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 10, 2006

How to start (again)?

Notice the word again? I can't seem to do much right today. This is the second time I am typing this blog entry. I erased the first one. I put out the bills (which I was proud of myself for getting all together) with no stamps. I scratched Livi's face in the middle of the night putting her back in bed after a bottle. I took 2 left shoes to Hershey for Alivia (not helpful!) and I didn't put enough numbing cream on her port so it hurt to get it accessed (poor poor Livi!). Of course she forgave me and loves me still (thanks girlie) and the shoe fiasco gave everyone a good laugh.

There was a lot of news today and it's a bit hard to know how to feel. I am definetly more confused than before. The options are either super cool and exciting or super scary and sad. So I'm going to lay it all out and we'll see how it goes.

Her WBC's were 19.3 (down .2 from Monday...whooopie)
Her Red's were up a bit and her plateletes were up (probably from Monday's transfusion)

Second...her liver is smaller! I thought that her tummy looked a little smaller and the spleen didn't feel as large and the doc said he was even more impressed with the liver. Good news

Third...as I mentioned yesterday he said the bone marrow looked pretty much the same except the blast % is a bit lower. He still wants to go over it with the same pathologist that went over it last time. Usually they count 100 cells to do a rough estimate but with her they count about 1000! Huge effort and time commitment. He is going to do that before our next visit.

Fourth...the tests from Hopkins all came back negative. They ran two extremely specialized tests that are used to diagnos types of ALL that have elevated eosinophils. So that all but rules out ALL. Officially our doc is calling it a myeloproliferative disorder/ chronic eosinophilic leukemia. Not that he wasn't calling it that before but now he's even more sure.

So now what? Well he gave us the best, worst and a long shot.

Worst...If her WBC's go up again and she needs more transufions then they will want to treat for AML. (scary) We will then be living in the hospital for 7 months. He said that the treatment could be life threatening. Not so much the chemo but from infections. With this treatment they take all of her counts the whole way to zero and it takes a long time for the marrow to rebound in which time it is very easy to get infections. Not sure what we would do in this case. Do we start a treatment for something that she doesn't have or what? He said he might try Vincristine (which is used to treat ALL and won't help anything if its AML) or Glevace (which she doesn't have the genetic marker for)

Best...If her WBC's continue to come down or stay the same and her other numbers continue to get better they will consider it "a miracle" and we'll "thank God" (or doc's words!) Now keep in mind our doctor always says things like "keep our fingers crossed" and "we've been lucky so far" I was pretty shocked that he said the word God. We would still continue to "watch her like a hawk" but I can handle just watching her.

Long Shot...this is some sort of infection that went undetected or that they don't have a test for or didn't test for and it is just getting better. This is a very long shot because he thinks its gone on too long for that.

Regardless it was a confusing and yet not too bad day. Livi did really well (as always) even with the little bit of hurt from the port access she was a smiley girl the rest of the time (except when the doc came into the room cause she's scared of him). It was good having my parents and Cynthia along.

Pray for the best case scenario!!!!! (I know you're all thinking...obviously!) This next week will be a huge one. We will have our regularly scheduled Thursday appointment. The results from that visit will decide a lot. Pray pray pray...that is all we'll be doing!

Thanks to...
Mom, Dad and Cynthia for coming with and being distractions from the surroundings. Livi loves having all of you around.

Thank you notes to the nurses from...
Mom and Deb Barteck (Thanks so much for the money to help buy the nurses presents!! that was the sweetest!)

Here is the newest count
Janiece- 6
Holly- 10
Lois- 7
Chris- 8
Cindy- 6
Carol- 7
Joanne- 7
Maritza- 6
Denise- 7

I will be at church Sunday and my parents will be at theirs so if you want to just give us the thank you notes then that will be great.


Blogger Briana Almengor said...

Thanks so much for keeping us so well informed. It helps us carry you and your family on our hearts in a more profound, meaningful way.

I am praying that the miracle you will experience tonight is that of resting in the goodness of God so much that your whole body, mind and spirit will truly be at peace.

Love you much, dear friend.

7:00 PM  
Anonymous Anonymous said...

I am PRAYING, PRAYING, PRAYING! Even though their is "bad news", you still have GREAT news that you can focus on too. I am sure livi forgives you, because everyone makes mistakes sometimes! I pray you have a great time with your family.

Sending prayers your way,

9:12 PM  
Blogger All the Millens said...

It has been exciting to hear how the numbers have been changing with her WBCs! God oversees His microscopic creation.

When tempted to worry in the confusion, look back over His faithfulness and attention to you over the past 5 months. "When I thought "My foot slips,' Your steadfast love, O Lord, held me up." Psalm 94:18

Praying for you, Katherine

9:58 PM  
Anonymous Ang said...

Thanks for writing (even when you've had a big day.)
I will be praying this coming week for God to powerfully work in Livi's little body. I am thankful that He is the One who created her & he knows her in detail. I'm also praying for wisdom for you & James in any decisions that you may need to make next week & for strength as it is difficult to walk through the unknown. I love you so much~

2 Samuel 22:2
"The Lord is my rock & my fortress & my deliverer."

10:08 PM  
Blogger The Garners said...

We WILL be praying! I can't believe you find time to blog (not once...but, unfortunately twice today) in the midst of all that you are going through. I'm so thankful that you do though. It helps us to know what is going on with you guys and how we can continue to lift you up and support you. Love and hugs to all of you! (an extra hug from Jude to Livi!!!)


12:53 AM  
Anonymous jamie said...

Good morning Emily-
We will be praying for God to conitnue to heal ALivia's body. You and James and your families have been a witness to the doctor and he must see your faith in God through this time! That is exciting for him to say thank God. i will continue to pray for you and James to continue to walk by faith (not by sight) as you wait for next thursday appointment. that is exciting that her liver is smaller too!
have a wonderful day!
love you and praying-jamie

7:52 AM  

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