DAY +42

I CAN NOT BELIEVE WE HAVE BEEN IN THE HOPITAL FOR 50 DAYS TODAY. WE ARE ALMOST HALF WAY TO OUR 100 DAYS AND WE ARE STILL HERE. I HAVE NEVER REALLY BELIEVED THAT WE WOULD ONLY BE HERE FOR THE 100 DAYS. I HAVE ALWAYS FELT LIKE IT WOULD BE LONGER AND IT IS BEGINNING THO LOOK LIKE I AM RIGHT.

SORRY I DID NOT UPDATE YESTERDAY. I WAS TRYING TO CATCH UP ON SOME VERY MUCH NEEDED REST I HAVE BEEN LOOSING LATELY. AND IN BETWEEN THE REST I SPENT ALOT OF TIME PLAYING AND GETTING ALICIA SITTING UP AND EVEN TRIED TO GET HER OUT OF THE BED AND WALKING BUT THAT DID NOT WORK TO WELL. SHE CRIED VERY HARD AND SAID HER LEGS HURT. I AM GOING TO GET HER OUT OF BED EVERYDAY UNTIL SHE GAINS HER STRENGTH BACK. BESIDES ME TRYING TO MOTIVATE HER SHE ALSO HAD EVERYONE OF THE DIFFERENT THERAPISTS TRYING TO GET IN TO SEE HER SINCE HER SEIZURES THEY WERE ALL WORRIED ABOUT ANY DAMAGE AND WANTED TO MAKE SURE SHE WAS UP TO PAR IN ALL AREA'S. BESIDES HER LEGS AND ARMS HURTING SHE SEEMED TO BE DOING OK BUT ONLY TIME WILL TELL THEY SAY. ALICIA EVEN SURPRISED ME YESTERDAY. THE MEDICINE THAT THEY ARE GIVING HERE NOW INSTEAD OF THE CYCLOSPORIN THAT CAUSED THE PROBLEMS CAME YESTERDAY AND IT IS ONLY AVAILABLE IN PILLS. OF COURSE BEING THE PROTECTIVE ME-MA I TOLD THE NURSES THAT SHE HAS NEVER TAKEN A PILL EVER BEFORE AND I DID NOT THINKD SHE WOULD BE ABLE TO DO IT BUT I TOLD THEM I WOULD TRY AND OF COURSE ALICIA PROVED ME WRONG. SHE PUT IT IN HER MOUTH AND TOOK A DRING AND DOWN IT WENT. I WAS SOOOOOO HAPPY I WAS JUMPING UP AND DOWN. WE HAD TO CALL MOMMY AND NE-NE AND TELL THEM ALICIA TOOK HER FIRST PILL. OK I KNOW I SOUND RETAREDED BUT IT WAS REALLY COOL.

BUT OF COURSE ALICIA HAD TO GIVE US ANOTHER LITTLE BUMP YESTERDAY. I TOLD ERIN ( ALICIA'S NURSE, ONE SHE IS ACTUALLY NICE TO NOW) THAT IF EVERY THING WENT GOOD TODAY THAT I WOULD PROBABLY FALL OVER AND OF COURSE ALICIA SPIKED A FEVER. SHE KEPT IT MOST OF THE EVENING BUT FINALLY IT WENT AWAY WHEN SHE WENT TO SLEEP FOR THE NIGHT, SO MORE CULTURES AND TESTS TO SEE WHY SHE IS ALWAYS GETTING FEVERS.

SHE DID EAT A LITTLE YESTERDAY. IT STARTED OUT IN THE MORNING WITH HALF OF A BOWL OF CEREAL. I WA SO HAPPY BUT THEN SHE DID NOT EAT UNTIL LATER IN THE EVENING, SHE STARTED OUT WANTING SPEGHETTI SHE TOOK THREE BITES, THEN SHE DIDN'T WANT THAT SHE WANTED PUDDING, AFTER I GOT THE PUDDING AND TWO BITES LATER SHE DIDN'T WANT THAT SHE WANTED A HOT DOG AND MAC AND CHEESE, OF COURSE THAT DIDN'T TASTE GOOD THEN SHE WANTED DORA SNACKS, AFTER TWO BITES OF THOSE I FIGURED WITH A COUPLE OF BITES OF EVERYTHING SHE TRIED THAT SHE HAD GOT PLENTY IN HER TUMMY. BOY HOW I WISHED FOR CHICKEN NUGGETS LAST NIGHT.

ALICIA AND HER FAVORITE MEAL....................................


YESTERDAY ALICIA WAS ALSO ASKING FOR MY OLDEST SISTER KELLI ALOT. SHE MADE ME CALL HER AT WORK TWICE JUST SO SHE COULD TELL HER SHE WANTED TO GO OVER HER HOUSE, SHE KEPT TELLING HER TO PLEASE COME GET HER AND THAT SHE WANTED TO GO OVER HER HOUSE AND EAT. MY SISTER FELT SPECIAL, AND SHE PROMISED THAT SHE WOULD COOK ALICIA HER VERY FIRST MEAL WHEN SHE GETS ALL BETTER. THANKS KELLI. ( BUT SHE WILL PROBABLY JUST WANT CHICKEN NUGGETS SO IT SHOUDN'T BE THAT HARD TO FIX)

ALICIA ALSO GOT FOUR PACKAGES IN THE PAST TWO DAYS. THEY WERE THE MOST AWESOME PACKAGES. I SEEN HER SMILE SO MUCH EVERY TIME ANOTHER ONE CAME. THANK YOU SO SO SO MUCH EVERYONE FOR MAKING MY BABY SMILE. A SPECIAL THANKS TO MY MOM'S CO-WORKERS AT TALL GRASS IMAGING. THEY ALL WENT OUT AND GOT ALICIA SOMETHING AND SENT HER A HUGE BOX FULL OF AWESOME TOYS. WE ARE PLANNING A PRINCESS'S BALL THIS WEEKEND WITH HER MOMMY AND SHE CAN NOT WAIT TO WEAR HER WHOLE PRINCESS OUT FIT. I WILL TAKE ALOT OF PICTURES I PROMISE. HER IS A PICTURE WITH SOME OF THE THINGS THAT MY MOMS AWESOME FRIENDS SENT....................

ALSO ANOTHER HUGE SPECIAL THANKS TO KRISTIN, WESLEY, COLIN AND QUINN FOR THE OTHER HUGE BOX OF GIFTS YOU SENT ALICIA. SHE PLAYED WITH THE LIGHT BRIGHT ALL DAY YESTERDAY AND SHE LOVED THE SPINNING BALL THAT LIT UP ALONG WITH EVERY THING ELSE YOU SENT. ALICIA JUST KEPT SAYING "ITS MY BIRTHDAY" IT WAS SO CUTE. SHE LOOKED SO TIRED BUT SHE FOUND SOME ENERGY LEFT INSIDE TO SMILE ALL DAY BECAUSE OF ALL OF THE SPECIAL GIFTS SHE GOT. THANKS SO MUCH KRISTIN!!!!!!!! HERE IS A PICTURE OF SOME OF WHAT THEY SENT (NOT ALL IS IN THIS PICTURE, THERE WAS ALOT MORE)

I ALSO WANT TO TELL RONI AND RALPH, THEY ARE WHO I WORKED FOR FOR ALMOST ELEVEN YEARS AND ERIKA STII WORKS THERE. THANK YOU VERY MUCH FOR ALL OF THE GOODIES YOU SENT TO ALICIA. MY FAVORITE OF COURSE WAS THE SHIRT THAT SAID "MY HEART BELONGS TO GRANDMA" ALICIA LOVED THE LITTLE SUN DRESS. SHE MADE ME PROMISE THAT SHE CAN WEAR IT THE FIRST DAY WE LEAVE HERE. SINCE SHE TALKED THE NURSES INTO LETTING HER PUT HER OTHER NEW ONE ON A COUPLE OF WEEKS AGO SHE PROMISED SHE WOULD WAIT AND WEAR IT ON HER SPECIAL DAY. I PROMISE TO TAKE PICTURES AND SEND YOU SOME WITH HER PRETTY DRESS ON. THANK YOU ALSO FOR ALL OF THE SNACKS YOU SENT. I KNOW THEY ARE FOR ALICIA BUT I CAN NOT PROMISE SHE WILL GET THEM ALL TO HERSELF :)

AND LAST BUT DEFFINATLY NOT LEAST THANK YOU TO DIANNE AND MICHELLE AND JOHN FOR THE VERY CUTE SPONGE BOB PJ'S YOU SENT TO HER. SHE IS WEARING ONE OF THEM TOMORROW WHEN MOMMY COMES. I WILL TAKE PICS OF HER AND SEND SOME TO YOU ALSO. AND THANK YOU ALSO DIANNE FOR ALSO RISKING YOUR LIFE TO CHECK ON ALICIA. LOL :) I AM SO GALD YOGI DID NOT GET YOU.

WE GOT A VERY SPECIAL NEIGHBOR A FEW DAYS AGO. SHE ALSO HAS FA LIKE ALICIA, HER NAME IS SAM AND SHE HAS MADE ALICIA A VERY PRETTY STAINED GLASS FLOWER HANGER. IT IS SITTING ON THE OUTSIDE OF THE DOOR SINCE WE CAN NOT WIPE IT OR THE POAINT MIGHT COME OFF. SHE ALSO SENT THE CUTEST CARD SHE MADE OVER TO ALICIA THE FIRST NIGHT SHE GOT HERE. SHE STARTED HER CHEMO TWO DAYS AGO SO PLEASE EVERYONE KEEP HER AND HER MOM AND DAD IN YOUR PRAYERS.

I WILL UPDATE TOMORROW AFTER ALICIA'S BIG DAY. NOT ONLY IS MOMMY COMING BUT KAYLA AND WILL ARE GOING TO BE HERE AND KAYLA IS GOING TO STOP AND SEE ALICIA. (FINALLY SOMETHING TO LOOK FORWARD TO)

THANKS AGAIN TO EVERYONE FOR ALL OF YOUR SUPPORT. AND PRAYERS FOR ALICIA. I KNOW I HAVE SAID THIS ALOT OF TIMES BUT I COULD NOT DO THIS WITH OUT ALL OF THE SUPPORT I HAVE GOTTEN

RESULTS

FINALLY I GOT SOME ANSWERS!!!!!!!!!!!!!!!!!!! I HOPE THIS MAKES SINCE HOW I EXPLAIN IT BECAUSE THIS IS HOW I UNDERSTOOD WHAT WAS TOLD TO ME. I COULD HAVE A LITTLE WRONG BUT I HAVE ALOT GOING THROUGH MY MIND AND I AM SURE I WILL HAVE A MILLION QUESTIONS TOMMORROW BUT ALL I KNOW IS THAT MY BABY DOES NOT HAVE AN INFECTION IN HER BRAIN OR ANY TYPE OF BLEEDING OR GVH PROBLEMS IN HER BRAIN.

DR. DAVIES CAME IN A LITTLE WHILE AGO WITH WHAT I CONSIDER GOOD NEWS. THE MRI SHOWED THAT WHAT WAS HAPPENING WITH ALICIA HAD TO DO WITH A MEDICATION SHE IS ON CALLED CYCLOSPORIN, IT IS USED TO SUPRESS THE IMMUNE SYSTEM AND ALSO HELPS FIGHT THE GVH. THE MRI SHOWED WHAT DR DAVIS CALLED A "PRESS" IN THE BACK OF HER BRAIN. HOW SHE EXPLAINED IT TO ME WAS ALICIA'S LEVELS OF THIS DRUG WAS HIGHLY ELEVATED WHICH CAUSED THE PRESS WHICH CAUSED THE SIEZURES.

THEY STOPPED THE CYCLOSPORIN YESTERDAY AND SAID THAT AS SOON AS THE LEVEL GETS BELOW 200 THAT SHE WILL PUT HER ON WHAT SHE SAID IS A COUSIN OF CYCLSPORIN CALLED FK506 WHICH IS ALSO AN IMUNE SUPRESSMENT.

SHE SAID THE PRESS ON HER BRAIN SHOULD GO AWAY WITH SINCE THE CYCLOSPORIN IS REMOVED. SHE SAID SHE WILL HAVE ALICIA ON THE DILANTEN (SEIZURE MEDICINE) FOR AS LONG AS SHE IS ON FK506 OR RETURNS TO CYCLOSPORIN. SHE SAID THE PRESS IS VERY MUCH REVERSABLE AND TREATABLE.

I WAS SO RELIEVED. I KNOW I WILL ACTUALLY GET SOME REST TONIGHT. ALICIA IS ACTING A LITTLE LIKE HERSELF AGAIN. SHE ASKED AGAIN FOR CHICKEN NUGGETS, AND I MET A FRIEND HERE NAMED REID AND SHE TOOK ME TO GET HER SOME. RIGHT NOW I WOULD GIVE ALICIA THE WORLD IF SHE ASKED FOR IT. I WOULD EVEN CATCH THE CHICKEN, PLUCK IT, AND MAKE IT INTO NUGGETS IF SHE WANTED ME TO.

THANK YOU TO EVERYONE FOR SO MANY PRAYERS THAT WERE SAID FOR HER IN THE PAST THREE DAYS. THE LORD HEARD THEM ALL AND HE TOUCHED ALICIA IN VERY MANY WAYS. MY BABY IS GOING TO BE OK!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

DAY +39

I WANT TO START BY SAYING THANK YOU FROM THE BOTTOM OF MY HEART FOR ALL OF THE PRAYERS AND SUPPORT EVERYONE HAS BEEN GIVING US. I FINALLY GOT THE CHANCE TO LOG ON TO A COMPUTER THIS EVENING AND I STARTED CRYING LIKE A BABY WHEN I SEEN HOW MANY PEOPLE HAD LEFT MESSAGE'S AND PRAYERS FOR ALICIA AND MY FAMILY. I TRUELLY BELIEVE THAT ALL THE PRAYERS THAT WERE SAID IN THE PAST 24 HOURS WERE HEARD AND I THANK EVERYONE SO MUCH.

I WANT TO SAY A VERY VERY SPECIAL THANKS TO A VERY DEAR FRIEND, KRISSTINA. I WOULD NOT OF MADE IT THROUGH THIS WITHOUT YOU!!!!!!!! THANK YOU KRISSTINA FOR BEING THERE FOR ME. YOU ARE VERY SPECIAL TO ME AND I AM SOOOO THANKFUL TO HAVE YOU AS A FRIEND.

NOW WHERE TO START.................... LETS JUST SAY YESTERDAY WAS THE MOST SCARIEST SITUATION I HAVE EER BEEN IN OR HAD TO SEE ALICIA GO THROUGH EVER.

IT HAPPENED SOME TIME AROUND 10 AM. THE DOCTORS HAD JUST DID ROUNDS ON ALICIA AND EVERYTHING WAS FINE. AS SOON AS THE DOCS LEFT THE ROOM ALICIA SEEMED TO BE ACTING STRANGE TO ME AND IN A MATTER OF SECOND HER ENTIRE RIGHT SIDE OF HER BODY STARTED TWITCHING AND SHE WASN'T MAKING ANY SINCE IN WHAT SHE WAS SAYING. I YELLED AT THE DOCS WHO WERE STILL JUST OUTSIDE MY DOOR AND WHEN THEY WALKED IN ALICIA WAS IN A FULL BLOWN SIEZURE. WHEN SHE CAME OUT OF IT WHICH HAD LASTED AROUND 2 MINUTES, SHE COULD NOT MOVE HER WHOLD RIGHT SIDE OF HER BODY AND SHE WAS NOT REACTING TO ANYONE. HER RIGHT PUPIL WOULD NOT DIOLATE, AND SHE WAS IN LIKE A OUTER SPACE STAGE. SHE WAS JUST LOOKING IN THE AIR. I FELT LIKE MY HEART WAS COMING OUT OF MY CHEST, I HAD NEVER BEEN SO SCARED IN MY LIFE. I HAD TO GO IN THE HALL SO I COULD BREATHE. THAT IS WHEN I CALLED TINA AND SHE WAS HERE IN A MATTER OF MINUTES.

THEY RUSHED ALICIA TO CT DO DO A SCAN ON HER BRAIN AND WHEN WE WERE THERE SHE HAD TWO MORE SIEZURES, ONE LASTED OVER FIVE MINUTES. THEY GAVE HER SO MUCH ADAVAN IN CT THAT THEY RAN OUT AND HAD TO GET SOME FROM THE ER JUST TO TRANSPORT HER BACK TO HER ROOM. THEY SAID SHE HAD SO MUCH ADAVAN ( I AM PROBABLY SPELLING THAT WRONG) THAT IT WOULD OF KNOCKED ME OUT. WHEN WE MADE IT BACK TO THE ROOM IS ABOUT WHEN TINA GOT HERE AND ALICIA WAS STILL NOT MOVING ANYTHING ON HER RIGHT SIDE. SHE WAS VERY MUCH IN A DAZED STATE BUT SHE KNEW WHAT WAS GOING ON BECAUSE WHEN SHE SEEN TINA SHE SMILED ( AT LEAST THE LEFT SIDE SMILED). I FORGOT TO MENTION THAT AFTER HER FIRST SIEZURE HER OXYGEN LEVEL DROPPED VERY FAST. IT GOT DOWN IN THE LOW 70'S AND THE STARTED GIVING HER 100% OXYGEN.

AFTER ABOUT 30 MINUTES DR JORDAN CAME IN AND SAID THE CT SHOWED A SPOT ON THE LEFT SIDE OF HER BRAIN. HE SAID IT WAS LOCALIZED IN JUST ONE AREA AND THAT IT WAS NOT ALL OVER BUT THEY WERE ERY CONCERNED. HE NAMED OFF SEVERAL THINGS IT COILD BE BUT HE WANTED ALICIA TO BE MOVED TO THE ICU TO BE MONITORED UNTIL THEY HAD THE SIEZURES UNDER CONTROL WITH MEDICATION.

IN THE ICU THE GAVE HER A VERY LARGE AMOUNT OF DILATINE ( HOWEVER YOU SPELL IT) AND IT SEEMED TO STOP HER FROM SIEZING. SHE DID HAVE ONE MORE IN THE ICU BUT IT DID NOT LAST LONG.

HER LITTLE BODY WAS SO TIRED FOR ALL THE SIEZURES, THEY SAID IT TAKES ALOT OUT OF SOMEONE TO HAVE ONE. I JUST SAT AND WATCHED ALICIA LIKE A HAWK. BEFORE WE WENT TO ICU BOTH OF ALICIA'S PUPILS WERE NOT DIOLATING AND SHE COULD BARELY MOVE HER LEFT ARM EITHER BUT AROUND SEVEN LAST NIGHT ( I THINK) SHE STARTED GAINING A LITTLE USE EVEN ON HER RIGHT SIDE. I WAS SOOOOO HAPPY TO SEE THAT. I THOUGHT MY BABY WAS PARALIZED. IN THE ICU THEY ASKED HER WHAT MY NAME WAS AND SHE COULD NOT TELL THEM. I ABOUT LOST IT THEN ALSO UNTIL WHEN ALL OF THE NURSES WERE MESSING WITH HER I HEARD HER YELL MEE-MA. IT WAS THEN I KNEW SHE WAS GOING TO BE OK. SHE STARTED TALKING A LITTLE AFTER THAT BUT SHE WAS SLURRING ALOT. ALL I COULD UNDERSTAND WAS CANDY AND CHICKEN NUGGETS AND SHE SAID THAT ALL NIGHT. (AND YES SHE DID GET CHICKEN NUGGETS TODAY RIGHT WHEN WE GOT BACK TO THE FLOOR)

DOCTOR DAVIES CAME THIS MORNING AND SEEN US AND SHE WANTED TO PUT THE MRI OFF UNTIL TOMORROW MORNING, SHE THINKS THAT A MEDICINE CALLED CYCLOSPORIN COULD BE CAUSING THIS. IT IS A MED TAHT SUPPRESSES THE IMMUNE SYSTEM, AND IT WAS HELPING WITH THE GVH. SHE TOOK HER COMPLETELY OFF OF IT TODAY AND WANTS TO SEE IF THERE IS ANY CHANGE TOMORROW IN THE MRI WITH THAT. THEY ALSO DID A SPINAL TAP WHICH THE RESULTS CAME BACK GOOD.

WE SHOULD KNOW MORE TOMORROW AS TO WHAT IS GOING ON. I WILL LET EVERYONE KNOW WHEN I DO.

ERIKA HAD A VERY VERY VERY HARD TIME WITH THIS LAST NIGHT. SHE FELT LIKE SHE COULDN'T DO ANYTHING BECAUSE SHE IS SO FAR AWAY. BUT I KNOW SHE HAS 100% TRUST IN ME THAT I AM MAKING SURE ALICIA IS GETTING THE BEST CARE EVER AND SHE WILL BE HERE IN FOUR DAYS.

ALICIA IS SLEEPING NOW SO I BETTER DO THE SAME. I HAVE NOT SLEPT IN OVER 30 HOURS AND I AM SCARED TO CLOSE MY EYES INCASE SHE HAS ANOTHER SEIZURE. AND WHEN I DO CLOSE MY EYES ALL I CAN THINK ABOUT IS WHAT I JUST SEEN HER GO THROUGH.

THANKS AGAIN SO MUCH FOR EVERYONES PRAYERS!!!!!!!!

Hello,
This is Krisstina updating for Michelle.
Alicia has had a horrible day today.
Michelle said she was fine at 9 AM this morning and around 10:30 she started seizing. They took her to CT immediately. She had about 4 or 5 seizures. She had a seizure while in the CT machine. They had given her Ativan, Ativan is in a group of drugs called benzodiazepines (ben-zoe-dye-AZE-eh-peens). Ativan affects chemicals in the brain that may become unbalanced.
They brought her back to her room. Michelle actually called me while they were working on her during the first or second seizure, her oxygen went down to the mid 70's. I hurried out the door to be with her. At that point we were just waiting to hear what was on the CT. They came in and said she had a spot on her brain, it was a bit fuzzy but they were going to do more testing. They were planning a CT of the rest of her body, an MRI of the brain, a spinal tap, and tons of bloodwork. As they were looking around and checking her out they noticed her right side would not move. She was paralyzed on the right side until about 4 PM. She started moving and talking slowly but surely she was acting more like herself. Her pupils were unresponsive until around this time as well. She still is not the Alicia I know she is slurring a bit and her eyes are rolling back a little. We assume all these medications are the cause. They had given her a large amount of another anti-seizure medication and they said it may make her a bit loopy.

They are doing a CT tonight of the rest of her body to check for other spots of GVHD and a MRI tomorrow to get a more definitive picture of what this spot is.
They have been saying it could be a clot, GVHD, or a couple of other things. Since she has been dealing with the GVHD of the gut they are thinking that is what it is most likely to be.
Her blood gases were a bit off all day, they finally came down tonight, after a high pressure oxygen tube being in her nose. I left there about 1 hour ago and she was doing better, just very mad. She wants to eat and can't since she is getting the scans done. She was changed over to regular oxygen, since her levels came back better. So now it's just waiting. They will move her back to her room if she stays stable. They should know more answers tomorrow.
Thank you so much for checking in on Alicia and Michelle you have no idea how much that means to them. Michelle is very upset and would just like to ask "Please Pray for her"!

Thank you again,
Krisstina

DAY +38

HAPPY BIRTHDAY ANSHON!!!!!!!!!!!! ANSHON IS ERIKA'S FIANCE' AND THE FATHER OF MY TWO GRANDSONS. I HOPE YOU HAVE A GREAT DAY ANSHON!!!!!!!!!!!

SORRY I DID NOT UPDATE YESTERDAY. THEY SWITCHED US TO A DIFFERENT ROOM AND THEY DID NOT BRING ME A COMPUTER UNTIL LATE LAST NIGHT. ALICIA'S NEW ROOM IS NOW 505 IN AN, HER NEW PHONE NUMBER IS 513-636-1505.

ALICIA SEEMS TO BE DOING A LITTLE BETTER. SHE IS STILL ONLY EATING A LITTLE BUT I GUESS A LITTLE IS BETTER THAN NOTHING. DR JORDAN WHICH IS THE DOCTOR ON ROUNDS THIS WEEK TOLD HER "NO TUBE' IF SHE EATS AND TAKES MEDS, SO THAT IS HOW I AM BRIBING HER. SHE CALLS DR JORDAN THE "NICE DOCTOR" SO I THINK IS IS NOT WANTING HER TO STOP THINKING THAT AND HE IS WAITING AND LETTING THE NEXT DOCTOR BE THE "MEAN DOCTOR" AND PUT THE TUBE BACK. I SO HOPE NOT BECAUSE I BELIEVE THAT IS DOCTOR DAVIES.

ALICIA'S BP AND SUGAR LEVEL SEEM TO BE UNDER CONTROL FINALLY. AND HER COUNTS ARE LOOKING GOOD ALSO. NOW IF WE COULD JUST STILL GET THE GVH UNDER CONTROL WE WOULD BE DOING ALOT BETTER. HERE COUNTS TODAY ARE

WBC--6.9
HBG--12.2
PLAT--65
ANC--5.11

WOW HUH?

ALICIA IS GETTING TO BE SUCH A BIG GIRL. I WOULD NOT BE SURPRISED IF SHE DOES NOT HAVE A DEGREE BY THE TIME WE GET OUT OF HERE. SHE HAS BEEN FLUSHING HER OWN CENTRAL LINE AND PUSHING HER MEDS IN HER NG TUBE FOR A WHILE NOW. SHE HAS EVEN STARTED POKING HER OWN FINGER FOR BLOOD DRAWS TO CHECK HER OWN SUGAR LEVEL BUT YESTERDAY TOPPED IT ALL. I WALKED IN AND ALICIA WAS GIVING HERSELF HER OWN INSULIN SHOT. SHE CLEANED THE AREA WITH ALCHOHOL, PINCHED HER SKIN AND INJECTED AND PUSHED HER OWN INSULIN. NOW WHAT FIVE YEAR OLD WILL GIVE THEIR SELFS A SHOT????????

ERIKA WILL BE HERE IN FIVE DAYS!!!!!!!!!!!! I CAN NOT WAIT. ALICIA WAKES UP EVERY MORNING AND COUNTS HOW MANY DAYS TIL MOMMY COMES. SHE THINKS SHE GETS TO GO BYE-BYE WITH HER AND I KEEP TELLING HER THAT SHE HAS TO STAY WITH ME BUT SHE JUST TELLS ME, "NO DOCTOR SAID I GO WITH MOMMY, I HAVE TO" SO I DO NOT KNOW HOW I AM GOING TO OERCOME THAT YET.

WELL ALICIA IS WAKING UP SO OUR DAY IS ABOUT TO BEGIN. PLEASE PRAY WE HAVE A GOOD DAY.

HERE ARE SOME PICTURES I TOOK OF ALICIA JUST "MONKEYING AROUND"

DAY +36

HAPPY BIRTHDAY ERIKA!!!!!!!!!!!!!!!!!! I HOPE BY THE TIME YOU READ THIS THAT ALICIA HAS ALREADY GOT TO SING YOU THE HAPPY BIRTHDAY SONG. I MISS YOU VERY MUCH BABY AND I CAN NOT WAIT TO SEE YOU A WEEK FROM TODAY!!!!!!!!! I HOPE YOU HAVE A GREAT BIRTHDAY AND I SOOOO WISH I COULD SPEND YOUR SPECIAL DAY WITH YOU.

LAST NIGHT I WAS LAYING DOWN THINKING ABOUT 22 YRS AGO WHEN MY ONE AND ONLY CHILD WAS BORN AND I REMEBER VERY CLEARLY HOW BEAUTIFUL SHE WAS AND HOW HAPPY I FEELED. SHE HAS GROWN UP TO BE A VERY AWESOME MOM AND BEAUTIFUL WOMAN. (SHE GOT THAT FROM HER MAMA) THEN THE NEXT THOUGHT THAT CAME TO MY MIND WAS THE "LABOR DAY HOLIDAY" SHOULD BE FOR THE MOTHERS OF THE CHILD WHO'S BIRTHDAY IT IS!!!!!!!!!!!!! WE ARE THE ONES WHO ENDURED THE MANY HOURS OF "LABOR". I KNOW YOU PROBABLY THINK I AM LOOSING IT BUT AT LEAST I AM NOT TALKING TO THE BALLOONS STILL. :)

ALICIA GOT HER CHICKEN NUGGETS YESTERDAY!!!!!!!!!!!!!!!!!! I DECIDED TO CALL A CAB FROM THE HOSPITAL AND TAKE IT TO MCDONALDS TO GET HER SOME NUGGETS, BY THE TIME I GOT THERE AND BACK TO THE HOSPITAL THE FARE WAS $9.00 (IT IS ONLY FIVE BLOCKS AWAY) SO IT ENDED UP COSTING ME $12.00 FOR A HAPPY MEAL ( $9.00 TAXI + $3.00 COST OF HAPPY MEAL) THEN WHEN I GOT BACK TO THE ROOM ALICIA WAS TIRED AND ONLY ATE 2 NUGGETS, SO IF YOU BREAK IT DOWN THEY WERE $6.00 FOR EACH NUGGET. OF COURSE I HAD TO THROW THEM AWAY WHEN SHE DIDN'T WANT TO EAT ANY MORE DUE TO THE LOW BACTERIA. BUT LATER THAT NIGHT I GOT A CALL FROM TINA AND SHE HAD HER HUSBAND ON HIS WAY HERE WITH 20 MORE CHICKEN NUGGETS FOR ALICIA. SHE WAS SOOOOOO HAPPY WHEN SHE WOKE UP AND SEEN MORE NUGGETS. SHE EVEN BROUGHT HER THE CUTEST BEAR THAT SHE CUDDLED UP WITH AND WENT BACK TO SLEEP AFTER HER 2ND CHICKEN NUGGET SPREE. THIS IS A PICTURE OF HER AND THE BEAR......



ALICIA DID FARELY WELL YESTERDAY. THEY ARE STILL HAVING PROBLEMS WITH HER BLOOD PREASURE PLAYING LITTLE TRICKS. I HAVE NO IDEA WHAT THIS MEANS BUT NOW THEY ARE WORRIED THAT THE TWO NUCMERS ARE SO CLOSE TOGETHER. HER BOTTOM NUMBER IS STIL HIGH, LAST NIGHT WHEN THEY WERE WORRIED IT WAS AT 105/89???????????????

BELOW IS THE PICTURES I PROMISE YESTERDAY OF WHEN SHE HAD WENT DOWNSTAIRS TO THERAPY. THE FIRST IS OF HER STILL ON THE FLOOR LOOKING UP AT ME TELLING ME SHE COULDN'T WALK..................


AND THE NEXT ONE IS OF HER IN THERAPY WHILE WE WERE PLAYING "DON'T BREAK THE ICE"

I KNOW I HAVE NOT UPDATED ON ALICIA'S COUNTS LATELY SO HERE THEY ARE AS OF YESTERDAY THE 24TH. I HAVE NOT SEEN THE ONES FROM TODAY YET......

WBC-4.2
HBG-8.5
PLATELETS-31 (SHE RECIEVED SOME LAST NIGHT )
ANC-3.40

THEY ALL WERE SLIGHTLY HIGHER THAN THOSE THE DAY BEFORE BUT THEY HAD STOPPED THE MEDICINE USED TO HELP BOOST HER COUNTS TO SEE IF HER BODY WILL START KEEPING UP ON ITS OWN.

ALICIA JUST WOKE UP SO I WILL HAVE TO UPDATE MORE LATER......

DAY +35

I AM VERY SORRY I DID NOT GET TO UPDATE ON ALICIA YESTERDAY. THE HOSPITAL HAS BENN HAVING TROUBLE WITH THEIR INTERNET SINCE THE BAD STORM THEY HAD HERE A COUPLE OF NIGHTS AGO.

THE LAST COUPLE OF DAYS THERE HAS NOT BEEN MUCH CHANGE WITH ALICIA. SHE HAS GOTTEN A FEVER OFF AND ON AND THE DIAREHHA IS STILL HERE BUT IT IS GETTING A LITTLE LESS FREQUENT.

ALICIA THREW UP HER FEEDING NG TUBE MONDAY EVENING. SHE HAD A LITTLE BREAK FRON IT BUT THEY ARE TALKING ABOUT PUTTING IT BACK IN TODAY BECAUSE THEY THINK SHE WILL BE ABLE TO START TOLERATING FEEDS NOW. SHE STILL IS HAVING A HARD TIME EATING REGULAR FOOD DUE TO THE PAIN SHE HAS BEEN HAVING IN HER TUMMY FROM THE GVH.

WE ARE GETTING VERY VERY VERY EXCITED ABOUT ERIKA COMING. ALICIA HAS BEEN COUNTING DOWN THE DAYS AND SHE IS EVEN TELLING MOMMY TO HURRY WHEN SHE TALKS TO HER ON THE PHONE. EVERY MORNING WHEN SHE WAKES UP SHE ONLY ASKS FOR TWO THINGS, ONE IS IF HER MOMMY IS COMING TODAY AND THE OTHER IS FOR MCDONALDS CHICKEN NUGGETS. I HAVE BEEN SEARCHING FOR A WAY TO GET HER SOME AND HI WABOPEFULLY I WILL SOON.

ALICIA WENT DOWN TO THERAPY YESTERDAY BUT SHE DID NOT MAKE IT VERY FAR WALKING. SHE IS HAVING ALOT OF PAIN IN HER LEGS DO I AM GOING TO GET HER OUT OF BED MORE AND MAKE HER START USING HER LEGS. I HAD TO CARRY HER ALOT OF THE WAY BUT AT LEAST SHE MADE IT DOWN THERE AND DID ALOT OF WALKING WHEN WE WERE FINALLY IN THE ROOM. SHE IS GETTING SO LITTLE. (ANY ONE WHO KNOWS HER CAN ONLY IMAGINE SINCE SHE WAS SO SMALL ALREADY)

I CAN NOT WAIT TIL WE ARE OUT OF HERE AND BACK AT HOME CAUSE ALICIA WILL GET CHICKEN NUGGETS EVERYDAY IF SHE WANTS THEM.

I WANT TO SAY CONGRATULATIONS TO TERESA, SHE HAD A LITTLE BABY GIRL "VIOLET ROSE" ON THE 22ND. SHE IS SO BEAUTIFUL!!!!!!!!!!!!!

SEE YOU SOON ERIKA, I WANT TO WIXH YOU A "HAPPY BIRTHDAY EVE" MY BABY WILL BE 22 YRS TOMORROW. I LOVE YOU BABY.

DAY +33

ALICIA WOKE UP THIS MORNING LOOKING A LITTLE MORE LIKE HERSELF. SHE IS STILL BEING MEAN TO ALL THE NURSES BUT I STOPPED MAKING EXUSES FOR HER. THEY SHOULD KNOW BY NOW THE REASON WHY. SHE WAS VERY NICE TO THE GENTLEMAN DOCTOR (ROBERTS I THINK) THAT IS ON ROUNDS THIS WEEK. I THINKE SHE IS SWEET O HIM BECAUSE SHE HAS NOT BEEN MEAN TO HIM YET. BUT AS FOR THE REST OF THE NURSES THEY STILL GET "THE LOOK". ALTHOUGH JENN OUR NURSE LAST NIGHT DID END UP BEING HER FRIEND. ALICIA WAS VERY VERY NICE TO HER AND ALL IT TOOK WAS FOR JENN TO SURPRISE HER WITH A ROLL OF TAPE FOR HER BABY THAT SHE WAS PLAYING DOCTOR WITH.

SHE IS SLOWLEY GETTING HER APPETITE BACK ALSO. I ORDERED HER EGGS AND PANCAKES THIS MORNING, SHICH SHE USUALLY LIKES BUT OF COURSE WHEN IT GOT HERE SHE WANTED A HOT DOG INSTEAD, SO FINALLY AFTER I KNEW SHE WAS NOT GOING TO BUDGE I ORDERED THE HOTDOG AND SHE ATE IT ALL (WITHOUT THE BUN) THEN SHE ATE TWO WHOLE PUDDINGS!!!!!!!!!!!!!!!!

HOPEFULLY WITH HER EATING A LITTLE IT WILL HELP WITH THE POOP THAT THIS GVH IS CAUSING. I TOOK COUNT ON HOW MANY DIAPERS I CHANGED YESTERDAY AND IT WAS A TOTAL OF 18 POOPY ONES. (AND I DO NOT MEAN A LITTLE POOP :) THEY SAID THAT WAS A BIG EFFECT WITH THE GVH.

YESTEDAY SHE ALSO HAD A BIG PROBLEM WITH HER BP. SHE RAN REALLY HIGH ALL DAY, THE HIGHEST IT GOT TO WAS 141 OVER 106. THEY GAVE HER ALOT MORE MEDS FOR HER BP AND FINALLY THEY GAVE THE ONE UNER THE TOUNGE AGAIN AND IT CAME BACK DOWN BUT THAT HAS STARTED AN ISSUE WITH HER HEART RATE. ( I CAN NOT WIN :)

AND THIS TOPPED IT ALL......... ARE YOU READY.................... HER NG TUBE CAME OUT. YES YOUR RIGHT......THE ONE IN HER NOSE......... YOU SHOULD OF SEEN THE LOOK ON ALICIA'S FACE. SHE WAS SO SCARED, SHE KEPT SAYING "NO MORE TUBE PLEASE". SO AS OF THIS MOMENT THEY HAVE NOT PUT IT BACK IN. THEY SAID AS LONG AS I CAN KEEP HER EATING AND SHE IS TAKING HER MEDS MY MOUTH THAN THEY WILL NOT HAVE TO BUT ALL I CAN THINK OF IS HOW MUCH MEDICINE THAT IT. BUT SO FAR WITH ONLY A LITTLE FIGHT SHE HAS DONE IT.

SHE IS SLEEPING RIGHT NO SO I NEED TO TAKE ADVANTAGE OF SOME REST ALSO. I HOPE ALL IS WELL WITH OUR FA FRIENDS AND FAMILY. THANKS FOR CHECKING ON MY BABY.

P.S ONLY TEN DAYS LEFT ERIKA!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

DAY +32

ALICIA HAD A VERY ROUGH NIGHT AGAIN. WHEN DENISE AND I SWITCHED PLACES AND I GOT BACK TO THE HOSPITAL, SHE LOOKED TO ME TO BE IN ALOT OF PAIN. EVERYTIME I CHANGED HER DIAPER OR EVEN TOUCHED HER SHE WRENCHED. SHE COMPLAINED ALOT ABOUT HER TUMMY HURTING SO I HAD THEM CALL THE DOC AND HE GAVE HER SOME MORPHINE WHICH SEEMED TO HELP ALOT.

ALICIA ALSO HAD TO BE PUT BACK ON INSULIN SHOTS LAST NIGHT. THEY ARE GIVING HER THE LANTIS EVERY 24 HOURS AND MORE UNITS AS NEEDED AFTER THEY CHECK HER SUGAR LEVEL EVERY FOUR HOURS. IT GOT AS HIGH AS 338.

ALICA IS GETTING EVEN MORE MEANER TO THE NURSES, SHE WAS ALREADY BEING MEAN BUT WITH THE DOSAGE OF STEROIDS DOUBLED SHE IS BEING EXTRA MEAN!!! HERE ARE SOME PICTURES DENISE GOT OF THE LOOKS SHE IS GIVING THE NURSES. THERE ARE STILL A FEW NURSES SHE IS BEING NICE TO.................

I ALSO HAVE TO SHOW THIS PICTURE OF DENISE..... I WONDER WHERE SHE IS GETTING THE IDEA TO GIVE BAD LOOKS????? DUH!!!!!!!!!!!!! BUT ACTUALLY SHE WAS DOING IT BEFORE DENISE GOT HERE SO SHE IS REALLY NOT TO BLAME BUT I JUST HAD TO GET PAY BACKS FOR HER TELLING EVERYONE IN THE POST THAT I NEEDED A SCOOTER TO MAKE IT THROUGH THE ZOO :)

THEY SHOULD BE ROUNDING ON ALICIA SOON SO I WILL PUT AN UPDATE IF I FIND OUT ANY THING DIFFERENT THAN WE ALREADY KNOW.

SHE DOES LOOK LIKE SHE IS FEELING A LITTLE BETTER THIS MORNING AND SHE EVEN JUST ASKED FOR A HOT DOG SO CROSS YOUR FINGERS THAT THIS IS A SIGN THAT WE ARE MOVING UPWARDS.

WELL THEY JUST DID ROUNDS ON ALICIA AND THEY SAID THERE IS NOT MUCH CHANGE WITH THE GVH YET. THEY DID SAY WE WOULD PROBABLY BE HANGING OUT HERE IN THE HOSPITAL FOR AT LEAST ANOTHER MONTH (WHICH I AM FINE WITH) I KNOW SHE IS IN THE BEST PLACE. THEY ALSO SAID THAT THEY ARE GIVING HER PLTELETS WHICH WERE DOWN TO 18,000 AND THEY NEED TO STAY ABOVE 50,000 SINCE THE BIOPSY AND SCOPE SHE HAD SATURDAY. THEY DID SAY THEY ARE GOING TO STOP HER GCSF BECAUSE HER ANC IS 2.49. GCSF IS A MED THAT HELPS TO BOOST ER ANC SO THEY WANT TO SEE IF AICIA CAN HOLD HER OWN. I SURE HOPE SHE CAN. THEY SAID HER BIOPSY REPOERT SHOULD BE BACK THIS AFTER NOON SO I WILL UPDATE LATER.

I AM OFF TO SAY GOOD BYE TO DENISE AND CASSIE THEY LEAVE IN AN HOUR. THANKS SO MUCH DENISE YOU WERE A HUGE HELP TO ME!!!!!!!!!!!!!

DAY +31

HI THIS IS DENISE, MICHELLE ASKED ME TO UPDATE EVERYONE. THE DRS SAID ALICIA IS ABOUT THE SAME. THEY WANT TO KEEP A CLOSE EYE ON HER BLOOD SUGAR LVELS TODAY BECAUSE OF HIGH DOSE OF STERIODS TO FIGHT THE GVH AND SOMETHING CALLED TPN I THINK. BARE WITH ME CUZ I HAVE HEARD JUST ABOUT EVERY COMBINATION OF LETTERS PUT TOGETHER FOR WHATS GOING ON THAT I AM SOMETIMES CONFUSED AND WILL PROBABLY HAVE YALL CONFUSED TOO. I STAYED ALL NIGHT WITH ALICIA LAST NIGHT AND IT WENT PRETTY GOOD. SHE HAD A SMALL FEVER BUT ALL IN ALL HAD AN EVENTFUL NIGHT. ONE THING I CANT UNDERSTAND THOUGH IS WHY CANT ALL THE NURSES GET TOGETHER AND COME TO MESS WITH HER AT ONE TIME INSTEAD OF ONCE EVERY HOUR. DONT WORRY MICHELLE I WONT ASK THEM:] MICHELLE TOOK CASSIE TO THE ZOO TODAY. HER AND HER FRIEND ARE RENTING SCOTTERS AND PUTTING THE KIDS OO THEIR LAPS. HA HA HA SEE MICHELLE I TOLD YOU THAT YOU REALLY SHOULDNT HAVE ME WRITE THIS. ANTWAYS I HOPE MICHELLE GOT SOME GOOD SLEEP WITH OUT ALL THE BELLS GOING OFF AND NURSES COMING IN AND BEING LOUD. ALICIA IS ASLEEP RIGHT NOW. SHE WONT HARDLY EAT. SHE DONT FEEL GOOD TODAY. I WISH I COULD STAY LONGER BUT MY OTHER KIDS AND HUSBAND ARE PROBABLY HUNGRY. KEEP MY BUDDY IN YOUR PRAYERS. NE-NE

UPDATE

I KNOW THIS IS FAST BUT AFTER I POSTED JUST A FEW MINUTES AGO, I WENT TO THE RESTROOM AND THE DOCTOR STOPPED ME AND RESULTS ALREADY CAME BACK AND IT IS CONFIRMED GVH OF THE GUT. THEY ARE STARTING MORE TREATMENT TODAY. I WILL UPDATE IF I FIND OUT ANY MORE...

DAY +30

LAST NIGHT WAS A LITTLE BETTER FOR ALICIA. SHE SEEMED TO BE FEELING A LITTLE BETTER, SHE HAS NOT HAD A TEMP SINCE YESTERDAY EVENING BUT I AM STILL HOLING MY BREATH, WE WERE WOKE UP A LOT LAST NIGHT THOUGH. SHE HAD TO GET PLATELTES AND RED BLOOD SO SHE COULD GO DOWN TO THE OR FOR THE SCOPE WHICH ALSO WENT VERY WELL.

DENISE AND CASSIE WOKE UP EXTRA EARLY THIS MORNING SO THEY COULD BE HERE WHEN ALICIA WENT DOWN SO CASSIE COULD SEE ALICIA FOR THE LAST TIME BEFORE THEY LEAVE ON MONDAY SINCE THE FLOOR IS ON LOCK DOWN AND CASSIE CAN NOT COME IN.

THIS IS A PICTURE OF NE-NE,CASSIE AND ALICIA ON THURSDAY NIGHT RIGHT WHEN THEY GOT HERE....................

AND THIS ONE IS CASSIE WAITING FOR ALICIA TO COME OUT OF THE BMT DEPT TO GO TO SURGERY....................................


SHE WAS STILL VERY TIRED... THIS WAS AT 7AM THIS MORNING. SHE IS HOLDING CE-CE (ALICIA'S) AND BABY GIRL (HERS). THEY ARE TWO PINK POODLES THAT SHE GOT YESTERDAY FOR THE AQUARIUM IN NEWPORT KENTUCKY, SHE WENT TO THE BUILD-A-BEAR STORE AND HAD HER AND ALICIA THE SAME ONE'S MADE.



AND THIS ONE IS ON THE WAY DOWN TO DAY SURGERY...............................



AND THIS ONE IS JUST BEFORE SHE WENT BACK INTO SURGERY OF THE THREE OF THEM AGAIN......................
OK I KNOW THAT IS ENOUGH.... I HAVE SO MANY PICTURES OF THEM.

THE GI DOCTOR SAID THE PROCEDURE WENT WELL, HER SAID HER ESOPHOGUS AND COLON LOOKED REALLY WELL, BUT HER STOMACH INTO THE SMALL INTESTANT IS WHERE HE SEEN ALOT OF DAMAGE AND THE CELLS LOOKED ALOT DIFFERENT. HE SAID THE OPENING THAT LED INTO HER SMALL INTESTANT FROM HER STOMACH WAS VERY SWOLLEN AND IRRITATED AND INFLAMED. HE SAID THEY TOOK BIOPSY'S FORM SEVERAL SPOTS AND THE RESULTS SHOULD BE BACK IN ABOUT A DAY AND A HALF BUT HE SAID IT LOOKED LIKE GVHD TO HIM IN A MODERATE SEVERETY IN THE SMALL INESTANT. HE SAID THEY ALSO ARE TESTING FOR CMV, WHICH IS A VIRUS THROUGH THE BIOPSY BUT HE IS LEANING MORE TOWARD THE GVHD. THEY HAVE ALREADY UPPED HER AMOUNT OF STERIOIDS THEY ARE GIVING HER TODAY.

I AM VERY SCARED NOW THAT WE ARE ALOMOST CERTAIN IT IS GVH, BUT I ALSO FEEL BETTER KNOWING ALICIA IS FINALLY GOING TO GET SOME TRATMENT AND WILL NOT HAVE TO BE SICK ALOT LONGER. I WILL LWT EVERYONE KNOW FOR SURE JUST AS SOON AS THE BIOPSY'S COME BACK.

TONIGHT I AM GOING TO TRY TO GET SOME MUCH NEEDED REST AND STAY AT THE RMH WITH CASSIE WHILE DENISE COMES AND STAYS THE NIGHT WITH ALICIA. I HOPE IT ALL GOES WELL SO I CAN CATCH UP ON SOME SLEEP!!!!!!!!!!!!!!! THERE IS GOING TO BE A CARNIVAL AND GAMES AT THE RMH SO I CAN SPEND A LITTLE TIME WITH CASSIE BEFORE SHE LEAVES AND DENISE CAN GET SOME TIME ALONE WITH ALICIA. ( GOOD LUCK DENISE)!!!!!!!!!!!!!!!!!!!! SHE WILL NEED IT.

YESTERDAY WHEN I GOT BACK TO ALICIA'S ROOM SHE HAD TALKED ONE OF THE NURSE'S INTO CHANGING HER CLOTHES AND PUTTING ON HER BRAND NEW DRESS THAT MY MOM HAD SENT HER, I HAD IT HANGING UP SO SHE COULD WEAR IT WHEN WE LEFT (WHICH I HAD READY TUESDAY WHEN WE WERE TO LEAVE). SHE JUST GRINNED SO BIG WHEN I WALKED IN CAUSE SHE HAD BEEN TRYING FOR A COUPLE OF DAYS FOR ME TO PUT IT ON HER AND I KEPT TELLING HER THAT IT WAS HER SPECIAL DAY DRESS. AND THAT SHE WAS WEARING IT ON HER SPECIAL DAY WHEN WE GOT TO LEAVE ( THE REAL REASON IS BECAUSE SHE IS POOPING ALL OVER WHAT SHE HAS ON, SO I HAVE HAD OLDER PJ'S ON HER ) I JUST SHOOK MY HEAD AND TOLD HER HOW PRETTY SHE LOOKED, AND OF COURSE I HAD TO TAKE A PICTURE, THIS IS HER ONERY GRIN..........................

ONCE AGAIN THANK YOU EVERYONE FOR ALL THE SUPPORT AND PRAYERS. AND I WANT TO LET EVERYONE KNOW THAT IS GOING TO CAMP THAT I SO HATE THAT WE WILL NOT BE THERE AND I HOPE EVERYONE HAS ALOT OF FUN AND WE WILL MOST DEFFINATLY BE THERE NEXT YEAR!!!!!!!!!!!!!!!!!!

I WANT TO SHARE THIS POEM

I JUST RECIEVED A COMMENT FROM A VERY NICE PERSON WHO LEFT THIS POEM FOR US AND I AM STILL BAWLING LIKE A BABY. THIS TRUELY MADE MY DAY... I WANT TO THANK THIS PERSON VERY MUCH.


One night I dreamed of walking along the shores of different lands.
I could tell that You were with me by the footprints in the sand.
As I gazed upon the heavens, I saw pages of my life.
It was then I realized that You remained there by my side.
When the clouds began to gather and the rains came falling down,I looked to only find one set of footprints on the ground.
I said, "Lord, why did You leave me in the troubled times of life?
I believed that You would always walk beside me day and night."
(Then I heard:)"My precious child, I'd never leave you.
I have carved you on the hollow of My hand.
It's then I carried you in My arms,When you see one set of footprints in the sand
"Dear Lord, will You be with me as I travel through the years?
Will You be there in the struggles? Will You wipe away the tears?
As my eyes turn toward the ocean and the shores of distant lands,
I'm still thinking of the single set of footprints in the sand.
(I heard Him say:)"My precious child, I'd never leave you.
I have carved you on the hollow of My hand.
It's then I carried you in My arms,When you see one set of footprints in the sand."

TODAY'S POST IS JUST UNDER THIS...............

DAY +29

O MY..... WHERE TO START??????? I HOPE THIS ALL MAKES SINCE, I AM WORKING ON THREE HOURS OF SLEEP. LAST NIGHT ALICIA HAD A VERY HARD NIGHT. SHE STARTED VOMITING AROUND 10PM, ALONG WITH THE FEVER THAT GOT VERY HIGH AGAIN LAST NIGHT AND THE DIARRHEA, SHE HAD A VERY HARD NIGHT.

FIRST ERIKA I WANT YOU TO NOT BE UPSET WHEN YOU READ THIS ENTRY AND CALL ME BABY IF YOU HAVE ANY QUESTIONS. I AM MAKING SURE OUR BABY IS GETTING THE BEST CARE AND I PROMISE SHE WILL BE BETTER SOON!!!

THIS MORNING WAS THE ULTIMATE THOUGH. I HAVE DEMANDED ANSWERS, I WOKE TO ALICIA'S PLATELETS DOWN TO 3,000 AND THERE WAS ALOT OF BLOOD IN HER STOOL. I NOW HAVE HER LAYING WITH NO CLOTHES ON BECAUSE I AM CHANGING THEM EVERY TIME I CHANGE HER DIAPER WHICH HAS BEEN TWICE AN HOUR SINCE YESTERDAY. THEY DID GIVE HER PLATELETS AROUND AN HOUR AGO SO THEY HAVE HELPED A LITTLE WITH THE BLEEDING. THE DOCTOR SEEN HER STOOLS THIS MORNING AND HAS ORDERED HER NPO IMMEDIATELY ( NO FOOD OR DRINKS) AND SHE IS GOING TO THE OR TODAY FOR A SCOPE TO FIND OUT WHAT IS GOING ON AND HOW SEVERE THE GVHD (WHICH THEY SAY IS ALMOST FOR SURE SHE HAS IN HER GUT) IS. FINALLY I MIGHT GET SOME ANSWERS.

DENISE AND CASSIE GOT HERE YESTERDAY AND ALICIA SMILED SO BIG WHEN SHE SEEN CASSIE. ALICIA POPPED RIGHT UP AND HER FEVER LEFT AND THEY PLAYED FOR HOURS. IT WAS AFTER CASSIE LEFT HER THAT SHE STARTED FEELING BAD AGAIN. I WAS SO HAPPY TO SEE THE BOTH OF THEM, BUT NOT AS HAPPY AS ALICIA. DENISE BROUGHT HER A HUGE SPONGE BOB PILLOW AND HE UNCLE MIKE SENT A CUTE LITTLE BEAR THAT SAID COME HOME SOON AND CASSIE BROUGHT HER DORA AQUA DOODLES. I THOUGHT YESTERDAY THAT CASSIE WAS THE MEDICINE ALICIA NEEDED, AND I THOUGHT OK TOMORROW ALICIA WILL FEEL BETTER WHEN CASSIE GETS BACK OVER HERE .................... UT BOY WAS I WRONG.

CASSIE AND DENISE WERE STOPPED AT THE FRONT DESK AND CASSIE AND ALL OTHER CHILDREN ARE NOT ALLOWED ON THE FLOOR INDEFINITELY. ALL SIBLINGS TO ALL PATIENTS ALONG WITH VISITORS WERE FORCED TO LEAVE AND THE BMT FLOOR WAS PUT ON A STRICT LOCK DOWN SO CASSIE WILL NOT BE ABLE TO SEE ALICIA AGAIN BEFORE SHE LEAVES MONDAY :(

THERE IS A VERY INFECTIOUS DISEASE EFFECTING CHILDREN HERE CALLED VRE ( VANCOMYCIN RESISTANT ENDOCCOCUS????) THE INFECTIOUS TEAM HAS BEEN CALLED IN AND EVERYTHING IS SHUT DOWN HERE UNTIL THEY CAN GET IT UNDER CONTROL. ALICIA WAS TESTED YESTERDAY AND TODAY BUT HE HAS TESTED NEGATIVE. I LOOKED THIS UP ONLINE YESTERDAY AND IT IS VERY SCARY. IT MAINLY ATTACKS KIDS THAT ARE IMMUNE COMPROMISED AND HAVE BEEN ON VANCOMYCIN FOR A LONG TIME WHICH ALICIA HAS BEEN ON IT SINCE TWO DAYS AFTER WE WERE ADMITTED. SO IT LOOKS LIKE ME AND DENISE WILL BE TAKING TURNS AT THE RMH WITH CASSIE AND ALICIA. TODAY THOUGH I AM NOT LEAVING ALICIA UNTIL AFTER SHE HAS HER PROCEDURE AND I KNOW SHE IS OK. BUT I WANT DENISE TO BE ABLE TO SPEND TIME WITH HER BEFORE SHE LEAVES.

I AM GLAD THOUGH THAT I GOT A COUPLE OF PICTURES YESTERDAY WITH ALICIA AND CASSIE TOGETHER AND I WILL POST THEM SOON BUT THE INTERNET HERE IS NOT WORKING RIGHT BECAUSE THE HOSPITAL HAS LOST ELECTRICITY TWICE ON TOP OF EVERYTHING ELSE GOING ON SO I PROMISE TO POST THE PICTURES SOON.

PLEASE PLEASE KEEP ALICIA IN YOUR PRAYERS


P.S. HAPPY ?1ST ( AT LEAST I LEFT THE FIRST NUMBER OUT) HAPPY BIRTHDAY KELLI

KELLI IS MY OLDEST SISTER AND THE BACK BONE IN OUR FAMILY. LOVE YOU KELLI AND I HOPE YOU HAVE A VERY GOOD BIRTHDAY. SORRY I AM NOT THERE.

DAY +28 UPDATE

AFTER ROUNDS THE DOCTORS ARE ALMOST SURE IT IS GVH. THEY HAVE STARTED HER BACK ON IV STEROIDS. THEY SAID THE ORAL ONES ARE JUST GOING OUT THE BACK DOOR :) MY BABY HAS NOT ATE IN ALMOST 40 HOURS SO I HOPE THEY GET THIS UNDER CONTROL SOON. PLEASE KEEP PRAYING FOR HER AND I WILL UPDATE MORE AS I FIND ANY NEWS OUT

DAY +28

ALICIA FINALLY BROKE HER FEVER AROUND 4AM, SHE HAS ONLY HAD ONE MILD TEMP SINCE THEN BUT WITH TYLENOL IT WENT AWAY.

SHE IS ASLEEP RIGHT NOW AND HAS BEEN ALOT YESTERDAY AND TODAY, BUT I AM FOR SURE THE FEVER IS TAKING ALOT OUT OF HER AND MAKING HER TIRED. I JUST PRAY THA THE FEVER STAYS AWAY TODAY.

DR DAVIES JUST LEFT FROM CHECKING ON ALICIA. SHE SAID THEY ARE STILL NOT FOR SURE WHAT IS GOING ON YET, BUT THEY MAY WANT TO DO A SCOPE ON ALICIA. THEY ARE MENTIONING ALOT ABOUT GVH. (THAT IS WHAT I AM MOST SCARED OF). ALICIA HAS DIAREHHA VERY BAD NOW ALSO, SO ALL OF THE DOCTORS THINK IT IS GVH. PLEASE PRAY THAT IT IS NOT!!!!!

DENISE AND CASSIE JUST CALLED ME AND THEY ARE NOW IN CHICAGO. THEY LEFT KANSAS AT 7AM THIS MORNING. THIS WAS CASSSIE'S FIRST PLANE RIDE, I AM EXCITED TO HEAR ALL ABOUT IT. I SO HOPE ALICIA IS UP TO HAVING FUN WITH CASSIE THIS WEEEKEND.

THE NURSE JUST CAME IN AND GUESS WHAT............................ YOU GOT IT ................ANOTHER FEVER. GREAT. AND SHE CAN NOT EVEN HAVE ANY TYLENOL YET. POOR BABY. I WISH I COULD TAKE THIS ALL AWAY!!!!!!!!!!!!!!!!!!

ERIKA WILL BE HERE VERY SOON. I CAN NOT WAIT!!!!!!!!!!!!!!!!!! SHE TURNS 22 A WEEK FROM TOMORROW. THIS IS THE FIRST TIME IN HER WHOLE LIFE THAT I WILL NOT BE THERE FOR HER BIRTHDAY. I MISS HER SOOOOOOOOOOOOOOOO MUCH!!!!!!!!!!

PLEASE KEEP ALICIA IN YUR PRAYERS. I AM OFF TO KEEP ICE COOL RAGS ON HER LITTLE HEAD.

DAY +27

ALICIA HAD A VERY ROUGH NIGHT LAST NIGHT. PLEASE KEEP HER IN YOUR PRAYERS. I AM SO WORRIED FOR HER!!!!!!!!!!!! SHE BROKE THE FEVER FOR A SHORT WHILE YESTERDAY AND EVEN ATE SOME SOUP BUT HER FEVER CAME BACK AND NOW THIS MORNING IT IS ALL THE WAY UP TO 103.4. I AM SO SCARED I JUST WISH THEY WOULD FIGURE OUT WHY IT IS SO HIGH. THEY ARE GETTING READY TO WRAP HER IN COOLING BLANKETS. I WILL UPDATE LATER THIS AFTERNOON WHEN I FIND OUT ANYMORE NEWS. PLEASE PRAY FOR ALICIA, I AM SOOOOOOOO SCARED RIGHT NOW.

DAY +26 UPDATE

YOU MIGHT WANT TO DISREGUARD THE LAST MESSAGE. THEY DID ROUNDS ABOUT FIFTEEN MINUTES AGO AND OK'S ALICIA TO BE DISCHARGED AND THE NURSE CAME IN TO THE ROOM TO TAKE ANOTHER TEMP, AND THE FEVER SHE HAS BEEN GOING BETWEEN WAS THERE. SHE HAS A TEMP NOW OF 101.5. I AM VERY WORRIED. I AM SOOOO GLAD IT HAPPENED NOW BEFORE I GOT HER OVER THERE. SHE WAS FINE AND HOUR AGO BUT NOW SHE LOOKS LIKE SHE DOES NOT FEEL GOOD. PLEASE PRAY HARD FOR HER TODAY!!!!!

DAY +26

WELL HOPEFULLY TODAY IS THE DAY!!!!!!!!!!!! AT LEAST THAT WAS THE LAST WORD YESTERDAY. IT CHANGES AROUND HERE EVERY HOUR SO I STILL HAVE MY FINGERS CROSSED, THEY HAVEN'T DONE ROUNDS YET TO SAY THE FINAL "GET OUT OF HERE" BUT SHE HAS NOT HAD ANY MORE TEMPS OVER NIGHT OR THIS MORNING SO HOPEFULLY WE WILL BE OUT OF HERE LATER TODAY.

HER COUNTS ARE UP AGAIN THIS MORNING. HER ANC WENT UP TO 2.11 ( AWESOME ), HER WBC WENT TO 2.6. HER PLATELETS ARE HOLDING AT 130,000, BUT HER HBG WENT DOWN TO 8.6 SO THAT IS THE ONLY THING I AM WORRIED ABOUT. I AM SURE THEY WILL GIVE HER SOME BEFORE WE LEAVE TODAY. ( LOOK POSITIVITY)

SHE HAD A REALLY GOOD NIGHT LAST NIGHT. I DIDN'T CHANCE TAKING HER OUT BUT WE PLAYED AND HAD ALOT OF FUN TOGETHER IN HER ROOM. I DON'T KNOW IF I EVER MENTIONED ALICIA'S LAST LITTLE "REMARK" BUT SHE DID IT AGAIN LAST NIGHT AND I WAS SOOOO EMBARRASED AGAIN. WE WERE PLAYING "I SEE". IT IS A GAME NE-NE MADE UP WHEN SHE WAS HERE. WE TAKE TURNS SAYING WHAT WE SEE. LIKE I WOULD SAY "I SEE A WHITE BLANKET' AND THEN IT WAS HER TURN TO SAY WHAT SHE SEE'S. WELL AFTER ABOUT FIFTEEN MINUTES OF PLAYING ALICIA'S PCA NURSE CAME IN TO TAKE VITALS, SHE IS A VERY NICE LADY BUT SHE HAS A HUGE REAR END. I KNEW WHAT WAS GOING TO HAPPEN THE SECOND SHE WALKED IN SO I TRIED TO CHANGE THE GAME REAL FAST BUT I WAS TOO LATE. ALICIA SAID "I SEE A BIG BUTT" I TURNED SO RED AND KEPT SAYING HOW SORRY I WAS BUT SHE JUST LAUGHED AND SAID KIDS SAY THE CUTEST THINGS. I SOOO WISH SHE WOULD OF SAID I SEE MEE-MA'S BIG BUTT BUT SHE DIDN'T, WE ALL KNEW SHE WAS TALKING ABOUT THE NICE NURSE. NEEDLESS TO SAY WE WILL NOT BE PLAYING THAT GAME TO OFTEN ANY MORE. (THANKS NE-NE)

MY MOM SENT ALICIA THE CUTEST GIFT YESTERDAY. ALICIA JUST TOTALLY LOVED IT. SHE WOULD NOT TAKE IT OFF ALL NIGHT. I LOVE IT ALSO. IT WAS A DORA BLANKET JUST HER SIZE AND IT ROLLS UP, SO IT IS HANDY TO TAKE ANY WHERE. THANKS MOM, YOU ARE THE GREATEST, AS YOU CAN TELL BY THE PICTURES ALICIA LOVE THE BLANKET!!!!!!!!!!

I WANT TO THANK EVERYONE AGAIN FOR ALL OF THE PRAYERS BEING SAID FOR ALICIA. I BELIEVE THE LORD HEARS THEM ALL!!!!!!!!!!!

SEE YOU SOON MOMMY, NE-NE AND CASSIE, AND HOPEFULLY KELLI AND CLAN ALSO!!!!!!!!!!!!! LOVE YOU ALL!!!!!!!!!!!!

DAY +25

WELL IT IS MONDAY AND WE ARE NOT LEAVING TODAY :( I KNOW I SAID YESTERDAY IT WOULD PROBABLY BE TUESDAY BUT NOW IT LOOKS LIKE IT WILL BE MORE LIKE WEDNESDAY OR THURSDAY.) ALICIA CAN NOT DECIDE IF SHE WANTS TO GET A FEVER OR NOT. THIS MORNING IT WENT UP TO 100.5 BUT THEN IT CAME RIGHT DOWN AND THEN IT WENT UP AND DOWN AGAIN. RIGHT NOW AT THIS MOMENT IT IS DOWN SO I AM PRAYING IT STAYS DOWN. THEY DID DRAW MORE BLOOD FOR CULTURES AGAIN, I SOOOOO HOPE IT IS NOT FROM BACTERIA OR A VIRUS. IT SEEMS TO ONLY DO THIS IN THE MORNING TIME, AS HER BLOOD SUGAR LEVEL ALWAYS IS LOW IN THE MORNING. AFTER SHE EATS AND GETS MOTIVATED SHE SEEMS TO DO FINE. SHE DID HAVE ONE FEVER LAST NIGHT BUT IT DID NOT LAST LONG AND HER BLOOD SUGAR WENT VERY HIGH TO WHERE SHE HAD TO HAVE INSULIN BUT THE REST OF THE NIGHT SHE DID FINE.

ALL OF HER COUNTS CAME IN THIS MORNING ACCEPT HER ANC. THEY DREW HER BLOOD KINDA LATE THIS MORNING SO THEY COULD DO THE 24 HOUR TEST FROM REMOVING HER FROM THE ANTIBIOTIC (WHICH COULD ALSO BE WHY HER TEMP IS TRYING TO FOOL US) HER WBC WENT UP TO 2.5 AND HBG STAYED AT 10.4. AND HER PLATELETS WENT UP TO 201,000 FROM THE TRANSFUSION YESTERDAY MORNING. I WILL UPDATE ON HER ANC WHEN I GET IT.

GOOD NEWS THIOUGH, ALICIA FINALLY GOT TO RIDE THE BIKE LIKE SHE HAS BEEN WANTING TO DO ALL WEEKEND. I FINALLY SEEN IT UNOCCUPIED AND BROUGHT IT BACK AND WIPED IT DOWN VERY WELL. SHE WAS SO HAPPY TO SEE IT. SHE RODE SO FAST THAT I COULD NOT KEEP UP WITH HER. (THANK GOODNESS SHE GOT PLATELETS YESTERDAY) HERE IS THE PICTURES I HAVE BEEN PROMISING FOREVER...................

SHE HAD SO MUCH FUN. I HOPE I CAN FIND IT AGAIN SO SHE CAN RIDE IT AGAIN. SHE HAS THIS EXACT SAME BIG WHEEL AT HOME. I WISH I HAD IT HERE SO SHE COULD RIDE WHEN EVER SHE WANTED TO. THAT WOULD BE SO COOL.

ON TO ANOTHER LONG DAY IN OUR WONDERFUL ROOM HERE AT THE HOSPITAL. DENISE WILL BE HERE THIS WEEKEND WITH CASSIE SO WE ARE GETTING EXCITED AGAIN. AND ERIKA WILL BE HERE IN TWO WEEKS. WE CAN NOT WAIT TO SEE HER!!!!!!!!!!!!!!!!!!! THEN MY OLDEST SISTER WILL BE HERE. I AM SO GLAD I HAVE SUCH A WONDERFUL FAMILY!!!!!!!

DAY +24

ANOTHER GOOD DAY!!!!!! SORRY ABOUT THE LATE UPDATE, I HAVE BEEN AT THE RMH CLEANING THE ROOM, GETTING IT READY FOR ALICIA TO COME THERE. I MESSED UP AND TOLD HER SHE WAS GOING TO BE ABLE TO GO THERE SOON, SO THAT IS ALL SHE HAS BEEN ASKING ME. THERE WAS AN ATTENDANT HERE WITH ALICIA ALL DAY AND EVERY TIME I CAME TO CHECK ON HER SHE WOULD SAY "NOW TIME FOR ALICIA TO GO BYE BYE" I KEPT TELLING HER 2 DAYS BUT THAT WASN'T FLYING WITH HER :)

HER COUNTS CAME UP A LITTLE MORE TODAY. HER ANC WENT TO 1.16, AND HER WBC WENT BACK UP TO 2.0. HER PLATELETS WERE VERY LOW THOUGH, THEY WERE AT 7,000 SO SHE GOT A TRANSFUSION AT 6 AM AGAIN. HER HBG WENT TO 10.4. I KNOW THAT THEY ONLY WENT UP SLIGHTLY BUT AT LEAST THEY ARE MOVING IN THE RIGHT DIRECTION.

DR. JOEDEL TOLD ME IN ROUNDS THIS MORNING THAT SHE COULD POSSIBLY GET OUT ON TUESDAY NOW INSTEAD OF MONDAY DUE TO THE ANTIBIOTICS SHE WAS RECIEVING FOR THE POSITIVE CULTURE LAST MONTH WERE ENDING TODAY AND THEY NEEDED TO GET ANOTHER CULTURE 24 HOURS AFTER THEY WERE STOPPED SO THAT WOULD MOVE US TO TUESDAY AND NOT TOMORROW WHICH I AM FINE WITH. BUT I THINK ALICIA HAD OTHER THOUGHTS....... THIS IS A PICTURE OF HER LAST NIGHT DURING OUR NIGHTLY WALK, SHE KEPT GOING FOR THE DOOR :)

I STOPPED HER BEFORE SHE ACTUALLY MADE IT THROUGH IT :(


I STILL DID NOT GET ANY PICTURES OF HER ON THE BIKE, WHEN WE WENT TO FIND IT IT WAS ALREADY BEING USED BY ANOTHER LITTLE GIRL, AND I DID NOT BRING ANY WIPES TO STERILIZE IT SO WE HAD TO SETTLE ON HER PUSHING HER BABY WHICH SHE WAS OK WITH.

I ALSO GOT LUCKY TODAY AND GOT TO WATCH "GROWN UP MOVIES" ALICIA FINALLY AGREED TO WEAR HER HEAD PHONES WITH HER DVD PLAYER (THANKS DIANNE) SO I COULD HEAR THE BIG TV, BUT THIS TOOK ALL OF A WEEK TO TALK HER INTO. I DON'T THINK SHE LIKES THEM BUT AFTER SHE PUT THEM ON SHE WAS OK WITH IT ALSO.

TOMORROW IS GOING TO BE A BUSY DAY FOR THE BOTH OF US, WITH ALL THE MADNESS WITH GETTING READY FOR ALL THE DISCHARGE BUT I AM SOOOOO READY. THANKS AGAIN FOR ALL OF EVERYONE'S SUPPORT.

YESTERDAY WAS A VERY LONG DAY FOR ME. ALICIA'S COUNTS HAD ME VERY WORRIED, WAITING UNTIL TODAY SEEMED LIKE FOREVER. I WAS SO SCARED THAT SOMETHING WAS NOT RIGHT WITH THE WAY HER COUNTS HAD DROPPED AND I EVEN WAS BEGINNING TO THINK THAT SHE WAS LOSING HER ENGRAFTMENT. I PROBABLY SLEPT ALL OF TWO HOURS LAST NIGHT, AND ALICIA'S TUMMY WAS HURTING ALOT LAST NIGHT ALSO SO SLEEP WAS JUST OUT OF THE QUESTION.

I EVEN STOPPED PACKING. I WAS THINKING I WAS RUSHING THINGS OR EVEN JINXING OURSELFS, SO I STOPPED PACKING AND LEFT EVERYTHIING AS IT WAS.

BUT GOD IS GREAT!!!!!!!!!!!!!!! ALICIA'S COUNTS CAME IN ABOUT 8:30 AND THEY WENT BACK UP SOME!!!!!!!!! HER NURSE WAS JUMPING UP AND DOWN, IT WAS WHAT I NEEDED TO HEAR. IT FELT LIKE 10000 BRICKS WERE LIFTED OFF MY SHOULDERS. HER ANC WENT TO 1.06 AND HER WBC WENT TO 1.6. I AM SO RELIEVED. I DIDN'T EVEN TELL ERIKA UNTIL THIS MORNING BECAUSE I DID NOT WANT HER TO WORRY UNTIL I WAS FOR SURE. SHE WAS A LITTLE UPSET THAT I KEPT IT FROM HER BUT SHE IS JUST GLAD SHE IS OK. ( SORRY ERIKA).

I STILL DIDN'T GET ANY PICTURES OF ALICIA ON THE BIKE. I WAS KINDA SCARED TO TAKE HER OUT OF HER ROOM YESTERDAY WITH THE WAY HER COUNTS DROPPED SO WE JUST STAYED IN THE ROOM AND PLAYED. THIS IS A PICTURE WHEN WE WERE HAVIG FUN WITH STICKERS................

AND THIS WAS ALICIA AFTER SHE FOUND HER GOOFY DOCTOR GLASS'S KEITH BOUGHT, SHE LOVES THEM GLASS'......................
WELL OFF FOR A MUCH NEEDED NAP NOW SO I CAN CONTINUE WITH THE PACKING I STOPPED YESTERDAY. PLEASE KEEP PRAYING FOR ALICIA'S COUNTS.

DAY +22

OK. OK, NO PICTURES OF HER RIDING THE BIKE AGAIN. (SORRY LYNN.) I WAS READY THOUGH, I HAD THE MEMORY CARD IN PLACE AND READY TO TAKE PICTURES BUT WHEN IT WAS TIME FOR US TO TAKE A BIKE RIDE ALICIA SAID HER TUMMY WAS HURTING AND DID NOT WANT TO GO. :( SO I GUESS TONIGHT WILL ACTUALLY BE THE THIRD TIME AS LONG AS SHE IS FEELING UP TO IT.

HER COUNTS DROPPED AGAIN TODAY. I AM WORRIED JUST A LITTLE, THE DOCTORS ACTUALLY SEEMED A LITTLE WORRIED TODAY ALSO. THEY WANT TO WAIT UNTIL THEY SEE THE COUNTS TOMORROW BEFORE THEY CHANGE ANYTHING, BUT I WAS TOLD ALSO THAT IF HER COUNTS DROP AGAIN TOMORROW THAT WE WOULD NOT BE ABLE TO LEAVE MONDAY TIL THEY FOUND OUT WHY THEY ARE DROPPING. I SOOOO HOPE THEY START GOING BACK UP.

HER ANC WENT DOWN TO .68 AND WBC TO 1.0. HER PLATELETS ARE STILL OK AT 77,000 AND HBG IS GREAT AT 11.3. SO PLEASE PRAY THAT HER ANC AND WBC GO BACK MOVING UP AND NOT DOWN!!!!

SHE ALSO WAS COMPLAINING A LITTLE YESTEDAY THAT HER TUMMY WAS HURTING. I CHANGED A LOT OF DIAPERS SO I CAN BELIEVE IT HAD TO BE HURTING. THEY TOOK STOOL SAMPLES FINALLY AFTER THROWING AWAY SIX DIAPERS NOT PAYING ATTENTION, SO HOPEFULLY WE WILL HAVE SOME NEWS SOON. I THINK IT IS JUST BECAUSE SHE WENT FROM EATING NOTHING TO EATING LIKE A HORSE. I JUST HOPE IT ISN'T ANY VIRUS.

I WANT TO THANK EVERYONE AGAIN FOR ALL OF THE SUPPORT I HAVE GOTTEN. I NEVER KNEW HOW IMPORTANT IT WAS TO KNOW THAT THERE ARE PEOPLE THINKING ABOUT YOU ALL THE TIME. THANKS DONNA, KAYLA, CANDACE, TINA , LORI, DIANNE AND MARYANN FOR THE PHONE CALLS AND SUPPORT. I SOOOOO NEEDED THAT.

SEE YOU SOON DENISE, CASSIE AND ERIKA.

DAY +21

MEE-MA GOOFED UP AGAIN. ALICIA WENT OUT LAST NIGHT AND RODE THE LITTLE DORA BIKE IN THE HALLS THAT SHE TOTALLY LOVES, AND I DID TAKE PICTURES THIS TIME, BUT RETARD ME FORGOT TO PUT THE SIMS CARD IN THE CAMERA SO I COULD NOT SAVE THE PICTURES. SO ONCE AGAIN I DO NOT HAVE PICTURES. WE ARE GOING TO TAKE ANOTHER RIDE TONIGHT AND THIS TIME I WILL HAVE PICTURES. (THE THIRD TIME IS A CHARM RIGHT?) ALTHOUGH I DID TAKE PICTURES WITH A DISPOSABLE CAMERA DENISE HAD LEFT FOR ME TO TAKE PICTURES FOR HER SO AT LEAST I WILL HAVE COPIES.

WE GIT GOOD NEWS YESTERDAY, ALICIA IS 99.6% DONOR!!!!!!!!!!!!!!!!! I WAS SOOOO HAPPY. HER COUNTS DID DROP TODAY BUT EVERYONE IS TELLING ME THAT IS NORMAL SO I ILL NOT FREAK UNTIL I SEE THEM NOT GOING BACK UP. HER ANC WENT TO .86 FROM 1.24 AND WBC WENT FROM 2.0 TO 1.5 BUT HER HBG AND PLATELETS ARE STILL FINE.

ONE WEEK UNTIL DENISE GETS HERE. ALICIA IS SO HAPPY TO GET TO SEE CASSIE. I AM USING CASSIE TO BRIBE ALICIA TO TAKE HER MEDS AND BE NICE TO THE NURSES. IT WORKS REALLY WELL. AND WHEN CASSIE LEAVES I CAN BRIBE HER WITH MOMMY!!!!!

THANKS DIANNE, JOHN AND MICHELLE FOR THE CUTE SPONGE BOB COLORING BOOK AND CRAYONS YOU SENT ALICIA. AND THANKS MOM FOR THE CUTE CARD AND HATS AND LAST BUT DEFINATLY NOT LEAST THANKS TO TINA AND HER FAMILY FOR THE CUTE HATS AND FOR ALWAYS BEING MY FRIEND ( NO MATTER WHO OR WHAT SAYS DIFFERENT )

DAY +20

ANOTHER GREAT DAY!!!!!!!!!!!!! YESTERDAY WAS AN AWESOME DAY FOR ALICIA. FIRST LET ME APPOLOGIZE FOR NOT POSTING ANY PICTURES WITH THIS ENTRY. ALICIA DID GET TO GO TO THE PLAY ROOM AS I HAD MENTIONED BUT MME-MA FORGOT THE CAMERA :) I REALIZED IT RIGHT WHEN WE WALKED IN BUT THERE WASNO WAY I WAS GOING TO TURN HER AROUND TO GO AND GET IT AND CHANCE HER BEING O TIRED TO ENJOY HER FUN. SHE HAD A BLAST, SHE WENT RIGHT TO THE KITCHEN AND LAUNDRY AREA, SHE CAN IRON CLOTHES VERY WELL, I TOLD HER WHEN WE GET BACK TO MOMMY'S HOUSE SHE WILL BE IN CHARGE OF THE LAUNDRY. SHE ALSO COOKED ME PIZZA AND CARROTS ( :( ) IT WAS SO NICE TO SEE HER PLAYING LIKE SHE WAS. (SURE WISH I HAD PICTURES)

ALICIA'S ANC IS A 1.24!!!!!!!!!!!!!!! CAN YOU BELIEVE THAT. AND HER WBC IS AT 2.0. I AM SO THRILLED. THIS IS HIGHER THAN WHEN WE GOT HERE. AND IT IS ONLY DAY +20. HER PLATELETS WENT TO 187,000 FROM HER EARLY MORNING TRANSFUSION YESTERDAY.

TODAY IS GOIG TO BE A BUSY DAY. PT/OT IS COMING FOR ALICIA THIS MORNING AGAIN AND SHE IS GOING DOWN STAIRS AGAIN, BUT THIS TIME IT WILL BE FOR AN HOUR NOT 30 MINUTES. AT 11 AM THE DIABETIC NURSE WILL BE HERE TO TEACH ME HOW TO TEST HER BLOOD SUGAR AND GIVE HER INSULIN AND WHEN AND WHAT POINT TO REACT AT WHICH LEVEL IT IS, THEN AT ONE THE DIETARY NURSE WILL BE HERE TO GO OVER WHAT NUTRICIAN AND CALORIES ALICIA WILL NEED AND WHAT SHE CAN AND CAN NOT EAT A DIFFERENT WAYS I NEED TO PREPARE HER FOOD. THEN AT 2 PM THE HOME HEALTH NURSE WILL BE HERE TO SPEND THE AFTERNOON TO TEACH ME HOW TO GIVE MEDS THROUGH THE NG AND HOW AND WHEN SHE WILL BE NEEDING ME TO GIVE HER IV MEDS SHE WILL BE LEAVING WITH MONDAY. THIS IS GOING TO BE ALOT TO LEARN TODAY BUT I AM VERY MUCH READY.

THREE WEEKS TIL ERIKA IS HERE!!!!!!!!!!!!! WE CAN NOT WAIT. DENISE AND CASSIE WILL BE HERE A WEEK FROM TOMORROW AND MY OLDEST SISTER IS TRYING TO GET EVERYTHING IN ORDER FOR THE WEEKEND AFTER ERIKA. I AM SOO HAPPY TO SEE EVERYONE AND I KNOW ALICIA WILL BE ALSO.

DAY+19

SORRY THE PICTURE IS KINDA FUZZY BUT THIS IS THE ONLY ONE I HAD TAKEN YESTERDAY. THIS IS OF HER AT THERAPY, SHE WALKED ALL THE WAY THERE AND IT IS ON THE 3RD FLOOR, SHE ID VERY WELL, BUT BY THE TIME WE MADE IT BACK TO THE ROOM SHE WAS WORE OUT SO WE DID NOT MAKE IT TO THE PLAY ROOM. SHE WENT RIGHT TO SLEEP WHEN WE GOT BACK. SHE DID WAKE UP A COUPLE OF HOURS LATER AND WANTED TO GO BUT BY THEN IT WAS CLOSED SO WE ARE GOING THIS EVENING. SHE DID GET TO WALK THE HALLS INSTEAD, AND THIS TIME SHE FOUND A LITTLE DORA BIKE AND STARTED RIDING IT. BOY WAS THAT A MISTAKE. I THOUGHT IT WAS HARD TO KEEP UP WITH HER WHILE PUSHING THE POLE WHEN SHE WAS WALKING, SO YOU CAN ONLY IMAGINE HOW IT WAS WITH HER ON A BIKE:) SO HOPEFULLY WE WILL HAVE ALOT MORE PICTURES TO POST TOMORROW OF HER IN THE PLAY ROOM.

WE WERE WOKE UP THIS MORNING AT 5:30 AM BECAUSE ALICIA'S LABS CAME BACK AND HER PLATELETS WERE DOWN TO 8,000. SO SHE NEEDED A TRANSFUSION. THEY WERE AT 22,000 YESTERDAY SO I DO NOT UNDERSTAND WHY SHE DID NOT GET THEM THEN, THEY SAID THEY WANTED TO SEE WHAT THEY WOULD DO, WHICH I GUESS THEY DID AND IT WAS THE REASON SHE HAD TO GET THEM SO EARLY THIS MORNONG. AT LEAST NOW I KNOW WHY SHE WAS SO TIRED FROM WALKING TO THERAPY.

HER ANC WENT UP AGAIN TODAY, THIS MORNING IT WAS AT .95!!!!!! HER WBC WENT TO 1.5 AND HBG IS AT 11.3. THEY ARE SLOWLY BUT SURELY GETTING HER BLOOD SUGAR UNDER CONTROL, BUT I DID HEAR THROUGH THE GRAPE VINE THAT I WAS GOING TO BE THE ONE TO GIVE HER THE INJECTIONS TODAY. (YIPEEE) NOW I WILL BE THE BAD PERSON:) HER CALCIUM LEVEL WAS ALSO LOW THIS MORNING SO THEY HAVE TAKEN MORE BLOOD TO RUN TESTS TO SEE WHAT IS GOING ON THERE.

GOOD NEWS!!!!!! WE GOT A POTENTIAL RELEASE DATE YESTERDAY FOR THIS MONDAY THE 14TH WHICH WILL BE DAY +25. I AM VERY EXCITED. EVEN THOUGH IT IS ONLY TO THE RMH AND NOT HOME AT LEAST WE WILL BE OUT OF THIS ROOM. I AM KINDA LEARY THOUGH BECAUSE EVERYTHING IS GOING SO WELL WITH ALICIA AND I JUST DO NOT WANT TO RUSH ANYTHING AND HAVE HER HAVE ANY SET BACKS AFTER SHE HAS DONE SO WELL. ALICIA IS MAKING THIS LOOK SO EASY, SO KEEP PRAYING EVERYTHING WILL GO AS WELL AS NOW IF WE ARE RELEASED MONDAY. THEY WILL BE WEINING HER OFF MORE MEDS AND CHANGING MORE TO ORAL BEFORE WE GET TO LEAVE.

THANK YOU AGAIN EVERYONE SOOOO MUCH. WE WOULD NOT BE WHERE WE ARE TODAY WITHOUT THE LORD AND ALL OF YOUR PRAYERS.

DAY +18

I AM FREE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

ALICIA GOT TO LEAVE HER ROOM YESTERDAY AND SHE WAS SOOOOOOOOOOO HAPPY. THE HARD PART WAS GETTING HER BACK IN HER ROOM, SHE PASSED HER OWN DOOR THREE TIMES BEFORE HE FINALLY GOT TIRED AND WENT BACK IN WITHOUT AN ARGUEMENT. THIS FIRST PICTURE IS OF HER RIGHT OUT SIDE THE ROOM SHE HAS BEEN IN FOR THE LAST MONTH...............................















AND THIS PICTURE IS OF ALICIA AND DR. MEHTA, SHE IS ONE OF ALICIA'S FAVORITE DOCTORS AND NOW I KNOW WHY BECAUSE SHE IS THE ONE WHO SET HER FREE.........















SHE DID VERY WELL WALKING THAT FAR FOR THE FIRST TIME. IT WAS HARD TO KEEP UPO WITH HER. IT WAS LIKE A LEASH ON A PUPPY. EVERY TIME SHE GOT TO FAR AHEAD THE LEASH WOULD TUG A LITTLE AND SHE WOULD SLOW DOWN OR TURNA ROUND AND TELL ME TO HURRY UP.

MOMMY WOULD BE SO PROUD OF HER. SHE CALLED ERIKA LAST NIGHT AND KEPT SAYING "I GO OUTSIDE, I GO OUTSIDE" WHEN YOU GET HER SOON ERIKA SHE PROBABLY WILL BE ABLE TO OUT RUN YOU!!!!!!!!!!!!!!!!

ALICIA DIDN'T LEAVE THE BMT WARD, BUT SHE DID WALK EVERY INCH OF THE NORTH SIDE, WHICH IS LIKE A BIG HORSESHOE SHAPE. WHEN SHE LEFT HER ROOM WE JUST LET HER KIND OF LEAD US AND WHAT I FIND KINDA WEIRD WAS SHE LED US STRAIGHT TO ISMAEL'S ROOM. HE IS CLEAR ON THE OTHER SIDE OF THE HORSESHOE . FOR ANY THAT DOES NOT KNOW, ISMAEL IS AN 11 YR OLD BOY THAT ALSO HAS FA, AS DOES HIS 7 YR OLD SISTER, LESLIE. ALICIA AND ISMAEL HAD NEVER MET UNTIL YESTERDAY. I JUST FOUND THAT A LITTLE STRANGE, THIS IS A PICTURE OF ALICIA STANDING OUTSIDE ISMAEL'S DOOR TALKING TO HIM THROUGH THE GLASS WHILE HE IS STANDING AT THE DOOR......................















AND THIS IS ALICIA ON HER WAY BACK TO HER ROOM..........................



















NOW I HAVE SOMETHING TO BRIBE HER WITH. ALL I HAVE TO SAY IS "IF YOU ARE A GOOD GIRL THEN YOU CAN GO OUTSIDE LATER" AND SHE TURNS INTO A LITTLE PRINCESS. (BUT IT DOES NOT LAST LONG)


TODAY HER ANC IS EVEN HIGHER, IT IS AT .85, HER WBC IS AT 1.3, PLATELETS ARE LOW AT 22,000 WHICH I AM SURE SHE WILL BE GETTING TODAY AND HER HBG IS AT 11.5.


THIS IS GOING TO BE A LONG WEEK, NE NE AND CASSIE ARE COMING A WEEK FROM THURSDAY FOR THE WEEKEND SO THE WAITING WILL BE HARD. CASSIE IS ONE OF ALICIA'S FAVORITE COUSIN ALONG WITH KRISTIAN WHICH IS MY OLDEST SISTERS DAUGHTER AND JADE WHICH IS MY YOUGEST SISTERS DAUGHTER.


THEN ERIKA WILL BE HER ON THE 1ST!!!!!!!!!!!!!!!!! I DO NOT KNOW WHO IS MORE EXCITED ME OR ALICIA? I MISS ERIKA AND THE BOYS SO MUCH.


THAN THE FOLLOWING WEEKEND AFTER ERIKA LEAVES, MY OLDEST SISTER, KELLI WILL BE HERE WITH HER KIDS. SO WE HAVE ALOT TO LOOK FORWARD TO ON THE WEEKENDS TO COME.


THANK YOU EVERYONE FOR ALL THE PRAYERS THAT ARE BEING SAID FOR ALICIA THE LORD HAS HEARD THEM ALL AND IS AANSWERING THEM. GOD IS GREAT!!!!!!!!!!

DAY +17

WE JUST GOT AWESOME NES FROM THE DOCTOR THIS MORNING. HE SAID THAT ALICIA HAS DONE A REMARKABLE TURN AROUND WITH HER RECOVERY!!!!!! SHE WILL GET OUT OF THE ROOM TODAY AND WALK THE HALLS TODAY, HER ANC WAS AT 720 THIS MORNING!!!!!!!! AND HER WBC WAS AT 1.2!!!!!!!

NOW THE GOAL IS TO WEIN HER OFF OF SOME OF THE MEDS THAT ARE IV AND SWITH SOME TO ORAL SO WE CAN BREAK OUT OF HERE AND GO TO THE RMH!!!!!!!!!!!!!!!! YESTERDAY THEY TOOK HER OFF OF ONE ANTI-BIOTIC, AND TODAY THEY ARE TAKING HER OFF OF TPN WHICH SHOULD LEVEL OUT HER GLUCOSE LEVEL AND THEY ARE WEINING HER OFF THE PAIN MED STARTING TODAY ALSO AND SWITCHING ONE OF HER MEDS FROM IV TO THE TUBE!!!!!

WE ARE SO EXCITED. I HOPE WHEN THEY DO NOT OPEN THE DOOR AND ALICIA IS BY MY SIDE THIS AFTERNOON THAT WE DON'T JUST KEEP MOVING TOWARD THE ELEVATOR AND OUT THE FRONT DOOR. ALICIA IS SO HAPPY TO GET TO LEAVE THE ROOM!!!!!!!!!!!!!!!!!!!!

TOMORROW I PROMISE TO POST PICTURES OF HER IN THE HALL. WISH US LUCK.

DAY +16

YESTERDAY WAS A GOOD DAY, WE HAD A FEW BUMPS BUT OVERALL IT WAS A PRETTY GOOD DAY.

THE SORES IN ALICIA'S MOUTH ARE STARTING TO HEAL, WHICH IS CAUSING ALICIA TO BITE ON THE SCABS ON THE INSIDE OF HER MOUTH. SHE IS BITING SO MUCH THEY ARE BLEEDING, I HAVE TRIED EVERYTHING TO KEEP HER FROM DOING IT BUT NOTHING IS WORKING. I DO NOT KNOW WHAT TO TRY NEXT. IT HELPS A LITTLE TO HAVE HER SUCK ON ICE BUT THAT ONLY LASTS SO LONG. THI PICTURE IS OF HER BITING ON HER MOUTH.......



















EVERYONE IS PROBABLY WONDERING WHAT IS THE DEAL WITH THE GLOVES. WELL THAT WAS OUR FIRST BUMP YESTERDAY. ALICIA'S POOR LITTLE FINGERS ARE SO SORE FROM BEING POKED FOR BLOOD TO GET HER SUGAR LEVEL THAT SHE STARTED PEELING THE SKIN ON HER FINGER TIPS, SO THIS WAS MY WAY TO PREVENT THAT WHICH HAS WORKED VERY WELL. NOW IF I COULD ONLY COME UOP WITH A PLAN FOR HER MOUTH UNTIL THEY BOTH HEAL.

OUR LAST LITTLE STUMBLE WAS ABOTU TEN THIRTY LAST NIGHT. ALICIA SWOLL UP LIKE A BALLOON. SHE WAS SO SWOLLEN HER DIAPER WOULD NOT EVEN FIT. I GUESS SHE WAS TAKING IN TO MUCH FLUID AND NOT PEEING FAST ENOUGH SO THEY GAVE HER SOME MEDICINE CALLED LASIKS THAT MADE HER PEE ALOT SO NEEDLESS TO SAY I DID NOT GET MUCH SLEEP LAST NIGHT BETWEEN VITALS. FINGER POKES FOR BLOOD SUGAR LEVELS, INSULIN SHOTS AND CHANGING DIAPERS EVERY THIRTY MINUTES.

ALICIA LOVED THE FIREWORKS LAST NIGHT. SHE COULD SEE THEM OUT HER WINDOW IF SHE STOOD UP IN HER BED, WE ALSO WATCHED THE MACY FIREWORKS SHOW ON TV SO SHE KEPT LOOKING BETWEEEN THE BOTH. I SAT IN BED WITH HER (SO SHE WOULD NOT FALL WHEN SHE STOOD TO SEE THE ONES OUTSIDE) WE HAD A REALLY GOOD TIME. I DID MISS BEING AT HOME WITH ERIKA AND THE BOYS BUT NEXT YEAR WE WILL HAVE AN AWESOME 4TH. THIS PICTURE IS OF US WATCHING THE FIREWORKS OUT THE WINDOW....















TODAY HAS STARTED OUT VERY GOOD. WE ARE ON OUR 7TH SPONGE BOB EPISODE. ALICIA GOT UP FEELING VERY WELL. HER SWELLNESS HAS WENT DOWN, I HAVE WASHED AND LOTIONED HER UP, CHANGED HER CLOTHES AND SHEETS AND NOW SHE IS WATCHING MORE SPONGE BOB. (GREAT)

BUT THE BEST NEWS IS ALICIA HAS AN ANC OF 5OO!!!!!!!!!!!!!!!!!!!!!! THE DOCTOR JUST TOLD US THAT IF HER ANC IS OVER 500 TOMORROW THAN ALICIA WILL BE ABLE TO WALK IN THE HALL FOR A WHILE !!!!!!!!!!!!!!!!!!!!! I AM SOOOOOOOOOOOOO EXCITED FOR HER. WILL EVERYONE PLEASE PRAY THAT ALICIA'S ANC IS OVER 500. I THINK THAT WILL HELP RAISE HER SPIRITS WHICH WILL HELP HER HEAL FASTER AND MOVE CLOSER TO GOING HOMW TO OUR FAMILY.

SHE IS ALSO EATING PRETTY WELL THIS MORNING ALSO. SHE HAS ATE TWO FRENCH TOAST STICKS, EGGS (WITH KETCHUP) AND CHOCOLATE MILK. ANS SHE IS ALREADY ASKING FOR PIZZA. (WHAT EVER IT TAKES:)

I WILL UPDATE IN THE MORNING ( KEEP YOUR FINGERS CROSSED ON HER ANC)

THIS IS HER TODAY.........................

DAY +15

HAPPY 4TH OF JULY!!!!!!!!!!!!!!!!!!!

TODAY HAS STARTED OUT TO BE AN AWESOME DAY SO FAR. ALICIA WOKE UP THIS MORNING FEELING VERY WELL. IT MIGHT HAVE BEEN FROM RECIEVING BOTH RED CELLS AND PLATELETS YESTERDAY, SHE LOOKS VERY GOOD.

SHE IS ACTING LIKE SHE IS STARVING, SHE HAS ALREADY ATE CEREAL, PIZZA, STRING CHEESE AND CHOCOLATE MILK AND IT IS ONLY 1PM HERE.

HER ANC IS UP TO .4 TODAY AND WBC IS .9. THAT MEANS HER CELLS ARE GROWING!!!! THEY SAID AT THIS RATE WE WILL BE OUT OF HER AND ON TO THE RMH IN NO TIME AT ALL!!!!!

SHE DID HAVE A COUPLE OF BUMPS YESTERDAY, SHE IS STILL HAVING PROBLEMS WITH HER GLUCOSE LEVEL, FROM THE FEEDS AND TPN'S. THEY STARTED GIVING HER INSULIN YESTERDAY AND STILL HAVE NOT GOT IT UNDER CONTROL TODAY YET. I THOUGHT SHE WOULD HAVE A HARD TIME WITH HAVING TO TAKE THE SHOTS BUT ONCE AGAIN SHE PROVED HOW STRONG SHE IS AND WRONG I WAS. SHE ACTUALLY LAUGHED THE FIRST SHOT SHE GOT YESTERDAY LIKE IT TICKLED. (SHE IS SUCH A BIG GIRL) HOPEFULL THEY WILL GET HER SUGAR LEVEL UNDER CONTROL.

I HOPE EVERYONE ENJOYS THEIR HOLIDAY. WE ARE GOING TO WATCH THE FIREWORK SHOW ON THE LOCAL CHANNEL HERE TONIGHT. NEXT YEAR THE 4TH WILL BE AN AWESOME "INDEPENDENCE DAY"

DAY +14

YESTERDAY ALICIA HAD AN AWESOME DAY!!!!!!! SHE STAYED AWAKE ALMOST ALL OF THE DAY. AS YOU CAN SEE BY THE PICTURES SHE EVEN GOT OUT OF BED!!!!! SHE PUSHED THE HUGE IV STAND ALL BY HER LITTLE BITTY SELF AROUND THE BED AND BACK AGAIN!!!!! I ALMOST CRIED. I WAS SO PROUD OF HER. THIS IS ONE STEP CLOSER TO RECOVERY. OUR GOAL IS TO GET HER UP EVERY DAY AS LONG AS SHE IS WELL ENOUGH. IT DID TAKE ALOT OUT OF HER, IT WASN'T LONG AFTER THAT SHE FINALLY WENT TO SLEEP. SHE EVEN ATE A HALF OF A PIECE OF PIZZA AND TOOK THREE DRINKS OF CHOCOLATE MILK. THEY SAID IF SHE KEEPS GOING FORWARD IN THIS SPEED AND SHE HAS COUNTS THAT WE COULD BE OUT AND AT THE RMH BY TWO TO THREE WEEKS. I SURE HOPE SO.

THIS MORNING STARTED VERY EARLY. THE NURSE CAME IN AND NEEDED TO DO A FINGER POKE TO GET BLOOD. ALICIA'S GLUCOSE LEVEL WAS THREE TIMES OVER THE LIMIT. THEY DREW IT EVERY HOUR AFTER LOWERING HER TPN AND IT SEEMED TO BE GOING DAON A LITTLE. TONIGHT THEY ARE GOING TO TRY TO KEEP HER OFF THE TPN AND UP HER FEED LEVEL SO HOPEFULLY THAT WILL WORK.

I HAVE COMPANY ALL DAY. CAMERON IS HERE STAYING WITH US WHILE TINA IS WITH JO. SHE IS HAVING SURGERY TODAY SO PLEASE KEEP HER IN YOUR PARYERS.

ALSO PRAY ALICIA HAS ANOTHER DAY JUST LIKE YESTERDAY!!!

DAY +13

ALICIA'S MORNING STARTED OFF THE SAME AS THE LAST THREE. I THOUGHT THOUGH IF I WAS TO WORK WITH HER A LITTLE AND TRY SLOWING TO HAVING HER SIT UP AND PLAY A LITTLE THAT MIGHT HELP HER TO START FEELING A LITTLE BETTER. i GAVE HER A SPONGE BATH AND CHANGED HER CLOTHES AND BEDDINGS BUT THAT DIDN'T WORK TO WELL SHE STILL WANTED TO LAY DOWN SO I THOUGH OK LETS MOVE TO PLAN B.......... I CAN TRY TO BRIBE HER........... THEN I THOUGHT WHAT WOULD WORK......... THEO WAS COMING..........THAT WAS IT. I KNEW THAT IF I TOLD ALICIA THAT SHE WOULD HAVE TO GET UP AND PLAY WITH THEO IF HE CAME THAT THEO JUST MIGHT BE THE TRICK, AND I WAS RIGHT.

JESSE BROUGHT THEO AS PROMISED AROUN 2PM AND ALICIA WAS SO HAPPY. I HAD HER CLOSE HER EYES AND JESSE SNUCK IN WITH THEO AND WHEN SHE OPENED HER EYES SHE SMILED SO BIG!!!!!! SHE WAS SOOOOOO HAPPY!!!!!

THIS IS JESSE SURPRISING ALICIA WITH THEO

ALICIA TALKS AND ASKS FOR THEO ALL THE TIME. I DO NOT KNOW WHAT IT IS ABOUT THIS PUPPET BUT IT WORKED. SHE SAT UP FOR ALMOST 45 MINUTES AND PLAYED WITH JESSE AND THEO.




LOOK SHE IS UP!!!!!!!!!!!

THIS MORNING SHE SEEMS TO BE FEELIN A LITTLE BETTER. HER COUNTS CAME BAC AND HER ANC IS BACK AT 0.0 BUT ALL THE DOCTORS AND NURSES ARE TELLING ME THAT IS NORMAL. HER WBC IS STILL AT .2, PLATELETS DOWN TO 33,000 AND HBG IS AT 8.2. THERE WAS ONE CONCERN THAT THE DOCTORS HAVE AND THAT IS WITH HER PHOSPHATE LEVEL, WHICH THEY TOLD ME WAS ONE OF HER ELECTROLYTES. THEY ARE GIVING HER EXTRA DOSES TODAY IN HOPES IT GOES UP.

I ALOS HAVE SOME GOOD NEWS. WHEN I WOKE UP THIS MORNING THERE WAS A PATIENT ATTENDANT HERE AND SAID SHE WOULD BE SITTING WITH ALICIA UNTIL THREE THIS AFTERNOON. YES!!!!!!!!!!!!! I CAN WASH CLOTHES AND MAYBE TAKE A SHORT VERY MUCH NEEDED NAP. ALICIA SEEMS TO LIKE HER SO I HOPE SHE DOES NOT GIVE HER TO MANY PROBLEMS. I WILL BE COMING AND GOING ALOT, THERE IS NO WAY I WOULD BE ABLE TO STAY GONE THAT LONG BUT I CAN GET ALOT DONE TODAY KNOWING SOMEONE WILL BE WITH HER ALL THE TIME.

PLEASE KEEP CHARISSE IN YOUR PRAYERS. SHE IS A FRIEND I MET A T CAMP A COUPLE OF YEARS AGO. SHE HAS FA ALSO AND IS FACED WITH SOME CHALLANGES IN HER LIFE AT THIS TIME AND COULD USE SOME EXTRA PRAYERS.

THANK YOU EVERYONE FOR CHECKING UP ON ALICIA

Day +12

THERE IS LIFE!!!!!!! TODAY JO AND CAMERON CAME AND RESCUED ME FORM DORA AND SPONGE BOB!!!!! I WAS STARTING TO THINK THAT THERE WAS NOT LIFE OUTSIDE. I WAS SO GLAD TO SEE THEM WALK THROUGH THE DOOR. TINA AND JACY WERE JUST DOWN THE HALL GETTING PLATELETS SO I WENT TO SEE THEM ALSO. THANK YOU SO MUCH JO AND CAMERON FOR COMING TO MY RECSUE!!!

ALICIA HAD ANOTHER HARD DAY YESTERDAY. I PUSHED HER MORPHINE BUTTON MORE TIMES YESTERDAY THAN I HAVE THE WHOLE TIME WE HAVE BEEN HER. SHE IS SPITTING UP SO MUCH MUCUS AND NOW IT EVEN HAS SOME BLOOD IN IT WHICH I AM SURE IT IS FROM THE SORES IN HER GI TRACK. (THAT HAS GOT TO HURT ALOT). SHE DID NOT EVEN LIFT HER HEAD OFF THE PILLOW YESTERDAY. SHE HAS NOT EATEN BY MOUTH IN SO LONG OR EVEN TAKEN A DRINK. SHE DID TAKE A SIP OF CHOCOLATE MILK WHEN THEY GAVE HER THE MEDS THROUGH THE TUBE BUT THAT WAS IT. SHE SPIKED A FEVER ONLY ONCE YESTERDAY, BUT WITH TYLENOL IT WENT BACK DOWN. HOPEFULLY SHE WILL START FEELING BETTER SOON.

THIS MORNING SHE SEEMS TO BE FEELING A TAD BIT BETTER BUT THE DAY HAS JUST BEGUN. I GAVE HER A SPONGE BATH AND LOTIONED HER UP AND CHANGED HER CLOTHES ( I CHANGE THEM EVERY DAY ) AND SAT HER BED UP AND SHE IS WATCHING DORA. (ON TV, NOT MY FRIEND) HOPEFULLY SHE WILL FILL LIKE EATING A LITTLE TODAY, THAT IS OUR GOAL.

HER CBC'S CHANGED JUST SLIGHTLY. HER PLATELETS ARE DOWN TO 72,000, HBG 8.1. WBC STILL .2 AND ANC .1.

WE HAVE SOMTHING TO LOOK FORWARD TO NOW. DENISE AND HER DAUGHTER CASSIE ( ONE OF ALICIA'S FAVORITE COUSINS) WILL BE HER FOR THE WEEKEND OF JULY 18TH ( THREE WEEKS AWAY), THEN ERIKA WILL BE HERE THE WEEK OF AUGUST 1ST ( I AM SOOOOOOO EXCITED TO SEE HER) THEN MY OLDEST SISTER KELLI, HER DAUGHTER KRISTIAN AND HER SON CJ AND HIS FIANCE' WILL BE THE THE FOLLOWING WEEKEND OF AUGUST 8TH. IT FEELS SO GOOD TO HAVE SOMETHING TO LOOK FORWARD TO!!!!!

THANKS AGAIN TERESA FOR STARTING THIS BLOG. I APPRICIATE IT.