"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

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

HELLO EVERYONE AND I AM SO SORRY ABOUT NOT UPDATING SOONER. ALICIA AND I ARE FINALLY DOING A LITTLE BETTER. I AM STILL HAVE TERRIBLE PAINS IN MY SIDE BUT THE DRAIN LINE THAT WAS INSERTED IN MY SIDE TO DRAIN ANY FLUID BUILD UP WAS REMOVED LAST THURSDAY. I AM HOPING I AM NOT BUILDING UP FLUID AGAIN AND WE WOULD HAVE TO START ALL OVER, I HAVE A CT SCAN ON MONDAY TO CONFIRM THAT. I ALSO SEEN THE CANCER DOCTOR HERE I KANSAS AND I LIKE HIM A LOT. HE IS COMMUNICATING WELL WITH DR RICHARDS IN CINCINNATI. I HAVE ANTHER APPT WITH HIM AFTER THE CT. THEN ITS ON TO THE LIVER AND KIDNEY SPECIALIST FROM THERE.


ALICIA HAS A HORRIBLE COUGH RIGHT NOW. SHE SEEN HER DOC HERE YESTERDAY AND THEY TESTED HER FOR THE SWINE FLU AND OTHER THINGS BUT ALL TESTS WERE NEGATIVE!!!!!!!!!!!!!! WE HAVE BEEN SPENDING A LOT MORE TIME TOGETHER NOW THAT I AM FEELING A LITTLE BETTER. SHE IS RIGHT HERE WITH ME NOW, BOY I MISSED HER SO MUCH WHEN ALL OF THIS WAS HAPPENING!!!!!!!!!!!!


WE ALSO MOVED IN THE TIME I HAVE NOT UPDATED. MY LEASE WAS UP IN THE APARTMENT AND I FOUND SOMETHING A LITTLE CHEAPER AND WITH ME NOT WORKING I WILL TAKE ANYTHING CHEAPER.


ONCE AGAIN I AM SO SORRY FOR NOT UPDATING. I REALIZE THERE ARE MANY PEOPLE WHO CARE AND WORRY ABOUT US AND I AM SORRY. I WANT TO SAY A SPECIAL THANKS TO DIANE FOR THE CARD YOU SENT.... IT MADE MY DAY!!!!!!!!!!!!

MICHELLE

P.S.

I WANT TO SAY A VERY SPECIAL THANKS TO DENISE FOR BEING THERE FOR US EVEN THOUGH SHE IS SICK HERSELF. SHE IS 100% THE BEST!!!!!! ALSO THANKS DENISE FOR KEEPING EVERYONE UPDATED WHEN YOU KNEW I COULDN'T

MICHELLE