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ALICIA'S JOURNEY WITH FA

Welcome to our blog where we try to keep family & friends updated on our daughter/granddaughter, Alicia, who is one of the most adorable five year olds ever! She was born with a very rare & aggressive disease, called Fanconi anemia, which causes bone marrow failure, as well as different cancers . She is currently undergoing a bone marrow transplant to try to cure her bone marrow issues. If you'd like to gain a little more background, please visit our first entry HERE.



Wednesday, April 30, 2008

April 2008 Guestbook Entries

HI Michelle,
your love just radiates for your grandaughter, Alicia. I think it is wonderful the promise you made to be with her no matter what. It sounds like your dear daughter, Erika, will also need a lot of emotional support and looking after....and it is good to be strong for Alicia but it is also good to be strong for your daughter who will need such care while her daughter who she loves so much, goes through transplant. You are a blessing to your daughter and your grandaughter....and remember to get support yourself, both physically and emotionally as you need it. I love you guys so much and am praying for you lots.
Love Charisse
(FA Adult)
http://charissejournal.blogspot.com

Charisse Howard-Jones/The Prayer Bears
Adelaide, SA Australia - Tuesday, April 29, 2008 8:15 AM CDT


Just wanted to send a note and say hi! Thinking of you.

Dianne

Dianne Ploetz
St. Paul, MN - Monday, April 28, 2008 12:42 AM CDT

Michelle
Just wanted to stop by and tell you I'm praying for you and Alcia. I just know in my heart everything will turn out just fine. Sarah sends a special "Hello" to Alcia. Sarah just the other day was looking at the pictures from camp,she saw the one of her holding Alcia. She looked at me and said "Mommy,I will always remember the good times at camp". We miss you both. Try to hold on to the positve thoughts,let go of the negitive and you both will sail right through this.

Love,
Lori and Sarah
www.caringbridge.org/visit/sarahp

Lori Petersen
Painesville Twp, OH - Sunday, April 27, 2008 9:07 PM CDT

Michelle -
Just wanted you to know that you are in our thoughts and prayers (as always!!) and we're here to support you in any way we can.

I found a copy of the adorable picture of Karly and Alicia at camp last summer so I'll send that to Alicia to remind her of her buddy Karly!!

Sending you lots of love and BIG HUGS!!!
Nancy Ross
www.caringbridge.com/ca/karlyross

Nancy Ross
SC - Friday, April 25, 2008 7:27 AM CDT

((((((((((HUGS))))))))))))))))
I saw you post about going to transplant next month. You know you have your FAmily with you every step of the way.
You're awesome!!! We love you!!

Kayla
- Thursday, April 24, 2008 5:36 PM CDT

Michelle, I just read your post to the prayer bears and wanted to stop by and let you know that I am praying for you and for Alicia. I am praying for a successful transplant, for wisdom for the doctors and those who are caring for Alicia, and for emotional strength and peace for you.
http://www.freewebs.com/prayerbears
http://heatherrain.livejournal.com

Jennifer, a Texas prayer bear
Bridgeport, Texas - Thursday, April 24, 2008 4:20 PM CDT

I'm so glad you were able to share Disney with Alicia! Disney is so awesome for children. Will talk to you soon. God Bless all of you.
Mark Hawkins
Kingman, KS USA - Friday, April 11, 2008 1:38 PM CDT

Hi Alicia, It's me Karly Ross, we played at Camp Sunshine in 2007! I miss you alot!!!!!!! You rock and I hope you're doing well. I just had my 5 year anniversary!!!! Yeah!!! I hope that you will come to Camp Sunshine this year so we can play again. Talk to me on my website! LOVE YOU!! Karly Ross!!! YOU ARE IN MY THOUGHTS AND PRAYERS!!!!XOXOXOXOXOXOX!!!!
Karly Ross
- Friday, April 4, 2008 2:03 PM CDT

Hi Alicia
My name is Jenna and I came across your site. You are beautiful inside and out. You are a brave, courageous fighter, and you will be in my thoughts and prayers.
caringbridge.org/visit/champ291

Jenna
Kamloops, BC Canada - Wednesday, April 2, 2008 10:51 PM CDT

Thursday, April 24, 2008

April 2008 entries

Sunday, April 27, 2008 5:16 PM CDT

THE PAST THREE DAYS HAVE BEEN HARD. BUT TODAY HAS BEEN BETTER AND I KNOW TOMMORROW IS ALMOST HERE. I KNOW NOW THAT I WLL BE ABLE TO OVERCOME ANY OBSTACLE, AND I FEEL I CAN BE STRONG FOR ALICIA.

ERIKA HAS BEEN HAVING A HARD DAY TODAY. IT HURTS ME SO BAD TO SEE ALL THE WORRY ON HER FACE. SHE IS SPENDING ALOT OF TIME WITH ALICIA THIS WEEKEND, THEY LOVE EACHOTHER SO MUCH.

TOMORROW IS GOING TO BE A BUSY DAY. I WANT TO BR ABLE TO GET ANY OF THESE LEGAL ISSUE'S WE ARE HAVING BEHIND US ABOUT ME BEING ABLE TO MAKE DECISIONS ON ALICIA'S BEHALF DURING TRANSPLANT. I AM SURE I WLL BE ON THE PHONE ALOT WITH KARI TOMORROW FROM CINCINNATI.

ANOTHER WORRY ON MY MIND ALOT IS MAKING SURE ERIKA CAN GET THERE AS OFTEN AS SHE CAN. I CHECKED ONLINE AND IT IS $550 FOR A ROUND TRIP TICKET TO CINCINNATI, BUT I FIND OUT TOMORROW ALSO IF I HAVE CONQUERED THAT ISSUE AS WELL. I JUST WANT EVERY CONCERN PUT BEHIND ME SO I CAN FOCUS AND GETTING MYSELF STRON FOR ALICIA.

I KNOW SHE WILL NEED MY EVERY IOTA OF STRENGTH,COURAGE AND COMFORT TO GET THROUGH THIS, AND I MADE A PROMISE TO HER WHEN SHE WAS FIRST BORB THAT I WILL ALWAYS BE WITH HER AND NEVER LEAVE HER AND I PROMISE EVERY TIME SHE OPENS HER EYES SHE WILL SEE ME AND THERE WILL NOT BE A SECOND IN HER LIFE WHERE I WILL NOT BE THERE. SHE IS MY EVERYTHING.

SHE IS ASLEEP RIGHT NOW LAYING BESIDE ME. SHE LOOKS SO SMALL. SHE IS SOOOOOO BEAUTIFUL. I LOVE HER WITH ALL MY HEART.

MEE-MA MICHELLE


Thursday, April 24, 2008 8:38 PM CDT

WELL TODAY IS ONE I WILL REMEMBER FOR A LONG TIME (BUT HOPEFULLY NOT FOREVER).

THE CALL CAME TODAY THAT WE HAVE BEEN KNEW WOULD COME FOR OVER FIVE YEARS NOW. ALICIA IS GOING TO TRANSPLANT, WE HAD ANOTHER CBC DONE THIS MORNING AND DR DAVIES FEELS IT IS TIME TO MOVE TO TRANSPLANT.

SHE SAID ALICIA NEEDS TO BE THERE THE WEEK AFTER ERIKA HAS THE BABY. ERIKA IS ALREADY SCHELED FOR A C-SECTION ON MAY 19TH, SO THEY ARE LOOKING TO START HER PRE TRANSPLANT WORK UP THE WEEK OF THE 26TH, AND TRANSPLANT DIRRECTLY AFTER THE FIRST WEEK OF JUNE, SHE SAID SHE WOULD FEEL BETTER THAT WAY BECAUSE ALICIA HAS A PERFECT COD ALREADY.

I THOUGHT I HAD MYSELF READY FOR THAT CALL BUT I WAS WRONG. TODAY HAS BEEN A VERY HARD DAY FOR ME AND ERIKA. BUT TOMORROW IS ALMOST HERE AND IT IS A WHOLE DIFFERENT DAY AND I KNOW I HAVE TO PULL MYSELF TOGETHER.

SO MUCH HAS BEEN GOING THROUGH MY MIND, ERIKA WILL STILL BE IN THE HOSPITAL OR JUST HOME WHEN WE HAVE TO LEAVE, THE BABY WILL NOT EVEN BE A WEEK OLD. AND ERIKA WILL BE RECOVERING FROM A C-SECTION.

WE HAVE SO MUCH TO HANDLE AND ONLY THREE WEEKS TO DO IT. I HAVE NEVER BEEN SOOOOO SCARED IN MY LIFE.

PLEASE KEEP ALICIA IN YOUR PRAYERS, SHE IS MY VERY BEST FRIEND.

MEE-MA MICHELLE


Sunday, April 20, 2008 10:22 PM CDT

WE HAD A VERY GOOD WEEKEND, I SPENT ALOT OF TIME WITH MY TWIN SISTER, DENISE. SHE MADE ME SIT DOWN AND WATCH A NEW MOVIE THAT JUST CAME OUT CALLED TODD SWEENEY. I DID NOT LIKE IT TOO WELL BUT DENISE THOUGHT IT WAS A VERY GOOD MOVIE, TO MUCH SINGING FOR ME.

ALICIA HAD ANOTHER CBC DONE ON THURSDAY AND HER PLATELETS ARE DOWN TO 12,000 NOW. THIS HAS ME VERY WORRIED BUT AS EVERY KNOWS HER PLATELETS HAVE HAD ME WORRIED FOR A LONG TIME. DR DAVIES WANTS ANOTHER COUNT DONE IN ONE WEEK SO HERE I AM DOING THE WAITING AND WORRYING GAME AGAIN. I SO HOPE THEY GO BACK UP BUT IT HAS BEEN SO LONG SINCE I HAVE SEEN THAT. HER OTHER COUNTS HAVE DROPPED ALSO, HER HB IS AT 9.9 WHICH DROPPED A LITTLE MORE THAN USUAL WHICH HAS ME WORRIED ALSO. I WILL UPDATE ON HER COUNTS JUST AS SOON AS I GET THE RESULTS THIS THURSDAY.

SORRY I HAVE GOT ANY OF OUR PICTURES FROM DISNEY ON HERE YET, THE CD'S ARE AT CHURCH, WHICH I HAD TO MISS THIS SUNDAY SO I WILL PICK THEM UP THIS WEEK.

I WILL UPDATE AGAIN SOON

MEE-MA

Friday, April 11, 2008

April 11, 2008 (Make-A-Wish)

WE HAD THE TIME OF OUR LIFE AT DISNEY WORLD!!!! ALICIA WAS SO EXCITED, SHE HAD THE BIGGEST SMILE ON HER FACE EVERY DAY, I SO WISH WE DID NOT HAVE TO COME BACK HOME AND ALICIA COULD GO TO DISNEY EVERY DAY OF HER LIFE.

BUT MY FEET ARE STILL KILLING ME!!!!!!!!!!!!!!!

THE FIRST DAY DIDN'T GO AS WELL AS WE THOUGHT IT WOULD, ERIKA BARELY MADE IT THROUGH HALF OF THE DAY WITH ALL THE WALKING AND BEING SO FAR ALONG IN HER PREGNACY. BUT WE FIXED THAT PROBLEM AND RENTED HER A MOTOR SCOOTER THE REST OF THE DAYS WE WERE THERE.

THE FIRST DAY WE WENT TO THE MAGIC KINGDOM, WHEN ALICIA SEEN THE CASTLE SHE STARTED JUMPING UP AND DOWN, AS SOON AS WE WENT THROUGH THE CASTLE MICKEY AND MINNIE WERE JUST ON THE OTHER SIDE AND ALICIA KEPT SAYING "LOOK MEE-MA TWO MICKEY MOUSE" IT TOOK US ALMOST THREE DAYS TO GET HER TO FINALLY UNDERSTAND THAT ONE WAS MINNIE MOUSE NOT MICKEY MOUSE.

THE FIRST RIDE SHE WANTED TO DO WAS THE DUMBO RIDE, ERIKA RODE IT WITH HER AND AFTER THE THIRD TIME WE FINALLY GOT HER TO MOVE ON TO SOMETHING DIFFERENT. SHE ALSO LOVED THE TEA CUPS, ERIKA WAS TAKING CARE OF LITTLE ANSHON SO I GOT THE PRIVLAGE OF RIDING THIS ONE WITH HER, THE TEA CUPS WERE EVEN HARDER TO PULL HER AWAY FROM, I HAD TO PROMISE WE WOULD COME BACK AND RIDE AGAIN AFTER THE FOURTH TIME OF RIDING IT. AFTER A COUPLE OF OTHER RIDES WE CAME UP TO THE LITTLE MERMAID, ALICIA WAS IN HEAVEN, SHE GOT TO HAVE A SPECIAL VISIT WITH HER SINCE SHE WAS WITH MAKE A WISH, IT WAS SO CUTE BECAUSE ALICIA KEPT ASKING HER TO GO SWIMMING. FINALLY AFTER ABOUT FIFTEEN MINUTES WITH ARIEL I HAD TO CONVINCE HER WE WOULD SEE HER AGIAN. BY THIS TIME IT HAD STARTED RAINING (WHICH IT DID ALOT OF WHILE WE WERE THERE) SO WE FOUND A DRY PLACE TO SIT AND REST AND WAIT FOR THE PARADE OF CHARACTERS. ALICIA ALSO LOVED THE PARADE, WHEN IT WAS OVER SHE KEPT SIGNING "MORE PLEASE" SO WE WENT BACK TO THE TEA CUPS SO SHE COULD RIDE AGAIN AS I HAD PROMISED HER. BY THIS TIME ERIKA WAS HAVING A VERY HARD TIME AND HAD EVEN TAKEN HER SHOES OFF SO WE TOOK ALICIA TO SEE A COUPLE OF THE 3-D SHOWS AND WENT TO MEET THE BIGGER KIDS AND ANSHON AND WENT BACK TO GIVE THE KIDS A WORLD VILLAGE FOR SOME MUCH NEEDED RELEAVE ON ERIKA'S FEET.

THE KID'S VILLAGE WAS AWESOME, THEY TREAT THE KID'S SO VERY WELL THERE!!!!! THE FIRST NIGHT WE WAS THERE WE HAD JUST MADE IT IN TIME FOR DINNER, THEN THEY WERE CELEBRATING CHRISTMAS IN THE CASTLE SO WE TOOK ALL THE KIDS TO SEE SANTA (IN APRIL) THEY ALL GOT A VERY NICE GIFT AND WE TOOK ALOT OF PICTURES THEN WENT TO THE ROOM TO GET SOME MUCH NEEDED REST.

THE 2ND DAY WE WENT TO EPCOT, WE RODE THE RIDE WHERE WE WENT IN THE BALL FIRST, ALICIA GOT SCARED IN THE BEGINNING BECAUSE IT WAS DARK, BUT BY THE TIME IT WAS OVER SHE WANTED TO DO IT AGAIN, I FINALLY DECIDED IF I KEPT LETTING HER RIDE EACH RIDE THREE OR FOUR TIMES THAT WE WOULD MISS ALOT SINCE THERE WAS SO MUCH TO SEE SO I TOLD HER ONLY TWO TIMES AND SHE WAS OK WITH THAT.

ERIKA DID SO MUCH BETTER WITH THE SCOOTER, SHE SAID SHE FUNNY RIDING IT BUT SHE DID NOT CARE BECAUSE SHE FELT BAD FOR HAVING TO STOP SO EARLY THE DAY BEFORE AND LOVED TO SEE ALICIA SO HAPPY.

ALICIA LOVED THE BUILDING WHERE ALOT OF THE CHARACTERS WERE, WE GOT TO GO STRAIGHT TO THE FRONT OF EACH LINE AND WE GOT PICTURES WITH ALL OF THEM, THIS WAS STILL THE 2ND DAY AND IT WAS BEFORE SHE UNDERSTOOD THAT THERE WERE NOT TWO MICKEY'S SO SHE KEPT CALLING MINNIE MICKEY AGAIN. AFTER WE TOOK PICTURES WE TOOK HER TO THE NEMO RIDE, (JUST IN TIME BEFORE IT STARTED RAINING AGAIN) WE HAD NO PROBLEM LETTING HER RIDE THIS ONE MORE THAN ONCE SINCE IT WAS INSIDE AND WE HAD TO WAIT FOR IT TO STOP RAINING.

AFTER THE RAIN SLOWED DOWN WE WENT TO THE HONEY I SHRANK THE AUDIENCE SHOW, ALICIA DID NOT LIKE THIS ONE TO WELL, SHE GOT SCARED WHEN THEY BLEW UP THE DOG SO SHE TOOK HER GLASSES OFF AND KEPT SAYING "DOG BITE" IT WAS SO CUTE WE ALL JUST LAUGHED AT HER.

WHEN IT FINALLY STOPPED RAINING WE ALL DECIDED TO GO BACK TO MAGIC KINGDOM TO SEE SOME OF WHAT WE MISSED THE DAY BEFORE WHEN ERIKA HAD TO STOP EARLY BUT BY THE TIME WE TOOK THE MONARAIL TO THE MAGIC KINGDOM IT STARTED RAINING AGIAN AND THE KIDS WERE SOAKED SO WE DECIDED TO GO BACK TO THE VILLAGE AND TRY AGAIN THE NEXT DAY.

WHEN WE GOT TO THE VILLAGE WE HAD DINNER AND STAYED IN THE ROOM SO THE KIDS COULD REST, ABOUT 9:15 THERE WAS A KNOCK ON THE DOOR AND IT WAS MRS MARY, THE MAYOR CLAYTONS WIFE, WHICH IS A SIX FOOT RABBIT, SHE HAD COME TO TUCK ALICIA INTO BED. ALICIA WAS SO HAPPY BUT SHE WAS NOT GOING FOR THE RABBIT MAKING HER GO TO BED, SHE TOLD MRS MARY FOR HER TO GO NIGHT NIGHT, SO ALICIA AND A SIX FOOT BUNNY BOTH GOT INTO BED, IT WAS SOOOO CUTE.

THE THIRD DAY WAS BY FAR ALICIA'S FAVORITE. WE WENT TO UNIVERSAL STUDIO'S AND THE FIRST CHARACTER SHE SEEN WAS DORA. I DID NOT EVEN HAVE A CHANCE TO LET THEM KNOW SHE WAS WITH MAKE A WISH SO SHE COULD GO TO THE FRONT BECAUSE ALICIA RAN STRAIGHT UP TO HER. I TOOK ALOT OF PICTURES, IT WAS SO HARD TO GET ALICIA TO LEAVE DORA, THE ONLY THING THAT SAVED ME WAS SPONGE BOB NEXT DOOR, WE TOOK PICTURES WITH SPONGE BOB AND THEN WNT ON THE JIMMY NEUTRON RIDE, (WHICH WAS A MISTAKE, ALICIA GOT A BIG BRUISE FROM THAT SHOW). NEXT WE WENT TO THE SHREK SHOW WHICH ALICIA LOVED, I THOUGHT SHE WOULD BE SCARED BECAUSE THIS ONE WAS ALSO 3-D BUT SHE LOVED IT AND KEPT HER GLASSES ON THROUGH THE WHOLE SHOW. AFTER THE SHOW WE WENT AND TOOK PICTURES WITH SHREK AND FIONA.

NEXT WAS THE TWISTER SET, ALICIA LOVED THAT ONE ALSO, I AM VERY SCARED OF STORMS BUT IT WAS NOT THAT BAD, ALICIA WAS NOT SCARED AT ALL. WE THEN CAME TO THE MUMMY WHICH IS A FAST AND SCARY ROLLER COASTER, I DECIDED TO HAVE ALICIA SIT THIS ONE OUT AND WENT TO GET HER A DRINK WHILE THE REST RODE IT, EVEN ERIKA, THAT WAS A HUGE MISTAKE ALSO.

THEN WE WENT IN THE DISATER SET, IT IS A MOVIE FILMED WITH PEOPLE CHOSEN OUT OF THE AUDIENCE, WHEN THEY ASKED FOR A GRANDMA TO PLAY A ROLE, ERIKA AND ANSHON BOTH JUMPED UP AND DOWN AND POINTED AT ME, I COULD OF KILLED THEM!!!! I DID GET PAY BACKS THOUGH WHICH I WILL EXPLAIN A LITTLE LATER.

FINALLY WE CAME TO BARNEY, WHICH WAS THE BEST. ALICIA AND I WENT TO THE SHOW WHILE THE BIGGER KIDS WENT ON THE BACK TO THE FUTURE RIDE, ALICIA LOVED IT, AFTER THE SHOW THEY HAD ALICIA STAY AND GOT A SPECIAL VISIT WITH BARNEY. I ALMOST CRIED. THEN HERE CAME THE RAIN AGAIN SO WE HAD TO HEAD BACK TO GIVE THE KIDS A WORLD VILLAGE.

THE NEXT DAY WE WENT TO THE ANIMAL KINGDOM WHICH WAS MY FAVORITE. I LOVED THE SAFARI THROUGH AFRICA WHERE THE ANIMALS COME RIGHT UP TO THE TRUCK, IT WAS VERY COOL. WE CAME ACROSS A JAMAICA SHOW WHERE THEY WERE DOING A DANCE AND PULLING PEOPLE FROM THE AUDIENCE AND THIS IS HOW I GOT MY PAY BACK ON ERIKA, IT WAS SO FUNNY TO WATCH HER OUT THERE DANCING WITH HER BIG BELLY, I WAS JUST SO GLAD I GOT THE CHANCE TO PAY HER BACK.

THAT DAY IT DID NOT RAIN THAT MUCH SO WE GOT THE CHANCE TO GO BACK TO THE MAGIC KINGDOM TO SEE SOME OF WHAT WE MISSED THE FIRST DAY. ALICIA RODE THE TEA CUPS AND DUMBO RIDE AGIAN, BUT HER FAVORITE WAS THE WINNIE THE POOH RIDE AND THE SNOW WHITE RIDE. BUT AGAIN IT STARTED RAINING SO WE WENT BACK TO THE VILLAGE.

THE LAST DAY WE WENT TO SEA WORLD,WHICH WAS KIND OF A DISSAPOINTMENT, WE DID NOT GET TO SEE ANY OF THE SHOWS BECAUSE WE HAD TO GET THERE ONE AND A HLF HOURS EARLY TO GET IN EVEN WITH BEING WITH MAKE A WISH. WE ALL KNEW ALICIA WOULD OF GOT IMPATIENT AND BAD IF WE WAITED SO WE TOOK HER ON ALL THE LITTLE RIDES AND WENT BACK TO THE VILLAGE AND TOOK HER SWIMMING.

WE ARE ALL EXHAUSTED BUT IT WAS WELL WORTH THE MEMORIES WE WILL HAVE FOR EVER. I WILL POST THE PICTURES I TOOK JUST AS SOON AS THEY ARE DEVELOPED ( I TOOK OVER 300 )

MEE-MA