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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.



Friday, May 30, 2008

May 2008 Guestbook Entries

HI Michelle,
I am so glad that Alicia went well through her surgery. What an incredible platelet count after the transfusion! Hehe. Don't worry, it is very normal for children to yell, scream and be distressed in the recovery room. The anaesthetic changes their demeanor and they do that....Isaac has done that after surgery as well and it is quite distressing to witness.
Well done for getting through another day my love.
Love Charisse
(FA Adult)

Charisse Howard-Jones/The Prayer Bears
Adelaide, SA Australia - Saturday, May 31, 2008 9:02 PM CDT


Michelle,
YOU hang in there. We are praying for you both. I am happy to hear that Alicia did well with her central line. I am praying for you both, God is with you. We will try and see you when we are in Cincy on June 9th. Tell Alicia that Sarah said HELLO. She misses her and wants to see her.
We will pray and be with you all the way through this.

Love,

Lori
www.caringbridge.org/visit/sarahp


Lori Petersen
Painesville Twp, OH - Saturday, May 31, 2008 8:36 PM CDT

Michelle,
YOU hang in there. We are praying for you both. I am happy to hear that Alicia did well with her central line. I am praying for you both, God is with you. We will try and see you when we are in Cincy on June 9th. Tell Alicia that Sarah said HELLO. She misses her and wants to see her.
We will pray and be with you all the way through this.

Love,

Lori
www.caringbridge.org/visit/sarahp


Lori Petersen
Painesville Twp, OH - Saturday, May 31, 2008 8:35 PM CDT

Thanks for the update Michelle. I am glad the central line is in. It sounds like Alicia is doing very well, and her Grandma did a great job as well! You are all in our thoughts and prayers! Love, John, Dianne and Michelle
Dianne Ploetz
- Saturday, May 31, 2008 12:38 AM CDT

Hi Michelle,
well done on getting through the next lot of appointments and blood draws. I can imagine that having the central line will be a reality check and I wait to hear how you both went with that. Alicia is being such a brave girl! You are being such a brave grandma! How is Erika and the new baby?
I will be constantly checking for more updates.
Love Charisse
(FA Adult)
http://charissejournal.blogspot.com

Charisse Howard-Jones/The Prayer Bears
- Friday, May 30, 2008 9:19 PM CDT

Hang in there guys! I remember how sick I felt when I saw Erin's central line for the very first time. But, I can tell you this -- very quickly we came to LOVE that thing! Erin went over a year without having one "owie" or "poke" -- and that took all of the fear out of her hospital/doctor visits. She actually came to enjoy our visits with the doctors and nurses. Hang in there. Remind yourself that this is the first step toward Alicia's new, healthy life! We're keeping you in our prayers.

- the McKee Family (oh/erinmckee)

Barbara McKee
Bethel, OH US - Friday, May 30, 2008 2:57 PM CDT

You did it! The first day accomplished! I am still praying for you guys as you go on this journey. I will keep my prayer group here in Australia informed.
Love ya,
Charisse
(FA Adult)

Charisse Howard-Jones/The Prayer Bears
Adelaide, SA Australia - Thursday, May 29, 2008 5:40 PM CDT

Congratulations on getting to Ohio safely and starting this new chapter in Alicia's life! My thoughts and prayers are with you, and I am smiling thinking about Alicia riding that bike up and down the hallways. It reminds me of her at outside recess at Caldwell.
Jill Allison
Kechi, KS USA - Thursday, May 29, 2008 10:33 AM CDT

When Wesley gets crazy and runs around like a monkey I just tell myself that it's good he has such a spicy, spunky attitude. They all need it to fight the battle. Hugs!
Kristin Young
Gorham, me usa - Wednesday, May 28, 2008 3:32 PM CDT

Hey Michelle and Alicia,

Thanks for the update. You are in our thoughts and prayers! Love, John, Dianne and Michelle

Dianne Ploetz
- Wednesday, May 28, 2008 10:38 AM CDT

You & your family our in our thoughts & prayers.
Candice Behm
Portland, OR USA - Wednesday, May 28, 2008 1:16 AM CDT

Hello Alicia . We followed the link from our friend Emma's page . We will be praying for you that everything goes well with your transplant . Its really neat , we have the same last name :>)

www.caringbridge.org/visit/margaretreed1

Tracy
Corry , PA - Tuesday, May 27, 2008 11:09 PM CDT

Hi! This is Emma Clifton's aunt, Siouxsie. I just heard about sweet Alicia heading into transplant. Our prayers and best wishes are with all of you, especially as you deal with the added difficulty of Mom not being able to be there. We look forward to updates that will hopefully be stories of a smooth, successful transplant. With love from Texas!!
Siouxsie Elieson
Anna, TX USA - Tuesday, May 27, 2008 8:08 PM CDT

Hi there,
You don't know me, but I am a volunteer up at Camp Sunshine. I have been following your website as well as many other of the FA kids, but I wanted to write a note letting you know that you are in my thoughts and prayers.
Sending my best wishes,
Erica

Erica Finegan
Worcester, MA - Tuesday, May 27, 2008 6:56 PM CDT

We will check on you everyday and I can't wait to have my dancing partner back again at camp soon.

Hugs,
Kristin Young (Wesley's mom)

Kristin Young
Gorham, me - Tuesday, May 27, 2008 9:35 AM CDT

Michelle,
I am with you my love...praying and checking on you and supporting you.
Love Charisse

Charisse Howard-Jones/The Prayer Bears
Adelaide, SA Australia - Tuesday, May 27, 2008 8:27 AM CDT

Michelle,

Know we are praying for you all! Hang in there and keep us posted!

Blessings and Bear Hugs,

Donna Boggs, Papa Bear’s Site
Coeburn, VA - Tuesday, May 27, 2008 7:04 AM CDT

Michelle, first I want to let you know that the whole family is in my prayers. Second, congratulations to Erica on the arrival of baby Jayshon.
http://www.freewebs.com/prayerbears
http://heatherrain.livejournal.com

Jennifer, a Texas prayer bear
Bridgeport, Texas - Saturday, May 24, 2008 1:16 AM CDT

Hi Alicia and grandma! I just wanted to let you know that I just happened to check your web page today -- and I had no idea you were heading to Cincinnati for transplant so soon! I met you last year at the FA Family Conference at Cincinnati Children's Hospital. My daughter, Erin, underwent a bone marrow transplant in Minneapolis for FA in May of 2005. We received all of Erin's follow-up care at Cincinnati Children's Hospital (we live about 30 minutes from Cincinnati Children's hospital) and we really love Dr. Davies! She helped us through some tough times, and she is wonderful. Keep the faith! Cincinnati Children's Hospital is a leader in Bone Marrow Transplants for FA children -- they do an excellent job, and they will take VERY good care of Alicia. You will be in our prayers in the days and weeks to come.

-the McKee Family (oh/erinmckee)

Barbara McKee
Bethel, OH US - Monday, May 19, 2008 1:42 PM CDT

Hello Alicia,
Hope all is well with you. We will be in Cincy at the same time of yoiur transplant. WE Will see you then. You hang in there all are prayers are with you and the family.

Michelle and Ericka Happy Mothers Day !

Love,
Lori and Sarah (FA-A)
www.caringbridge.org/visit/sarahp

Lori & Sarah Petersen
Painesville Twp, OH - Sunday, May 11, 2008 10:45 AM CDT

Happy Mother's Day weekend! Love, Dianne
Dianne Ploetz
St. Paul, MN - Friday, May 9, 2008 10:58 AM CDT

Hey Alicia and Michelle!

Hope you are all ok! Hang in there and keep us posted! Know we are praying for you all!

Blessings and Bear Hugs,

Donna Boggs, Papa Bear’s Site
Coeburn, VA - Tuesday, May 6, 2008 12:02 AM CDT

Sunday, May 11, 2008

Mother's Day

HAPPY MOTHERS DAY TO ALL FA MOTHERS, GRANDMOTHERS, AND EVERY OTHER MOTHER OUT THERE.

TODAY WAS A BAD DAY BUT IN A VERY GOOD WAY. BUT IT IS A DAY THAT I WILL ALWAYS REMEMBER EVERY MOTHERS DAY THAT THE LORD GIVES US TOGETHER FROM NOW ON.

WE HAD A REALLY GOOD TIME, EVERYONE FINALLY GOT TO THE PARK AROUND THREE, ( WAITING ON ERIKA, I THINK SHE WILL BE LATE TO HER OWN WEDDING.) I THINK WE HAD THE BIGGEST PARTY OUT THERE. MY WHOLE FAMILY WAS THERE, MY MOM GRANDMA, ALL MY SISTERS, (EXCEPT ONE BUT THAT IS A LONG STORY) ALL OF THEIR KIDS AND THIER KIDS, ALOT OF SOME OF MY VERY GOOD FRIENDS SURPRISED ME AND THIER FAMILY'S. I HAD A VERY HARD TIME PUTTING UP THE FRONT THAT I WAS HAPPY AND HAVING A GOOD TIME, I HAD MANY TEARS FALL BUT I HAD ON MY SUNGLASSES SO NOBODY EVEN KNEW. I JUST KEPT LOOKING AROUND AT EVERYONE'S FAMILY AND ALL THE KIDS PLAYING AND KEPT THINKING ABOUT SO MUCH THAT WE WILL MISS THIS SUMMER. BUT I KEPT PUTTING ALL THE HAPPY THOUGHTS IN MY HEAD OF ALL THE TIMES TO COME THAT WE WILL BE WITH OUR FAMILY AS SOON AS ALICIA GETS HER NEW CHANCE AT LIFE!!!

I CRIED EVERY TIME I WATCHED ERIKA SWING ALICIA OR WHEN ALICIA WAS CHASING ERIKA'S NINE MINTH PREGNANT HUGE SELF. AND I PLAYED WITH LITTLE ANSHON AND THOUGHT OF EVERYTHING I WAS GOING TO MISS HIM DO FOR THE FIRST TIME AND FOR ALL OF THE TIME I WILL NOT BE ABLE TO GET BACK THAT I AM GOING TO MISS OF BOTH OF MY GRANDSONS LIFE.

BUT I SMILED AND WAS HAPPY WHEN I THOUGHT ABOUT ALL OF THE TIMES TAHT ARE STILL TO COME THAT I WILL NOT MISS, SOON I WILL BE ABLE TO JUST ENJOY AND SPEND TIME WITH ALL THREE OF MY GRANDCHILDREN WITHOUT THE EVERY DAY THOUGHT OF WHAT ALICIA FACES. IT WILL SOON BE BEHIND US AND CAN NOT WAIT TIL NEXT MOTHERS DAY!!!

ERIKA BOUGHT ME A BOTTLE OF MY FAVORITE PERFUME "COOL WATER" AND ALICIA NEVER ACTED UP ONE TIME TODAY. I DID NOT ONE TIME HAVE TO GET ON TO HER ( AND EVERYONE THAT KNOWS HER UNDERSTANDS WHAT I MEAN :)

I HOPE EVERY MOTHER HAD A GOOD MOTHERS DAY JUST LIKE I DID. LORD KNOWS IT TAKES A STRONG MOTHER (AND MEE-MA) TO GET THROUGH EACH DAY WITH DEALING WITH FA.

MEE-MA MICHELLE

Thursday, May 1, 2008

May 2008 entries

Saturday, May 31, 2008 9:13 AM CDT

YESTERDAY WAS SUCH A BUSY DAY. I AM SORRRY FOR NOT UPDATING ON HOW ALICIA DONE WITH THE PLACEMENT OF HER CENTRAL LINE.

SHE DID VERY WELL. WE ARRIVED AT THE HOSPITAL AT 7:30AM BUT SHE DID NOT RECIEVE HER PLATELETS UNTIL 10:15AM. THEY WAITED FOR 20 MINUTES AND DID A CBC AND HER PLATELETS SHOT UP TO 215,000. I WAS LIKE "O MY LORD!!!!!" THAT WAS THE HIGHEST ALICIA'S PLATELETS HAD EVER BEEN IN HER WHOLE ENTIRE LIFE. HER HB DID GO DOWN TO 8.9 BUT THAT HAD TO OF BEEN FROM THE MILLIONS OF TUBES OF BLOOD THEY HAVE TAKEN FROM HER SINCE WE HAVE GOTTEN HERE.

WE DID ALL THE PAPER WORK FOR THE SURGERY AND OFF ME AND ALICIA WENT TOWRARDS THE OR. MY HEART STARTED BEATING SO FAST I THOUGHT IT WAS GOING TO JUMP OUT OF MY CHEST. SINCE ALICIA ALREADY HAD AN IV THEY WERE ABLE TO PUT HER TO SLEEP WITH MEDICATION THROUGH THERE, A NURSE TOLDD ALICIA NITE-NITE AND ALICIA TOLD HER NO, THEN HER HEAD WENT BACKWARDS AND SHE WAS IN LA-LA LAND AND I STARTED BAWLING LIKE A BABY. THANK GOD TINA, JACY AND KEITH WERE THERE OR I PROBABLY WOULD OF LOST IT BUT I SHOOK IT OFF AND WENT TO WAITING FOR MY BABY TO COME OUT OF SURGERY.

WHILE WE WERE WAITING A VERY NICE LADY FROM HOME HEALTH CARE CAME TO THE WAITING AREA AND WENT OVER ALOT OF INFORMATION ON HER CENTRAL LINE AND WHAT I WILL NEED TO DO TO TAKE CARE OF IT DAILY. I WAS TRYING MY HARDEST TO LISTEN TO HER AN PAY ATTENTION BUT MY MIND WAS IN THE OR WITH ALICIA. I DID PICK UP ON THE IMPORTANT PARTS BUT I AM SO HAPPY THERE WILL BE A NURSE COMING THIS MORNING TO SHOW ME AND HELP ME CLEAN IT AND FLUSH IT FOR THE FIRST TIME. SHE JUST CALLED AND WILL BE HERE ING THIRTY MINUTES.

I HOPE ALICIA IS NICER TO THER THAN SHE WAS TO THE NURSES IN THE RECOVERY ROOM. WHEN THEY HAD CAME AND GOT ME TO GO BACK WITH ALICIA WHILE I WAS WALKING BACK ALL I COULD HEAR WAS ALICIA YELLING AT SOMEONE TO LEAVE HER ALONE AND DON'T TOUCH HER. WHEN SHE SAW ME SHE JUMPED RIGHT IN MY ARMS. I FEALT SO SORRY FOR THAT NURSE BUT I AM SURE SHE IS USED TO IT WHEN CHILDREN JUST WAKE UP THEY ARE VERY SCARED.

EVERYTHING WENT WELL DURING THE SURGERY. THEY DOCTOR WHO PLACED THE LINE TOLD ME THAT SHE HAD TO PUT IT IN HER JUGULAR VEIN IN HER NECK BECAUSE OF THEY WAY WHOULDERS AND NECK WAS VERY SMALL AND CRAMMED TOGETHER AND SHE DID NOT WANT TO HAVE ANY RISKS. SO ALICIA HAS A LITTLE CUT ON HER NECK AS WELL. TINA TOOK PICTURES OF HER CENTRAL LINE AND SENT THEM TO ERIKA, SHE HAD A HARD TIME WITH IT AT FIRST BUT AFTER I EXPLAINED WHY AND HOW IT WOULD WORK SHE IS OK WITH IT.

WHEN WE GOT BACK TO TINA'S ALICIA SLEPT ALOT. WE WENT WITH TINA AND KEITH TO TAKE THE GIRLS TO THEIR PROM AND ALICIA SLEPT THE WHOLE WAY. THE GIRLS LOOKED SOOOOO BEAUTIFUL. AND JACY EVEN WON "PROM QUEEN". JO WON "THE MOST GLAMOROUS DRESS OF 2008" SO NEEDLESS TO SAY YESTERDAY WAS A VERY TEARY DAY HERE AT TINA'S HOUSE.

ALICIA STARTED FEELING BETTER AFTER WE ATE, AND YES SHE IS ALREADY BACK TO HER LITTLE USUAL SELF.

NEST WEEK IS ANOTHER BUSY WEEK AND I WILL UPDATE MORE THAN. THANK YOU TO EVERYONE WHO CARES FOR ALICIA EVERYONE'S SUPPORT MEANS ALOT. I KNOW I MENTION THAT ALOT BUT IT IS SO TRUE AND THANK YOU AGAIN SO MUCH.

MEE-MA


Thursday, May 29, 2008 8:44 PM CDT

TODAY WE HAD A GOOD DAY ( NO HOSPITAL ) I TUCKED ALICIA IN EARLY TONIGHT, SHE HAS A LONG DAY AHEAD OF HER TOMORROW. WE HAVE TO BE AT THE HOSPITAL BY 7 AM. SHE WILL RECIEVE PLATELETS FOR THE VERY FIRST TIME EVER. THEN AT 1PM SHE WILL HAVE HER CENTRAL LINE PUT IT. I AM VERY NERVOUS ABOUT THAT. I THINK TOMORROW WILL BE THE REALITY CHECK I HAVE KNOWN IS COMING. I KNOW THAT JUST SEEING THAT LINE HANGING OUT OF HER WILL BE THE SLAP IN MY FACE THAT SAYS "IT IS REALLY TIME". I KEEP FEELING MY HEART BEATING VERY FAST AT TIMES TODAY AND THEN MY MIND KEEPS GOING IN CIRCLES FROM THE BEGGINING TO AN END THAT I HAVE NO IDEA WHAT IS ALL IN BETWEEN. A GOOD FRIEND OF MINE TOLD ME JUST YESTERDAY THAT IT IS SO MUCH EASIER TO JUST TAKE ONE DAY AT A TIME AND HANDLE WHAT IS ON MY PLATE FOR THAT DAY AND WORRY ABOUT THE NEXT DAY WHEN IT GETS HERE.

YESTERDAY WENT FARELY WELL. SHE SEEN THE DENTIST A HE GACE HER A "ALL CLEAR" HE SAID HER TEETH LOOKS GREAT AND NO CAVITIES AT ALL. HE SAID HER PERMANENT TEETH ARE STARTING TO COME IN AND IT LOOKS LIKE SHE WILL BE LOOSING ONE OF HER BOTTOM FRONT TEETH VERY SOON. (I WILL PROBABLY BAWL THAT DAY ALSO. ) AFTER THAT SHE HAD ABOUT A THOUSAND TUBES OF BLOOD DRAWN. THEY TOOK SO MUCH BLOOD FROM HER SO LITTLE BODY. THEY TOOK SO MUCH BLOOD THAT THEY HAD TO USE BOTH ARMS. ALICIA WAS SUCH A BIG GIRL THOUGH. SHE DIDN'T EVEN CRY ONE TIME. WHE WAS SCARED AND KEPT SAYING NO OWIE, BUT THIS TIME I HAD TO TELL HER THAT SHE WAS GETTING AN OWIE. SHE DID REALLY GOOD THOUGH. AFTER HER BLOOD DRAW WE WENT AND SEEN THE DOCTOR WHERE SHE WILL BE GETTING HER RADIATION ON THE 18TH. HE WENT OVER HOW THE RADIATION WILL HAPPEN AND THEN THEY DID A CAT SCAN TO MEASUERE HER LUNGS AND OTHER ORGANS. I DID NOT GET TO GO IN THE ROOM WITH HER DURING THIS TEST BUT THEY SAID SHE DID VERY WELL, AND SHE EVEN GOT A BAG OF M AND M'S (THEY SAID THEY BRIBED HER SO SHE WOULD BE STILL. ) BUT SINCE ALICIA DOES NOT EAT ALOT OF SWEETS, MEE-MA HELPED HER EAT THEM, :)

WELL SEVEN THIRTY COMES EARLY (ACTUALLY SIX THIRTY IS WHEN WE WAKE UP ) SO I WILL LET EVERYONE KNOWS HOW HER SURGERY GOES. I SOOOO APPRICIATE EVERYONE LEAVING MESSAGES IN HER GUESTBOOK. THE SUPPORT IS SO IMPORTANT TO BE ABLE TO GET THROUGH THIS.

MEE-MA


Tuesday, May 27, 2008 7:57 PM CDT

TODAY WENT PRETTY GOOD. THIS MORNING ALICIA HAD AN EKG ASD ECHO DONE ON HER HEART, I DO NOT KNOW ANY OF THE RESULTS YET BUT I THINK HER HEART IS FINE.

WE ALSO HAD CONSULTS WITH THE FINANCIAL ADVISOR, ANGELA, THE SOCIAL WORKER, KARI, AND GOT A TOUR OF THE BMT FLOOR.

THANKS SOOOOOOOO MUCH TO JACY, SHE CAME ALONG AND WATCHED ALICIA WHILE I TALKED TO THE PEOPLE, NEEDLESS TO SAY WHEN WE GOT BACK TO THE HOUSE NO ONE SEEN JACY FOR A LONG TIME. I AM SURE SHE HAD QUITE A HEADACHE. ALICIA IS UPSTAIRS WITH JACY NOW THOUGH BUT I CAN NOT HEAR HER SO MAYBE SHE IS ACTUALLY CALMED DOWN A LITTLE.

WHEN WE GOT THE TOUR OF THE BMT WARD ALICIA WAS RIDING ALL OVER THE HALLS ON A LITTLE DORA BIKE, SHE WAS RUNNING INTO EVERYTHING AND EVERYONE, THE NURSE'S DO NOT EVEN KNOW WHAT IS ABOUT TO COME THEIR WAY. LOL!!!!!!!

TOMORROW WE HAVE TO GO IN EARLY TO GET CBC'S, THEY WANT TO SEE WHAT HER PLATELET COUNT IS BEFORE FRIDAY WHEN SHE GETS HER CENTRAL LINE IN. THEN SHE WILL SEE DENTAL AND DR BRENNAN FOR MEASUREMENTS (WHAT EVER THAT IS)

I ACTUALLY FEEL LIKE I MIGHT BE ABLE TO GET A LITTLE SLEEP TONIGHT (I HOPE) I AM SOOO TIRED, LAST NIGHT I BARELY SLEPT, BUT I THINK THAT WAS JUST BECAUSE OF KNOWING TODAY WAS THE FIRST DAY OF THE TRANSPLANT STAGE AND I AM STILL SOOO SCARED BUT I FEEL A LITTLE BETTER NOW THAT I ALSO HAVE THAT BEHIND ME.

THANK YOU SO MUCH TO EVERYONE WHO IS PRAYING FOR ALICIA AND KEEPING UP ON HER. THIS WOULD BE TOTALLY IMPOSSABLE FOR ME TO GET THROUGH WITHOUT THE SUPPORT OF ALL OF YOU. THANK YOU SO MUCH TERESA FOR YOUR TRIBUTE TO ALICIA ON EMMA'S BLOG. I BAWLED LIKE A BABY WHEN I WAS READING IT BUT IT MEANT SO MUCH TO ME. AND THANK YOU VERY MUCH TINA FOR MAKING ME FEEL SO WELCOME IN YOUR HOME AND HELPING ME COPE WITH ALL OF THESE APPT'S AND THANK YOU SO MUCH FOR EVERYONE WHO IS ALSO DEALING WITH FA, TO TAKE TIME AND GIVE YOUR SUPPORT TO ALICIA AND I MEAN SOOOO MUCH.

MY GRANDSON TURNED ONE WEEK OLD TODAY!!! ERIKA AND ALICIA HAVE TALKED SO MUCH SINCE WE HAVE BEEN HERE. LAST NIGHT SHE HAD TO GO THROUGH THE WHOLE FAMILY, SHE HAD TO TALK TO DADDY AND ALL OF HER BROTHERS AND SISTERS, IT MADE ALICIA SOOOO HAPPY TO TALK TO THEM.

I WILL UPDATE LATER. ALICIA IS COMING DOWN THE STAIRS WANTING A DRINK.

MEE-MA MICHELLE


Monday, May 26, 2008 11:36 PM CDT

HELLO EVERYONE... I AM HAVING TROUBLE SLEEPING TONIGHT SO I DECIDED TO UPDATE ALICIA'S SITE.

WE MADE IT TO CINCINNATI YESTERDAY AFTERNOON. LAST NIGHT WAS THE FIRST NIGHT I ACTUALLY GOT A GOOD NIGHTS REST IN OVER A MONTH. I BELIEVE IT WAS BECAUSE I AM ACTUALLY HERE NOW SO ALL MY WORRY BACK HOME IS NO LONGER THERE. I DO WORRY ABOUT ERIKA ALOT THOUGH, SHE HAS HAD A HARD TIME WITH ALICIA LEAVING BUT THEY HAVE TALKED THREE OR FOUR TIMES TODAY SO I BELIEVE IT IS GETTING BETTER.

TINA HAS MADE US FEEL SO AT HOME!!!! EVEN ALICIA'S LITTLE BAD BUTT!!! SHE WAS SO HAPPY TO SEE JO AND JACY. AND KEITH IS BY ALL HER FAVORITE. HE TOOK HER ON HER VERY FIRST MOTOR CYCLE RIDE TODAY. SHE LOVED IT SOOOO MUCH, SHE KEPT ASKING TO RIDE MORE ALL NIGHT.

TOMORROW ALL THE MADNESS STARTS. THAT IS PROBABLY THE MOST REASON I AM HAVING TROUBLE FALLING ASLEEP. ALICIA IS RIGHT HERE SNORING AWAY THOUGH. THIS IS THE ONLY QUIET TIME I HAVE RIGHT NOW BUT THAT IS OK. I WOULD RATHER HER BE LOUD AND HER LITTLE HYPER SELF THAN SICK AND QUIET ANY DAY OF THE WEEK.

TOMORROW SHE HAS APPT'S WITH THE HEART DOCTOR AND WE ALSO HAVE ALOT OF CONSULTS WITH DIFFERENT DOCTORS AND SOCIAL WORKERS AND FINANCIAL ADVISORS. WE WILL PROBABLY BE AT THE HOSPITAL MOST OF THE DAY. WEDNESDAY SHE WILL SEE DENTAL AND SOMETHING ABOUT MEASUREMENTS WHICH I THINK IS OF HER ORGANS ( I FEEL VERY DUMB SOMETIMES BUT I AM LEARNING) THURSDAY IS THE ONLY DAY SHE DOES NOT HAVE ANYTHING THIS WEEK YET AND THEN FRIDAY SHE WILL HAVE HER CENTRAL LINE PUT IN AND A BIOPSY DONE. SHE ALSO HAS ALOT SET UP FOR NEXT WEEK LIKE CT'S AND HER LIVER TESTS AND OTHERS BUT NOT FOR SURE IF ANYTHING ELSE WILL COME UP BEFORE WE ARE ADMITTED ON THE 12TH OF JUNE AND CHEMO STARTING ONT THE 13TH.

HOPEFULLY THIS WILL ALL BE OVER SOON. I JUST WANT MY LITTLE BEST FRIEND TO GET BETTER!!!!!!

GOTTA GO THE TEARS ARE RUNNING, I WILL UPDATE WHEN I GET SOME RESULTS FROM THE MILLION TESTS THAT ARE ABOUT TO BE DONE ON HER.

MEE-MA


Friday, May 23, 2008 9:34 PM CDT

TODAY IS ONE OF THOSE DAYS I KEEP SAYING I WILL NEVER FORGET. IT HAS BEEN A VERY GOOD DAY BUT I WAS ONCE AGAIN ACTING AND NOT TRYING TO CRY SO EVERYONE CAN SEE HOW I AM REALLY FEELING. ALICIA IS HAVING THE TIME OF HER LIFE. I THINK SHE KNOWS SOMETHING IS GOING ON BECAUSE SHE IS NOT GETTING IN ANY TROUBLE, WHICH IS VERY UNUSUAL FOR ALICIA AND ANYONE THAT HAS EVER MET HER KNOWS WHY I SAY IT IS UNUSUAL FOR ALICIA NOT TO GET IN TROUBLE.

IT HAS BEEN OVER A WEEK SINCE I UPDATED AND IT HAS SEEMED LIKE IT HAS BEEN A LOT LONGER. SO MUCH HAS HAPPENED.

I MOVED OUT OF MY HOUSE LAST WEEKEND. AND I HAVE BEEN STAYING AT ERIKA'S. I THINK I MIGHT HAVE ALREADY MENTIONED THAT I WAS???? I FEEL LIKE THE MONEY I WAS GOING TO PAY FOR RENT CAN BE USED BEST IN DIFFERENT WAYS. AND ERIKA DID NOT HAVE A COMPUTER SO IT TOOK FOUR DAYS TO GET EVERYTHING TRANSFERED FROM MY HOUSE TO HERS.

I AM OFFICALLY ANOTHER MEE-MA. JAYSHON WAS BORN TUESDAY MORNING ON THE 20TH OF MAY. HE IS SOOOO LITTLE, HE WEIGHED 6LBS 3OZ. I THINK HE LOOKS SO MUCH LIKE ERIKA DID WHEN SHE WAS A BABY, I ALSO SEE ALOT OF ALICIA IN HIM. HE IS SOOOO CUTE!!!!!!!

I HAVE BEEN TAKING CARE OF ALICIA AND LIL ANSHON ALL WEEK. ANSHON HAS BEEN STAYING AT THE HOSPITAL WITH ERIKA EVERY NIGHT, SO ME AND LIL ANSHON GOT ALOT OF MEE-MA AND ANSHON TIME!!!! I AM GOING TO MISS HIM SOOOOO MUCH, HERE COMES THE TEARS AGAIN,,,,, I JUST PRAY THAT WITH HIM BEING SO YOUNG THAT HE DOESN'T FORGET!!!!! HE SAID MEE-MA LAST WEEK AND IT IS SO HARD TO FORGET MEE-MA SO I KNOW HE WILL NOT FORGET. I JUST WISH I HAD A LITTLE MORE TIME WITH JAYSHON, TWO DAYS IS JUST NOT ENOUGH.

I FEEL LIKE I AM GOING TO LOOSE IT BUT I KNOW THAT I CAN'T SO I JUST KEEP SMILING AND SAYING "ITS GOING TO BE OK" BUT I JUST WICH I KNEW THAT I WAS SAYING THE TRUTH, LORD GIVE ME STRENGHTH!!!!!!!

TOMMORROW WE ARE HAVING A LITTLE PARTY FOR ALICIA. I KEPT FINDING MYSELF GETTING MAD (AND IT MADE ERIKA EVEN MORE MAD)EVERYONE KEPT CALLING IT A GOING AWAY PARTY FOR ALICIA BUT ERIKA AND I KEPT TELLING THEM SHE IS NOT GOING AWAY, SHE WILL BE BACK VERY SOON,,,,,,, OK HERE COMES THE TEARS AGAIN...... NOW EVERYONE IS SAYING WE ARE HAVING A MEMORIAL "HAPPY DAY" PARTY FOR ALICA. (NOW THAT WAS EVEN WORSE FOR ME BUT I JUST SAID OK COOL) I AM GOING TO PUT ON MY MASK AGAIN TOMMORROW AND HOPEFULLY IT WILL BE OVER SOON!!!!

OUR PLANE LEAVES AT 6:30 SUNDAY MORNING, WE ARE PLANNING ON STAYING WITH MY TWIN SISTER DENISE TOMMORROW NIGHT SO SHE CAN HAVE A LITTLE OF TIME WITH ALICIA ALONE AFTER OUR "PARTY" FOR ALICIA. DENISE IS HAVING ALOT OF MEDICAL PROBLEMS HERSELF RIGHT NOW, SHE HAS NOT SEEN ALICA IN OVER A WEEK CAUSE OF THEM ( SHE IS PASSING A STONE, SORRY DENISE) IT STARTED LAST WEEK SO SHE HAD SURGERY MONDAY TO REMOVE IT SO SHE COULD HAVE TIME WITH ALICIA BUT THE SURGERY BROUGHT ON TWO MORE. ( I FEEL SO SORRY FOR HER ) SHE SAID EVEN THIS BOULDER COULDN'T KEEP HER FROM ALICIA TOMMORROW. ( I LOVE HER SOOO MUCH )

I PROBABLY WILL NOT BE ABLE TO UPDATE TIL I GET TO CINCINNATI SUNDAY AT TINA'S, PLEASE EVERYONE SAY AN EXTRA PRAYER TONIGHT AND TOMMORROW AND EVERY DAY AFTER FOR MY BEST FRIEND.

GOOD NIGHT ALICIA DENISE REED. MEE-MA LOVES YOU SO VERY MUCH!!!!




Sunday, May 11, 2008 10:12 PM CDT

HAPPY MOTHERS DAY TO ALL FA MOTHERS, GRANDMOTHERS, AND EVERY OTHER MOTHER OUT THERE.

TODAY WAS A BAD DAY BUT IN A VERY GOOD WAY. BUT IT IS A DAY THAT I WILL ALWAYS REMEMBER EVERY MOTHERS DAY THAT THE LORD GIVES US TOGETHER FROM NOW ON.

WE HAD A REALLY GOOD TIME, EVERYONE FINALLY GOT TO THE PARK AROUND THREE, ( WAITING ON ERIKA, I THINK SHE WILL BE LATE TO HER OWN WEDDING.) I THINK WE HAD THE BIGGEST PARTY OUT THERE. MY WHOLE FAMILY WAS THERE, MY MOM GRANDMA, ALL MY SISTERS, (EXCEPT ONE BUT THAT IS A LONG STORY) ALL OF THEIR KIDS AND THIER KIDS, ALOT OF SOME OF MY VERY GOOD FRIENDS SURPRISED ME AND THIER FAMILY'S. I HAD A VERY HARD TIME PUTTING UP THE FRONT THAT I WAS HAPPY AND HAVING A GOOD TIME, I HAD MANY TEARS FALL BUT I HAD ON MY SUNGLASSES SO NOBODY EVEN KNEW. I JUST KEPT LOOKING AROUND AT EVERYONE'S FAMILY AND ALL THE KIDS PLAYING AND KEPT THINKING ABOUT SO MUCH THAT WE WILL MISS THIS SUMMER. BUT I KEPT PUTTING ALL THE HAPPY THOUGHTS IN MY HEAD OF ALL THE TIMES TO COME THAT WE WILL BE WITH OUR FAMILY AS SOON AS ALICIA GETS HER NEW CHANCE AT LIFE!!!

I CRIED EVERY TIME I WATCHED ERIKA SWING ALICIA OR WHEN ALICIA WAS CHASING ERIKA'S NINE MINTH PREGNANT HUGE SELF. AND I PLAYED WITH LITTLE ANSHON AND THOUGHT OF EVERYTHING I WAS GOING TO MISS HIM DO FOR THE FIRST TIME AND FOR ALL OF THE TIME I WILL NOT BE ABLE TO GET BACK THAT I AM GOING TO MISS OF BOTH OF MY GRANDSONS LIFE.

BUT I SMILED AND WAS HAPPY WHEN I THOUGHT ABOUT ALL OF THE TIMES TAHT ARE STILL TO COME THAT I WILL NOT MISS, SOON I WILL BE ABLE TO JUST ENJOY AND SPEND TIME WITH ALL THREE OF MY GRANDCHILDREN WITHOUT THE EVERY DAY THOUGHT OF WHAT ALICIA FACES. IT WILL SOON BE BEHIND US AND CAN NOT WAIT TIL NEXT MOTHERS DAY!!!

ERIKA BOUGHT ME A BOTTLE OF MY FAVORITE PERFUME "COOL WATER" AND ALICIA NEVER ACTED UP ONE TIME TODAY. I DID NOT ONE TIME HAVE TO GET ON TO HER ( AND EVERYONE THAT KNOWS HER UNDERSTANDS WHAT I MEAN :)

I HOPE EVERY MOTHER HAD A GOOD MOTHERS DAY JUST LIKE I DID. LORD KNOWS IT TAKES A STRONG MOTHER (AND MEE-MA) TO GET THROUGH EACH DAY WITH DEALING WITH FA.

MEE-MA MICHELLE


Saturday, May 10, 2008 10:23 PM CDT

TOMORROW IS MOTHERS DAY. I KNOW THIS YEAR WILL BE A SPECIAL MOTHERS DAY FOR OUR FAMILY. WE ARE HAVING A HUGE BBQ AT OUR COUNTY PARK, THERE WILL BE FIVE GENERATIONS OF OUR FAMILY THERE, MY GRANDMA LOOMIS, WHICH IS MY MOTHERS MOM, MY MOM, MYSELF,ERIKA, AND ALICIA. ALL OF THE REST OF MY FAMILY WILL BE THERE ALSO, MY SISTERS THEIR CHILDREN, AND MY OLDEST SISTER HAS ONE GRANDCHILD ALSO ( NO WHERE NEAR MY 3 (IN TEN DAYS). ALOT OF OUR FRIENDS AND THEIR KIDS WILL BE THERE ALSO, I AM REALLY LOOKING FORWARD TO IT. THIS WILL BE THE ONLY BBQ, HOLIDAY, AND FAMILY GATHERING ALICIA AND I WILL BE ABLE TO BE AT FOR THE WHOLE SUMMER. I REALLY WANT THIS TO BE A GOOD MOTHERS DAY FOR ERIKA AND ALICIA.

I AM ALSO VERY GREATFUL THAT I WILL BE ABLE TO BE HERE FOR MY GRANDSONS BIRTH, HE WILL BE HERE IN TEN DAYS!!!! WE HAD A BABY SHOWER FOR ERIKA TODAY AT MY TWIN SISTERS DENISE'S HOUSE. I HAD MENTIONED IN MY LAST ENTRY HOW WONDERFUL DENISE HAS BEEN SINCE WE FOUND OUT THAT ALICIA IS GOING TO TRANSPLANT, AND THIS IS ANOTHER REASON WHY I AM SO THANKFUL FOR HAVING HER AS MY SISTER. I SPENT THE NIGHT AT DENISE'S HOUSE LAST NIGHT SO I COULD GET UP AND HELP HER DECORATE FOR THE SHOWER. WE TALKED ALOT LAST NIGHT SHE HAS BEEN SUCH AN AWESOME SUPPORT FOR ME. ERIKA GOT ALOT OF NICE STUFF FOR THE BABY, DENISE BOUGHT HER A BASSINET AND FIVE HUGE PACKS OF DIAPERS, SHE ALSO GOT ALOT OF OTHER THINGS THAT SHE WILL NEED FOR JAYSHON ( THANKS DIANNE FOR THE CUTE POOH STUFF YOU SENT FOR JAYSHON). SHE STILL HAS ALL OF ANSHON'S CLOTHES SO SHE IS ALL READY FOR THE BIG DAY IN 10 DAYS. I THINK ANSHON JR IS GOING TO BE VERY JELOUS, BUT I THOUGHT ALICIA WOULD BE TO WHEN ANSHON WAS BORN BUT SHE HAS DONE VERY WELL WITH IT. I CAN NOT WAIT TIL WE ARE BACK FROM TRANSPLANT AND ALL THREE OF MY GRANDCHILDREN WILL BE TOGETHER.

WELL IT IS GETTING SO CLOSE TO THE DAY ALICIA AND I WILL LEAVE FOR CINCINNATI. WE LEAVE TWO WEEKS FROM TODAY. I RECIEVED THE TRANSPLANT BINDER AND TENTATIVE SCHEDULE TODAY FROM CINCINNATI AND IT SAYS THAT HER TRANSPLANT WILL TAKE PLACE ON JUNE 19TH AS LONG AS EVERYTHING GOES WELL WITH THE RESULTS FROM HER PRE-WOORKUP. ALL THE TESTING IS STILL SET TO BEGIN THE 27TH, IF ALL RESULTS ARE OK SHE WILL BE ADMITTED TO THE BMT FLOOR ON JUNE 12TH AND START CHEMO THE NEXT DAY. I HOPE AFTER I READ THE BINDER I WILL UNDERSTAND A LITTLE MORE OF WHAT IS GOING TO HAPPEN. ( AND WITH THE HELP OF TINA I AM SURE I WILL (THANKS GIRL)

ALICIA IS SPENDING THE WEEKEND WITH HER DAD. HE CALLED THIS MORNING AND I TALKED TO HER AND IT SOUNDED LIKE SHE WAS HAVING FUN, SHE TOLD ME SHE WAS AT THE PARK PLAYING. I AM GLAD HER DAD IS SPENDING TIME WITH HER BEFORE SHE LEAVES.I CAN NOT WAIT UNTIL THE MORNING THOUGH SO I CAN GO GET HER, I AM USED TO SEEING HER EVERY DAY AND TODAY I DID NOT GET ANY KISSES OR HUGS.

PLEASE KEEP ALICIA IN YOUR PRAYERS AND ALL THE OTHER CHILDREN WITH FA.

MEE-MA MICHELLE


Thursday, May 8, 2008 9:29 PM CDT

THE DAYS JUST SEEM TO BE FLYING BY!!! WE ONLY HAVE TWO WEEKS UNTIL WE LEAVE FOR CINCINNATI. I HAVE BEEN SO BUSY TRYING TO GET EVERYTHING IN ORDER BEFORE WE LEAVE. I CAN SAY THOUGH THAT WITH EACH DAY THAT PASSES IT IS GETTING EASIER FOR MYSELF. I HAVE GAINED ALOT OF STRENGHTH IN THE LAST TWO WEEKS AND I KNOW THE LORD IS HOLDING ALICIA'S AND HE WILL SEE HER THROUGH THIS.

I NEVER REALIZED HOW MANY PEOPLE CARE ABOUT US, EVERYONE HAS BEEN SO GREAT THE PAST TWO WEEKS. MY TWIN SISTER, DENISE HAS BEEN A VERY BIG SUPPORT FOR ME. SHE HAS HELPED ME IN SO MANY WAYS WITH COPING WITH WHAT IS ABOUT TO HAPPEN. DENISE AND ALICIA ARE VERY CLOSE ALSO, ALICIA LOVES HER ALOT (ALMOST AS MUCH AS SHE LOVES ME BUT NOT QUITE:) I AM THANKFUL THAT I HAVE HER AS MY SISTER. I KNOW SHE WILL BE IN CINCINNATI ALOT WITH US. SHE HAS TOLD ME SHE WILL BE THERE EVERY OTHER WEEKEND AND MORE IF I NEED HER. SHE IS A VERY SPECIAL PERSON.

EVERYTHING IS STILL PRETTY MUCH STILL PLANNED THE SAME AS MY LAST UPDATE, ERIKA IS HAVING THE BABY ON THE 20TH AND HOPEFULLY SHE WILL RECOVER FAST FROM HER C-SECTION AND BE HOME FOR AT LEAST ONE DAY BEFORE ALICIA AND I LEAVE ON THE 24TH. ERIKA PLANS TO BE IN CINCINNATI 2 WEEKS AFTER SHE COMES HOME, PLEASE PRAY HER RECOVERY GOES WELL. ANSHON WILL STAY AT HOME WITH THE TWO BOYS, HE IS SUCH AN AWESOME FATHER. THEY ARE STILL STARTING THE PRE-TRANSPLANT THINGS ON THE 27TH, SHE IS GOING TO GET HER CENTRAL LINE IN ON FRIDAY THE 30TH. THEN WE WILL HAVE ONE WEEK BETWEEN AND TRANSPLANT WILL TAKE PLACE AROND THE 9TH OF JUNE NOW. I JUST PRAY EVERYTHING GOES WELL FOR ALICIA, SHE IS VERY DEAR TO ME, SHE IS MY HEART. I HAVE NEVER LOVED ANYONE BESIDES THE LORD AS MUCH AS I LOVE HER.

I WANT TO THANK EVERYONE FOR ALL OF YOUR SUPPORT, TINA YOU ARE A VERY DEAR FRIEND I AM SO GLAD I HAVE YOU BESIDE ME, AND DIANNE YOU ARE THE BEST!! I AMS SO GLAD TO HAVE YOU AS A FRIEND.

I GOT TO END THIS QUICK ALICIA IS JUMPING ON THE BED, ANYONE WHO HAS MET HER KNOW SHE IS A HANDFUL. I CAN NOT WAIT TIL ALL OF THIS IS OVER SO I CAN ENJOY MY LITTLE BEST FRIEND.

MEE-MA MICHELLE