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.



Friday, March 27, 2009

Day +281

I am soooo sorry I have not updated in a while. Alicia is still doing very well. We have had a few scares with her vomiting but she is doing fine other wise. We are trying to get back in the routine of being at home. It feels very weird and I miss all of my friends so much back in Cincinnati.


Erika and Anshon and Denise have been here everyday. Alicia keeps telling me that we can not go to the McDonald house, I think in the back of her mind she still thinks we are going back. We have an appointment there on the 21st. I know I am going to have to tell her over and over again that we are coming home. I can only imagine what is going through her little mind.


She seen Dr Rosen again yesterday and I told him my concerns with how the Nurse and his self clean her line. He assured me that it was safe but I am not convinced. The nurse came out Tuesday and changed her picc line dressing and it was a nightmare. It was the most unsterile procedure I have ever seen. I voiced my thoughts very loudly and I am not sure if I am going to let her do it ever again. I can do it myself. I definitely do not want Alicia to get another line infection.


Alicia's counts are all great. Her Platelets are still in the 400 thousands and her Wbc has finally came down to 10.8. Her Hbg is dropping slightly every week so they are keeping a close eye on that. Her electrolytes are finally under control which makes me feel a lot better.


We are going to Cincinnati the week of the 21st of April and until then we will be seeing Dr Rosen every week until told otherwise. I will keep everyone updated on her progress. Thank you so much for all of the support.

Here are pictures of Alicia and her Brothers... The first is with her and Lil Anshon and the 2nd is of her and Jayshon..................


9 comments:

Dianne said...

LOVE the photos of the kids!! Love, Dianne

Charisse said...

The photos are gorgeous!
I am glad you spoke to the doctor. How are they cleaning the line? What is the nurse doing?
I am glad you are establishing a routine at home. I am sorry to hear that Alicia had been vomiting. Alicia is so used to being by the hospital, she thinks she is going back. Sweet child....BMT are such a rocky ride :-)
Love ya,
Charisse

Anonymous said...

Thanks for the update! I know it's so different being home and you don't have to update all the time...but it's nice finding out how things are going there!
These words are so very special and full of comfort! Praying in Seattle!
John 14:1-3 Let not your heart be troubled: ye believe in God, believe also in me. In my Father's house are many mansions: if it were not so, I would have told you. I go to prepare a place for you. And if I go and prepare a place for you, I will come again, and receive you unto myself; that where I am, there ye may be also.
Prayer Bears
My email address

Unknown said...

Hi, this is Jessi the Child Life Intern from last summer. I met you on the BMT unit. I was thinking about Alicia and I ran across this page. I was THRILLED to hear that you are Finally home!!! :) Wow what a journey you have been on! I still hold positive thoughts for Alicia, and I hope that she continues to get better. She is such an Amazing little girl who forever touched my life and will always be in my heart. I wish you the Very Best! Take Care and Stay Strong! :)

Anonymous said...

Know that I'm here praying!
Revelation 22:16-17 I Jesus have sent mine angel to testify unto you these things in the churches. I am the root and the offspring of David, and the bright and morning star. And the Spirit and the bride say, Come. And let him that heareth say, Come. And let him that is athirst come. And whosoever will, let him take the water of life freely.
Prayer Bears
My email address

Anonymous said...

OMG!!!! I miss you sooooo much...I better not be here when you come for your follow up, but I will have a cold one waiting for you at my house!!!! I am so glad you finally made it home.
Love,
Jennifer AKA "the Nennifer"

Anonymous said...

This is such a special hymn. Wanted to share it today. Praying!
"Rock of Ages, Cleft for Me"
by Augustus Montague Toplady, 1740-1778

1. Rock of Ages, cleft for me,
Let me hide myself in Thee;
Let the water and the blood
From Thy riven side which flowed
Be of sin the double cure,
Cleanse me from its guilt and power.

2. Not the labors of my hands
Can fulfil Thy Law's demands;
Could my zeal no respite know,
Could my tears forever flow,
All for sin could not atone;
Thou must save, and Thou alone.

3. Nothing in my hand I bring,
Simply to Thy cross I cling;
Naked, come to Thee for dress;
Helpless, look to Thee for grace;
Foul, I to the fountain fly,--
Wash me, Savior, or I die!

4. While I draw this fleeting breath,
When mine eyelids close in death,
When I soar to worlds unknown,
See Thee on Thy judgment-throne,
Rock of Ages, cleft for me,
Let me hide myself in Thee!

Prayer Bears
My email address

Anonymous said...

Continuing to pray in Seattle!
Psalms 27:1, 4-5 The LORD is my light and my salvation; whom shall I fear? the LORD is the strength of my life; of whom shall I be afraid?...One thing have I desired of the LORD, that will I seek after; that I may dwell in the house of the LORD all the days of my life, to behold the beauty of the LORD, and to enquire in his temple. For in the time of trouble he shall hide me in his pavilion: in the secret of his tabernacle shall he hide me; he shall set me up upon a rock.

Prayer Bears
My email address

Anonymous said...

My husband quoted the first verse of this hymn in his sermon tonight. It's so very comforting! Praying!

1. I fall asleep in Jesus' wounds,
There pardon for my sins abounds;
Yea, Jesus' blood and righteousness
My jewels are, my glorious dress.
In these before my God I'll stand
When I shall reach the heavenly land.

2. With peace and joy I now depart;
God's child I am with all my heart.
I thank thee, Death, thou leadest me
To that true life where I would be.
So cleansed by Christ, I fear not death.
Lord Jesus, strengthen Thou my faith

Prayer Bears
My email address