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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, June 30, 2008

Day +11

Alicia had a pretty rough night last night. Her Mucusitus is pretty bad. She woke up eery hour gagging up mucus. And on top of that she still has a fever and diahreha.

Her lab results came back and it looks like they have the bacteria under control, they are still not sure what type it was but at least the last culture came back negative.

Her cbc's are almost the same from yesterday, her ANC went down to .04 and her WBC went down to .2. Her hbg is at 7.9 and platelets holding from the transfusion at 112,000.

The doctor in rounds this morning did give me a little hope, she said Alicia should be feeling a little more like herself by this weekend. I can not wait. It is hurting my heart to see her so sick. She litterally can not lift her head off the pillow. She is so weak but she is being such a big girl through it all. She can barely talk that is how weak she is. But we are over half way to the three week mark they said it would take for her new cells to graft.

Alicia did get a little strength this morning. She got another package in the mail from her Mommy, it was the cutest Mickey Mouse Clup activity set. She wanted to call her Mommy and tell her she loves her. It took all she had to talk to her and it was in a whisper but it made her and Erika feel better. I also got to heat the boys in the back ground. Lil Anshon sounds like he is getting so big. I miss them both so much!!!! Here are some pictures of my boys the first is Lil Anshon is is almost 1 1/2 yrs old and the 2nd is my newest grandchild Jayshon, he just turned a month old on the 20th.




I can not wait until their Big Sissy is all better and we can all spend alot of time together.

Thank you again for caring about Alicia, all the prayers are very much appriciated.

4 comments:

Teresa said...

So sorry Alicia is feeling so bad! Our hearts & prayers go out to you guys. Give her a hug for us. I hope she starts feeling better by this weekend. Loved the photos of her brothers. They are gorgeous little guys!

Hugs,
Teresa

Anonymous said...

I'm so sorry Alicia is feeling so droopy. Hope she feels better soon! Hang in there!
Blessings and Bear Hugs,

Charisse said...

Hi Michelle, Alicia and Erika,
sorry to hear that Alicia is still feeling so weak. It will be exciting to hear when she feels more her usual self again. We are still praying. I love the pictures of your grandsons! So beautiful! I bet Alicia misses them also.
Lots of love,
Charisse

Anonymous said...

You've got some adorable grand kids there! I've got 3 and it's just so amazing!
Received this verse in an email today and thought it was interesting. Still here, still praying!
Isaiah 25:4 For thou hast been a strength to the poor, a strength to the needy in his distress, a refuge from the storm, a shadow from the heat, when the blast of the terrible ones is as a storm against the wall.