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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.



Tuesday, June 30, 2009

Here we go again..........

Alicia had her clinic appointment today, the good news is she is starting to gain weight, her stools are loose again so I hope she doesn't start to lose is again. The part I am worried about though was her CBC. The Nurse, Paula, just called and said Alicia's white cell count is elevated to 22.3 and her Anc is elevated again to 19,000. This is always a trend for Alicia before she gets sick. They also said her Liver numbers are elevated again which also has me very concerned. They also did a CRP test which shows the inflammation in her body and it was elevated as well. I don't have good feelings about this, Please pray that this does not mean Alicia is getting sick again.


Last night was a horrible night for me, I was in so much pain that I barely slept. ( I haven't slept well in weeks) If Alicia gets sick this means more nights on those very uncomfortable beds at the Hospital. The last stay on those beds is when I ripped open my wounds. I am not concerned about myself as we all know. This is about Alicia and I just pray she is not getting sick. She acts fine right now but that is also the trend before the storm.


I am so counting the days before Denise gets here so I can concentrate on getting myself through this surgery which I am scared to death of.

Please keep Alicia in your prayers today!!!!!!!!!!!!!!!!!!!!!

Monday, June 29, 2009

One week to go

I have not been feeling well at all the last couple of days. I am glad that the surgery is right around the corner so I can finally get it behind us, but I am also very very scared. My wound has been hurting a lot lately but Kim and Amy, my close friends here at the RMH both say it is looking very good. I have been sleeping a lot lately.

Denise will be here a week from today so that will help me out a lot. Erika will be here on the 12th and I can not wait. I miss Erika a whole lot. My Mom has been taking care of things back at my apartment and I am so greatful to her!!!!!!!!!!!!!!!!


My FAmily has given so many words of encouragement and I do not know what I would do without them. Thank you so much!!!!!!!!!!!!!!!! I can't forget my friends outside of my FAmily because they have been a huge support also!!!!!!!!!!!!


Alicia is doing fine. She has a check up with Dr Davies tomorrow. She seems to be gaining weight since she has been on TPN, and her stools seem to be improving a small amount. Alicia is not liking the idea of having to go to the hospital when I do. She doesn't understand why she has to go if she is not sick. She keeps saying she don't want to go and she is scared, but once I tell her Ne Ne will be with her she says ok. I just hope it isn't for long.


Once again thank you for so much support and prayers. I will update more when I am feeling a little better.

Friday, June 26, 2009

Date set for Surgery

Well once again I am sorry for the lack of updates, I spend most of my time on my back in bed if Alicia is not demanding my attention. I went and met with Dr Richards yesterday and the st date for the Surgery is on July 8th at 9am. I am still in a lot of pain since I ripped open but one of my very close friends Kim is changing the dressing twice a day and she is doing an awesome job. Every doc that has looked at my wound has commented on how well she id doing and how well the wound looks. It is not draining and has no infection which I owe all to Kim. Thank you so much girl!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! She is a Nurse by practice so that helps a lot also.


When I left the appointment yesterday once again I was worrying because there were days in between the surgery and when Erika would be here. Another one of my close friends, Amy, said she would stay with Alicia along with Tricia another friend of ours but once again Denise has came to my rescue!!!!!!!!!!!!!!!! I guess she had already had it planned to be here for the Surgery and to stay with Alicia til Erika got here. My Sister is the BEST!!!!!!!!!!!!!!!!!!!!!!!!!! Thanks Denise, I promise to be a better patient this time!!!!!!!!!!!!!!!!!!!!!


My mom is still holding it all together back home so I can not forget to thank her. Mom you are awesome a have taken so much off my mind. I can't wait to be "Roomies" I also want to that Tina for everything once again and Dianne for being so much support and all of my FAmily for so many messages and words of encouragement!!!!!!!!!!!!!!!!!!!!!!!!!!!


Alicia is doing great. She is loosing a lot of weight so they put her back on TPN which is an IV nutrition. She has all of her energy back and is being "Alicia"


Thank you so much for the prayers and support!!!!!!!!!!!!!!!

Sunday, June 21, 2009

Out of the Hospital

Well we are back at the RMH. They let Alicia out straight from ICU to our room at the RMH. The word was they were short of rooms on the BMT floor. Alicia seems to be doing well again. She is still having problems with her runny stools but all of her cultures are coming back negative so we still have no reason as to what happened earlier this week. She has an appointment tomorrow with Dr Davies so we might learn more then.


I am still in a lot of pain but it is getting a little better. My friend Kim is changing and packing my wound twice a day. It is very uncomfortable to get done but I feel so much better with her doing it. I have an appointment with the cancer doc on Thursday so I should know when the surgery will be after that. I am soooooo scared. They said that I will probably have to use a wound vac in order for the wound to heal after surgery.


I want to thank everyone for all of the prayers and a special thanks to Dianne and her family for the gift you sent me!!!!!!!!!!!!

I will update soon

Thursday, June 18, 2009

GIVE ME A BREAK!!!!!!!!!!!!!!!!!!!!!!

I FINALLY GOT THE INTERNET TO WORK HERE IN ICU. THANKS TINA FOR COMING TO MY RESCUE ONCE AGAIN.


I CAN NOT BELIEVE ALL OF THE BAD LUCK WE ARE HAVING LATELY!!!!!!!!!!!!!! I AM ALMOST SCARED TO WAKE UP JUST FOR THE FEAR OF NOT KNOWING WHAT WILL HAPPEN NEXT!!!!!!!!!!!


ALICIA IS DOING A LOT BETTER. WE ARE STILL BATTLING HER BLOOD PRESSURE BUT HOPEFULLY WE WILL BE MOVED TO THE BMT FLOOR TOMORROW.


WELL THE DAY STARTED FOO CRAZY FOR US AGAIN. I WENT TO THE RMH TO TAKE A SHOWER AND JUST AS I WAS ABOUT TO GET IN I BENT OVER AND ALL I FELT WAS MY WHOLE STOMACH RIP COMPLETELY OPEN. YES I AM FOR REAL!!!!!!!!!!!!!!!!!!! BLOOD WENT EVERY WHERE AND OFF THE EMERGENCY ROOM I WENT. MY WHOLE ENTIRE INCISION WAS RIPPED OPEN. THEY HAD TO CALL THE SURGEON WHO DID MY SURGERY TO COME LOOK AT IT AND SHE SAID THEY COULD NOT CLOSE IT DUE TO THE RISK OF INFECTION. THEY HAD TO PACK IT WITH GAUZE AND I HAVE TO GO TO THE CLINIC IN THE MORNING FOR THEM TO RE-PACK IT. SO NEEDLESS TO SAY I AM COMPLETELY OPEN AND IN A LOT OF PAIN AGAIN.


TOMORROW IS ALICIA'S ONE YEAR MARK SO I AM PRAYING IT WILL BE A BETTER DAY. WHO WOULD OF THOUGHT THAT ONE YEAR LATER WE WOULD BE SITTING IN ICU. I AM THANKFUL THOUGH THAT WE ARE TOGETHER AND ALL WE CAN DO IS TAKE IT ONE DAY AT A TIME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!


PLEASE KEEP US IN YOUR PRAYERS, IT HAS TO GET BETTER!!!!!!!!!!!!!!!!!


ALICIA MEE MA LOVES YOU AND I AM SO PROUD OF YOU!!!!!!!!!!!!! HAPPY SPECIAL DAY BABY!!!!!!!!!!!!!!!!!!!!!!!!!