CLICK HERE FOR THOUSANDS OF FREE BLOGGER TEMPLATES »

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.



Sunday, November 23, 2008

Day +157

Hello all sorry I have not updated in a couple of days. My sister, Denise which will be here Tomorrow if I have not mentioned that a million times, well any way she was on my butt yesterday about updating. She said there are many people who rely on my updates to keep up on Alicia so I am very sorry.

We have been catching up on some much needed sleep this weekend. I have also had a very bad headache but this morning it has seemed to go away, I just hope it goes away so I can get things ready for Denise, I have mentioned she will be here tomorrow?

Denise is also bringing her daughter Cassie. Alicia does not know that Cassie is coming. We are going to hide Cassie and surprise Alicia. I can not wait to see Alicia's face when she sees her. We are planning for Denise to come in first and then about five minutes later we will have Cassie knock on the door, Alicia is going to be sooooo excited, I will take a picture of that moment!!!!!!!!!!!!!!!

Friday we were at the Hospital most of the aftrnoon. Alicia got her Ambison Infusion and it went well. They also did a Cbc and Alicia's Platelets came up by their selves again!!!!!!!!!!!!!!!!!

Here are her counts as of Friday. I know some of you might not understand when I say what her counts are so I will post the "normal range" also. The normal will be the first number I post then the second will be Alicia's on Friday........

Wbc (white blood count) normal--(5.0 to 14.5) Alicia's-- 25.2
Rbc (red blood count) normal (4.00 to 5.20) Alicia's--3.56
HGB (hemoglobin) normal (11.5 to 15.5) Alicia's 9.9
Platelets normal ( 135 to 466) Alicia's 72
Anc normal (1.50 to 8.00) Alicia's 20.23

these counts might look kinda crazy to some of you but I am very pleased with the way they are. Dr Davies is still not worried about her Wbc of Anc so I trust her and I am OK with them now also.

One of her counts did come back abnormal which is concerning the Doctors, it has to do with her Liver and enzymes. One is her Alk Phos. It is slightly high, they told me it works with the calcium and is what makes her bones strong so they are worried because her calcium is very low so they started her on another med which will help to bring her calcium up and her Phosphate down, I was also told to be more careful with her because her bones could be more fragile. Also her GGT, AST, and ALT are still elevated. This also has to do with her Liver. The Doctors are starting to get concerned about that as well. They said it most likely has to do with medication but they are watching her numbers closely.

We will be in Day Hospital on Tuesday o I will know more then and I promise to update as soon as I find out anything.

Please don't forget to visit Abby patterson's sight and help with the Toy Drive if you can, and please let her know it is in Alicia's honor.

1 comments:

Anonymous said...

Thanks for the update! I just always assume that everything's fine when you don't write in...
The Lord is going before you, too, and will not forsake you! Praying!!!!!!!!!!!!
Deuteronomy 31:8 And the LORD, he it is that doth go before thee; he will be with thee, he will not fail thee, neither forsake thee: fear not, neither be dismayed.
Prayer Bears