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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.



Tuesday, July 28, 2009

***UPDATE***
Michelle looks ok, not good but ok. She was very uncomfortable and tired. She was in and out.

She has a severe infection (that is infested in 50 lbs of fluid she put on since last Thursday) and it comes first on the repair list. Second the liver and third the cancer. Tomorrow they are going to attempt to remove some fluid and send to lab. They have to make sure the meds are covering it. She is not out of the woods. She could go south at any time. They said her liver is very bad and could give out at anytime, she will then die. If they can get her through this infection the hope is to treat the liver to help repair it, if not a transplant. At this point they know nothing of the sort. They can not check the liver until the infection is under control.

They did an ECHO and will get results tomorrow.

She was very uncomfortable and upset, her phone was going crazy while we were there. She was not happy. She says it is that way all the time, so she can not rest. Texts and calls at least 4 times in a 45 minute period. I will update you when they call me tomorrow with the latest.

She asked me tonight if this was the end and I told her I did not think so and she started to cry and said I have a really bad feeling. She cried when talking about Alicia and how she could not care for her any longer. I told her when she got better she could help, but it is Erika's time.

Denise will be here at least another week. She is very happy about that!
PLEASE PRAY FOR HER!!!!
She asked me to tell you all thank you sooooo much!!!! She really needs prayers and she appreciates all of you!!
Krisstina
***********************************************************************************

Michelle is still hospitalized and is not doing well. Her liver is declining, her o2 stats are low, her heart is under distress, and she has a very bad infection. Please pray she survives this!!!! They have said she would not survive a trip home right now and she will have to be here until they can get it taken care of.

Thansk
Krisstina

Alicia is doing well.

16 comments:

Kristin Young said...

My heart is praying!!!

Mary Ann Gormley said...

I am praying, please send my loe to Michelle.

Charisse said...

Krisstina,
we are praying for Michelle. I will ring some people and get them to pray as well. Is Michelle awake and able to talk at all? She is conscious? Please tell her we love her and are praying for her.
Love Charisse

Dianne said...

Dear Michelle,

Please always know that you are in my thoughts and prayers. Love, Dianne

Anonymous said...

Dear Michelle,
Mighty battles have been won in prayer. Know that we are praying for you. All things are possible with God.

May the presence of our wonderful God hold you and Alicia securely in His arms.
Much love,
Wilma (Charisse's Mum)

Mary Ann Gormley said...

Cannot believe what I'e just read about Michelle!
Please tell her that I love her and am praying hard for her...
I don't know what else to say...haven't wanted to call her because she needs her rest...please give her a huge hug from me.
Am also continuing to pray for Alicia...it must be very difficult for her too.
Thank you also for all of the updates. You are wonderful Tina.

C. Malcolm said...

Dear sweet family,

You don't know me, but I've been following your family's story for quite some time now, and just wanted you to know that I am praying my heart out for you and Alicia!!!!! My heart is broken, as I feel like I know you guys!
Lots of Love and praying for the Lord to work many miracles! You deserve all of the miracles Heaven has to offer, and so much more, Michelle, for the way you have not wavered, when so much strength and faith has been needed. You are an amazing woman. Praying hard...

Karlysmom said...

Michelle -
We are praying hard for you sweetie!! Praying for wisdom for the doctors, and complete healing and comfort for you. I wish I could be there to hold your hand and encourage you. Rest and heal!
YOU ARE LOVED!!!
Hugs,
Nancy Ross

Dianne said...

Michelle,

Thinking of you, and praying for you!! Dianne

Mary Ann Fiaschetti said...

Michelle,
Our prayers for Alicia have always been answered. With all of the FAmily praying, He will hear us pleading for you too. Hope you can feel all the love and hugs sent your way!

jennifer said...

Michelle:

Hang in there. You have our prayers as well.

Jennifer Gough

Charisse said...

Thanks for the update again. We are praying for the infection to go, liver to stabalise and for the cancer to be dealt with. Praying for Michelle to be stabalised!
It is ok, Michelle. I think Erika has become a much stronger and is a real good mum! She will be fine looking after Alicia! You have done a good job as well :-)
Love Charisse

Anonymous said...

Oh Michelle!!!!!!!!!! You know I'm praying like crazy right now! You're in the Lord's Hands. His Will be done!
Romans 8:26-28 Likewise the Spirit also helpeth our infirmities: for we know not what we should pray for as we ought: but the Spirit itself maketh intercession for us with groanings which cannot be uttered. And he that searcheth the hearts knoweth what is the mind of the Spirit, because he maketh intercession for the saints according to the will of God. And we know that all things work together for good to them that love God, to them who are the called according to his purpose.
Prayer Bears
My email address

Dianne said...

Good morning Michelle. I hope today you are feeling a bit better. I am praying for you!! I am not going to call, because I don't want to interrupt any chance you get to get some rest. Please know you are in my thoughts and prayers!!! Love, Dianne

Anonymous said...

Hope you're doing better!!!!!!!!!!!
Continuing to lift up prayers!
Isaiah 40:28-31 Hast thou not known? hast thou not heard, that the everlasting God, the LORD, the Creator of the ends of the earth, fainteth not, neither is weary? there is no searching of his understanding. He giveth power to the faint; and to them that have no might he increaseth strength. Even the youths shall faint and be weary, and the young men shall utterly fall: But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.
Prayer Bears
My email address

Kristin Young said...

Thinking of you all.