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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.



Monday, March 31, 2008

March 2008 Guestbook Entries

Hi Alicia and Michelle -
Have a GREAT TIME on your MAW trip!! Enjoy every minute...don't even think about FA or transplants or anything else other than making amazing memories.
Sending lots of love,
Nancy Ross
www.caringbridge.com/ca/karlyross

Nancy Ross
- Tuesday, March 25, 2008 10:20 AM CDT


Hi Michelle,
I know your heart is churning right now and I am sorry there are such huge decisions to be made but please know you are being prayed for and thought about. I love you guys.
Love Charisse
(FA Adult)
http://charissejournal.blogspot.com

Charisse Howard-Jones/The Prayer Bears
Adelaide, SA Australia - Tuesday, March 18, 2008 7:10 AM CDT

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The Prayer Bears

Hope the biopsy goes great! Wow! Disney will not be the same when Ms Alicia hits Mickey world! We had fun while there! Wish we could go again!

Donna Boggs, Papa Bear’s Site
Coeburn, VA - Wednesday, March 5, 2008 10:42 AM CST

Hi. Stopping by to say Hi and let you know I am always praying...DISNEY sounds like so much fun! That is one of my favorite vacation places...Prayers and Bearhugs Love, Marci The Prayer Bears
http://www.freewebs.com/prayerbears
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Marci Connell
Charleston, Sc USA - Monday, March 3, 2008 5:02 PM CST

Saturday, March 1, 2008

March 2008 entries

Saturday, March 29, 2008 3:01 PM CDT

Hello All,

Five more days and we are off to Disney World. I do not know who is more excited, me or Alicia? We have a song that we sing that counts down the days until we leave, she wakes up every morning and before she even gets out of bed she will ask me how many days so she can sing the song, She is soooooo cute shen she sings it.

She gets her cbc done on Monday, I am very worried and excited to see what her counts have done in the last month. She is bruising so fast. She even got a Bruise the other day from just putting her seat belt on. And her legs are getting so tired lately, she most definatly will be in a stroller at Disney.

Little Anshon is getting so big, he is walking every where. Yesterday when I had went to the day care to pick up Alicia he yelled at me. It was so cute. He had seen me putting Alicia's coat on and not his, he is so smart. H knew he was not going with me ( his daddy was only minutes behind me to get him ) but he did not know that and was yelling at me. Of course it was only baby yells since he is not saying anything but ma ma and da da (mee-ma is next).

I promise to take alot of pictures at Disney and update about her counts before we leave. I hope all is well with everyone.

Mee-Ma Michelle


Saturday, March 15, 2008 1:13 PM CDT

I got the call from Robin today, and she answered many questions that I have had for a very long time. She said that Alicia will most likely be going to transplant very soon, depending on the rate her counts drop but also has seen a trend with alicia and her counts are most likely going to keep dropping. Dr Davies really wants to wait for Erika to have the baby, but could not promise it could wait. Alicia is haveing another cbc in two weeks which will tell us more about how soon her transplant will be.

this is a emotional roller and I told Robin that. I told her I needed some straight answers so I can get my self emotionally prepared so I can be stron g for Alicia, one of my worries is being away from my family during the holidays, and she told me it would be a good idea to start preparing myself for that. She also was not comfortable with saying Alica would be able to wait long enough for her make a wish in July, she said to not set a date any earlier than July but be open for the possibilty that we might have to move up the date. I told her there was no way we could move up the date because we could not go now with Erika due in a month and a half. She would not be able to walk at disney for five days, she is huge and tires very easily. Erika also has to have a c-section and would not be able to walk until she recovers.

I am planning on going to Erikas today to let her know every thing and the bad part about that is it is little anshons first birthday today. I have weighed the options of waiting until tomorrow but I know Erika would be upset with me if I did not tell her.

I stressed to Robin yesterday about my big concern about waiting til it to late for transplant and asked her what are we waiting for, and of course the answer was because of the risk of transplant and surviving. My nest question was if there was any iota of a chance that Alicia would not need a transplant and she said no. I then asked if there were better odds of survival if we put it off until her counts got very low or if we did it tomorrow, and she said no to that also. So my biggest problem is waiting because she is very strong now and would have more of a chance to fight than if she was sick, and with her marrow being ok now I feel like it would be best to get her new cells now!!!!!!

I am balling like a baby now so I will update later when I pull my self together.

Alicia's very best friend Mee-Ma


Wednesday, March 12, 2008 0:01 AM CDT

Everything went well in Cincinnati last week, Alica did real well (during her biopsy) she was still her little normal bad self during the trip!!! But that is my fault!!! We got there Wednesday and had an appointment with Dr. Davies on thursday. She had a Cbc done on thursday and her count's all dropped which has me very worried. Her Platelets are now down to 17,000 from 21,000 three months ago when we were there last. Her ANC also did a big drop to 770 from 2150 which has me sooooo worried. Her Wbc, Rbc and Hbg also all dropped below normal. Her counts have always been a roller coaster but some go up and some go down but they have never all dropped like this time. Her Fish Study results were all in normal range which is good (I think) we are still waiting on the other results from her Marrow though.

The waiting game is the hardest, Just pray they will come back all ok,if not we will probably be heading to transplant. I am hoping for reslts soon and will update when I get them.

More Happy news, my grandson Anshon starting walking every where, he is getting so big!!! He turns 1 on Saturday. Erika is doing fine just getting HUGE!!!!

I hope all is well with every one. Please keep Alicia in your prayers.

Mee-Ma

Thursday, February 28, 2008

February 2008 Guestbook Entry

That's hard to hear that she is getting tired! It is so UNLIKE her to be tired. She's a bouncy little girl like Emma. I'm sorry her platelets are so low. I hate Emma's being at 67...and can't imagine how you feel about Alicia's being as low as they are.

Congratulations on the 3rd baby coming! We're expecting baby #3 as well. We'll find out at the beginning of next month what we are having. Obviously we're hoping and praying for a healthy bone marrow match for Emma, but we won't find that out until the baby is born. Baby is due at the end of July sometime.

Hope you guys are well. Give Alicia a hug and kiss for Emma and I!

Love,
The Clifton's

http://cliftonclan.blogspot.com
TX USA - Saturday, February 9, 2008 11:42 AM CST

Tuesday, February 26, 2008

February 26, 2008

Hello everyone,

Alicia is doing fine at this time. We have not had another cbc done since the last one in January, she will have one done next week when we are in Cincinnati. Hopefully her counts have came up. Her Platelets still have me and Dr. Davies very worried.

We will be in Cincinnati on the 6th for an appointment with Dr. Davies and a Biopsy done the following morning on the 7th. I pray this one will have good enough results so that Alicia will not have to keep having Biopsy's done every three months and maybe have them done in six months instead. She has had them done every three months for so long now and that is getting hard on her, and myself. I feel so sad every time she has to have one. I will update as soon as I get the results.

We have scheduled her make-a-wish for the middle of July. She is goning to Disney, we look up Mickey Mouse every night on the computer. Alicia is soooo excited. We wanted to wait until Alicia's baby brother is born so it wouldn't be so hard on Erika, she is so huge and wouldn't last an hour walking through Disney world. The baby is due in May, and depending on Alicia's Biopsy's results we might have to have another in three months which will be in June so that is why we decided on July. Make-a-wish came out to the house last week so everything is being planned now.

Alicia's baby brother, Anshon Jay is getting so big. He turns one in a couple of weeks, he started walking last week, I guess he is moving out of the way for the new baby (and last baby!!!). Erika and Big Anshon decided on a name finally, it is going to be Jay Shon. Oppisite of Anshon Jay. (kinda cute huh)

I hope everyone is doing well. We can not wait til camp this year so we can see everyone!!!

I will update as soon as we get results from the Biopsy next week.

Mee-ma Michelle

Thursday, January 24, 2008

January 24, 2008

Sorry it been almost two months since I have Updated on how Alicia is doing. The Holidays have been very hectic around here.

We go back to Cincinnati the first of March for another Biopsy, and again every three months until transplant. Dr. Davies wants all of the Biopsy's done there and not in Kansas no more. She also has to have Cbc's every month now, she had one done last week and all of her counts stayed about the same, her Wbc and Rbc dropped slightly but not enough to worry Dr. Davies. Her Platelet count is what is worrying everyone, it was at 19,000 last week down from 21,000 the last time.

She is very tired alot lately, anyone that has met Alicia knows how very very very hyper and active she is, now she is laying down alot without even being told to. That has me very concerned.

Alicia's baby brother is getting so big, I put an updated picture in her album for everyone to see. Alicia is very protected of him. She always tells everyone "no touching, he's my baby Anshon" they are so cute together. I wonder how she will react with her new baby brother. YES ITS A BOY. We found out last week that Erika is having another boy, this is the last one, she is getting her tubes tied after this on (thank go), I already told Erika not to even try to bring me all of them at once. Boy is she going to have her hands full!!!

I will update again sooner than two months,I promise. I finally got a computer at home so I have no excuse now.

Mee-ma Michelle