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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, June 13, 2009

Thanks for the prayers.

I am sorry I have been able to update myself, the past week has been very hard on me and all a big blur. I want to stress how very Thankful I am to Tina for keeping everyone updated. I am truly blessed to have a friend like her. She has went over and beyond for me in more than many ways. I Love you Tina and thank you for EVERYTHING.

I also want to thank Denise for dropping everything to be here for us. I love and owe you so much Denise. You are the very very best friend in my life and I do not know what I would do with out you.


I also want to thank my mom for all of her support!!!!!!!!!!!! I would have nothing if it weren't for you mom. Thank you sooooo much. You have taken so much off of my mind and I love you very much!!!!!





Like I said this whole week has been a big blur and a lot of confusion. Today I am not in as much pain as I have been so I feel it is getting better. I don't know where to start so I will start at the beginning.





I woke up from my nap last Friday in an enormous amount of pain. I usually can tolerate pain so I tried to wait it out but it only got worse so I had Alicia go get a friend of mine her at the RMH and it was down hill from there. Another friend got me to the Emergency room and I could barely even sit up. When I finally got back they started an IV and gave me Morphine, which I must say was AWESOME!!!!!!!!!!!!!!!!!!!!!!! They then did a CT scan and it showed a very large cyst on my right ovary so they wanted to do an ultra sound also. The cyst took over two screens on the ultra sound to see it all, it was HUGE!!!!!!!!!!!!!!!!!!!! They admitted me and the next morning an OBGYN and Surgeon came in and told me it needed to be removed. By then I was on a pain pump so every six minutes i could push a button and was getting a dose of dilota (sp??) so I was in no pain at all and could not really remember much of what was going on. I did know that my sister was on the way and that Alicia had been admitted to childrens by the order of Dr Davies. I don't remember much from that point, I do remember my friends from the RMH being there (Kim and Amy and Shawn) which they have told me that I was saying some crazy things. Mostly about caring for Alicia. They said kept repeating how she likes her tator tots and I was worried that she wouldn't get them.



I also do not remember much after surgery, Denise said she had talked to me in the recovery room which I do not remember at all and I know my friends were there the whole time and in the room waiting when I got back. They took turns checking on Alicia which I thank them so much for. They helped me sooooo much!!!!!!!!!!!!!!!!!! I was told that the cyst was 27 inches long by 12 inches wide and they had to drain 4 liters of fluid off of it to even be able to remove it. I had 22 staples up and down my tummy. I was still in a lot of pain and on the pump til the following day. Denise arrived around ten that night and her and Tina, Keith, Jacy and Cameron stopped at the hospital where I was and I do remember that. I was so at ease then because I knew Alicia would not be alone any more. The next day they took me off the Pain pump and started me on oral pain meds, they got me out of bed and Denise helped me shower. At that point I knew I had to get to Alicia so I insisted on them releasing me the next day. Denise stayed and was a HUGE help the whole week!!!!!!!!!!!!!! Alicia kept telling everyone my owie was not in my butt any more it was on my tummy.





Now the hard part........................... when they removed the cyst they said I also had a something else hanging from my cervix which they removed along with a biopsy they took from my cervix and it was sent to the pathology lab. Friday when I went to get the staples removed which they only removed half because some were oozing and I am very very bruised, any way the lab reports showed that what they removed and the biopsy both showed cancer. They said it was vital that I have a complete hysterectomy done asap. I was at a loss of words and told them I was not going to do anything or make any decisions until I talked to Dr Davies. My first and utmost concern is Alicia. I can not even bare of the thought of her going through anything without me. I know and have been told a million times in the past few days that if I do not take care of my self that I will not be here for her anyway but that does not matter to me. I know that I will be in the hospital for at least a week and Dr Davies told me Friday that she wants Alica to be admitted to Childrens and under her care while I go through this. Alicia has not ever been alone even for one night her hole entire life. I know they will take care of her but I can not even stand the thought of it. Erika will be here I know it so I decided to wait until she can get here to be with Alicia. She will also be here for a week after. My family all want me to come home but it is not an option.


I will have more answers after my appointment on Monday. I have written down a list of questins and I will let everyone know more than. I ask for many prayers please. This all is so very hard. I thought we were just coming here for a few weeks and we would go home. I was to start my job back this week. I came with nothing and I needed badly to return to work. My family has been a huge support and I thank my mom and Denise so much.

PLEASE PRAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

9 comments:

Dianne said...

Thinking of you and praying for you!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Love, Dianne, John and Michelle

Charisse said...

Dearest Michelle,
I just wrote a huge section in your last post. I want to continue to encourage you that while your storm is raging, Jesus is there and He will calm the storm even though we cannot see how He can.
I think it is good that Erika will be able to be with Alicia during your period of time when you have the operation and recover. I know that you have such concern for ALicia. I stand on the fact that you are such a loving and self-sacrificing lady and I know that Jesus would be proud of you, loves you and cares for you. He is there with you in the storm and He will calm it even though this storm will be tough and you won't know how long it will last.
I am sorry that it is cervical cancer and will be praying against it spreading. I will be praying about everything.
Lots of love,
Charisse

Anonymous said...

So happy to see you updating yourself, Michelle! My heart just shattered when I heard the news. I wrote in to PrayerBears last night to ask for prayers. The Lord will be with you and will help you face whatever lies ahead!
Know that your family is always in my thoughts and prayers!
Psalms 18:28-30 For thou wilt light my candle: the LORD my God will enlighten my darkness. For by thee I have run through a troop; and by my God have I leaped over a wall. As for God, his way is perfect: the word of the LORD is tried: he is a buckler to all those that trust in him.
Prayer Bears
My email address

Unknown said...

Michelle,

I had this surgery done a year and a half ago. Feel free to email or call me if you want to talk about it.

I'm thinking about you,
love,
rachel

Teresa said...

Wow. I knew it was big, but I didn't realize it was THAT big. It was good to hear it in your own words, and so heartbreaking as well. I hope you find out more details that things are going to be treatable and that you'll be able to be there for Alicia. I feel your pain about wanting to be there for Alicia. I would feel the same way. What an incredible grandma you are. It's special that Erika is able to come and help. I'm sure it's been SUCH a struggle for her to not have you or Alicia around.

Please know you are all in our prayers.

Love,
Teresa

Mary Ann Gormley said...

Dear Michelle,

I'm so glad to hear that Erika will be coming to stay with Alicia while you have your operation and for a week after that also.

You've asked for prayers and I know that everyone who knows about you will be praying and also asking others to put you and Alicia on their prayer list.

I'm thinking of you and praying...and hope that the appointment with the doctor brings information on the "good news" side.

Staying in Cincinnati is such a good idea...you and Alicia will get good care and you won't have to worry about her. A few days after your surgery, I'm hopeful that you'll be able to stay with her in her room. Dr. Davies sounds wonderful and you know that she and Erika will take good care of that precious little Alicia.

Please rest, have faith and hope, and trust that the God who has been with you throughout your life and especially during Alicia's transplant and since then, will be there to give you strength, courage, and healing.

Love, Mary Ann

Tracy said...

Keeping you in my prayers. I pray that the cancer didn't spread and that things will be alright. Sending you lots and lots of hugs. I am sure Miss Alica will do just fine. I know what you mean about leaving them though.It is hard.

www.caringbridge.org/visit/margaretreed1

Anonymous said...

Stopping by to let you know I'm still here praying. Sharing a verse of a hymn today.
My hope is built on nothing less
Than Jesus' blood and righteousness;
I dare not trust the sweetest frame,
But wholly lean on Jesus' name.
On Christ, the solid Rock, I stand;
All other ground is sinking sand. The Lutheran Hymnal #370, verse 1
Prayer Bears
My email address

Momma Bear said...

Oh Michelle! I'm so sorry for all that is happening! Know you are being prayed for and that we love you all very much. Our hearts are with you guys! Hang in there and know that God is with you!

Blessings and Bear Hugs,