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, July 20, 2006

I hate Doctor days

I think well just be skipping to doctors from now on (not really but I wish we could). We are going along fine and dandy and then we got to our weekly visit and her counts are up again (60 this time...grrr). So the doctor is starting to think of using Glevace again (even though she doesn't have the genetic marker for it) just to try. His thought is that maybe the clone is becoming resistant to the Hydroxerua. Great. So maybe Glevace or maybe just start treating ALL even though she doesn't officially have it. (by the way the survival rate for ALL is between 75 and 80%) But he has never treated a child for a leukemia they don't have before and really would rather not start now. The other option is just to go straight to bone marrow transplant (NOOOOOOOOOOOOOOOOOO!!). Next week we will have another bone marrow biopsy and see what the blast count is. If it is over 20 or 25% then we have ALL otherwise we dont'. Don't know what is a good thing at this point. Is it better to just get ALL and get started with the curing or better to stay where we are and not really know if there is a cure. Either way seems horrible to me. Waiting and not knowing is really hard and on the flip side knowing it's ALL would be really hard cause then she will get really sick for a while from the chemo.

I am struggling with seeing the good in this situation and being thankful. I want to be full of faith and trusting God but those are very tall orders when things seems so out of control. I know God isn't suprised by this and that he planned every second of this its just so hard to understand why. I am constantly crying out for the ability to trust and bigger faith. Please pray for me.

My parents left to head home from the hospital. I am daily amazed by their sacrifice for us. They have put so many things aside to be with us. They cancelled their vacation, drive 3 hours here and 3 hours back almost every week, they clean my house, take care of Alivia and just bless us in so many ways. They would say that they are lucky to get to be with her and to be able to help but I think it is so much more than that. They are true servant and I love them more than I can express. I'm so glad we got to spend my mom's birthday together. We had a really good day.

Please pray...
...wisdom for our doctor (what to do next)
...peace, faith, trust for me
...continued happy days for Alivia (she definetly doesn't feel sick)
...for the white cells to go down (not be resistant to the meds)

Thanks to Jill Piper for the card. It was so kind.


Anonymous Anonymous said...

Hey Emily,

It's all been said before, "We're hearing your agony", "We're constantly praying", "We're standing with you on this". Just keep forging ahead. Know that you are loved from many directions. Let me know if there's anything I can do to give ya a lift. Video #3 is on it's way. Maybe when Marmie gets her tainted car back we'll have to test it out... to Lancaster.

Love, Lisa

4:10 PM  
Anonymous Anonymous said...

Hi, Emily -

I read you blog and I feel your frustration for this seemingly crazy situation. Actually, I just sent you a book via Amazon, so it should arrive in a few days. I hope it will help in some way. I cry out with you in the midst of this chaos.

I think about your parents and your wonder at their devotion and love for all of you. However, all you need to do is imagine Alivia all grown up with a sick baby, and I'll bet you already know in your heart that you would give up a hundred vacations to be there to help her and her family. Look at what you do right now for her. It is all pretty amazing.

At the risk of sounding repetitious, I want you to know I continue to pray for all of you.

Cathy S.

4:45 PM  
Anonymous Anonymous said...

I was thinking of you all and praying for you today. So sorry that things didn't go well. My heart is heavy for you. I am always struck by your ability to admit that this is tough and that you are struggling. I would be too. There is a song...can't remember who it is by and it is not necessarily Christian, but part of the lyrics say, "When you lose your faith, you can have mine. I am right behind, we walk the same line." To me, it speaks of bearing eachother's burdens. You lack faith, I will stand in faith for you and so will the hundreds of others praying for you. "We walk the same line"...we are all human we are all weak, we understand that we need eachother right now. I hope it encourages you to know that you and your little girl and in the prayers of hundreds of people and most importantly our Saviour is interceding for you right now!
We love you!
Les and the fam

7:23 PM  
Anonymous Anonymous said...

You are right, it is no sacrifice, the only hard part of the drive is away from Lancaster and you dear ones. Let the reader beware...my cleaning amounted to washing a few dishes. Yes, I had another birthday, insult to injury, but spending it with you and hearing from my boys in their hilarious manner, and dear friends, well it was the best yet! Emily and James we are praying for you, and I know that God will answer that one too (along with making Livi's count match her cuteness!!!). This is way too hard for you and it breaks my heart to see you have to suffer for your child; because, of course, Livi doesn't know she is suffering yet! you are a trooper and God's strength is in you more than you realize...Livi couldn't have a better mother or father. God knew that when he blessed you with her. I am missing you all already. Lots of love, MOM

7:46 PM  
Blogger Lynne said...

My heart is heavy.....how can it be, this precious, healthy looking baby is so sick? She looked so good last week when she visited....tolerated Higgins and Mason with giggles (and some tears, not many)and is such a happy girl. I pray for you. I think of you often. I ache for all of your family. Dennis and I are always here for you....your parents.....I pray the bone marrow test goes well next week. Our best to you all.
Lynne and Denny

8:51 PM  
Anonymous kb said...

well your mom's entry brought tears.
thank you for sharing...for crying out to God for faith...for walking thru this and allowing others to get a glimpse of what you're going thru and how to be specifically lifting you (all) before the throne of grace!
we'll see you tomorrow & corey will pick up the rx in the afternoon.
much love to you three, kathy

8:58 PM  
Blogger beth said...

I love you and and praying and praying...

1:25 AM  
Anonymous tina said...

yeah, i agree with Gigi. God's strength is in you more than you realize. you are a great mom, Emily. oh the beauty & strength of a mothers love...i'm so thankful that God gives moms such deep, sacrificial love for their kids. (james, you're a great dad too) praying for you guys. xoxo

8:26 AM  
Anonymous Lori Randolph said...

Dear Emily,

I just wanted you to know that God caused me to remember you, James and Alivia this morning, and I began praying for all of you. Then, I came into work and read your blog. And, praise God, your prayer requests were the very things I felt you needed prayer for this morning. I am continued to be amazed at God's faithfulness to your family!

Your sister in Christ,

9:38 AM  
Blogger Laura said...

You inspire me! I know I don't know you but reading about your life and what your walking through I can see God's grace radiating! Just the fact that you are trying to see the good in this is sooo encouraging! Please keep sharing

9:52 PM  

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