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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, October 5, 2008

Day +108

Alicia is still showing signs of improvement, except in the eating department. Although this morning was the first morning in almost 2 months where she ate. She had 2 mini Cinnamon rolls that A friend made for her son her on the floor. I was sooooooooo happy. I made such a huge fit over it but the excitement was soon smashed.

Alicia is on a very big kick about wanting to go home. She has been asking ALL morning if it was time to go home yet. I keep telling her that if she keeps eating and getting stronger than it would be soon but that is not good enough. Every Nurse or Doctor that has walked in our room this morning Alicia has asked if she can go home. It makes me so sad I just want to bawl. Last night I had a dream about our families Thanksgiving, and our family all together. We are so home sick. Yesterday my family had a Baby Shower and when I called home all I heard was the laughter and it hurt my heart bad. I told them to find the biggest doll or teddy bear and sit in a chair and put a beer in my hand and do not let anyone sit one me. My sister laughed but she did it. Erika was there and she made she I was included in everything. At least I knew my name was being mentioned alot!!!!!!!!!!!!!!!

Well the Doctors just rounded on us and I kinda lost it. I tried not to cry but it did not work. Do you know how hard it is to have someone you love as much as I do Alicia ask to go home. I still have tears rolling down just thinking about it. I told the doctor I wanted some time frame or plan as to what is happening with us going home. I told her I needed to know, even if it was going to be a very long time I needed to know and she told me it was hard to tell, that she has seen a big improvement in Alicia in the last week but she still has alot to over come before we will be able to be released. Alicia is on alot of IV meds that needed to be changed to oral and that would take time she said. She also told me she was for sure it would be at least 2-3 more weeks.

Sorry today is not a happy one for me. I miss my family very bad and I have not seen my Grandsons in over 4 months and now it looks like it might be another 4 months before I get to see them. I will write more today when I am feeling a little better.

5 comments:

Teresa said...

Hugs...

I am so sorry your day is being so difficult. It made me all teary eyed reading it and thinking what you must be feeling and going through. I can't imagine how hard it is to hear Alicia wanting to go home and knowing she can't yet. Hugs to you both! You're in our prayers, as we pray for the Lord to give you endurance and peace and comfort.

Love,
Teresa & Emma

Anonymous said...

Dear Michele,
I've been reading your posts even though I haven't responded. I think of you both and pray for you every day and hope that soon Alicia will be able to go home and will go home healthy with all of her problems behind her.
I know it's hard on you and Alicia and don't really know what to say. But in your heart, you must know that your family misses you as much as you miss them and they worry about Alicia and aren't able to be there physically to comfort both of you or to see how Alicia is doing.
Praying that all will go well and that you draw your strength from the people that love you and care about you and from the Lord.
Mary Ann

Charisse said...

Hello my love,
My heart goes out to you my love. I don't know what to say. I find it emotional reading what is going on. It is so close to the heart with having FA myself. However, I am not going through the transplant process like you guys. However, the emotions related to what you are going through are so close to my heart.
Praying for you lots,
Love Charisse

Anonymous said...

Oh how I hope Alicia can go home soon!!!!!!!!!!!!!
Jesus understands suffering. Praying right now!
Hebrews 2:9-10 But we see Jesus, who was made a little lower than the angels for the suffering of death, crowned with glory and honour; that he by the grace of God should taste death for every man. For it became him, for whom are all things, and by whom are all things, in bringing many sons unto glory, to make the captain of their salvation perfect through sufferings.
Prayer Bears

Anonymous said...

Thinking of you...Love, Dianne