CLICK HERE FOR THOUSANDS OF FREE BLOGGER TEMPLATES »

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.



Friday, July 31, 2009

Michelle and Alica

Well let me start by saying, unfortunately I have very little information.

Alicia is doing well. She is preparing to head home in a week. Erika is coming in on Sunday to be trained to care for Alicia. After the training, if all is still doing well she will head home!!!! YEAH!!! Please pray all stays well.

Michelle is having more issues. Her kidneys are under stress, breathing, heart rate, and liver. We did not get any results today from the fluid. Tomorrow!! It seems her status keeps changing.
I do know tomorrow her father, step-mother, and Brother in law are arriving. They fully plan to take her home to Kansas this week, they are hoping by Tuesday. She will be immediately placed in the hospital. That is the last I heard. Since things keep changing, we will see.

She does have stage 4 cirrhosis of the liver, from an unknown cause, at this time. They are and have been saying that if they get this infection under control, she can live another 20 years with this.

I know you all are very worried and frustrated, but it has been a horrible waiting game. Please be assured that I will get the information as soon as I can. Sometimes her sister has tons of phone calls and I do not get much information until later in the day!

Please just pray for her!

Thanks so much!!! You all are a true blessing!!!
Krisstina

Tuesday, July 28, 2009

***UPDATE***
Michelle looks ok, not good but ok. She was very uncomfortable and tired. She was in and out.

She has a severe infection (that is infested in 50 lbs of fluid she put on since last Thursday) and it comes first on the repair list. Second the liver and third the cancer. Tomorrow they are going to attempt to remove some fluid and send to lab. They have to make sure the meds are covering it. She is not out of the woods. She could go south at any time. They said her liver is very bad and could give out at anytime, she will then die. If they can get her through this infection the hope is to treat the liver to help repair it, if not a transplant. At this point they know nothing of the sort. They can not check the liver until the infection is under control.

They did an ECHO and will get results tomorrow.

She was very uncomfortable and upset, her phone was going crazy while we were there. She was not happy. She says it is that way all the time, so she can not rest. Texts and calls at least 4 times in a 45 minute period. I will update you when they call me tomorrow with the latest.

She asked me tonight if this was the end and I told her I did not think so and she started to cry and said I have a really bad feeling. She cried when talking about Alicia and how she could not care for her any longer. I told her when she got better she could help, but it is Erika's time.

Denise will be here at least another week. She is very happy about that!
PLEASE PRAY FOR HER!!!!
She asked me to tell you all thank you sooooo much!!!! She really needs prayers and she appreciates all of you!!
Krisstina
***********************************************************************************

Michelle is still hospitalized and is not doing well. Her liver is declining, her o2 stats are low, her heart is under distress, and she has a very bad infection. Please pray she survives this!!!! They have said she would not survive a trip home right now and she will have to be here until they can get it taken care of.

Thansk
Krisstina

Alicia is doing well.

Sunday, July 26, 2009

Hospitalized

Alicia and Michelle have both been admitted! Alicia was admitted Friday Friday night due to blood in stools. She is doing better.
Michelle was admitted last night due to infection.

I have very little information right now. I know Michelle is having liver and heart issues due to fluid.
Please Pray!!!!
I will update as I can.

Krisstina

Thursday, July 16, 2009

Michelle hospitalized


***UPDATE*** Michelle is feeling better. She is still in the hospital, but resting. She even ate today.


Alicia is good, no change with her. She is still having alot of stools.

Below is a couple of photos. I know not very nice looking. Michelle wanted you all to see her new PICC line and her bruising.

Thanks for checking in

Krisstina


Michelle has been admitted to the hospital. When she went in this morning to receive pain management a fluids she had a fever so they admitted her. She is getting a PICC line. She will also be getting a full body CT scan. They are looking to find what is going on with her.

PLEASE PRAY FOR HER SHE IS UNDER AN ENORMOUS AMOUNT OF PAIN!

Last night when I went by to see her, she had been very ill before we got there. She had been vomiting and she did not look very well. She has been bleeding alot from her incisions, because she is very bruised! It is very bad! They say that the only way to get the bruising gone is for them to bleed the hematoma's out.

We will be going to see her this evening and will update when we return.



Alicia is doing well, Having fun with mommy!!!

Krisstina

Still Alive!

I just wanted to give everyone a quick update, I now how everyone has been so worried and wondering.

I don't want to mislead anyone, I am still in a horrible amount of pain. I am very very bruised, as the Doc puts it "it looks like I have been ran over by a bus". Today I had to go in for pain management and I got four doses of Morphine along with two bags of fluid. I stay very light headed and it is almost impossible for me to get out of bed. I have an enormous amount of blood coming from my incisions but Dr Richards said that is going to happen until the bruising goes away. He has me on two different types of Pain meds, Antibiotics, inflammatory, and anti anxiety meds. I have not been able to eat either. I am going in tomorrow for more pain management so it can help me heal.


I also found out that I am going to have to have some Chemo as soon as I heal. The Cancer was contained in my uterus but Dr Richards said he needs to make sure he got all of the cells. My family has been on me about coming home for the Chemo but I am still concerned for Alicia and do not know if that is the right thing to do. Alicia has a virus in her stool and they are still vry very runny and tummy pains now and I do not want her to have to be hospitalized at home if I can avoid it.


Erika is here and Alicia is in Heaven. Erika is a huge help as my mom and Denise were as well. I just do not know what is the right thing to do yet. I have to figure out some means of financial help if I stay through the Chemo as I have ran out of all finances. I just have a lot of thinking to do.

I will update more later. Please keep the prayers coming.

Monday, July 13, 2009

Michelle and Alicia are doing ok. Michelle is very sore.
Erika is here and they both are loving that! She is having fun with Alicia, while Michelle rests. Not much to update until Thursday, when we go back to the Oncologist.

Thank you for all the prayers!
Krisstina

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.