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.

Saturday, May 20, 2006

News

First of all...last night around 10:30 we had a 2 lb poop. YEAH WHO!!! James and I were at a friends for a birthday party and my parents we good enough to dispose of the toxic waste. It stunk up the whole second floor but what do you expect after 5 days of nothing.

Second we got a call from the doctor today about the test results. Both the Liver and Lymph Node showed nothing new (just a lot of eosinaphils) and the liver showed that there is no organ destruction. The Bone Marrow Biopsy and Aspirate showed nothing new either. Which proves that this is not an acute leukemia (meaning lots of blast cells). They said this means that there are not "bad" cells just too many good cells. So unofficially we are being diagnosised as having Hyper Eosinaphil Syndrom/ Chronic Eosinaphilic Leukemia (chronic meaning that it could smoulder for a while and then take off into full blown leukemia) Either way not truly a leukemia (yet). The test for JMML came back negative! (thank God). So we will be starting treatment in the next few weeks. He is looking at 2 different kinds of chemo (both oral and fairly benign drugs...still chemo though) or another drug that is given by shot. The 3rd option (alpha interferon) has more reactions (fever, chills, headache, nausea, pain). Regardless of the treatment we will be admitted to the hospital for the first few days to see how she responds. Our doctor also wants us to go see a world renown specialist at Hopkins named Robert Arceci. He is already aware of Alivia and will be presenting her case in front of 30 doctors this week for discussion (they meet once a week and discuss cases and he asked if he could present Alivia so our Doctor is sending all the info to him Monday). We will either get an appointment with him soon (he frequently travels and is very highly sought after) or in a month. If it is in a month then we will start treatment before he sees her since he will have all of her slides and test results. Currently we are not considering a bone marrow transplant but that is still a possibility. Our DR. wants to try treatment first and see if it cures it. If treatment just maintains but the white cells take off when she stops treatment then we will consider a transplant. Our Doctor said that her white cells should go down quickly and her liver and spleen should get smaller once we start treatment.

It felt like a really good phone call. We were so excited that the JMML test (also known to some as the Georgia) came back negative. We know it is still going to be hard (especially treatment) and there are still big hills ahead but this is encouraging to us. They still have never seen this in a child this young and are going to have to figure out how to make the drugs liquid so she can take them. But it would be nice to have oral chemo instead of IV. That means no port!!

Pray for...
...an appointment with Dr. Arceci soon (the sooner the better)
...wisdom for the people figuring out how to make the drugs liquid
...correct doses of the meds
...a treatment that won't have terrible side affects (now or 10 yrs from now)
...total remission
...patience for James and I (and our families) while we wait to see what the treatment will be, how long we'll be in the hospital, when we'll meet Dr. Arceci, whether or not the treatment will work.

Thanks for today
Cute toy and note from Tonya Walls and family
Cute book, toy and outfit from Claudia Curry
Lots of fun with my parents today and babysitting last night.
All the fun we had last night with Jeff, Leslie, Vic, April, Sonya and Julie...you guys kept our minds off Livi for an evening and made us laugh. We needed that. Love you guys.

7 Comments:

Anonymous Anonymous said...

You're welcome...any time!!! Hope Aks didn't do any permanent damage to Livi's foot!!!
Good news! Crazy, but good. Alivia is going to be world-famous here pretty soon!
We will continue to pray!
Love, Les and the Yode's

5:46 PM  
Anonymous Anonymous said...

i am glad the JMML test came back negative! i am praying for your family, and the doctors. you are a great mom.....and wife!

God bless you,
Christi B.

5:46 PM  
Anonymous Anonymous said...

I am encouraged too that there is a (sort of) diagnosis and there is a (sort of) plan for treatment! Also that the JMML test is negative (woohoo!). Great news that her organs are doing well. One step at a time. Still praying for you all. Aunt Cheryl

7:26 PM  
Blogger Karen Hevesy said...

When you were a little girl and you pictured motherhood did you ever picture yourself cheering for poop? HA HA. Happy for your good news, still praying.

8:54 PM  
Blogger Briana Almengor said...

We will be praying these specific things for ya'll and are rejoicing at God's mercy and grace in your lives.
Of course we would love to have you stay with us when you make the trip to Hopkins..who knows but that our kids end up there at the same time!
We can also help you get around the hospital as we have grown a bit familiar with the mammoth institution.

Love you much.
Yeah for the Poop!! :)

9:49 PM  
Anonymous Anonymous said...

I will be praying! it is nice to have specific things to pray for! i am glad she pooped!!!!!!!! i pray she heals soon. remember that with God All things are possible! hopefull i will see you tommorow (Sunday)!

lots of love and prayers,
moriah

10:58 PM  
Anonymous Adalie Plain said...

Emily, you win the prize for most excited about a 2 lb. poop! :)

[praying]

-Adalie

11:02 PM  

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