Almost There.

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

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

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