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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
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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.

Sunday, July 26, 2009

Hospitalized

Alicia and Michelle have both been admitted! Alicia was admitted Friday Friday night due to blood in stools. She is doing better.
Michelle was admitted last night due to infection.

I have very little information right now. I know Michelle is having liver and heart issues due to fluid.
Please Pray!!!!
I will update as I can.

Krisstina

Thursday, July 16, 2009

Michelle hospitalized


***UPDATE*** Michelle is feeling better. She is still in the hospital, but resting. She even ate today.


Alicia is good, no change with her. She is still having alot of stools.

Below is a couple of photos. I know not very nice looking. Michelle wanted you all to see her new PICC line and her bruising.

Thanks for checking in

Krisstina


Michelle has been admitted to the hospital. When she went in this morning to receive pain management a fluids she had a fever so they admitted her. She is getting a PICC line. She will also be getting a full body CT scan. They are looking to find what is going on with her.

PLEASE PRAY FOR HER SHE IS UNDER AN ENORMOUS AMOUNT OF PAIN!

Last night when I went by to see her, she had been very ill before we got there. She had been vomiting and she did not look very well. She has been bleeding alot from her incisions, because she is very bruised! It is very bad! They say that the only way to get the bruising gone is for them to bleed the hematoma's out.

We will be going to see her this evening and will update when we return.



Alicia is doing well, Having fun with mommy!!!

Krisstina

Still Alive!

I just wanted to give everyone a quick update, I now how everyone has been so worried and wondering.

I don't want to mislead anyone, I am still in a horrible amount of pain. I am very very bruised, as the Doc puts it "it looks like I have been ran over by a bus". Today I had to go in for pain management and I got four doses of Morphine along with two bags of fluid. I stay very light headed and it is almost impossible for me to get out of bed. I have an enormous amount of blood coming from my incisions but Dr Richards said that is going to happen until the bruising goes away. He has me on two different types of Pain meds, Antibiotics, inflammatory, and anti anxiety meds. I have not been able to eat either. I am going in tomorrow for more pain management so it can help me heal.


I also found out that I am going to have to have some Chemo as soon as I heal. The Cancer was contained in my uterus but Dr Richards said he needs to make sure he got all of the cells. My family has been on me about coming home for the Chemo but I am still concerned for Alicia and do not know if that is the right thing to do. Alicia has a virus in her stool and they are still vry very runny and tummy pains now and I do not want her to have to be hospitalized at home if I can avoid it.


Erika is here and Alicia is in Heaven. Erika is a huge help as my mom and Denise were as well. I just do not know what is the right thing to do yet. I have to figure out some means of financial help if I stay through the Chemo as I have ran out of all finances. I just have a lot of thinking to do.

I will update more later. Please keep the prayers coming.

Monday, July 13, 2009

Michelle and Alicia are doing ok. Michelle is very sore.
Erika is here and they both are loving that! She is having fun with Alicia, while Michelle rests. Not much to update until Thursday, when we go back to the Oncologist.

Thank you for all the prayers!
Krisstina