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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.



Thursday, June 11, 2009

Michelle and Alica


We saw Michelle today She looks good.

We had to take a test back to the hospital for Jacy. So We picked up Denise (Michelle's twin) and took her to Walgreens to get Michelle's medication. She is doing well. She is still in a lot of pain, but moving around. Her staples are ready to come out tomorrow. She had an appointment Wed. and they did cultures to make sure the site is clear. She should know the results from pathology tomorrow.

Alicia has a GI biopsy tomorrow as well. I will update when I hear from their appointments.

Below is a link to a news story from when the Bengals visited the RMH the other day.

http://www.bengals.com/news/article-1/presence-felt/9e366f62-58f9-40ee-9b9d-835bc35ccc23
The photo above is from today! Keith got rained out around three and text me he was on the way home. I told him I was at RMH with Michelle. Alica kept asking me to bring her a cell phone and pizza lunchables. I said this weekend and she said no now. So to get her off my back I called Keith and let her talk to him. Next thing I know Keith was coming to RMH. She kept telling him she wanted a cell and lunchable, now so he thought she was saying come here now. When she is on the phone you can not understand her very well. She sure has him trained. Here he came to play. He took her down to the playground while Michelle and I visited.

Thanks for stopping in to check on us!
Krisstina

Monday, June 8, 2009

Michelle released

Michelle is out of the hospital and back with Alicia!!! She is very happy about that! She said she is in a lot of pain and trying to rest.

Thank you all so much for your prayers.
Krisstina for Michelle

Sunday, June 7, 2009

Michelle update

Hello,
Just wanted to give you all an update. Michelle is doing much better today. She switched pain medicine after we left last night and it knocked her out. Her sister Denise sat with Alicia and will continue to do so until Michelle is better. Alicia is however required to be inpatient to make sure she gets the care she needs until Michelle is back at the RMH.
I talked with Michelle a little bit ago and we discussed her weight gain during transplant being from the tumor. Her oxygen level is around 93 and they keep weening he off saying they just want it to stay above 92. She is on a weaker pain medicine today. She is feeling better today, Her catheter was removed, she showered (with the help of her sister), and she changed clothes. She says she is still having alot of trouble moving.
She asks for prayers so that she can hurry back to Alicia, she is really missing her and wanting to get back to her. Her sister, Denise just updated me and said Alicia is a little confused but doing well!! She just wants her Meemaw. She also asks for prayers for Michelle, she needs them both in the same place to give more efficient care. She has some health issues of her own and will need extra prayers to stay strong.
Thank you so much for checking in.
Krisstina

Oh yes! I forgot Michelle wanted me to tell that she is doing well, she delivered a baby that weighed 9 lbs. and was 27" long. The baby does not have FA! She never seizes to amaze me with her upbeat attitude!

Saturday, June 6, 2009

Michelle Surgery

*****UPDATE*****
Just dropped Denise off to Alicia.
We picked her up at the airport, went to see Michelle, and then took her to rmh to drop off her things, and finally she reached Alicia!
Michelle is doing ok. She is in a lot of pain, itchy and a little low on oxygen. So she had them change the pain meds while we were there and they gave her benedryl. She is being her normal Meemaw self and dying to get back to Alicia. They say if she walks and uses the restroom she can get out Monday. They removed a cyst that was on her ovary. It was fluid filled about 4 liters to be exact. They also removed a fibroid from her cervix. No cancer!!! They did say it had been growing for years! She has not been to the doctor for 23 years!!! Since she had Erika! For those of you that know me, you know what I said to her. She laughed and said I bet you are updating the site and telling them you have been all over me, I told her not yet! lol! I will update tomorrow or as I hear anything new.
Thank you so much for your prayers and support!
Krisstina for Michelle


Just spoke with Michelle and she is doing ok, very sore and tired. She said her phone was going off the wall, She asked me to update the site. Please remember that she needs to rest and as soon as we know something new she or I will update as soon as possible. She really just needs to rest today.
Thank you so much for your concern and prayers she really appreciated all of it. I am sure in a couple days with prayer and rest she will be up to talking more.
Thanks again.
Krisstina


Michelle is out of surgery and doing well. I will update more as I hear. I will be picking her sister up at the airport about 9 pm and we will be going up there at that time. Last night Michelle was telling her family to just wait but her sister called and she decided to come. I got the flight booked and she will be taking care of Alicia while Michelle is down. The incision they made is said to be very big, so she will be down for a little while. Keep praying this family is going through so much right now!
Thanks for checking in.
Krisstina

URGENT NEED FOR PRAYERS!!!!
As we speak Michelle is in surgery. Please pray all goes well.
yesterday late afternoon Michelle was in an enormous amount of pain and eventually went to the hospital ER. They did some tests and found a 27" cyst on her ovary, they are removing it now. I will update when I know more.
Krisstina

Thursday, June 4, 2009

SORRY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

OK OK OK MOM AND KELLI............................. SORRY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

My Mom and my sister have been on my butt to update and I have been slacking again SORRY!!!!!!!!!!!!!!!!!!!!!!!

Alicia is still doing fine except her poop is still very very bad!!!!!!!!!!!!!! Doc Davies said we will be here until she can get her tummy fixed. They are doing more tests so hopefully we will know something soon. The last x-ray showed her colon is healing good though so that is good news. I still do not see us going home anytime soon though. We did get some AWESOME news today... Our insurance is going to pay 100% of Alicia's hearing aid. It should be here Wednesday. I am so excited for her!!!!!!!!!!!!!!!!!!!!!!!


Today she has her Biopsy so now is the hard part and the waiting game.


Now on to Normal news for Alicia...... As everyone knows nothing shocks e when it comes to her so I was not shocked when Alicia cut her hair the other day. YES she cut her hair. She got the scissors from my purse and cut herself some bangs. Leave it to her. She also embarrassed me the other day so so so bad. I had woke up and my monthly visitor had came ( LOL sorry men) anyway Alicia had came in and she thought I was hurt and she was so worried. Well we were in the elevator on our way down to go to the Hospital to get her labs drawn and there was an older lady in the elevator with us and Alicia went to telling her that we were going to the hospital to get a band aid cause mee-ma' butt was bleeding. I was soooooo embarrassed!!!!!!!!!!!!!!!!!!!


LEAVE IT TO ALICIA!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!