Who's the cutest girl around?

I am a mom of a cutie pie (very biased). And I wanted to share my experiences with others (including my cuties grandparents, great-grandparents, numerous uncles and other relatives). I love being a mom and can't imagine doing anything else.

Monday, September 11, 2006

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!)

9 Comments:

Anonymous Anonymous said...

I am so praying that all goes well tomorrow. It is awesome that you will have everyone there for support. I hope that you will be on your way to Indiana Thursday. Perhaps Marmie and I could even come if it wouldn't be to overwhelming.

Love you guys, Grande Aunt Lisa

10:39 PM  
Anonymous Anonymous said...

It feels so good to be here physcially with James, Emily, Livi, and now Erin W. A big day tomorrow, and we are all praying for a good draw, quick recovery, and a little girl who doesn't have a hard time with any of it. So glad to be here,,,wish there wasn't a bone marrow,,,but will let God do something awesome in the results. Jesus, you are only hope...heard a good new song about that today. Very timely. Thank you all for praying...you are our feet in this bitter walk. Gretchen

10:41 PM  
Anonymous Anonymous said...

Hi, Emily - I am continuing to pray for you and your family every day. I had a chance to talk with your dad a few days ago, and he just instantly started to catch me up on your news. I got the "pre-blog" report that day, but it felt good to hear in person how you are all doing. I really hope everything is good for youe trip to Indiana. I know it will be so special for all of you to have time together with Andrew....You have an amazing family - but you already know that....I pray for an easy day for everyone tomorrow, wisdom for the doctors, and God's peace over all. I pray for God's healing presence.
Cathy S.

11:01 PM  
Anonymous Anonymous said...

To the entire Haughery/Allen family and circle of friends, and especially Alivia.........
I finally got a chance last evening to sit down and go through the mountain of thank you cards in the gift bag you gave me last Thursday. I was truly overwhelmed by the cards and had tears in my eyes before I was halfway through.
In my 25+ years as a pediatric oncology nurse, I have never experienced such an outpouring of gratitude and I am humbled and awed by all of it.
I just want to thank ALL of you for your gift[s].I am the one who has been truly blessed and privileged to have met all of you and Alivia, and all the children and families over the years. My life is richer for all of these experiences and I have a much deeper appreciation for the "little things" as a result.
We are all in this together, and we will get Alivia through this together. It warms my heart to see how loved she is by her parents,grandparents,uncles,cousins, extended family, and SO many friends.
Again, thank you does not seem adequate for what you all did. I am very, very grateful!
Sincerely,
Denise Gibson
[one of Alivia's nurses]

8:18 AM  
Anonymous Anonymous said...

Hi James, Emily and Livi,
We are praying everything goes very well today, and that Livi recovers quickly. Emily, have a wonderful time visiting in Indiana.
We continually pray for renewed strength each and every day. Your faith is amazing!!!
Love you all, Keith and Tracy

11:37 AM  
Anonymous jamie said...

emily-
you are on my mind and i am praying for the visit today and for alivia to recovery quickly and for clear results. i am praying for you and james and your parents and his parents as you wait for the results. love you-jamie

12:52 PM  
Anonymous Anonymous said...

I will be praying for you guys. I know it must be hard to see your baby go through all that, just remeber that God is there for you. I am glad you have all your family their for support. I am still praying for that miracle.

love you guys,
moriah

2:16 PM  
Anonymous Anonymous said...

Praying for you all today!
Love, Les

3:07 PM  
Anonymous Ang said...

Hey Em-
It's 3:00 & I'm thinking of you guys--hoping that you are heading home right now or soon!
I'm heading out to mow the yard, so I will have 2 hrs. of uninterupted time alone to lift you guys up in prayer!! See you tomorrow!
-Ang

3:10 PM  

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