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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.



Wednesday, November 26, 2008

Day +160

I can not believe it has been 160 days since Alicia's transplant. I know it has been alot of days but actually it does not seem like it has been that long. So much has happened in the those 160 days but I am so thankful for where Alicia is in this leg of her journey!!!!!!!!!!!!!!!!!!!


Yesterday Alicia had Day Hospital. Denise got to experience what my day was like there. Denise was so ready to go when it was all over, She actually had her all bundled up and ready to go then she had to take her coat back off because they needed to get more blood. LOL Denise was so mad, I just laughed and said "this is just my life now" This is a picture of us on our way in to Day Hospital.............................
Alicia had a hat on but Denise took it off when we got inside.
Here is another of the three of them this morning..............................

I am so glad to have my sis here with me this Thanksgiving!!!!!!!!!!!!!!!!!!!

Everything went well in Day Hospital yesterday. Her Hemoglobin came back a bit low at 8.6 so they said she will probably need a transfusion on Friday when we go back. Her Platelets are holding their own still they were at 74,000, but her White Cells were even higher. They were at 39.9. The Docs seemed not to be worried still. My question is on Friday will will how long can they be so high and going higher before we get worried? Hopefully they will ease my mind again when we are there on Friday.

As I sit here and watch Cassie and Alicia play i can not help but to think how truly Blessed I am. With tomorrow being Thanksgiving, I know I have many many things to be Thankful for this year. First and foremost I am truely thankful for the very special person who gave the Marrow that gave my best friend a new chance at life, I am Thankful for my health also and that I have been fortunate not to get sick once that would of put Alicia at any risk. I am also Thankful for Dr Davies and the other wonderful Doctors here at Cincinnati Children's. I am Thankful for the Ronald McDonald House, if it weren't for here Alicia and I would not have a place to stay close to the Hospital. I am Thankful for the new friends I have met while being here during transplant. I have been very lucky to meet the best group of ladies (and men) during Alicia's Transplant and I am very Thankful for them. There has been very many times when I was having a rough time dealing with all that was going on with Alicia and these friends helped me through those times. They were there for me when I needed to vent, or to cry, or to scream or just needed someone to listen. Each of them had their own child in transplant but they were still willing to lend me a shoulder when ever I need it. I so hope all of you have the best Thanksgivings with your Family's, many of you are still here here Cincinnati with us, and I hope you have the best times with your families and to the ones (2) of you that are at home, I am soooooo happy that you have finally made it there!!!!!!!!!!!!!!!!!!!!!!!

I am Thankful for having such a beautiful Daughter and Grandsons. Erika has grown into such a Beautiful Mature young Lady. I am so Thankful that Anshon came into her life and they gave me the 2 most handsome grandsons on Earth. I am Thankful for every moment I get to talk or spend time with Erika. She is my ONLY child and I am thankful for that also.

I am also Thankful for my family and friends. First I am Thankful for my Mom and Dad. My Mom has been here through all of this with me to the fullest. There has not been one time that I had called her and asked for anything that she did not come through. She has dropped what she was doing the moment I called just to help me even thought I told her it could wait. I am very Thankful for the Mother I have.I am also Thankful for my Fathers health. At one time we thought my dad was not going o be able to win the fight with his cancer. I was sooo worried Alicia and I would be here going through her transplant and something would happen to my dad and I would not be able to go home but my dad has beaten all of the odds and I am Thankful he is still here with us.

Second is my sisters, I am Thankful to have Denise and Casie here with me for Thanksgiving this year!!! I am very Thankful I will not be alone. Denise is the best sister anyone can ask for. She unselfishly left her family at home just to make sure we were not alone and I am Thankful for that. I am thankful to have a sister as my oldest Kelli. She is such an awesome sister but even more she is my friend. I am thankful to have such a close relationship with all of my sisters. There isn't a day that goes by that Kelli doesn't call just to see how Alicia is doing and to just say Hi. I am Thankful to have my little sister Sarah also. Although she is going through a lot in her life I am Thankful that she is trying to better her self and learn the right way of life. I am very Thankful for all three of you.

Most of all I am Thankful for having Alicia in my life. I am so Thankful that she is winning this battle and that one day we will be back home with our Family. I am Thankful that the Bone Marrow she received engrafted to 100% I am Thankful that Alicia fought so hard and overcame the many many many obstacles that were put in front of her during her transplant. I am very Thankful that when the night ends that I am able to kiss my best friend good night and when the sun rises i can do the same. I am Thankful for her unconditional love. I am Thankful that she is part of my life and I am Thankful that I can say she is truly my very best friend.

Last but by far the least I am Thankful for the Lord!!!! He has challenged my faith more than once during all of this but I am so Thankful that her made me see. I am Thankful that God is so strong in my heart and he is the reason I am able to get past the hard days and enjoy the good. I am Thankful for every day the Lord allows me to spend with Alicia and I am Thankful for the days I spend with the Lord as well.

I hope That everyone has a Very Happy Thanksgiving, and take a few second tomorrow just to remember what you are Thankful for. I know I will.

2 comments:

Anonymous said...

How could it be 160 days already?! She needs to get well enough to go home!!!!!!!!!!
Holidays can be hard for so many different reasons. Saying extra prayers right now.
Colossians 3:15-17 And let the peace of God rule in your hearts, to the which also ye are called in one body; and be ye thankful. Let the word of Christ dwell in you richly in all wisdom; teaching and admonishing one another in psalms and hymns and spiritual songs, singing with grace in your hearts to the Lord. And whatsoever ye do in word or deed, do all in the name of the Lord Jesus, giving thanks to God and the Father by him.
Prayer Bears

Anonymous said...

Thank you for the wonderful update. I am so happy you have so many wonderful blessings in your life. You all remain in our thoughts and prayers. Happy Thanksgiving! John, Dianne and Michelle