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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.



Saturday, November 1, 2008

Day +135



Yesterday really wore me out!!!!!!!!!!!!!!!!!!!! We arrived at the hospital for Day Hospital at 8:30am and did not finish until 5:30pm. Everything went well but Alicia had to get Three different infusions. She did not have to get Platelets though because her Platelets only dropped to 29,000 which Dr Davies said could be the first sign of her producing her own!!!!!!!!!! This is the longest she has went without needing a transfusion of Platelets. This Thursday will be 2 weeks. We have to be in the clinic Monday Morning at 9:30 and they will check them again, who knows maybe they will go up for the first time ever!!!!!!!!!!!!!!!!!!! Her Wbc went up even higher though, they were above 30 this time which still has me worried but I did have a meeting with Dr Davies Friday and she assured me that she was not worried that Alicia was 100% engrafted and they check for blasts (leukemia cells) every Cbc and it is not the case. She said it is the new Marrow going crazy with taking over her body. She said she was very impressed with Alicia's progress and she even said she gave me the Grandma of the year award for holding up as well as I have (Yeah Right)
So after a very long day at the hospital a friend of ours who we had met during transplant, Roxanne and Anthony, came and took us to her Hotel for a Halloween party they were having. BAD IDEA!!!! The minute we got Alicia down there my heart started beating a mile a minute and I said NO WAY and we took Alicia up to her room where there were NO KIDS!!!!!!!!!!!!!!!!! She had such a fun time. It was like she was in a foreign country like she has never seen the "Real World" She smelled out her room like she was a dog, it was sooo cute. Alicia would take turns knocking on Anthony's door to trick or treat then Roxanne's, She had soooo much fun. Alicia even got to help Roxanne cook.
here is Alicia in costume, I also have one of Jayshon in his but Erika said Anson wouldn't cooperate so I did not get one of his..........................



I also wanted to include a picture of the shirt Alicia was wearing under her costume ( Thanks Reid ) I just love this shirt!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
and this picture I couldn't help but adding also, They're so cute!!!!!!!!!!!!!! Only 12 more days til they will be here HORRAYYYYYYYYYY!!!!!!!!!!!!!!!!!!!!!!!
Alicia has been complaining of a stomach ache all day. I have a feeling it is just the candy she ate, no fever so I have hid the candy and plan on sending alot home with Erika, LOL I am going to sneak it in Anshons pockets!!!!!!!!!!!!!!!!!!
Now for a moment we had yesterday that took my breath away............................. I feel aweful for not even realizing it but when were at Roxanne's she has a full size mirror on the back of the bathroom door, Alicia walked by it and froze in her steps.......... I about lost it. I said O my she has never looked in a mirror since transplant..... I had not even thought about it. Alicia was checking out her entire body. she too off her bandanna and lifted her shirt and turned her head all around. Roxanne, being a Kindergarten teacher came to my recovery. She kneeled beside her and told her how pretty she was and best of all she went and found a tube of lipstick that was never used and gave it to her and showed her how to look in the mirror and put it on. I know I sound retarded but that was a moment I will never forget.
Thanks Roxanne!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

4 comments:

Charisse said...

Awww...Michelle, I can see how emotional that would have been to see Alicia study herself like that, especially when she has not looked at herself since transplant. I feel like I want to cry while reading that. I am so glad your friend was able to help in that situation. The pictures are cute with Alicia putting on the lipstick.
I am so glad her marrow is doing so well and praise the Lord that her platelets may be holding up from her own marrow!
Love ya heaps
Ps...you do deserve the best grandma reward ever!
Love Charisse

Anonymous said...

wow im so glad that things are going so well,it sounds like she is finaly on the right track.roxanne is pretty awsome isnt she,she and sergeo and anthony were jeremy and my rock when we were first through transplant.it is realy hard when they realize how much they have changed.the pic was amazing and she is so cute.we miss you and hopfuly will see you next mounth.

kim and jeremy

Anonymous said...

But she IS beautiful!!!1
The final words of Scripture offer such comfort! Praying!
Revelation 22:20-21 He which testifieth these things saith, Surely I come quickly. Amen. Even so, come, Lord Jesus. The grace of our Lord Jesus Christ be with you all. Amen.
Prayer Bears

Anonymous said...

I love all the photos. Alicia is beautiful, as always. Love, Dianne