE HAD A TOUGH SEASON, BUT WE'RE READY TO FINISH THIS JOURNEY ON TOP!!! </span></div><div><span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;"><br></span></div><div><span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;">TODAY IS THE FIRST DAY IN A VERY LONG TIME WE WALKED OUT OF THOSE HOSPITAL DOORS FEELING A SENSE OF RELIEF. IT'S THE FIRST TIME WE'VE LEFT WITH MORE ANSWERS THAN QUESTIONS... IT'S THE FIRST TIME WE'VE LEFT FEELING A LITTLE CONFIDENT THAT THE END IS NEAR... THAT SHE REALLY IS GOING TO BE OKAY! IT'S A LITTLE OVERWHELMING EMOTIONALLY, WE'RE MOVING INTO UNCHARTED TERRITORY, BUT IT FEELS GOOD TO BE MOVING. THE END IS NEAR AND ITS LOOKING BRIGHTER THAN EVER! </span></div><div><span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;"><br></span></div><div><span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;">COULD NOT BE ANY PROUDER OF THIS LITTLE SPIT FIRE AND HER AMAZING STRENGTH!!! </span></div><div><span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;"><br></span></div><div><span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghF-V2eakySkufHOyYVAaDPzj9M3yb5Ok4Cv_PtxJtSDXCjo0CVSC1fwZcMhN3WihRA4WFRQYGNe3ycRFKE2VdbffcMxwrtagnlR-6z0v8r3h5ZogKcC17p230ZXx17aB-iMzzEUxYPByK/s640/blogger-image--1197200788.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghF-V2eakySkufHOyYVAaDPzj9M3yb5Ok4Cv_PtxJtSDXCjo0CVSC1fwZcMhN3WihRA4WFRQYGNe3ycRFKE2VdbffcMxwrtagnlR-6z0v8r3h5ZogKcC17p230ZXx17aB-iMzzEUxYPByK/s640/blogger-image--1197200788.jpg"></a></div> LOVE HER! </span></div>Anonymoushttp://www.blogger.com/profile/01956491029265787954noreply@blogger.com1tag:blogger.com,1999:blog-103481517630554669.post-3805033902709192002015-02-06T08:14:00.002-07:002015-02-09T09:09:46.718-07:00New Specks<span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;">SATURDAY WE GOT TO GO PICK OUT SOME NEW SPECKS FOR THE CUTEST LITTLE</span><div><span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;">LADYBUG ON THE PLANET! </span></div><div><span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;"><br></span></div><div><span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;">DR. HOFFMAN THOUGHT IT WOULD BE WISE TO INVEST IN A COUPLE PAIRS OF GOOD GLASSES TO SERVE AS A SOURCE OF PROTECTION FOR LADYBUG'S RIGHT EYE. GIVEN SHE'S LOST SO MUCH VISION IN HER LEFT EYE PROTECTING HER RIGHT EYE HAS BECOME OUR NUMBER ONE GOAL. </span></div><div><span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;"><br></span></div><div><span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;">SHE WASNT TOO SURE ANOUT THIS PROCESS AND WAS A LITTLE HESITANT BUT AS SOON AS WE WALKED IN SHE WALKED STRAIGHT OVER TO THE PAIR SHE WANTED... WE WERE IN AND OUT IN LESS THAN 15 MINUTES! SHE GETS HER AMAZING SHOPPING ABILITIES FROM HER MOM. </span></div><div><span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;"><br></span></div><div><span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;">SHE WASNT SO SURE ABOUT THEM AT FIRST, AND WERE DEFINITELY GOING TO HAVE TO INVEST IN A REWARD CHART BUT SHE LOOKS PRETTY DARN CUTE! EXCITED FOR THEM TO ARRIVE IN A FRW MORE DAYS! </span></div><div><span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;"><br></span></div><div><span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg39r0qruFZouKpD60GAxKGxTyH9cBPlq40BWguiJqrx45x0z0dzdWkdXk2d-BNI6aYXZC0OQz79-bTK9T06Uob_3auINWHFiAJjUjqw2NSOG0DCIEJPbMIImFEerZYUPGgldk9zmrhaRL-/s640/blogger-image-480951595.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg39r0qruFZouKpD60GAxKGxTyH9cBPlq40BWguiJqrx45x0z0dzdWkdXk2d-BNI6aYXZC0OQz79-bTK9T06Uob_3auINWHFiAJjUjqw2NSOG0DCIEJPbMIImFEerZYUPGgldk9zmrhaRL-/s640/blogger-image-480951595.jpg"></a></div><br></span></div><div><span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;"><br></span></div><div><span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisldSMn5R12A8zCEjhh9Mm1ZsuGNdpLiMH9RFUU7h2qq4mTPkxrQwfFoXPU_lWg-NjT9aYp6HyKYyKSZhj2pAjgMS2zvPBAdCXyrl0Kl9XUOUzSglSyhWLWjrieBL1oTnSdNNT2BRnq-q2/s640/blogger-image--1917464805.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisldSMn5R12A8zCEjhh9Mm1ZsuGNdpLiMH9RFUU7h2qq4mTPkxrQwfFoXPU_lWg-NjT9aYp6HyKYyKSZhj2pAjgMS2zvPBAdCXyrl0Kl9XUOUzSglSyhWLWjrieBL1oTnSdNNT2BRnq-q2/s640/blogger-image--1917464805.jpg"></a></div><br></span></div><div><span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;"><br></span></div>Anonymoushttp://www.blogger.com/profile/01956491029265787954noreply@blogger.com0tag:blogger.com,1999:blog-103481517630554669.post-7365442159327646822015-02-06T08:13:00.004-07:002015-02-09T13:38:09.420-07:00MRI #5 with a side of ABR Testing<div class="MsoNormal"><span style="font-family: Corbel, sans-serif; font-size: 10pt; line-height: 115%;">9 MONTH MRI EVALUATION THIS MORNING! ONLY ONE MORE SERIES OF SCANS IN 3 MONTHS AND THIS IS ALL OVER!!! </span></div><div class="MsoNormal"><span style="font-family: Corbel, sans-serif; font-size: 10pt; line-height: 115%;"><br></span></div><div class="MsoNormal"><span style="font-family: Corbel, sans-serif; font-size: 10pt; line-height: 115%;">THIS MORNING STARTED OUT A LITTLE ROUGH... OUR POOR GIRL KNEW WHAT WAS COMING THE MINUTE WE PULLED OUT HER CREAM. SHE JUST KEPT BEGGING US TO TAKE HER TO SCHOOL SO SHE COULD BE WITH HER FRIENDS... TALK ABOUT HEART BREAKING. 💔</span></div><div class="MsoNormal"><span style="font-family: Corbel, sans-serif; font-size: 10pt; line-height: 115%;"><br></span></div><div class="MsoNormal"><span style="font-family: Corbel, sans-serif; font-size: 10pt; line-height: 115%;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6gdvhfGg5luB8IIA1CQtEwte8OTeKrm5gBHtocVdOyPNPbIbEJlJfq47LDWj1lXdQJ839Q4Z65Vzf1V2z6tdVapliSDou8In952rVchfJGe3aDG4ZNmiE7hR6X9777pctKxv2ec_L7hnr/s640/blogger-image--582110999.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6gdvhfGg5luB8IIA1CQtEwte8OTeKrm5gBHtocVdOyPNPbIbEJlJfq47LDWj1lXdQJ839Q4Z65Vzf1V2z6tdVapliSDou8In952rVchfJGe3aDG4ZNmiE7hR6X9777pctKxv2ec_L7hnr/s640/blogger-image--582110999.jpg"></a></div>NOT READY TO LET DADDY OUT OF HER SIGHT</span></div><div class="MsoNormal"><span style="font-family: Corbel, sans-serif; font-size: 10pt; line-height: 115%;"><br></span></div><div class="MsoNormal"><span style="font-family: Corbel, sans-serif; font-size: 10pt; line-height: 115%;">SHE DID PRETTY WELL ONCE WE GOT TO THE HOSPITAL. LOTS OF COLORING, BLOCK BUILDING, AND A LITTLE MICKEY MOUSE CLUB HOUSE! </span></div><div class="MsoNormal"><span style="font-family: Corbel, sans-serif; font-size: 10pt; line-height: 115%;"><br></span></div><div class="MsoNormal"><span style="font-family: Corbel, sans-serif; font-size: 10pt; line-height: 115%;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlUHtQZ-ARPFSAMqJT1aJOsmOQoevYeqQX3zrrIdenId5Q_NsPL-GGyi_q-CmIBQ31tgPBj7ANHzRxAxBWhCDw9WYbdLwb9FzPk0u5Udx7ifO21wAY9gAFbgOv2H3hg9QVad63A7IZK2Zb/s640/blogger-image-1018541831.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlUHtQZ-ARPFSAMqJT1aJOsmOQoevYeqQX3zrrIdenId5Q_NsPL-GGyi_q-CmIBQ31tgPBj7ANHzRxAxBWhCDw9WYbdLwb9FzPk0u5Udx7ifO21wAY9gAFbgOv2H3hg9QVad63A7IZK2Zb/s640/blogger-image-1018541831.jpg"></a></div><br></span></div><div class="MsoNormal"><span style="font-family: Corbel, sans-serif; font-size: 10pt; line-height: 115%;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEho8RPzP0VY-eY-0V_RlRwquOfBGwEaE5PJmvBW7YdIs-uPgK_PesgUaaY03H6IRIjT9MN8S2PKjC-ERcrAhEE9TNNukx-6szjvDSK-4phZ97R_i8GHWEZEcQhtfWOt731rf92mvka1RKVL/s640/blogger-image-23397973.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEho8RPzP0VY-eY-0V_RlRwquOfBGwEaE5PJmvBW7YdIs-uPgK_PesgUaaY03H6IRIjT9MN8S2PKjC-ERcrAhEE9TNNukx-6szjvDSK-4phZ97R_i8GHWEZEcQhtfWOt731rf92mvka1RKVL/s640/blogger-image-23397973.jpg"></a></div><br></span></div><div class="MsoNormal"><span style="font-family: Corbel, sans-serif; font-size: 10pt; line-height: 115%;"><br></span></div><div class="MsoNormal"><span style="font-family: Corbel, sans-serif; font-size: 10pt; line-height: 115%;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrnriCCZLesWDtQXfx65qlch0LbvA87QcK17rtvyafwMSGsLR48rDdbABb6AzQ3DfGvqMQmIYwCBKPd8WO9KuzRIMBbLyC8pkMoPOKWB0Yyn8coPTh6MICeAoEGeEd72k1QBm_KBEexmEF/s640/blogger-image-1560718678.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrnriCCZLesWDtQXfx65qlch0LbvA87QcK17rtvyafwMSGsLR48rDdbABb6AzQ3DfGvqMQmIYwCBKPd8WO9KuzRIMBbLyC8pkMoPOKWB0Yyn8coPTh6MICeAoEGeEd72k1QBm_KBEexmEF/s640/blogger-image-1560718678.jpg"></a></div><br></span></div><div class="MsoNormal"><br></div><div class="MsoNormal"><span style="font-family: Corbel, sans-serif; font-size: 10pt; line-height: 115%;">SCANS WENT REALLY WELL. WE SEEM TO HAVE FOUND THE PERFECT DOSING! LADYBUG WENT TO SLEEP BEAUTIFULLY THIS TIME AND STAYED ASLEEP THE ENTIRE TIME! </span></div><div class="MsoNormal"><span style="font-family: Corbel, sans-serif; font-size: 10pt; line-height: 115%;"><br></span></div><div class="MsoNormal"><font face="Corbel, sans-serif" size="2"><span style="line-height: 14px;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0WHdktGtghOHQiZ2CSqchQmHN_nSXb5xR6YvMXpZsdB4scz8vLsgXnWE3Np8puTVCkivJF8PdiqFgYP9iOsMJPou2pcOoZbz69yhxiQ7tJqSbKjHdKyVmjukDLa0ptYg2203EV_JknO7P/s640/blogger-image-1461596633.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0WHdktGtghOHQiZ2CSqchQmHN_nSXb5xR6YvMXpZsdB4scz8vLsgXnWE3Np8puTVCkivJF8PdiqFgYP9iOsMJPou2pcOoZbz69yhxiQ7tJqSbKjHdKyVmjukDLa0ptYg2203EV_JknO7P/s640/blogger-image-1461596633.jpg"></a></div></div></span></font></div><div class="MsoNormal"><font face="Corbel, sans-serif" size="2"><span style="line-height: 14px;"><br></span></font></div><div class="MsoNormal"><font face="Corbel, sans-serif" size="2"><span style="line-height: 14px;">POPSICLES AND SNUGGLES! </span></font></div><div class="MsoNormal"><span style="font-family: Corbel, sans-serif; font-size: 10pt; line-height: 115%;"><br></span></div><div class="MsoNormal"><span style="font-family: Corbel, sans-serif; font-size: 10pt; line-height: 115%;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwi15S2l2fSmfNIhpddxp4_Yh5PVXK7jJhinHdbw6pDZnYXbTE8moE3JlMFv7fJPNkByOn9NJKzG-H2BN7G8iB0YO3FpsY-e8kCO4jsB29rLMAAN_kbG9pv53t4MrOF6t7t44ouRY_PjUu/s640/blogger-image-813457304.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwi15S2l2fSmfNIhpddxp4_Yh5PVXK7jJhinHdbw6pDZnYXbTE8moE3JlMFv7fJPNkByOn9NJKzG-H2BN7G8iB0YO3FpsY-e8kCO4jsB29rLMAAN_kbG9pv53t4MrOF6t7t44ouRY_PjUu/s640/blogger-image-813457304.jpg"></a></div><br></span></div><div class="MsoNormal"><span style="font-family: Corbel, sans-serif; font-size: 10pt; line-height: 115%;"><br></span></div><div class="MsoNormal"><span style="font-family: Corbel, sans-serif; font-size: 10pt; line-height: 115%;">ABR RESULTS LOOK GREAT! STILL A SMALL AMOUNT OF HIGH FREQUENCY HEARING LOSS IN THE LEFT EAR BUT NO NEW CHANGES. EVERYTHING LOOKS STABLE! WILL RECHECK AGAIN IN 3 MONTHS</span></div><div class="MsoNormal"><span style="font-family: Corbel, sans-serif; font-size: 10pt; line-height: 115%;"><br></span></div><div class="MsoNormal"><span style="font-family: Corbel, sans-serif; font-size: 10pt; line-height: 115%;">MRI RESULTS ARE ALSO BACK. TUMORS ARE STABLE!!! BEST NEWS EVER! FROM LAST FEBRUARY THE TUMORS HAVE EVEN SHOWED A SMALL DECREASE IN SIZE! CELEBRATING LOTS OF GOOD NEWS TODAY!!! </span></div><div class="MsoNormal"><span style="font-family: Corbel, sans-serif; font-size: 10pt; line-height: 115%;"><br></span></div><div class="MsoNormal"><span style="font-family: Corbel, sans-serif; font-size: 10pt; line-height: 115%;">NOW WE'RE OFF TO CHEMO...</span></div><div class="MsoNormal"><span style="font-family: Corbel, sans-serif; font-size: 10pt; line-height: 115%;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLSr3BkQFGfXMnKgicmENr5hKnfOKaFokajEbooMxI4BCmu8yWr6fgBXe9A0vS2Q-IyMwkwDRftp3f_oczZO9vIsT_PrtyvJrEL5woIAb3FUlioLERD39FriLZArKL5YZH5EXXy4s9f_b3/s640/blogger-image--415498958.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLSr3BkQFGfXMnKgicmENr5hKnfOKaFokajEbooMxI4BCmu8yWr6fgBXe9A0vS2Q-IyMwkwDRftp3f_oczZO9vIsT_PrtyvJrEL5woIAb3FUlioLERD39FriLZArKL5YZH5EXXy4s9f_b3/s640/blogger-image--415498958.jpg"></a></div><br></span></div>
Anonymoushttp://www.blogger.com/profile/01956491029265787954noreply@blogger.com0tag:blogger.com,1999:blog-103481517630554669.post-71224850896420620862015-02-06T08:13:00.000-07:002015-02-09T08:55:42.053-07:00Opthamology<!--[if gte mso 9]><xml>
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<span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;">WHAT A WEEKEND! FRIDAY MORNING STARTED OFF BRIGHT AND
EARLY… AROUND 4:30AM WE WOKE UP TO LADYBUG CRYING AND COUGHING LIKE CRAZY. SHE
WAS COUGHING SO HARD SHE SOUNDED LIKE SHE WAS CHOCKING… WE RAN INTO HER ROOM TO
CHECK ON HER AND AS SOON AS WE GRABBED HER IT WAS OBVIOUS SHE WAS FIGHTING SOME
SORT OF COLD OR FLU BUG. SHE WAS ON FIRE. SHE WAS CRYING AND VERY MUCH MISERABLE… QUICK
CHECK OF HER TEMPERATURE SHOWED SHE WAS AT 102.5. AFTER OUR LAST EXPERIENCE WE
KNEW THINGS COULD CHANGE WAY TOO QUICKLY SO WE CALLED THE ONCOLOGIST- KNOWING
THEY WERE GOING TO ASK US TO COME IN WE CHANGED AND STARTED PACKING UP A FEW
ESSENTIALS. <span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNormal">
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<div class="MsoNormal">
<span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;">WE WERE UP TO THE HOSPITAL BY AROUND 5AM. BY THEN SHE
HAD COUGHED SO MUCH IN THE CAR SHE THREW UP IN THE PARKING LOT. SO MUCH FUN! WE
GOT HER ALL CLEANED UP AND HEADED IN. LUCKY FOR US ONCOLOGY ALWAYS CALLS DOWN
TO THE ER TO LET THEM KNOW WE ARE ON OUR WAY SO EVERYTHING IS ALWAYS SET UP AND
WAITING FOR US. WE WERE CHECKED IN AND IN A ROOM WITHIN JUST A FEW MINUTES. THE
ER PHYSICIAN THAT MORNING SAID SHE HAD A SLIGHT FEVER AND HER HEART RATE WAS
PRETTY LOW- ALL SIGNS SHOWING SHE WAS FIGHTING SOMETHING WE JUST DIDN’T KNOW
WHAT...YET! THEY QUICKLY TOOK SOME BLOOD FOR LABS AND CULTURES, A NOSE SWAB, STARTED
IV FLUIDS, AND A ROUND OF ANTIBIOTICS. </span></div>
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<span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;">WITH BEING IN THE MIDST OF FLU
SEASON THEY WERE PREPPING US FOR TREATING THE FLU, BUT THEY WERE CHECKING FOR ALL SORTS OF THINGS JUST TOO BE SURE. HER COUNTS ALL
COME BACK IN THE “OKAY” WHICH MEANT WE WERE NOT GOING TO BE ADMITTED, SO WE GOT
HER SOME MORE FLUIDS AND WAITED FOR THE REST OF THE LAB RESULTS….</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzb8XxKL0h_yHk_Qw3VQMvn2yMRerPemcNmEz82nZeLcYvz1wtPX2RwBSLegaQYsZ-3YvnEdiLfU6_e_Mb9UipOrTU2l0wuk6eZQmMUDwRjDY8jMS7iE5PaRTLUzxzLE0Ola3jfFrHeP7J/s1600/IMG_0229+(2).jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzb8XxKL0h_yHk_Qw3VQMvn2yMRerPemcNmEz82nZeLcYvz1wtPX2RwBSLegaQYsZ-3YvnEdiLfU6_e_Mb9UipOrTU2l0wuk6eZQmMUDwRjDY8jMS7iE5PaRTLUzxzLE0Ola3jfFrHeP7J/s1600/IMG_0229+(2).jpg" height="320" width="320" /></a></div>
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<span style="font-size: xx-small;"> </span><span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;"><span style="font-size: xx-small;">NOT FEELING TOO GOOD- WAITING FOR SOME OF THE GOOD STUFF TO KICK IN</span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzChNkd6H01wrn8K24K0u7Xt-AYW7Jft-vxFRIpdRfBYCufKZXg3WM95qjZ95L3S7aiIKEKtsx9qsYEyWLJiriZwbWFTqU0q5tSauawZvlr8LIcXBs5P7d2opoun9MmA-1ahBoeSLRpgrP/s1600/IMG_0221-1.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzChNkd6H01wrn8K24K0u7Xt-AYW7Jft-vxFRIpdRfBYCufKZXg3WM95qjZ95L3S7aiIKEKtsx9qsYEyWLJiriZwbWFTqU0q5tSauawZvlr8LIcXBs5P7d2opoun9MmA-1ahBoeSLRpgrP/s1600/IMG_0221-1.JPG" height="320" width="320" /></a></div>
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<span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;">ABOUT 3 HOURS LATER THE NURSE TOLD US LADYBUG TESTED POSITIVE FOR CORONAVIRUS…. WHAT? </span></div>
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<span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;">YEA, EXACTLY OUR THOUGHTS! WHAT THE HELL IS
THAT? CORONAVIRUSES ARE COMMON VIRUSES THAT MOST PEOPLE GET AT LEAST ONCE IN
THEIR LIFETIME, WITH YOUNG CHILDREN BEING THE MOST LIKELY INFECTED. IT'S A MILD TO MODERATE UPPER-RESPIRATORY TRACT ILLNESS. NOT USUALLY A BIG DEAL UNLESS YOUR A KIDDO WITH A COMPROMISED IMMUNE SYSTEM. BECAUSE IT IS A VIRUS THERE IS NOT A WHOLE LOT THEY CAN DO FOR HER... FLUIDS, SOME MEDS TO TREAT THE FEVERS, SOME SNUGGLES AND FROZEN! BASICALLY WAIT IT OUT AND HOPE IT DOESN'T FORM INTO SOMETHING OF A MORE SERIOUS NATURE. </span></div>
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<span style="font-size: xx-small;"> </span><span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;"><span style="font-size: xx-small;">WHAT DID WE EVER DO WITHOUT FROZEN?!? </span></span><br /><span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;"></span><span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;"></span></div>
<br />
THE MAIN GOAL WAS TO KEEP HER
RESTED AND HYDRATED AND AVOID THIS TURNING INTO PNEUMONIA. SO, WE STOCKED UP ON SOME OF HER FAVORITE SNACKS, A FIIZ TREAT, MOVIES, AND SNUGGLED UP DOWNSTAIRS FOR A WEEKEND OF REST AND RELAXATION... <br /><br />
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<span style="font-size: xx-small;"> </span><span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;"><span style="font-size: xx-small;"> WE MAY HAVE FALLEN ASLEEP WAY BEFORE SHE DID :|</span></span></div>
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<span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;">BY SATURDAY NIGHT THE FEVERS WERE ALL GONE AND WE WE'RE ALL GETTING A LITTLE STIR CRAZY! </span></div>
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<span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;">SO, WE DECIDED TO HAVE A LITTLE COOKIE BAKE OFF. MOM AND DAD DID LOTS OF BAKING (AND FAILED MISERABLY) AND LADYBUG DID THE DISHES, OR WENT SWIMMING DEPENDING ON HOW YOU LOOK AT IT :)</span></div>
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<br /><span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;">PERFECT END TO A CRAZY WEEKEND! </span></div>
Anonymoushttp://www.blogger.com/profile/00163471267380896406noreply@blogger.com0tag:blogger.com,1999:blog-103481517630554669.post-489606546852835892015-01-29T13:43:00.004-07:002015-01-29T13:43:27.754-07:00Trying Something New...<!--[if gte mso 9]><xml>
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INTEGRATION, GROWTH, DEVELOPMENT, AND EMOTIONAL OR TRAUMATIC RESOLUTION… THIS
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<span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt;">FOR MORE INFORMATION ON PLAY THERAPY VISIT THE <a href="http://www.a4pt.org/?page=PTMakesADifference">ASSOCIATION OF PLAY THERAPY</a> </span></div>
Anonymoushttp://www.blogger.com/profile/00163471267380896406noreply@blogger.com0tag:blogger.com,1999:blog-103481517630554669.post-15638926308745826012015-01-28T09:16:00.001-07:002015-01-28T09:16:24.376-07:00What If...<!--[if gte mso 9]><xml>
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<div class="MsoNormal">
<span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;">LATELY I FEEL LIKE OUR LIVES HAVE JUST BEEN FULL OF <i style="mso-bidi-font-style: normal;">“WHAT IFS”.</i> LADYBUG HAS REALLY BEEN
STRUGGLING LATELY AND HAS REALLY GOTTEN GOOD AT FLEXING HER INDEPENDENCE, ALL
THINGS THAT CAN BE “NORMAL” TWO YEAR OLD BEHAVIOR… BUT MY HEART AUTOMATICALLY
SINKS EACH TIME AND I DRIFT TO A PLACE OF <i style="mso-bidi-font-style: normal;">WHAT
IF</i>! <i style="mso-bidi-font-style: normal;">WHAT IF</i> THE TUMORS ARE NOT
STABLE? <i style="mso-bidi-font-style: normal;">WHAT IF</i> THEY’VE STOPPED
RESPONDING TO TREATMENT? <i style="mso-bidi-font-style: normal;">MAYBE</i> THAT’S
WHY SHE DIDN’T EAT TONIGHT… <i style="mso-bidi-font-style: normal;">MAYBE</i>
THAT’S WHY HER SLEEP HAS BEEN SO OFF… <i style="mso-bidi-font-style: normal;">MAYBE
</i>WE HAVE A PROBLEM…… </span><i style="mso-bidi-font-style: normal;"><span style="font-family: "Corbel","sans-serif";">OR</span></i><i style="mso-bidi-font-style: normal;"><span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;">
MAYBE</span></i><span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;"> SHE’S JUST TWO?!?</span></div>
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<br /></div>
<div class="MsoNormal">
<span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;">IT’S A CONSTANT STRUGGLE. JUST WHEN WE GET A HANDLE ON
ONE ISSUE IT FEELS LIKE ANOTHER ONE POPS UP. WE’RE ALWAYS ON GUARD, ALWAYS! EVERY
MOMENT OF EVERY SINGLE DAY WE FIND OURSELVES TRYING TO SORT THINGS OUT. LADYBUG
DIDN’T EAT DINNER; IN FACT SHE REFUSED TO EVEN LEAVE OUR BED, SHE JUST WANTED
TO LAY THERE AND RELAX? IMMEDIATE PANIC SETS IN… IS SHE SICK? CHECK HER
TEMPERATURE. IS SOMETHING WRONG- MOUTH SORES? DIAPER RASH? MAYBE SHE JUST
WANTED TO WATCH FLICKA?!? IT DOESN’T MATTER WHAT “IT” IS. YOUR HEART ALWAYS
SINKS AND TAKES YOUR MIND TO A PLACE IT SHOULDN’T GO. IT CAN BE THE SIMPLEST OF
THINGS… COUPLE DAYS AGO SHE STARTED POTTY TRAINING HERSELF, TWO DAYS LATER… SHE’S
REFUSING TO GO. IMMEDIATE STRESS AND PANIC SETS IN… ARE WE GOING TO HAVE TO
FIRST HIGH SCHOOL SENIOR NOT POTTY TRAINED? HOW DO YOU POTTY TRAIN SOMEONE WHO
SPENDS HALF THE MONTH IN THE HOSPITAL AT APPOINTMENTS? SHE’S ALMOST 3 AND
EVERYONE KEEPS ASKING IF SHE’S POTTY TRAINED… MAYBE WE HAVE A PROBLEM? </span><span style="font-family: "Corbel","sans-serif";">OR</span><span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt; line-height: 115%;"> MAYBE SHE’S GOING THROUGH A
LOT AND WE SHOULD JUST CUT OURSELVES A BREAK……</span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal;">
<span style="font-family: "Corbel","sans-serif"; font-size: 10.0pt;">WE, OKAY PROBABLY MORE ME THAN ANYONE ELSE,
HAVE STRUGGLED WITH THAT A LOT THE LAST FEW WEEKS. YOU GET SO USE TO HEARING
BAD NEWS ALL THE TIME YOU’RE CONSTANTLY BRACING FOR IMPACT. PREPARE FOR THE
WORST, HOPE FOR THE BEST… YEAH, THAT’S HOW WE LIVE! SITTING WITH SOME
GIRLFRIENDS THIS WEEKEND AS THEY TELL ME TO CUT MYSELF A BREAK I REALIZED THE <i style="mso-bidi-font-style: normal;">“WHAT IFS”</i> ARE GOING TO TEAR US APART.
THEY ARE GOING TO RIP US TO SHREDS AND LEAVE US IN A BROKEN PILE. <b style="mso-bidi-font-weight: normal;">HELL YES THIS SUCKS! IT SUCKS REALLY BAD</b>!
WE HAVE A LOT OF BAD DAYS, BUT DAMN IT WE HAVE SOME PRETTY GREAT ONES AS WELL. WE
HAVE AN INCREDIBLY SMART, BEAUTIFUL, INDEPENDENT DAUGHTER WHO GIVEN EVERYTHING
SHE GOES THROUGH HANDLES EACH AND EVERY DAY WITH SUCH STRENGTH. SO SHE’S STILL
IN DIAPERS, THAT’S OKAY! SHE’S ALSO GOING THROUGH CHEMO AND KICKING ITS ASS!
SURE, WE HAVE A FEW OF THE “STANDARD” DEVELOPMENTAL MILESTONES’ TO HIT… BUT WE’RE
HITTING OUR OWN MILESTONES! THIS IS OUR LIFE; IT’S DIFFERENT FROM OUR
NEIGHBORS, OUR FRIENDS, AND OUR FAMILY. WE HAVE OUR OWN TRIALS, AS DO THEY. ALL
WE CAN DO IS GET UP EVERY MORNING AND PUT OUR BEST FOOT FORWARD AND ENJOY THE MOMENT!
OUR GOAL FOR THE UPCOMING MONTH… CELEBRATE THE LITTLE VICTORIES AND STRESS LESS
ABOUT THE THINGS WE HAVE NO CONTROL OVER!</span></div>
Anonymoushttp://www.blogger.com/profile/01956491029265787954noreply@blogger.com0tag:blogger.com,1999:blog-103481517630554669.post-37612357644459590192015-01-18T17:15:00.001-07:002015-01-18T17:15:03.688-07:00Chemotherapy- Round 9<div class="MsoNormal">
<span style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;">WOWZA! Round
#9 is in the bag! Done and Done! Things started out pretty well. LadyBug was in
a great mood. The stars were alligned...Our favorite nurse was there, getting access was quick and painless (well, as painless as it could be). Everything was going great! This month was a pretty easy month for us, no scans, no additional test. Just chemo and home! We were looking forward to a quick visit! </span></span></div>
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<span style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiecWlHcfdOz7VTsCpD-qE2lLdmN7djBdsB6o4U33F6bnc8MpuRYECN5Q8vWzVZOT9q7wJXTU-h003Xcqn46UGVFeRd4TrHTrtUhpFWAHLy4PYl-Hzb4UdkFWZTNmMF4FNmLKmQXwRfy7yN/s640/blogger-image--889666038.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiecWlHcfdOz7VTsCpD-qE2lLdmN7djBdsB6o4U33F6bnc8MpuRYECN5Q8vWzVZOT9q7wJXTU-h003Xcqn46UGVFeRd4TrHTrtUhpFWAHLy4PYl-Hzb4UdkFWZTNmMF4FNmLKmQXwRfy7yN/s640/blogger-image--889666038.jpg" /></a></span></span></div>
<br />
<span style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;">Then things got interesting... LadyBug started coughing and coughing. Nothing major. Just seemed like a little cough to us. But, it peaked all the nurses interests. They all came running. Turns out kids have been know to have an allergic reaction to the Carboplatine as the treatment goes on. Everything was halted until the nurses could review her symptoms with her doctors. The nurses monitored her closely, no rash appeared, blood pressure was stable, and her breathing was fine so the medical team cleared us to continue forward.</span></span><br />
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<span style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtcSC5kzlVsr9lt6_jmq22TSB5S5mciAEb437zrsl_CnFYCNLhaUvkHCIJj3MjnA5J6CJYRF40JJ9aVBMLGuKZxztQV8YF-J4lBpJ4nmTD939Job3wl-rMD20_n6uJ_ETYUKaYaOpgszky/s640/blogger-image-1542222427.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtcSC5kzlVsr9lt6_jmq22TSB5S5mciAEb437zrsl_CnFYCNLhaUvkHCIJj3MjnA5J6CJYRF40JJ9aVBMLGuKZxztQV8YF-J4lBpJ4nmTD939Job3wl-rMD20_n6uJ_ETYUKaYaOpgszky/s640/blogger-image-1542222427.jpg" /></a></span></span></div>
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<span style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;">Didn't last long... within a few minutes of starting back up the cough returned. So, we stopped again and waited to see the doctors. LadyBug still looked fine but the symptoms were worrying everyone just a little...She started getting really cranky and just over all miserable. Good thing we had daddy, Netflix, and a sucker to hold us over until the doctor stopped by for a visit! </span></span></div>
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<span style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><span style="font-size: xx-small;">When you're not feeling well you can get daddy to do just about anything :) </span></span></span></div>
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<span style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZmlbxegD9DLulunpvhXIidZ39XW7H5dThE95nv8_Q7uvZsk0_6wGzfZSSm2u9j1_xH_WSwVTOaa_6wEmjK4RlgGCrABbIiICOZ4x5tUXPF0bQrMGZmXgi6-OinqVH5-cOUyhqKMRSZ2rf/s640/blogger-image-1820656994.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZmlbxegD9DLulunpvhXIidZ39XW7H5dThE95nv8_Q7uvZsk0_6wGzfZSSm2u9j1_xH_WSwVTOaa_6wEmjK4RlgGCrABbIiICOZ4x5tUXPF0bQrMGZmXgi6-OinqVH5-cOUyhqKMRSZ2rf/s640/blogger-image-1820656994.jpg" /></a></span></span></div>
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<br /><span style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;">We're so close. Only 3 more treatments to go. No one wants to stop this protocol and start a new one... It would mean a whole new treatment plan! NO ONE wants that, and I mean NO ONE! So, we slowed things down this month. This particular chemo takes about an hour and fifteen minutes to get, so we added about thirty minutes to see if that helps. Seemed to do the trick this time. Next month, we will give her a dose of Tylenol and Benadryl before we start chemo and pray this does the trick! With only 3 more treatments to go we just need a little fix, something that will hopefully get us over this last little hump....</span></span></div>
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<span style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;">After the infusion was all done we packed up and high-tailed it out of there! Ladybug was alseep before we were even out of the hospital parking lot. This little girl is definitely stronger than any person I have ever met! Prayers for next month- we're going to need them! </span></span><br />
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<span style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><br /></span></span></div>
Anonymoushttp://www.blogger.com/profile/00163471267380896406noreply@blogger.com0tag:blogger.com,1999:blog-103481517630554669.post-54520445347958221782015-01-18T16:44:00.002-07:002015-01-18T18:00:19.221-07:00Sleep Study<!--[if gte mso 9]><xml>
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<div class="MsoNormal"><span style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGOKLO-AU0hLR6F7mx71LweUYpacnTdqkEoHmgBlSUHUXQGm1zNrlvi_MfdZvn8j1jZJngtlF8xT3iSUO_CRpIAjqth-9GP0zzueS2ct2eUjIUjtW-rRcoaFlV5DPZsKwlu_iOveBlVd4T/s640/blogger-image--1385318155.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGOKLO-AU0hLR6F7mx71LweUYpacnTdqkEoHmgBlSUHUXQGm1zNrlvi_MfdZvn8j1jZJngtlF8xT3iSUO_CRpIAjqth-9GP0zzueS2ct2eUjIUjtW-rRcoaFlV5DPZsKwlu_iOveBlVd4T/s640/blogger-image--1385318155.jpg"></a></div></span></span></div><div class="MsoNormal"><span style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;"><br></span></span></div><div class="MsoNormal">
<span style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;">The sleep
consultation appointment is scheduled!!! I cannot tell you what a sense of
relief this brings to us. LadyBug has never been a great sleeper but these last
few months have been complete torture. Knowing there may be an end in sight,
help for all of us is the most welcome news we have heard in a LONG time!
February 12<sup>th</sup> cannot come soon enough!</span></span></div>
<span style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;">
</span></span><div class="MsoNormal">
<br></div>
<div class="MsoNormal">
<span style="font-family: Verdana,sans-serif;"><span style="font-size: x-small;">For now we
track her sleep and wait for answers… </span></span></div>
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<m:mathFont m:val="Cambria Math"/>
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<div class="MsoNormal">
<span style="font-family: "Corbel","sans-serif";"><br></span></div>
<br>
<br>Anonymoushttp://www.blogger.com/profile/00163471267380896406noreply@blogger.com0