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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.



Sunday, August 24, 2008

Day +66 ( for sure this time )

Today was a very hard one. The good bye's with Daddy and Mommy was very hard. I did the smart thing and went to the RMH for n afternoon napo so I would not have to be here and see all of the sadness. I don't even want to imagine how hard it would be to have to leave. I know how hard it is to stay but I also know the pain must be hard to have to leave her. I seen Ne-Ne and her Mommy and Daddy go through it and it hurts me to see that they have to endure that. Mommy and Daddy will be back hopefully in four weeks around the end of September, and this time they promised to bring the boys. I sooooooo miss them.

Now we are doing the count down til Aunt Kelli and Ne-Ne get here. They are driving from Kansas so it will take around 12 hours ( give or take a few ). They are leaving Friday around noon and driving til around 10pm, then they will get up early Saturday and come the rest of the way. Alicia is very excited to see her Aunt Kelli. She is our oldest sister, she is bringing her girls Kristian and Kortnie also. Alicia is also soooo happy to see Ne Ne again. Denise has been the HUGEST support for us. She has even put off a major surgery just to bring Kelli since Kelli is a scardy cat and will not fly. Cassie is also coming with them. I can not wait to see all of them. We had to get Kristian nd Cassie a special visit so they cn see Alicia, nd Dr Davies has said as long as they wear masks and gloves and gowns that they cn come Saturday and Sunday for 30 minutes with Alicia. Kortine is over the age limit so she will get a longer visit but we will also take the precautions with her as well. Denise is staying the night with Alicia on Saturday so I can hang out with Kelli and the kids for the night at the Hotel and Sunday we are going to take the girls to the zoo.

Alicia's counts have been soaring. Her Anc is way above 20.00, and Wbc is all the way up to 18.00, her Hbg is holding around 10.0 but she is still having problems keeping her own Platelets. Her Gvh on her skin is looking alittle better, but is was every where and will take a while for it all to heal. She is still getting tube feeds since she is still not eating alot. She takes one bite here and there but it is hardley anything.

My very good friend i met here is leaving tomorrow. Her daughter Abby is getting released. I am going to miss Reid very much. She has been a very good friend nd will miss getting to talk to her every day. Although she is getting me pretty good at this web cam she bought me so we promised to web cam every night. GOOD LUCK REID AND ABBY WE WILL MISS YOU!!!!!!!

Well nature calls, Alicia keeps me pretty busy in the changing of dirty diapers. I have turned out to be the Poop Queen.

6 comments:

Lynn said...

Glad you and Reid can still talk to each other all the time. What a great idea! Webcam!
We read this psalm this morning in church. Wanted to share a portion of it...praying!
Psalms 34:6-10 This poor man cried, and the LORD heard him, and saved him out of all his troubles. The angel of the LORD encampeth round about them that fear him, and delivereth them. O taste and see that the LORD is good: blessed is the man that trusteth in him. O fear the LORD, ye his saints: for there is no want to them that fear him. The young lions do lack, and suffer hunger: but they that seek the LORD shall not want any good thing.
The Prayer Bears

Charisse said...

Awww...I feel for Alicia, her mummy and daddy. For them all to be apart would be so hard. I would find it exceptionally hard.
I am glad her counts are doing well. I am glad she is doing generally a bit better.
Love Charisse

Teresa said...

That has to be SO hard for them to leave...poor Alicia! I can't imagine how hard it is for her to want to have them there when they can't be. What a blessing you are for them! I know this has to be the hardest thing you've ever gone through, but what a special relationship you have with Alicia and thank goodness you are able to be there for her like this. I hope time goes by quickly and you have more visitors soon! I wish we could come and visit!

Hang in there guys;-) Give Alicia a hug for me.

Love,
Teresa

Lynn said...

Praying right now!
John 14:27 Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid.
The Prayer Bears

Anonymous said...

Hey Poop Queen!

Now we know who to call when we need diapers changed!!! Awww, I'm so sorry that Alicia has to even say goodbye but she still has her Mee Maw! Hang in there! Love you to the moon Ms Alicia! Thanks for the photo and the drawing! The boys loved it too! Praying the platelets will hang around longer!

Blessings and Bear Hugs,

Lynn said...

Continuing to pray!
Psalms 57:1 Be merciful unto me, O God, be merciful unto me: for my soul trusteth in thee: yea, in the shadow of thy wings will I make my refuge, until these calamities be overpast.
The Prayer Bears