Alicia's Journey with FA

ALICIA'S JOURNEY WITH FA

Friday, June 13, 2008

Day -6

I actually got six hours of sleep last night. Alicia was awake past Midnight but when she finally went to slepp she was out like a light bulb.

I found out alot of the ropes yesterday about how things will be. They do vitals on all the children every four and Alicia went to sleep after the one at Midnight and slept through the one at 4am (so I heard cause i slept through it also)but the one at 8am woke her so that is when our day began.

The Doctors did rounds at 9am and Dr Davies was there. She is such an awesome Doctor and cares alot for our children. Alicia will start her Chemo today. One medication will last for 30 minutes for four days which is Fludarabine and the ATG will last for 8 hours for I believe five Days ( i might be wrong on the total days for that one) They said some kids have reactions to the AGT so it has me a little nervous.

Alicia's platelets have also dropped to 12,000 and her hgb to 8.6 so Dr Davis said she will probably also be getting a transfusion. She did say that the Agt is supposed to boost her platelets a little also.

Thank you again to everyone who is praying for my baby. And thanks for all of the support.

Mee-Ma

Thursday, June 12, 2008

June 12, 2008

Well the day is here. Alicia gets admitted to the BMT floor today. They will be taking her to the floor just after her MRI is done.

She is till sleeping now, which I just decided to give up on as far as for myself. I seen every hour on the hour last night. But at least now I am getting used to functioning on a couple of hours of sleep because I am sure there will be alot more of those in the very near future.

Alicia had a good time last night. We stayed at Tina's and they are going with us to be admitted and then on to Jo and Jacy's many appt's. Keith gave her an extra long Motor Cycle ride. Alicia loved it. She kept telling Keith "more", "More", so of course he did. There has not been many things Keith has told Alcia "no" to. They have a cool little special bond. Alicia also played alot outside yesterday. She totally loves their dog J.R. I just kept looking out the window at her and tears would come to my eye's when I thought that this would be the last time for a while that she would get to go run in the grass and play with the dog and even get to go outside and play. Then more tears fell when I looked at her pretty long hair and thought it would be forever until I would get to put it in cute little pony tails. Then I would freak because I started thinking that her Chemo was starting tomorrow and it was "Friday the 13th". Then to make it worse I would look at Tina and she had big tears in her eyes as she was watching Alicia also. Finally I had to tell myself to stop and we talked of more happier things.

My Mom has been such a Huge help to me and I wanted to let her know if she is reading this that I love you very much Mom and I am so Lucky to have you and it takes alot off my mind to know that I have someone back home I can depend on!!!!! She is sending Alicia little gifts every other day that Erika bought for Alicia. I know that will bring smiles to my baby's face. I have called my mom several times since I have been here and asked for favors and I never had to ask twice. My mom had it done probably beofre we ever hung up. ( maybe that is going a little overboard). But I want to thank you very much Mom.

And I also owe Tina alot of Thanks. She has been soooooo much support for us. I feel she is such a true friend and I do not know how I would of even made it this far without her. Thank you so much Tina.

And I also want to thank Teresa and Dianne. You both have also helped me through alot and Thank you Dianne for the gifts you have sent Alicia. It is sooooo important to have friends to be able to get through times like these and I am so greatful to all of you.

Well it is time to wake Alicia. And off to the first day of the beginnign of my baby's new chance at life. I will kepp everyone updated as much as I can.

A VERY nervous Mee-Ma

Tuesday, June 10, 2008

June 10, 2008

Time is moving so fast it seems. There is only two days until we are admitted and three days until Alicia starts her Chemo. I am getting more nervous by the hour now instead of by the day!!!! I am praying so hard that my baby will be Ok through it all. She is such a strong little girl so I know she will fight.

We got a call yesterday and they want to do another MRI on Alicia. She said there was something in this last one done Saturday that concerned the Doctor and She wants to see the rest of Alicia's spine. She did say the Head looked good but she could only see the top of her spine and wanted a picture of the rest. So we have to be at the hospital at 10 am Thursday for another MRI and then we will be admitted after that. Please pray there is nothing wrong with this MRI!!!!!!!

on top of everything little Alicia is going through we got a call from Erika yesterday and the person who was keeping Alicia's dog had let her out to potty ans she never came back. Alicia has had her since she was 6 weeks old, her name is Taby. Alicia named her and they were very close. Tina had blown up a picture of Taby to put beside Alicia's bed at the hospital so I had to get rid of it. I just hope Alicia does not ask many questions when we get home. I will miss Taby alot also.

My twin sister Denise will be here in six days. I am sooooo very happy. I miss my family alot and I can not wait to see Denise. Alicia is very excited also. Denise and Alicia are very close. Alicia calls her Ne Ne. I can not wait to see the look on Alicia's face when she see's her. ( wow actually something to look forward to, that feels great!!!)

Well Alicia is telling me it tis time to go play so I will update as soon as I know anything about her MRI.

Mee-Ma

Tuesday, June 3, 2008

June 3, 2008

I HOPE THIS BACK GROUND MAKES IT A LITTLE EASIER TO READ THE UPDATES ON ALICIA, TINA HELPED ME CHANGE IT SINCE I KNOW NOTHING ABOUT COMPUTERS, I HAD SEVERAL PEOPLE SAY IT WAS HARD TO READ IT THE WAY IT WAS SO I HOPE THIS HELPS.

I AM SOOOO VERY TIRED. I KEPP TELLING MYSELF TO PULL IT TOGETHER THAT WE HAVE A LONG ROAD AHEAD OF US, BUT ALL THESE TESTS ARE STARTING TO WEAR ME DOWN, BUT I KNOW OR AT LEAST THOUGHT THEY ARE ALMOST OVER.

MONDAY WAS A BUSY DAY. ALICIA HAD A CT SCAN DONE AND SHE HAD TO BE SEDATED. SHE IS SUCH A LITTLE BUSY BODY THAT IT WAS HARD TO GET HER TO GO TO SLEEP. THEY GAVE HER FOUR DOSES BEFORE SHE FINALLY FELL ASLEEP SO TO THE WAITING ROOM I WENT. ( I SURE AM GETTING VERY SICK OF WAITILNG ROOMS!!!) WELL I GUESS DURING THE SHORT 15 MINUTE SCAN SHE WOKE UP SO THEY GAVE HER EVEN MORE MEDICINE SO NEEDLESS TO SAY SHE DID NOT COME OUT OF SEDATION FOR A VERY LONG TIME. AFTER BEING IN RECOVERY FOR THREE HOURS THEY DECIDED TO GO AHEAD AND LET ME TAKE HER HOME SO ME AND JO LEFT CARRYING ALICIA STILL IN A DEAD SLEEP????? ( I THOUGHT IT WAS VERY STRANGE THAT THEY WOULD LET US LEAVE LIKE THAT BUT I GUESS AFTER ALICIA TRIED TO KICK ONE OF THE NURSES SHE PROBABALY DID NOT WANT TO TAKE ANOTHER CHANCE OF GETTING KICKED AGAIN LOL!!!)

WE GOT BACK TO TINA'S HOUSE AROUNG FIVE AND THEN CAME A CALL FROM THE RONALD MCDONALD HOUSE SAYING THEY HAD A ROOM FOR US FINALLY, ALICIA WAS BARELY AWAKE AND ACTING VERY, VERY, VERY DRUNK SO WE FED HER AND HOPED THE FOOD WOULD SOAK UP ALL THE MEDICATION SHE STILL HAD IN HER BUT NO LUCK.
SO OFF TO THE RONALD MCDONALD HOUSE WE WENT, ALICIA WAS SOOO FUNNY ALL THE WAY THERE. SHE MADE NO SINCE AT ALL!!!! I WAS SO GLAD WHEN THE TOUR WAS OVER AND I COULD FINALLY LAY HER DOWN BUT OF COURSE SHE HAD JUST WOKE UP FROM BEING TO SLEEP FOREVER SO SHE WANTED TO PLAY WAY PAST MIDNIGHT. AND I WONDER WHY I AM SO TIRED!!!

THE ALARM WENT OFF AT 6AM, AND WE STARTED ANOTHER DAY OF MORE TESTS. I THOUGHT TODAY WAS THE LAST DAY BESIDES THE CONFERENCE CALL TOMORROW WITH DR DAVIES,MICHELLE CROCKET AND ERIKA. WE HAD TO HAVE BLOOD DRAWS AT 8AM AND HER GFR TESTS ON HER KIDNEYS WERE TO START AT 8:30. SHE HAD TO HAVE DYE INJECTED AND BLOOD TAKEN EVERY 30 MINUTES AFTER WAITING FOR TWO HOURS AFTER THE DYE WAS INJECTED. EVERYTHING WENT PRETTY WELL WITH THE TESTS AND WE WENT BACK TO THE RMH TO NAP. THEN WE WENT TO TINA'S TO STAY THE NIGHT THERE. I REALLY NEEDED A GOOD NIGHTS REST AND LAST NIGHT WITH BEING IN A STRANGE PLACE AND THE LONG DAY WITH ALICIA AND NO SLEEP AT ALL I AM SO THANKFUL TO BE HERE AT TINA;S WHERE I KNOW I WILL BE ABLE TO SLEEP GOOD.

I GOT A CALL FROM MICHELLE ( SHE IS THE BMT NURSE COORDINATOR ) ABOUT THE TIME I GOT TO TINA'S AND SHE SAID SHE HAD TO ADD MORE TESTS, (OF COURSE ) THE CT SCAN SHOWED THAT HER STOMACH WAS ENLARGED SO WE HAVE TO GO FOR MORE X-RAYS TOMORROW AND IT ALSO SHOWED SEVERAL ABNORMALITIES IN HER NECK AND SHOULDERS SO THEY ALSO WANT TO DO AN MRI WHICH I BELIEVE IS GOING TO BE DONE SATURDAY. BOY DO I NEED STRENGHT RIGHT NOW.

I WILL LET EVERYONE KNOW HOW THE CONSULT GOES TOMORROW BUT I AM OFF TO BED NOW IF I CAN MAKE IT THERE BEFORE I FALL ASLEEP WALKING.

VERY TIRED MEE-MA

Sunday, June 1, 2008

June 2008 Guestbook Entries

hey alicia, you such a strong and beautiful lil girl. Jus know that uncle crystal has you in my prayers. You are a very strong lil girl and i love you now and forever
Crystal Scott
wichita, Ks usa - Friday, June 27, 2008 10:28 PM CDT

Dear Michelle, Erika, and Alicia,
we have been praying for Alicia at prayer group on Thursday nights and will keep praying for her. I will keep praying for her as well. Covering her with prayer that this bacteria will be beaten and that Alicia will feel ok again.
Love Charisse
(FA Adult)
http://charissejournal.blogspot.com

Charisse Howard-Jones/The Prayer Bears
Adelaide, SA Australia - Friday, June 27, 2008 9:25 PM CDT

Sending many prayers and hugs your way!

PRAYER BEARS WEBSITE

Alicia, John, Ciara, Hunter, & ^^Angel^^ Tommy (MPS-III) BENNETT CHILDREN'S JOURNAL
- Friday, June 27, 2008 4:57 PM CDT

HI BABY ITS MOMMY. I KNOW YOUR NOT FEELING WELL TODAY.IM SOOOO SORRY THIS IS YOU AND NOT ME. IF I COULD CHANGE EVERYTHING I WOULD I PROMISE I WOULD BE THERE NOT YOU. THANK YOU FOR GETTING SOME ENERGY AND TALKING TO ME TODAY. YOU SOUNDED LIKE YOU REALLY DIDNT WANNA TALK AND IM GLAD YOU LET ME HEAR YOUR VOICE. MAMA SHEL THANKS FOR BEING THERE FOR ME. YOU ARE THE #1BEST MAMA IN THE WORLD AND I LOVE YOU AND I WOULDNT ASK FOR GOD FOR A DIFFERENT MOTHER. ILL CALL YOU WHEN I GET OFF. I LOVE THE BOTH OF YOU. BYE.
MOMMY
- Friday, June 27, 2008 4:31 PM CDT

Thinking of you, and praying for you. Love, Dianne
Dianne Ploetz
- Friday, June 27, 2008 1:30 PM CDT

Michelle I am so proud of you. You are really showing how much of a best friend Alicia is to you. Tell Alicia hi for me, and don't forget to give her a big kiss for me. I have also gotten Alicia some hats. So when she gets them (with the hats Denise got her) she should be the best hatted girl there. All my love. Mom and Greatgrandma.
Barbara Black
Wichita, Ks USA - Friday, June 27, 2008 7:42 AM CDT

Beautiful new photo!
Stopping by to let you know I'm here praying!
Psalms 31:1-3 In thee, O LORD, do I put my trust; let me never be ashamed: deliver me in thy righteousness. Bow down thine ear to me; deliver me speedily: be thou my strong rock, for an house of defence to save me. For thou art my rock and my fortress; therefore for thy name's sake lead me, and guide me.
Prayer Bears
Lynn Worley
Seattle, WA USA - Friday, June 27, 2008 1:25 AM CDT

Hello Alicia and Michelle,
Hey don't worry about the hair...it grows back and Alicia you are just as beautiful now as you were before it fell out. Just think about that Hair Fairy that will be comming to visit you :)
I am praying for you all the time and Sarah asked today when we were comming to see you. I told her soon. We just have to get Sarah's counts under control again. Her Hgb droped again.
I love you both talk to you soon.

www.caringbridge.org/visit/sarahp

Love, Lori and Sarah

Lori Petersen
Painesville, OH - Thursday, June 26, 2008 10:58 PM CDT

hi this is cassie those piture were sad! i loveyou!!!
cassandra morris

wichita, ks u.s.a - Thursday, June 26, 2008 9:22 PM CDT

hi dora and sponge bob its mickey mouse!!! i seen your picture with out hair today through watery eyes and you are still so pretty. Now you dont have to sit still forever while mommy and mee maw brush your hair! stay strong sister love you <3>
Ne Ne
wichita, ks SEDGWICK - Thursday, June 26, 2008 9:15 PM CDT

Hello Everyone,
Erika is was lovely to hear more about you in the post before this one. Your picture of you and Alicia is prescious...and Erika...you are beautiful and I hope you have recovered well from your C-section and your beautiful baby is doing well too.
Alicia, I am glad you are doing well. I hope you enjoy the Hairy Fairy coming...how exciting for you! Hehe....bless you guys,
Love Charisse
(FA Adult)
http://charissejournal.blogspot.com

Charisse Howard-Jones/The Prayer Bears
Adelaide, SA Australia - Thursday, June 26, 2008 6:21 PM CDT

Hi baby its mama. i love you so much and miss you with all my heart. I seen the picture of you with you losing your hair and you are still VERY BEAUTIFUL.(thanks to mama) I hoped that whenever mema finishes you hair youll be happy still. You are very pretty and I will be ther soon. I love you mama and thank you so much for leaving everything you have here in kansas to help ne with your best friend. Anshon sr and jr, and jayshon, and me we love both of you and we miss you. I love you both alot. Talk to you later.
MOMMY
wichita, KS - Thursday, June 26, 2008 4:06 PM CDT

MyHotComments

Sandra Dunn & Katie Criss
Sandra Dunn
Lake Stevens, WA USA - Thursday, June 26, 2008 2:51 PM CDT

Alicia and Michelle, I am keeping you in my prayers daily. I hope you get something nice from the hair fairy. Your FAmily is here for you all and I know we are all praying for Alicia's good outcome. I hope you get to see your mommy soon. Take care. Sponge Bob is great too!! :)

Sandra Dunn
www.caringbridge.org/visit/katiecriss
Sandra Dunn
Lake Stevens, WA USA - Thursday, June 26, 2008 2:45 PM CDT

What IS it about Sponge Bob?!
Praying hard at this end!
Deuteronomy 31:6 Be strong and of a good courage, fear not, nor be afraid of them: for the LORD thy God, he it is that doth go with thee; he will not fail thee, nor forsake thee.
Prayer Bears
Lynn Worley
Seattle, WA USA - Thursday, June 26, 2008 0:40 AM CDT

I'm so sorry to hear that Alica's hair is beginning to fall out . Kids are so resilient though its amazing . I think sometimes things bother us adults more then it does them. They just keep on going and always with a smile . I hope that Alica gets a super prize from the Hair Fairy . I mean why not ? There's the Tooth Fairy :>)

It is so nice to know that you are there for your daughter and praying she gets united with Alica soon . Keeping Alica in our prayers .

www.caringbridge.org/visit/margaretreed1
Tracy
Corry , PA - Wednesday, June 25, 2008 9:57 PM CDT

It has to be so hard for all of you to be separated from each other! Thank goodness you have been able to be there to help Erika during a time where she wasn't able to be there. It has to be so hard for Erika (and you) to be away from the other babies. I can only imagine! Hopefully it won't be too long before Erika is there.

As for the hair...my heart goes out to you. I can only imagine how I would feel if that were Emma and her beautiful hair falling out. That is so sweet that there is a Hair Fairy! I'm so glad that Alicia doesn't seem to care. That makes it much easier. I bet she looks so cute without the hair!!

Can't wait to see some photos, including ones with the momma in them. I"m not sure I've ever seen a photo of her!

Love,
The Clifton's
http://cliftonclan.blogspot.com
Anna, TX USA - Wednesday, June 25, 2008 9:42 PM CDT

hi alicia its nene! i cannot find the words to express how much i miss you. this last week i got to spend with you was the best week of my life. i had fun painting &coloring & doing you baby doll nenes hair and playing games and doing the chicken dance. i miss you soooooo much and cant wait till i can come back to see you. remember our pinky swear ok me and cassie will see you soon!!!! (belive it or not i miss you bad too sister) love you
Ne Ne
wichita, ks sedg - Wednesday, June 25, 2008 4:55 PM CDT

Thanks for the update. It must be SO hard for the family to be apart. Hang tough...and remember that love connects all of you, wherever you are. Roxanne's poem is so beautiful. You are in our thoughts and prayers. Dianne and Family
Dianne Ploetz
- Wednesday, June 25, 2008 4:34 PM CDT

Hi Alicia and Michelle,
Am sorry to hear about the latest "bumps in the road". I check your journal every day to see how Alicia and you are doing.
I hope and pray that all will go well and that Alicia will again be up and playing and jumping and "driving you crazy"!
Love to you both and prayers for you both too!

Mary Ann Gormley
Upton, MA USA - Wednesday, June 25, 2008 12:41 AM CDT

Know that I care so much and continue to pray!
Isaiah 63:9 In all their affliction he was afflicted, and the angel of his presence saved them: in his love and in his pity he redeemed them; and he bare them, and carried them all the days of old.
Prayer Bears
Lynn Worley
Seattle, WA USA - Wednesday, June 25, 2008 1:22 AM CDT

Dear Michelle,
bless you. You have such a sweet heart. That would have been so difficult to see Alicia have the NG Tube put down. Isaac had to have that done numerous times when he was a little baby. However, I am sure, that as a premie, he didn't cry and scream like Alicia was doing and that would have been heartbreaking for you. You are so sweet. We continue to pray for you all,
Love Charisse
(FA Adult)
http://charissejournal.blogspot.com
Charisse Howard-Jones/The Prayer Bears
Adelaide, SA Australia - Tuesday, June 24, 2008 10:16 PM CDT

Michelle, your entries are so sweet and it tugs at the heart reading everything! I imagine brushing her hair must've really been emotional and difficult. Hopefully it won't be too long before she has some more to have brushed.

As for the NG tube, hugs to you! We had to do that when Emma was a baby after her heart surgery, and it made both Tyler and I cry each time. I know we'd be the same way now! I think sometimes it helps the little ones to see us cry...not all the time, but it helps them to know that we understand it's not fun at all for them.

I hope her bum feels better soon and that the bad days don't end up very bad. Give her a hug for us. Emma said her prayers tonight and prayed that Alicia will feel better. This is the first little FA friend that she has had to go through a transplant. Well, no Haylee is a little friend of hers too, but she wasn't aware of it all!

Lots of love, hugs, and prayers to you all...
Love,
the Clifton's
http://cliftonclan.blogspot.com
Anna, TX USA - Tuesday, June 24, 2008 9:35 PM CDT

HI ALICIA ITS MOMMY. I LOVE AND MISS YOU SO MUCH. I HOPE EVERYTHING IS GOIN REALLY REALLY REALLY GOOD.IM COMING TO SEE YOU REAL SOON. DADDY SAYS HE LOVES YOU AND HE MISSES YOU ALOT. I GOT YOU MORE DORA TOYS AND A REALLY CUTE OUTFIT SO YOU CAN BE PRETTY IN YOUR NEW OUTFIT AND BE MORE COMFORTABLE.

I LOVE YOU ALICIA AND ILL SEE YOU LATER. CALL ME BEFORE YOU GO TO SLEEP.
MOMMY
WICHITA, KS - Tuesday, June 24, 2008 2:30 PM CDT

Hope tomorrow's a better day!
There's also something called "bag balm"...that helps poor sore little behinds, too.
Still praying hard at this end!
Psalms 88:9 Mine eye mourneth by reason of affliction: LORD, I have called daily upon thee, I have stretched out my hands unto thee.
Prayer Bears
Lynn Worley
Seattle, WA USA - Tuesday, June 24, 2008 1:20 AM CDT

Hi Alicia - its Karly. I miss you and hope to see you at camp next year. I'll miss you at camp this summer. Get well soon. Be positive! We love you! Bye!!
Karly
Karly Ross
sc - Monday, June 23, 2008 9:12 PM CDT

Hello Alicia,
We miss you and are praying evryday for you.
we hope to see you soon.

Love,
Lori and Sarah

Lori Petersen
Painesville Twp, OH - Monday, June 23, 2008 5:31 PM CDT

Hi MeMaw & Alicia -
Thinking about you and praying every day!! These are the tough days but I know you'll make it through with flying colors. Sending lots of hugs and love!!
The Ross Family
(Nancy & Karly)
Nancy Ross
- Monday, June 23, 2008 2:44 PM CDT

Hello Alicia, I am Sarah Petersen's Grandma and I am thinking of you and praying that all will be well with you. My thoughts and prayers are also with your family.

Jan Sysak
Mentor, Ohio Lake - Monday, June 23, 2008 7:18 AM CDT

Continuing to pray in Seattle!
2 Corinthians 4:15-18 For all things are for your sakes, that the abundant grace might through the thanksgiving of many redound to the glory of God. For which cause we faint not; but though our outward man perish, yet the inward man is renewed day by day. For our light affliction, which is but for a moment, worketh for us a far more exceeding and eternal weight of glory; While we look not at the things which are seen, but at the things which are not seen: for the things which are seen are temporal; but the things which are not seen are eternal.
Prayer Bears
Lynn Worley
Seattle, WA USA - Monday, June 23, 2008 1:24 AM CDT

Hello Guys,
I am so relieved that things are going well. Michelle, you are doing so well and Alicia is a trooper. I can understand about your emotions in regards to the hair. I know people say it will be ok and it will....but if I was in transplant, losing my hair is so upsetting. However, as Kirstin said, she will look really cute in a hat! I hope she doesn't get too much of a sore bottom from the diarrhoea. Are you putting barrier cream on it? It can get so sore.....I don't mean to sound bossy....haha!
We love you and are praying,
Love Charisse
(FA Adult)
http://charissejournal.blogspot.com

Charisse Howard-Jones/The Prayer Bears
Adelaide, SA Australia - Sunday, June 22, 2008 8:47 PM CDT

Hello all. I do check in on you every day. I just don't always write. You are all handling this so well. I know you will be sad about Alicia's hair, it will be okay. Many tears will probably fall but she will look so cute in a hat and it won't be long before her beautiful locks grow in again. Hang in there. Hugs. Keep getting some rest when you can. I'm so glad you have so much help there.
Kristin Young
Gorham, ME USA - Sunday, June 22, 2008 6:12 PM CDT

Alicia's comments are so cute! Glad things are going well. Dianne
Dianne Ploetz
- Sunday, June 22, 2008 5:43 PM CDT

Hi alicia
I miss you. I can't wait to see you.I hope you fill well.
I love you.

love, sarah.
www.caringbridge.org/visit/sarahp

Sarah Petersen
Painesville Twp, OH USA - Sunday, June 22, 2008 11:12 AM CDT

Hehe....it is so funny when little children comment on things like that. She is sweet and spunky!
Glad things are going well.
Love Charisse
Charisse Howard-Jones/The Prayer Bears
Adelaide, SA Australia - Sunday, June 22, 2008 7:36 AM CDT

Glad things are still going so well. Praying!
John 11:25-26 Jesus said unto her, I am the resurrection, and the life: he that believeth in me, though he were dead, yet shall he live: And whosoever liveth and believeth in me shall never die. Believest thou this?
Prayer Bears
Lynn Worley
Seattle, WA USA - Sunday, June 22, 2008 1:21 AM CDT

haha! Her comment totally cracked me up! I can picture her saying that. She's such a little spunk;-) Glad things are going so well! You're never far from our thoughts and always in our prayers.

Love,
The Clifton's
http://cliftonclan.blogspot.com
Anna, TX USA - Saturday, June 21, 2008 11:37 PM CDT

Alicia,
sarah and I enjoyed talking to you toinight. We love and miss you so much. Sarah had a wonderful week at the YMCA camp...but she wants to come back to Cincy to see Alicia.
I will be praying and cant wait till we see each other soon.

Love
Lori adn Sarah
www.caringbridge.org/visit/sarahp

Lori & Sarah Petersen
Painesville Twp, OH USA - Saturday, June 21, 2008 10:24 PM CDT

The story of Alicia and the princesses is priceless! It sounds like Jo and Jacy handled it very well. :) Very cute. As always, you are in our prayers. Dianne and Family
Dianne Ploetz
- Saturday, June 21, 2008 11:18 AM CDT

I am soooo very happy to hear everthing is going well for you Alicia. Sarah and I are praying you will continue to get better and stronger. Praying that your new cells will grow grow grow quickly.

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

Lori Petersen
Painesville Twp, OH USA - Saturday, June 21, 2008 7:52 AM CDT

Am so glad it went so well!
Still here praying!
1 Corinthians 15:54-57 So when this corruptible shall have put on incorruption, and this mortal shall have put on immortality, then shall be brought to pass the saying that is written, Death is swallowed up in victory. O death, where is thy sting? O grave, where is thy victory? The sting of death is sin; and the strength of sin is the law. But thanks be to God, which giveth us the victory through our Lord Jesus Christ.
Prayer Bears
Lynn Worley
Seattle, WA USA - Saturday, June 21, 2008 2:06 AM CDT

Hi Alicia and Michelle,
that is wonderful news that Alicia did so well recieving her new cells. How exciting. It is a shame you cannot go to camp. I have wanted to go ever since we went when Isaac was 2 and now he is 5! We have missed 3 years already and are gonna miss another one! Ahhh....but we will get there.
We are continuing to pray for Alicia's cells to grow quickly and well.
Love you,
Charisse, Alan and Isaac
http://charissejournal.blogspot.com
Charisse Howard-Jones/The Prayer Bears
Adelaide, SA Australia - Saturday, June 21, 2008 0:52 AM CDT

I wish we were seeing you guys at Camp Sunshine this year too! But we won't be going due to baby's arrival. Hopefully we'll be able to go the year that you do.

Glad things are going so well. I think I would be just like you and have a hard time leaving just in case anything went a little less than perfect. You guys are in our prayers... Keep the updates coming when you can!

Love,
Teresa & Emma
http://cliftonclan.blogspot.com
Anna, TX USA - Friday, June 20, 2008 9:37 PM CDT

Doing the "Grow cells, GROW!" dance for Alicia!
Jessica
Poughkeepsie, NY USA - Friday, June 20, 2008 1:49 PM CDT

Am glad that Alicia liked her new doll and more importantly, that the BMT went well and that she had a very good day yesterday.
Now we pray that the new cells grow and that the three weeks go by well and with great success.
Alicia, it was very good to talk to you yesterday. You are such a big girl now. And it was fantastic to hear you say "I love you!'. I love you too sweetheart and will see you at Camp Sunshine next year!

Mary Ann Gormley
Upton, MA USA - Friday, June 20, 2008 12:45 AM CDT

Praying for a good day, and these new cells to grow, grow, grow!! Dianne
Dianne Ploetz
- Friday, June 20, 2008 9:51 AM CDT

Praying so that all went well today!!!!!!!!!!!
Proverbs 18:10 The name of the LORD is a strong tower: the righteous runneth into it, and is safe.
Prayer Bears
Lynn Worley
Seattle, WA USA - Friday, June 20, 2008 1:11 AM CDT

Oh wow! I can't believe it's already starting! You guys have such a great attitude. I smiled through your whole entry;-) Sounds like you're making a tough situation as enjoyable as possible. Looking forward to updates!
teresa
TX USA - Thursday, June 19, 2008 2:59 PM CDT

Rejoicing with you!
The Prayer Bears

Whooooo Hoooooo! Doing the Go Cells Go Dance!!!! Go make Alicia many many miracles!!! The balloon ordeal sounded like fun! Hang in there! I'm glad Denise arrived safely!
Blessings and Bear Hugs,

Donna Boggs, Papa Bear’s Site
Coeburn, Va - Thursday, June 19, 2008 2:37 PM CDT

We are so excited for you on this special day!! :) John, Dianne and Michelle
Dianne Ploetz
- Thursday, June 19, 2008 11:17 AM CDT

Find comfort in the Word! Praying hard that all goes well tomorrow!!!!!!!!!!!!!!!!!
Joshua 1:8-9: This book of the law shall not depart out of thy mouth; but thou shalt meditate therein day and night, that thou mayest observe to do according to all that is written therein: for then thou shalt make thy way prosperous, and then thou shalt have good success. Have not I commanded thee? Be strong and of a good courage; be not afraid, neither be thou dismayed: for the LORD thy God is with thee whithersoever thou goest.
Prayer Bears
Lynn Worley
Seattle, WA USA - Thursday, June 19, 2008 1:23 AM CDT

Hi Alicia and Michele and Denise,
I'm sorry things are rough. I know you all are so strong. Just keep taking one day or one hour or one minute at a time! I'm holding you all on my heart!
love,
rachel altmann
- Wednesday, June 18, 2008 11:46 PM CDT

MyHotComments

Sandra Dunn & Katie Criss
Sandra Dunn
Lake Stevens, WA USA - Wednesday, June 18, 2008 8:36 PM CDT

Hi Alicia and Michelle, Our thoughts and prayers are with you tomorrow. This will be the first day of her "new" life. I know some of it will be tough, just hang in there and remember so many are praying for her. I have put Alicia on our prayer chain at church. With love, Sandra Dunn & Katie Criss

www.caringbridge.org/visit/katiecriss
Sandra Dunn
Lake Stevens, WA USA - Wednesday, June 18, 2008 8:31 PM CDT

Praying for today to go as smoothly as possible for Alicia, and for the pain and vomiting to go away.
http://www.freewebs.com/prayerbears
http://heatherrain.livejournal.com
Jennifer, a Texas prayer bear
Bridgeport, Texas - Wednesday, June 18, 2008 2:36 PM CDT

Sending out lots of prayers and good thoughts for all of you. Hang in there. With love, John, Dianne, and Michelle
Dianne Ploetz
- Wednesday, June 18, 2008 12:27 AM CDT

The Prayer Bears

Hi Sweet Sugar Giving Alicia!

I was telling Sissy Bear about your bmt and she was telling eveyone about the sweet sugars you were giving her at camp! I rem mine too! You hang in there and we'll keep praying for you! Chin up!

Blessings and Bear Hugs,

Donna Boggs, Papa Bear’s Site
Coeburn, Va - Wednesday, June 18, 2008 10:59 AM CDT

Just want you to know that Alicia is being remembered in prayers by so many people. Will remember her especially today and in the days to come. Mary Ann
Mary Ann Gormley
Upton, MA USA - Wednesday, June 18, 2008 9:19 AM CDT

give Alicia a kiss from me. greatgrand ma barb
barbara black
wichita, ks usa - Wednesday, June 18, 2008 7:40 AM CDT

Lifting up prayers right now!
Isaiah 26:3 Thou wilt keep him in perfect peace, whose mind is stayed on thee: because he trusteth in thee.
Prayer Bears
Lynn Worley
Seattle, WA USA - Wednesday, June 18, 2008 1:22 AM CDT

Hi Alicia,
just passing by to wish you all the best! God bless!
Di
Australia - Tuesday, June 17, 2008 5:21 PM CDT

Michelle,

You both are in our prayers. Its a lot of hard work but you will be strong enough to get through it. Remember to ask lots of questions and ask them what everything is that they give her. Julia hated when they would come take her blood pressure, so we let her decide which arm they would use and that seemed to help. I also encouraged Julia to ask questions as well. They might be young but they understand sooo much, sometimes too much!!!

Love,
The Maimone Faimly,
John and Theresa
Jenna (donor) 14
John 13
Julia 1year and 5months post transplant
Theresa Maimone
Carlstadtq, NJ - Tuesday, June 17, 2008 8:52 AM CDT

Hi Michelle,
we are praying. It is horrible to see them so unwell. I am glad that Denise will be there to support you.
Love Charisse
(FA Adult)
http://charissejournal.blogspot.com
Charisse Howard-Jones/The Prayer Bears
Adelaide, SA Australia - Monday, June 16, 2008 7:52 PM CDT

I hope that your help will get there soon. good luck you are in my thought and prayers. love kami
kami m kessinger
New Albany, in usa - Monday, June 16, 2008 3:47 PM CDT

Hi Alicia and Michelle, We are praying for you sweet girl. I hope your tummy feels better. Hang in there. There is hope around the corner. I just know it. Always thinking of you and will keep you and yours in our prayers. Love, Sandra Dunn & Katie Criss

www.caringbridge.org/visit/katiecriss
Sandra Dunn
Lake Stevens, wA USA - Monday, June 16, 2008 1:28 PM CDT

Hang in there guys. You are in our thoughts and prayers.
Dianne, John and Michelle
Dianne Ploetz
- Monday, June 16, 2008 12:32 AM CDT

Hello Michelle,
it must feel so refreshing to get over 8 hours sleep. I am glad things are going well.
Love Charisse
(FA Adult)
http://charissejournal.blogspot.com
Charisse Howard-Jones/The Prayer Bears
Adelaide, SA Australia - Sunday, June 15, 2008 8:01 PM CDT

Alicia,
Sarah said to tell you hello. We really enjoyed seeing you this past week. We will be back again in July. We are praying for you and will call you soon. Sarah leaves for camp, with the YMCA tomorrow, she will be home next Saturday. Michelle hang in there I will call you in the next few days. Take care both of you. We love and miss you.
Love,
Lori and Sarah
www.caringbridg.org/visit/sarahp

Lori Petersen
Painesville Twp, OH - Saturday, June 14, 2008 11:32 PM CDT

Hey Michelle and Alicia,
How is everything? Did you get our gifts in the mail yet? We knew Alicia would like them at first sight. Your always in our prayers. When this is done come and visit us again, we had a blast with you here.
Love,
Michelle Ploetz
Michelle Ploetz
St. Paul, Minnesota United States - Saturday, June 14, 2008 11:59 AM CDT

Thanks for the update. As we all know, Alicia is a smart little lady!! Hang in there...lots of prayers for you and the family. Love, Dianne
Dianne Ploetz
- Friday, June 13, 2008 12:45 AM CDT

Hang in there! Prayers are coming your way!
The Prayer Bears

Michelle,

Keep us posted on the room number! Hang in there and just take ONE day at a time! Glad Ne Ne will be there for you all!

Blessings and Bear Hugs,

Donna Boggs, Papa Bear’s Site
Coeburn, va - Friday, June 13, 2008 7:49 AM CDT

Hi Michelle,
I can most certainly understand the emotion that you have been feeling. It would be so hard just thinking about all that. Don't worry about the "Friday the 13th" thing. If you know Jesus, you have all the authority you need, in Christ, to stop any of that supersitious stuff!
Bless you heaps, my love. We are praying that the chemo goes well and that your beautiful granddaughter will have that second chance at life.
Lots of love,
Charisse
(FA Adult)
http://charissejournal.blogspot.com
Charisse Howard-Jones/The Prayer Bears
Adelaide, SA Australia - Friday, June 13, 2008 6:02 AM CDT

Praying for all to go well with Alicia's transplant process, and for no complications during or afterward.
http://www.freewebs.com/prayerbears
http://heatherrain.livejournal.com
Jennifer, a Texas prayer bear
Bridgeport, Texas - Thursday, June 12, 2008 4:24 PM CDT

Hi Alicia & Michelle -
Thinking about you!!! Sending you lots of love and BIG HUGS!! You are in our prayers daily. Take care of yourself so you can take care of sweet Alicia. The Lord will give you all the strength you need to get through this. I just know Alicia will come out fine!
Love,
Nancy
Nancy Ross
- Thursday, June 12, 2008 11:43 AM CDT

Hello,

I just wanted to pop in and let you know that I was thinking about you and sending many prayers your way as you start this transplant journey. HUGS!

PRAYER BEARS WEBSITE

Alicia, John, Ciara, Hunter, & ^^Angel^^ Tommy (MPS-III) BENNETT CHILDREN'S JOURNAL
- Thursday, June 12, 2008 9:41 AM CDT

Well today is the day! That our visits start at CCHMC. You guys are our special friends and we love you!! We will be here every step of the way and do not ever hesitate to ask for help! Alicia, we love you and you are a very strong little girl!
Love Tina, Keith,& Kids
Krissitna King
Cincinnati, OH USA - Thursday, June 12, 2008 8:43 AM CDT

I just read what you wrote about me. (WOW) But I have to disagree with you. I'm not doing anything special. I love you and Alicia, nothing more needs to be said.
Barbara Black
Wichita, Ks USA - Thursday, June 12, 2008 8:03 AM CDT

I hope that everything ends up looking okay with the MRI. We are thinking of you guys often and you are in our prayers! So sorry to hear about the dog missing. Maybe they'll find her at a shelter? We had to call around to several when we lost our dog and we found her there. Lots of hugs and support your way...

Love,
Teresa & Emma
http://cliftonclan.blogspot.com
TX USA - Tuesday, June 10, 2008 11:32 PM CDT

There is so much to be done! There is so much testing. Well done on handling that all. The testing is something I was not sure I could handle. Praying that this MRI will show good things and not bad things. Have fun with your twin! I am heaps sorry about Alicia's dog. That is sad.
Love you,
Charisse
(FA Adult)
Charisse Howard-Jones/The Prayer Bears
Adelaide, SA Australia - Tuesday, June 10, 2008 8:06 PM CDT

Wow, lots and lots of testing! I can imagine you are super sick of it. That is funny that it took so much to get her to sleep! I can imagine her acting drunk and being so silly. She's such a funny girl! We hope you are able to hold up with and have the energy you need with everything;-)

Love,
The Clifton's
Teresa (http://cliftonclan.blogspot.com)
TX USA - Saturday, June 7, 2008 3:27 PM CDT

Michelle,
Alicia is so lucky to have her Mee-ma. We'll keep praying that Alicia's spunkiness continues (that means she still has lots of energy). And, we know that between Kristina, Jo, Jacy, Keith and the Cinncinnati team, you and Alicia are in very good hands.
We'll be checking in on you throughout the journey.
Hugs and love,
the Fiaschetti FAmily
Mary Ann Fiaschetti
West Point, NY - Saturday, June 7, 2008 3:24 PM CDT

Michelle and Alicia i love you both very very much and you are in myprayers everynight... i will always remember the day my lil angel was born and michelle you told me she had no thumbs and i thought it was a joke cuz you and i always clown around...but she was still as beautiful as i thought she would be. keep your head up and know that you ahve people back home thinkin bout the both of you. I love you...Crystal
Crystal Scott
wichita, Ks usa - Saturday, June 7, 2008 11:00 AM CDT

Just checking on you all! I meant to say that this background is HEAPS better. I can read the writing now...I could a bit before but had to guess some of the words and sentences! Thanks for changing it.
Love ya,
Charisse
http://charissejournal.blogspot.com

Charisse Howard-Jones/The Prayer Bears
Adelaide, SA Australia - Friday, June 6, 2008 8:25 PM CDT

I'm not sure you will remember me but I will never forget you and Alicia. I have volunteered at camp for a number of years and always for FA families and can be found with the teens as their counselor. But one year, a beautiful little vivacious and endearing imp named Alicia became my "evening events buddy" and she showered me with hugs and kisses like I've never received before or since.

Jo and Jacy have been MY TEENS for years and I love them so much...they are such wonderful young women. I just learned that you are staying with their family while you await Alicia's transplant. I read the info on the family page and learned some more.

I want you to know that since meeting Alicia, as are all CS kids, she and you have been in my prayers and as she goes into transplant, I will pray especially hard for her. I will also storm heaven for you.

You are strong and loving and you've got what it takes...remember that....look at all you've been through already.

Know that so many people are pulling for you both and keeping you in their thoughts and prayers.

Mary Ann Gormley
Upton, MA USA - Thursday, June 5, 2008 8:01 PM CDT

Hi Alicia & Memaw!!

Hang in there and take care of yourself because you definitely need your strength!! We're praying for you and sending lots of love.....

God Bless,
Nancy & Karly Ross
Nancy Ross
- Thursday, June 5, 2008 10:34 AM CDT

Hi Michelle,
just stopping by. I pray all is well.
Love Charisse
(FA Adult)
charisse Howard-Jones/The Prayer Bears
Adelaide, SA Australia - Tuesday, June 3, 2008 8:44 PM CDT

Alicia's Journey with FA