Merry Christmas

Alicia's Birthday Present from Mee Ma

On our way to Cincinnati

I am sitting here, and my mind is thinking of many ways to start this update and after 30 minutes i just decided to just type as I think.

I am once again sorry for not updating when we got back from Cincinnati. We are going back again soon. We leave on the 5th for our home away from home. Some times I think it would be better if we just stayed in Cincinnati for a while.

Alicia is still battling GVHD in her mouth. She is on steroids but they seem to be working. It comes and goes but one thing is for sure it is not stopping her eating. Her little mouth has so many sores but she wakes up hungry and when she is eating she is asking whats for her next meal LOL. I remember so many of my friends children had the steroid weight going through transplant but not Alicia. She was always so little and myself and all my friends at the RMH had to bribe her and cook twenty different things before she would eat.

She is also having issues with her Glucose level being very high. Doc Davies says its because of the Steroids. I just don't understand how the two is going to off set each other. She needs the steroids, but her sugar level keeps getting higher. (Another reason I wish we stayed closer to CCMC.)

Today I Turned 40 and as everyone at mine and Denise's party kept saying how old we were I just kept saying in my mind how grateful, I thanked God I was there today. OK like I said I am typing from my mind so forgive me. I found a picture with Alicia with Santa last year at the RMH and one I took last week here at home. The difference brought tears to my eyes and I am so grateful we are at home once again.

Look how Beautiful She is. I am so proud of her!!!!!!!!!!!!!!!!

I want to thank EVERYONE for all of the Birthday wishes on FB. I told Denise how she needed a page but she is still learning how to get on Yahoo LOL.

Tomorrow is Christmas at Erika's so I promise to take pictures of the boys and post then soon. I pinky swear as Alicia would put it.

Merry Christmas

p.s. and Happy New Year if I don't update til then. LOL (sorry)

LEAVING FOR CINCINNATI IN THE MORN

OK OK I AM SORRY AGAIN. I AM OVER DENISE'S AND ALL I HAVE HEARD IS HOW BAD I AM WITH UPDATING.

WE ARE SET TO LEAVE IN THE MORNING FOR CINCINNATI TO FOLLOW UP WITH DOC DAVIES. ALICIA STILL IS BATTLING GVHD IN HER MOUTH, IT LOOKS BETTER TODAY BUT A COUPLE OF DAYS AGO IT WAS NOT LOOKING TO GOOD. SHE IS STILL ON ALOT OF STEROIDS, BUT THE PLAN IS TO START WEENING, SO MY FINGERS ARE CROSSED. ALICIA IS EATING US OUT OF THE HOUSE. HER CHEEKS LOOKS LIKE CHIPMUNKS.

ALICIA WENT TO THE KIDNEY DOC THIS MORNING AND THE BIGGEST ISSUE WAS THE AMOUNT OF PROTEIN IN HER URINE. WE WILL FOLLOW UP IN JANUARY. DOC DAVIES IS NOT TO WORRIED ABOUT HER KIDNEYS.


I HAVE BEEN FEELING GOOD MY SELF. I HAVE AN APPOINTMENT WITH MY CANCER DOC AT THE END OF THIS MONTH. I WILL LET EVERYONE KNOW HOW IT GOES (PROMISE).

PLEASE REMEMBER A FRIEND OF OURS HER NAME IS CHARISSE, I MET HER AT CAMP THE FIRST YEAR WE WENT. SHE PASSED AWAY LAST WEEK FROM FA. PLEASE KEEP HER SON ISAAC AND HER HUSBAND ALAN IN YOURS PRAYERS. SHE IS ALREADY MISSED DEARLY.


MEE-MA

"Almost 7"

Once again I start off by apologizing for not keeping everyone up to date on how we are doing. I have logged on my computer a million times in the past month and the anxiety gets so bad I just turn it off. Sometimes I believe we can live in this imaginary fairy tale and as long as I block out reality then it will be easier to cope, but that is not true. Reality with FA is every day in our life and many many of our friends also.

It is so hard to believe that Alicia will be 7 years old in two days. I remember the times when 7 seemed so long away and the times when I never knew if it would even come. She is getting to be such a "BIG" "LITTLE" girl.

The "BIG" part I am not exaggerating either. Alicia is back on steroids now and she is eating non stop. They finally took her off of the tpn at night and put her back on fluids over night due to her sugar level being to high now that she is on the steroids. When we were in Cincinnati a few weeks ago Alicia had a horrible case of GVH and it was in her mouth. Her little mouth was so sore but the steroids cleared it up in a few days but it also bought us another trip back to Cincinnati in a few weeks. We will be going back on the 9th of December to see Doc Davies. Hopefully she will start weening the steroids again then. Alicia also had an immune study done and the results were not what we wanted to hear. Usually a year post transplant your immune system should be working at 100% but with all of the complications Alicia had she is at best at 50% and she is going on two years post transplant so Doc Davies said NO restrictions will be lifted off of her til the earliest will be this summer. I just pray we get to make camp this year!!!!!!!!!!!!!!!!!!

I am feeling alot better. I have been seeing the doctor every week and the Cancer doc once a month, but I do feel alot better. I do have a few bad days though and I am learning how to just work through them myself.

Please everyone keep Dan and Nikki Mccarthy in your prayers. I read an update and I can just feel the pain my friend is feeling. We went through many difficult times together during transplant and they are very dear to me. Also Delia could be facing another transplant, she is a young lady I met at camp with FA so please keep her in your prayers.

HAPPY BIRTHDAY BABY GIRL

MEE-MA

In Hospital again

Just a quick update to let everyone know Alicia has been in the hospital since Monday. Her BP is staying very high and they have found issues with her kidneys. The blood is not flowing through an artery in her right kidney. We will have a MRI done in Cincinnati next week.

Please keep some very close friends to me in your prayers, they have lost their child to FA and they need comfort and peace. Anthony Negrin and Sam Mcarthey both lost their fight with FA. They went through transplant the same time as Alicia and are very dear to me!!!!

I will update on Alicia when I find out more info.

Mee-Ma

long waited update

I have had so many calls and text's and letters and now I see e-mails also checking on us, and I am sorry for the time it has taken to update. The truth is I have been avoiding the computer. It seems like every time I turned it on another one of my friends have lost their child and I just didn't want to face that.


Anthony, some one We were very close with, passed away and It has had me very depressed and I am sorry if anyone was left worrying.


Alicia is doing great, as you see from the picture she is sooooo chubby. (she has on her brothers shirt). We will be in Cincinnati on the 26th, 27th and 28th to see Dr Davies and ENT. She is so excited to see everyone.

As for myself I have been in and out of the Hospital Three times since my last update. I built up an infection in the fluid in my abdomen and since have had to have a Picc line put in and give myself my own Anti Biotics. I am still very weak and sometimes scare myself!!!! I have lost 100 pounds since June from being so Ill. I hope to be better soon.


Alicia has spent alot of time with me. The boys have been fighting fevers for two weeks and That is one thing we are hoping to avoid with Alicia. She helps me so much she is getting to be such a big girl.


Well once again thank you for all the prayers and care from everyone.

Michelle