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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.



Monday, February 9, 2009




I wanted to share these pictures of Alicia. I soooooo love them. This is Bill a VERY nice guy who came to the RMH and gave massages. Denise got one when she was here and she said it was AWESOME. I gave my slot to Alicia as you can see. Alicia LOVED it. Bill came back the next day so I could get one, (which i sooooo need) but we were at the Hospital most of the day ( go figure ) Make sure you let me know when you will be back Bill and Thanks so much for what you did for Alicia.
I also want to thank Anita and George back home for the shoe,s and angel and many many many cards you have sent Alicia. I can not wait to meet the both of you. Also Thanks Dianne, John and Michelle for the Diego coloring kit. Alicia is coloring it now as I am writing this.
Now to the update. Alicia is still fever free and now we are dealing with high blood pressures instead of low. They believe the high Bp is coming from all of the fluids she is getting so the dave her lasics which seems to be helping. Her Platelets also have dropped drastically. They are down to 11,000 today from 104,000 just a week ago. She was going to get platelets this evening before she went to have her Pic line put in tomorrow morning but that all has changed now. Dr Davies now wants to put in a mediport instead of a Pic. This is a device that will be placed under her skin in her chest that will have to be accessed with a needle every time but it is not as easy to get infected plus it is more convenient for when we go home. They want to wait til the end of the week to put it in to make for sure her body is clear of the bacteria that has been found. We are up to 6 types now and all but one the doctor in rounds said he has never heard of before. GREAT!!!!!!!!!!!!!!!!!!! They did say these are very serious bugs and he wanted to research a little more to make sure she is being totally covered for all of them. Tina looked them up and is explaining them a little better to me so I will let everyone know more when I understand myself.
We will more than likely be in the hospital til the end of next week and I was told this will set us back a few weeks to when we will be going home. I am ok with that as long as Alicia is ok.
I will update more when I find out. Thanks to everyone


4 comments:

Anonymous said...

Thanks so much for the update. I have been thinking about you guys all day. Sending lots of love and prayers....Dianne

Anonymous said...

Glad she was able to have a nice massage!
Stopping by to let you know that I'm always here praying!
Romans 8:38-39 For I am persuaded, that neither death, nor life, nor angels, nor principalities, nor powers, nor things present, nor things to come, Nor height, nor depth, nor any other creature, shall be able to separate us from the love of God, which is in Christ Jesus our Lord.
Prayer Bears
My email address

Anonymous said...

Am continuing to pray and wishing you both the best. The pictures of Alicia getting the massage are precious.

Charisse said...

Ah yes, the port she will be having is the one that I was going to have in my abdomen. It is better than the ones that are on the outside as it is covered by the skin :-)
Love you,
Charisse