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.

Thursday, August 31, 2006

Fiji, anyone?

Fiji is warm and sunny and the beaches look amazing. There are no doctors to say Alivia is sick, or take her blood, or schedule another bone marrow biopsy. And no one there will offer meds that might kill her or bone marrow transplant. Just fruity cocktails and suntan lotion. So I'm moving to Fiji. Anyone want to come along?

Livi's counts all stayed pretty much the same. Her plateletes were up a bit but otherwise pretty much stable. I get excited about stable but it turns out stable isn't really that great either. The levels still aren't normal. Our doc heard from Arcici (Hopkins bigwig) and he recommended another bone marrow biopsy (on September 12th). From that biopsy they will run all the citogenetics (AGAIN) and test for AML once again. Then they would like to either start treating for AML if she has it or go straight to bone marrow transplant. (read with tears in your eyes). I can't even believe I'm having conversations like this calmly. Inside I feel like I should be shaking the doc and screaming "this is my baby your talking about!! how can you calmly go through options that might kill her!?!" I guess the rational is that at some point her bone marrow may stop working all together and it would be better to transplant before that happens. Next week when they take her blood they will take a bit extra so they can get her into the registry to start looking for a match for her. He said that doesn't mean we will definetly do the transplant but matches can be hard to find so its better to start looking now. I may be asking a big favor of all of you soon. If she needs a transplant and none of her family matches we will have to search for a match. None of this is set in stone yet but it feels likes its creeping up on us. I told the doc that we wanted to at least try Glevace first and he said that would be fine and they would start trying to get it into liquid form. Also they might give some steriods and maybe vincristine to try to do everything possible before transplant.

I know that God is in control and that I'm not supposed to trust in what the doctors are say but instead trust that God is in control but it sure is hard when they are saying words like "fatal", "death", "highest levels of chemo", "kill the bone marrow".

Here are the very specific prayer requests...
...bone marrow biopsy that shows all is well
...counts that are NORMAL not just stable
...some new test that shows nothing is wrong
...healing.


Thanks to
Jill Wilson and Sue Minich for thank you notes

This is my last plea for thank you notes. Folks if we can spend one day a week at the hospital you can spend 5 min writing a thank you note. Please do this for me, James and Alivia. If mailed tomorrow I will get them Monday. I am fully expecting to see a ton of notes in my mail Monday or be handed a bunch on Sunday. Our address (one last time) 2768 Lititz Pike, lancaster, pa 17601. I'm not sure you realize how much this means to me, to everyone who has done it already thanks times about a million.

Most recent tally
Janiece- 39
Holly- 39
Lois- 40
Chris-39
Cindy- 43
Carol- 41
Joanne- 40
Maritza-41
Denise-43

14 Comments:

Anonymous Anonymous said...

Ok, not even close to what we wanted to hear! While waiting for your call, which you graciously let Dad tell me the news, the only refrain going through my mind was "Jesus my only hope". I am not trying to be superspiritual...but it is true now more than ever. Oh, how we wish/long to be there with you all. We love you...we love you.... we are here for you (perhaps we should be there for you!!).

3:52 PM  
Anonymous Anonymous said...

Ok, not even close to what we wanted to hear! While waiting for your call, which you graciously let Dad tell me the news, the only refrain going through my mind was "Jesus my only hope". I am not trying to be superspiritual...but it is true now more than ever. Oh, how we wish/long to be there with you all. We love you...we love you.... we are here for you (perhaps we should be there for you!!).

3:52 PM  
Anonymous Anonymous said...

Ok, not even close to what we wanted to hear! While waiting for your call, which you graciously let Dad tell me the news, the only refrain going through my mind was "Jesus my only hope". I am not trying to be superspiritual...but it is true now more than ever. Oh, how we wish/long to be there with you all. We love you...we love you.... we are here for you (perhaps we should be there for you!!).

3:52 PM  
Anonymous Anonymous said...

Yes, I agree. Jesus is our hope. It is good to recount this truth. To hear the words that we heard today at the hospital......it is so disorienting. You feel like every sound becomes "tin-ney". You start feeling a bit numb. Life becomes slow motion. You notice everyone walking past you.....but you feel like there is a wall between you and reality. You don't want to believe that those words are being spoken to you about your child's child. It's like "wait! You are talking about my grand-daughter!! Don't say that!!!"
I have to grab my soul and say......"Soul, what is really REAL?" I believe that Jesus is with us. He will never leave us or forsake us. He made Alivia. He is good. He is powerful and loving. He will help us. We can trust Him. I choose to trust Him.
Please pray for us. We need His help. These are dark waters.
Cynthia

4:33 PM  
Anonymous Anonymous said...

It is just so difficult to believe that your beautiful, so healthy looking baby, is really ill. She just looks so very healthy. I'm so sorry. I will pray and then pray some more.
Gretchen and Cynthia...as a new grandmother myself, my heart aches for you too. You are in my thoughts and prayers also.
Hold on,
Maryann Plesnicher

5:04 PM  
Blogger The Garners said...

Fiji is sounding pretty darn good. We love you and I would personally be the first in line to have my bone marrow tested for your little girl! Say the word! We will pray with ferver for healing...total and complete. Cynthia is right. God made Alivia. He is with you and He knows everything (and we don't).

Hugs,
Julie

5:43 PM  
Anonymous Anonymous said...

I am praying for you guys constantly. Remember God is there for you when you need him. I wish I could give you a hug right now, but since I can't, you will have to give yourself a hug for me. And I have to tell you that your little girl is so cute and precious, which you already know of course, but I just had to say that. I am thinking and praying for you guys.

love ya,
moriah

P.S. the pics. on your myspace are so cute

7:38 PM  
Anonymous tina said...

wow, what a difficult day for you all. will pray that you will know a degree of peace that is inexplainable. xoxo

8:12 PM  
Anonymous Anonymous said...

I'm continuing to pray. I wish I could think of something more profound to write here.... I hope you feel the love that surrounds you at this scary time. God bless you.
Cathy S.

9:27 PM  
Blogger Audrey said...

praying for you

9:40 PM  
Anonymous Anonymous said...

Emily-
More thank you cards are on the way from CA. We are praying for you and Alivia and the entire Allen and Haughery clan.Central Peninsula Church in Foster City, CA still has you guys on their prayer chain.

Love you guys
Uncle Mike

4:46 PM  
Anonymous Anonymous said...

You are loved and lifted up again today. I am putting a few more thank-you notes in the mail tomorrow (Sat). Hopefully they will be there by Monday. God Bless
Diana B.

10:20 PM  
Anonymous Anonymous said...

Hi Emily,
A large envelope of thank you's were just mailed out today (Friday) from my 4th grade class in Indiana- I'm hoping that they get to you in time!!! You don't know me, but I've been thinking about and praying for you and your family every day. You are an amazing Mommy!!!
Julie D.

11:30 PM  
Anonymous Anonymous said...

Up before 6 with Alivia on my mind. I am sticking all the notes in a priority mail envelope today and taking them to the post office (I have one for each nurse you have listed). The notes probably won't get there until Tuesday or Wednesday as we live in northern Alabama and Monday is Labor Day (no mail delivery).

So sorry these thank yous are taking so long to reach you. I probably should've tried to bite off something simple like mailing just one from my home mail box, but I want to get some stickers in the mail for Livi as well and it has been beyond out of control here. Our lives are about a 10-ring circus with three kids, two dogs, and no local family at all here in town. Oh my, the alarm clock is going off...forgot to turn that off last night (this is the time I usually get up).

Take care and hang in there....

Caroline

7:07 AM  

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