Alicia's Journey with FA: March 2008 entries

Saturday, March 29, 2008 3:01 PM CDT

Hello All,

Five more days and we are off to Disney World. I do not know who is more excited, me or Alicia? We have a song that we sing that counts down the days until we leave, she wakes up every morning and before she even gets out of bed she will ask me how many days so she can sing the song, She is soooooo cute shen she sings it.

She gets her cbc done on Monday, I am very worried and excited to see what her counts have done in the last month. She is bruising so fast. She even got a Bruise the other day from just putting her seat belt on. And her legs are getting so tired lately, she most definatly will be in a stroller at Disney.

Little Anshon is getting so big, he is walking every where. Yesterday when I had went to the day care to pick up Alicia he yelled at me. It was so cute. He had seen me putting Alicia's coat on and not his, he is so smart. H knew he was not going with me ( his daddy was only minutes behind me to get him ) but he did not know that and was yelling at me. Of course it was only baby yells since he is not saying anything but ma ma and da da (mee-ma is next).

I promise to take alot of pictures at Disney and update about her counts before we leave. I hope all is well with everyone.

Mee-Ma Michelle

Saturday, March 15, 2008 1:13 PM CDT

I got the call from Robin today, and she answered many questions that I have had for a very long time. She said that Alicia will most likely be going to transplant very soon, depending on the rate her counts drop but also has seen a trend with alicia and her counts are most likely going to keep dropping. Dr Davies really wants to wait for Erika to have the baby, but could not promise it could wait. Alicia is haveing another cbc in two weeks which will tell us more about how soon her transplant will be.

this is a emotional roller and I told Robin that. I told her I needed some straight answers so I can get my self emotionally prepared so I can be stron g for Alicia, one of my worries is being away from my family during the holidays, and she told me it would be a good idea to start preparing myself for that. She also was not comfortable with saying Alica would be able to wait long enough for her make a wish in July, she said to not set a date any earlier than July but be open for the possibilty that we might have to move up the date. I told her there was no way we could move up the date because we could not go now with Erika due in a month and a half. She would not be able to walk at disney for five days, she is huge and tires very easily. Erika also has to have a c-section and would not be able to walk until she recovers.

I am planning on going to Erikas today to let her know every thing and the bad part about that is it is little anshons first birthday today. I have weighed the options of waiting until tomorrow but I know Erika would be upset with me if I did not tell her.

I stressed to Robin yesterday about my big concern about waiting til it to late for transplant and asked her what are we waiting for, and of course the answer was because of the risk of transplant and surviving. My nest question was if there was any iota of a chance that Alicia would not need a transplant and she said no. I then asked if there were better odds of survival if we put it off until her counts got very low or if we did it tomorrow, and she said no to that also. So my biggest problem is waiting because she is very strong now and would have more of a chance to fight than if she was sick, and with her marrow being ok now I feel like it would be best to get her new cells now!!!!!!

I am balling like a baby now so I will update later when I pull my self together.

Alicia's very best friend Mee-Ma

Wednesday, March 12, 2008 0:01 AM CDT

Everything went well in Cincinnati last week, Alica did real well (during her biopsy) she was still her little normal bad self during the trip!!! But that is my fault!!! We got there Wednesday and had an appointment with Dr. Davies on thursday. She had a Cbc done on thursday and her count's all dropped which has me very worried. Her Platelets are now down to 17,000 from 21,000 three months ago when we were there last. Her ANC also did a big drop to 770 from 2150 which has me sooooo worried. Her Wbc, Rbc and Hbg also all dropped below normal. Her counts have always been a roller coaster but some go up and some go down but they have never all dropped like this time. Her Fish Study results were all in normal range which is good (I think) we are still waiting on the other results from her Marrow though.

The waiting game is the hardest, Just pray they will come back all ok,if not we will probably be heading to transplant. I am hoping for reslts soon and will update when I get them.

More Happy news, my grandson Anshon starting walking every where, he is getting so big!!! He turns 1 on Saturday. Erika is doing fine just getting HUGE!!!!

I hope all is well with every one. Please keep Alicia in your prayers.

Mee-Ma