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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, July 11, 2009

Michelle and Alicia

I am sorry for not updating yesterday! There was not any real change. She did have one more bag of blood and was much better. She is very sore, but out of the hospital today.

Alicia was going to be released when Michelle was, but she had a fever last night that lasted thirty minutes. So that bought her an overnight stay, she will be released tomorrow. Michelle is with her now. She was sooo excited to see her Meemaw!

Michelle has her followup appointment on Thursday and Will get her results then.
Thank you for checking in!!!
Krisstina

Thursday, July 9, 2009

Michelle Update

Michelle is not going home today, maybe tomorrow. She was still sounding very out of it today. She is still not feeling up to par.
After surgery yesterday they had said she lost a lot of blood buut it was not anything to worry about. I guess last night after we left and into this afternoon, she received 3 tranfusions. All is fairly well now. She even tried to eat. She sat up a long time both last noght and today.

Please pray for her, you all know how she gets when she is not near Alicia.

Thanks for checking in.
Krisstina

Wednesday, July 8, 2009

Hello everyone,
This is Krisstina updating for Michelle. I apologize for the late update. Michelle made it through the surgery OK and got up to her room around 6:30PM.
Her surgery was scheduled for 11:30 AM. She did not go back until 12:04PM. They called out at around 2:20PM and said all was going well, but still working. She got to recovery about 3:05PM.
Monday when we met with the doctor, he said he was not giving a time limit to the surgery. He said he was taking as long as he needed. He had a lot of work to do and scar tissue being one BIG obstacle he had to conquer. They were removing several sites for biopsy, along with scar tissue, lymph nodes, ovaries, tubes, uterus, and cervix. They were planning on doing it laproscopically with robots. She has 4 little 2 inch cuts that are glued together. He did not want to open her up again. She still has a very large open wound on her tummy. It is about 4 inches long and 2-3 inches wide at the top closest to skin and about 3 inches deep, but looks awesome. Michelle had been praying that the robotic would work and IT DID! We are so happy! Much less healing and down time.
Boy she was very unhappy tonight! She was feeling pressure and it scared her so she was getting anxiety. We finally got her comfortable. It took about 2 hours to get her comfortable enough to sit still. Not totally but when we left at 9:00PM they were trying to get finished.
We will find out more on results in about 72 hours.
Thank you so much for your prayers and checking in on Michelle and Alicia! Pray that they both get back up to par soon and will be able to return home to Kansas!

I will be updating every evening until Michelle is able to.
Thank you Krisstina

Alicia is doing well. She was already crying for MeeMaw tonight and Michelle spoke to her all drugged up and told her not to cry she got her new tummy and would be home tomorrow! YES, tomorrow is when she should get released.

Tuesday, July 7, 2009

MY SURPRISE!!!!!!!!!!!!!!!!!!!

Yesterday was probably one of the best days ever. I felt pretty good and I got the surprise of my life!!!!!!! Denise arrived around ten pm and she told me to come out and help with her bags and said she had a surprise for me and when I walked out there stood MY MOM!!!!!!!!!!!!!!!!!!!!! I was so surprised and so HAPPY!!!!!!!!!!!!!!!!!!!!!!!! She came to see me through my surgery while Denise stays with Alicia. I cried like a baby.


I went to see the Surgeon also yesterday and he said that he is going to try his hardest to do the surgery with the Robot but if he did have to open me back up that he would not use the same incisions as the last surgery. He was very pleased with the way it was healing and did not want to touch it. ( THANKS KIM!!!!!!!!!!!!!!) I am on a clear liquid diet all day so I get to watch my sister and mom eat Crabs at Joes Crab Shack.


Alicia has an appointment today for more labs. She seems to be feeling fine and is just so elated that Ne Ne is here. She seems to be fine now with being admitted since Denise is going with her.

Tina is going to updated at the same time every day through my surgery ( Thanks Girl!!!!!!!!)


Thank you for all of the support.

Wednesday, July 1, 2009

Still holding my breathe................

So far so good. Alicia seems to e doing fine so please keep the prayers coming!!!!!!!!!!! I was up every 30 minutes last night taking Alicia's Temp and so far so good. She kept feeling hot to me all night but the highest she got was 99.6. I thought my thermometer was not working right so I had Kim bring me one around 6am (Kim is always awake at that time of the morning to go to the hospital with her baby) but hers read the same. Alicia is very active and she ate a whole bowl of mac and cheese for lunch so I am still holding my breathe that her own little body is fighting off what ever is going on in there.


Alicia is on the count down for Ne Ne and Mommy to get here. She barely opens her eyes before she asks me how many days til they get here. I can not wait myself. Denise is such a HUGE help and I miss Erika sooooo much!!!!!!!!!!!!!!!!!!


I had another rough night, besides taking Alicia's temp so often, I was also hurting a lot. Today is better though. Kim is doing such an Awesome job packing and taking care of my wound, Her and Amy both say how well it is looking. Now if it would only stop hurting. Amy has been a HUGE help also, she takes Alicia off my hands all the time to give me little breaks... They are both such a HUGE support.


Tuesday Tina and I go for one last appointment before the surgery. I am so thankful for Tina being there, she has been my ears and she so understands all of this and can explain it to me in English.


Please keep praying for Alicia not to get sick. We have an appointment at 8:30 in the morning so hopefully her counts have went back to normal. I will update after her appointment tomorrow.