FROM THE BEGINING...........TO THE DIAGNOSIS

AS THE DAY BEFORE MADISON'S SECOND BIRTHDAY AND SHE JUST WASN'T ACTING LIKE HERSELF. I WASN'T THE ONLY ONE WHO NOTICED, THEY NOTICED AT SCHOOL TOO! HER APPITITE WENT FROM PIGGIE TO BIRD, AND SHE SEEMED TO BE IN A SLEEPY DAZE ALL OF THE TIME. SHE DEVELOPED A FEVER IN THE EARLY MORNING, BUT HAD NO OTHER SYMPTOMS OF AN ILLNESS. SHE STILL MANAGED TO HAVE FUN AT HER BIRHTDAY PARTY, ALTHOUGH SHE STILL SEEMED TO BE CLINGING ALITTLE TIGHTER THAN USUAL TO ME.

JULY 7th, 2000- TODAY MADDIE HAD HER 2 YEAR CHECK-UP WITH HER PEDIATRICAN. SHE STILL HAD THE FEVER (101.3) SO THEY HADTO HOLD OFF ON THE SHOTS (I'M SURE SHE DIDN'T MIND). HE THOUGHT THAT SHE JUST HAD A VIRUS, SO THEY RESCHEDULED HER SHOT FOR A WEEK LATER.
JULY 9th, 2000- MADISON STILL HAD A FEVER SO WE WENT BACK TO THE DOCTOR EARLIER THAN EXPECTED. THIS TIME HE SAID THAT IT WAS STREP THROAT, SO SHE WAS PUT ON ANTIBIOTICS.
JULY 19th, 2000- MADDIE WAS STILL EXPERIANCING FEVERS OFF AND ON, SO IT WAS BACK TO THE DOC'S OFFICE ONCE AGAIN. HE WAS THINKING BLADDER INFECTION THIS TIME SO THEY TOOK A URINE SAMPLE. THOSE RESULTS WERE INCONCLUSIVE SO HE WANTED TO RETEST HER IN TWO WEEKS.
JULY 23rd, 2000- WE HAD AN APPOINTMENT TODAY WITH THE OTHER DOCTOR IN THE PRACTICE. I JUST WANTED ANOTHER OPINION SINCE WE DIDN'T SEEM TO BE GETTING ANYWHERE WITH HER REGULAR DOC. AGAIN IT WAS ANOTHER DEAD END. HE THOUGHT THAT SHE PROBABLLY HAD A "DAYCARE ILLNESS", BUT TO BE SAFE HE ORDER A CBC (complete blood count) SO HE COULD RULE OUT THE "SERIOUS STUFF". THAT TEST CAME OUT NORMAL. DURING THIS VISIT MADISON WAS REFERED TO GO SEE AN ENT (ear/nose/throat), THE DOCTOR WAS CONCERNED ABOUT HOW DEEP HER VOICE WAS.
JULY 31st, 2000- TODAY WAS THE DAY MADISON SAW THE LOCAL ENT. WHEN HE EXAMINED HER HE COULDN'T FIND ANYTHING WRONG, BUT STILL INSISTED ON DOING SOME MORE PROBING. HE ENDED UP PUTTING A TINY CAMERA UP THE LEFT SIDE OF HER NOSE AND DOWN THE BACK OF HER THROAT TO GET A GOOD LOOK AT HER VOCAL CORDS. THE OUTCOME WAS THAT MADDIE HAD LITTLE CYSTS CALLED NODGELS ON HER CORDS, THAT WAS EXACTLY THE CAUSE FOR HER DEEP VOICE. BUT MY QUESTION WAS STILL UNANSWERED, WHAT WAS CAUSING HER FEVERS AND FATIGUE?
AUGUST 11th, 2000- I WOKE UP EARLY THAT MORNING, AND SOMETHING TOLD ME GO IN AND CHECK ON MADISON. WHEN I WENT IN HER ROOM WHAT I SAW WAS A LITTLE GIRL WITH DRIED BLOOD ALL OVER HER FACE AND PILLOW. I INSTANTLY WOKE HER UP, JUST TO BE SURE THAT SHE WAS OAKY. THE ONLY THING THAT WAS WRONG WITH HER WAS THAT SHE WANTED TO GO BACK TO SLEEP! I WASHED OFF HER FACE AND SAW THAT THE SITE SHE WAS BLEEDING FROM WAS FROM THE LEFT SIDE OF HER NOSE. THE BLEEDING STOPPED FOR THE MOMENT, NOW THE QUESTION WAS HOW DID THAT HAPPEN? I IMMEDIATELY RULED OUT HER HITTING SOMETHING BECAUSE SHE PROBABLY WOULD HAVE WOKE UP. I HAD GOTTEN BLOODY NOSES BEFORE FOR NO REASON SO FOR THE TIME BEING I JUST LET IT GO. AROUND NOON I RECIEVED A CALL AT WORK FROM MADDIE'S TEACHER, HER NOSE WAS BLEEDING AGAIN. IT WAS LIKE A RUNNY NOSE WITH BLOOD IN IT. I HUNG UP AND CALLED THE DOCTOR'S OFFICE. THE NURSE TOLD ME THAT I WAS ONLY BECAUSE THE AIR WAS DRY OUTSIDE, AND THAT IT HAPPENS ALL OF THE TIME. OAKY, IT'S JUST ALLERGIES......WHEN SUNDAY CAME AND THE BLEEDING DIDN'T STOP, I TOOK MADDIE INTO THE EMERGENCY ROOM. THEY TOLD ME THE SAME THING THAT THE NURSE DID ON FRIDAY. MONDAY I CALLED THE DOCTOR AND THEY GOT HER IN TO SEE A NURSE PRATIONER, SHE HAD NO CLUE TO WHAT WAS GOING ON SO WE HAD TO MAKE AN APPOINTMENT FOR THE NEXT DAY TO SEE HER REGULAR DOC AGAIN. TUESDAY SHE SAW HIM AND THE ONLY THING THAT HE TOLD ME WAS TO HAVE HER TAKE SUDIFED AND IF THE BLEEDING STILL DIDN'T STOP TO CALL AND THEY WOULD REFER US TO ANOTHER ENT. I ENDED UP JUST CALLING THE OFFICE LATER IN THE DAY AND HAD THEM MAKE THAT APPOINTMENT.
AUGUST 17th, 2000- TODAY MADISON HAD AN APPOINTMENT WITH ENT DR.PLOTNIK. HE COULDN'T SEE THE CAUSE OF THE BLEEDING SO HE SENT US OFF TO THE HOSPITAL TO HAVE HER GET PRE-OP BLOOD WORK DONE, AND HE WOULD PREFORM SURGEY THE NEXT DAY TO FIND THE SIGHT.
AUGUST 18th, 2000- TODAY WAS THE DAY, WE ARRIVED EARLY AT THE HOSPITAL BUT DIDN'T END UP GOING IN AT THE SCHEDULED TIME. THE DOCTOR WANTED TO DISCUSS SOME THINGS WITH ME FIRST, AND THEN HAVE ME SIGN THE CONSENT FORMS. THE DOCTOR WAS CONCERNED THAT THERE WAS A TUMOR IN THE SINUS THAT WAS CAUSING THE BLEEDING. BECAUSE OF HIS CONCERNS HE HAD ME SIGN A CONSENT TO LET HIM DO A BIOPSY ON ANY MASS THAT HE FOUND. THE SURGERY WAS TO ONLY LAST A HALF HOUR AND ENDED UP TAKING TWICE AS LONG. I WAS SO RELEIVED WHEN I SAW HER IN THE RECOVERY ROOM, I JUST RACED OVER AND HELD HER AS TIGHT AS I COULD. THAT'S WHEN THE DOCTOR APPROACHED ME WITH THE NEWS, YES INDEED THERE WAS A TUMOR GROWING UP THERE. HE GOT TWO DIFFERENT BIOPSYS OF IT, THE FIRST ONE CAME BACK BENIGN, AMD THE SECOND WAS A FROZEN SAMPLE THAT WOULD NOT BE BACK FROM PATHOLOGY FOR ABOUT 5 TO 7 DAYS. HE WANTED A CT SCAN DONE ASAP SO HE COULD SEE IF THEY COULD JUST GO IN AND SURGICLY REMOVE IT, OR IF IT DID INDEED EXTEND UP INTO THE SINUS WE NEEDED TO KNOW HOW BIG IT ACCUALLY WAS! SO SHE WAS TAKIN DOWN THE HALL WHERE A CT SCAN WAS PREFORMED, A FEW MINUTES AFTER WE WERE SENT HOME.
AUGUST 21st, 2000- THE PAST WEEKEND SEEMED MORE LIKE A WEEK, WITH THE RESULTS OF THE CT SCAN DUE BACK TO US ON MONDAY. THE DOCTOR FINALLY CALLED ME AROUND 2pm ON MONDAY, I JUST SO HAPPENED TO BE AT WORK AT THE TIME. I WASN'T PREPARED FOR THE BOMBSHELL THAT WAS ABOUT TO BE DROPPED ON ME. THE RUSLTS SHOWED THAT THETUMOR WAS EXTENDED UP INTO HER SINUS AND EATING AWAY AT THE BASE OF HER SKULL. HE TOLD ME THAT AT THIS POINT HE WOULD LIKE TO REFER US TO CHILDREN'S HOSPITAL OF PITTSBURGH. A CLOSE FRIEND OF HIS WAS AN ENT THERE AND WAS MORE QUALIFIED TO DEAL WITH MADISON'S CONDITION. HE DID STATE THAT HE HAS NEVER SEEN A MASS OF THIS SIZE AND POSITION TO BE BENIGN, HIS ULIMATE GUESS WAS THAT SHE HAD A FORM OF CANCER CALLED RHABDOMYOSARCOMA. I JUST COULDN'T BELIEVE WHAT I WAS HEARING AT THIS POINT. I HADTO CALL HIM BACK FIVE MINTES LATER AND HAVE HIM REPEAT THE WHOLE THING TO ME AGAIN. THE FIRST STOP THAT WE MADE ON OUR WAY HOME WAS TO OUR CHURCH. THERE OUR PASTOR, PASTOR SLOKA, GAVE US STRENGTH THROUGH PRAYER, AND GAVE MADISON A "HOPE" BEAR. THIS BEAR STOOD WITH HER EVERY STEP OF THE WAY FROM HERE ON IN, IT BROUGHT WITH HER LOTS OF COURAGE AND STRENGTH.
AUGUST 22nd, 2000- MADISON WAS ADMITTED INTO THE CHILDREN'S ICU TODAY. THE FIRST THING THEY DID WAS PUT IN AN IV, SHE HAD STILL HAD A BLOODY NOSE AND WAS VERY WEAK FROM ALL THAT SHE HAD LOST. LATER THAT NIGHT THEY DID AN MRI, AND THEN WE WERE LEFT FOR THREE DAYS TO PLAY THE WAITING GAME.
AUGUST 25TH, 2000- DR. WOLLMAN, NOW MADDIE'S ONCOLOGIST, SHOWED UP TO HER ROOM AROUND NOON. HE BROUGHT THE NEWS THAT THE PATHOLOGIST HAD INDEED CONFIRMED THAT MADISON HAD WHAT WAS CALLED LANGERHANS CELL HISTIOCYTOSIS. ONLY DAYS BEFORE WE WEREN'T SURE IF IT WAS LYMPHOMA, RHABDOMAYOSARCOMA, OR THIS. SHE WOULD NOW HAVE TO GET A PORT-A-CATH PLACED AND THEN WILL START HER CHEMO TONIGHT.