Big Day

Well tomorrow is another big day for us. We are scheduled for an 11:15 bone marrow biopsy. I must say I hate these biopsys. Livi is doing so well and has been so happy and these times under anesthesia always seeem to set her back. I dread it. I know that it is being done to hopefully get some more answers and to be sent to Johns Hopkins in order to get the recommendation of the big wig but as a mom I hate it. I used to cry over vaccination shots. Silly me. Little did I know the needles that woudl be in our future....big giant needles that go into my babies hip bone and leave holes on her back. If all goes well (and I am truly trusting that it will) we will be home tomorrow afternoon. My parents arrived tonight (Alivia couldn't have been more excited), James is taking off the day and Bill and Cynthia are meeting us up there. So the support for James, Alivia and I will be great. Just wish we didn't need it. Please pray for my baby tomorrow...that all goes quickly and smoothly, that she comes out of anesthesia easily and that the results are great and there is no need for intense chemo or a bone marrow transplant.

Over the last week I have made the mistake of going on line and looking up the side affects of bone marrow transplant. I am more convinced than ever that I don't want to do it. The possible negatives are overwhelming and either life threatening or life altering (ie. one consequence could be permenant skin disfiguring!) I definetly do not need to look up those things again. At least not until we have a decision as to what to do.

The next step in this process is to try Glevace. This is supposed to be a wonder drug but has never been used on someone as young as Alivia and has never been made in liquid form. So they have no idea what possible side affects could be. Also our doc is pretty sure that it won't be a cure but instead will just hold things at bay for a bit. We would still be looking for a cure. But at least that way it would be in check and less threatening day to day. After that or in conjuction with that we are getting all the info together to see the Big Wig at Hopkins. There is a whole lot of info he needs before he will even consider seeing her. So we are working with our doc/nurses to get it all sent out. As soon as they get the info they will process it and schedule an appointment for us. The hope is that somewhere along the line our doc missed something and will test for it, and find an easy solution. A very very long shot. But that is what our doc is hoping for. Then I guess we will have to make the decision on either intense chemo or transplant. YUCK. I am constantly praying that we won't be faced with either.

Enough for tonight. Tomorrow is a huge day. If all goes really really well we (Alivia and I) will be heading to Indiana on Thursday so see my brother Andrew. I am so excited. We haven't seen him since Easter. What a good way to celebrate the great results of tomorrow.

I wanted to post a comment that one of the nurses left for those of you who wrote thank you cards. Thanks for the comment Holly...

"I am one of the nurses fortunate enough to have the opportunity to care for Alivia and her family. I would like to thank Emily and all the family and friends that contributed to the tremendous and personalized bag of cards and gifts that was presented to me (I love the clips for my Emily:)! ). Such an outpouring of appreciation from people that do not know me and I will likely never meet truly touched my heart. Not to mention in the midst of caring for and worrying about her sweet little Livi, that Emily would have the time and thought to put something like this together. We were truly amazed and felt so touched and appreciated that she would think of us this way. People often say they do not know how I do my job everyday. It is families like this one that makes my job so completely worth doing each and every day. I feel truly blessed and honored to be able to touch and care for this family and do what I can for sweet Livi - even if the best part of the day is the sticker I always try and remember to give her and try to get one of those sweet little smiles in return.

My deepest thanks to all of you. Blessings to Alivia, Emily, James and all those that love and are praying for them.

Holly"

Thanks to Diana Bennett for the thank you notes and Colly Landis for the great meal (you found a meal we hadn't had yet...Good job!)