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.News?!
Sometimes they say no news is good news. I would have to say I don't agree. No news drives you insane slowly but surely. We waited all day and finally the doctor came to talk around 9:30 and said that they still dont' know what it is. Not only that but they are going to have the infectious disease team come and evaluate her tomorrow because it might be a crazy parasite that they haven't found yet. Its after 10 and she is getting a CAT scan right now. They are just doing whatever they can.
Our Oncologist thinks it is some really early form of leukimia that he named but of course I can't recall right now. It would be a really really rare form (Not what we want) I keep saying I don't want any syndromes or diseases named after my daughter. I don't want to be the first to discover anything. I want to have something they can treat, that they are familiar with and that is easy.
They did say that their is a 90% chance it is not the easiest kind of leukemia (A.L.L.) so that is hard. Now we are wanting it to be A.M.L. if it is leukemia. The best option would be a parasite. That would be easier to treat(they think) and wouldn't need chemo. The other kind (J.M.M.L.) requires a bone marrow transplant and it is dissappointing to know that we wouldn't be a match. That is very hard to swallow. So if it is that kind everyone will have to get tested. But don't rush out and do it unless you are willing to donate to anyone. No need to do any unneeded tests.
On a positive note they are planning to extubate her tomorrow morning (which means next thursday in hospital time...haha) Other good news I still seem to find some things funny.
The extubation is going to be rough cause they have to bring her out of sedation and she hates it. She gets so scared and starts to fight the tube. We probably won't be in the room for it but after we will get to hold her. I can't wait to give her a big hug and kisses all over. In my eyes she is still perfect and has the cutest toes I have ever seen (One of the things I was marveling in today) She is getting a lot of love and that is wonderful. Keep praying maybe all of this is just God doing a miracle and healing her as we watch. That would be great. Then she would be in a scientific journal for a good reason....that would be the kind of reason we would be happy about.
Good Night
posted by Alivia's Momma @ 10:16 PM
3 Comments:
Emily,
My mom told me about Alivia this morning and I've been scanning through your blog to catch up on what all has happened. My thoughts and prayers are with you. I wish I was back home in Hershey so I could call and visit like you requested. But prayers from Cairo still make it to the same God.
-Kayte
P.S. All the stories from January and Febuary were adorable. I liked reading about snow...believe it or not I miss it.
Dear Emily,
Since I heard of the news on Saturday from Denise Teaman, I have been carrying Livi, you and James in my heart, mind and prayers. My thoughts go to Livi's situation often.
Lisa Evans emailed me this morning with a link to your blog. Thanks so much for taking the time to write about what is happening and how you and James are doing. My heart is sadden by all that your family is going through, especially sweet lil' Livi. But, I was encouraged to hear how you and James are trusting in the sovereignty of God. It's good to know that God loves Alivia, too (even more than anyone of us could).
I hope Lane and I will be able to come and visit (I wish I could come during the day, but I work full-time). Please KNOW that Lane and I are praying for you.
Much love,
Your friends and sister and brother in Christ,
Lori (and Lane) Randolph
Dear Emily,
I just wanted you to know that we are praying for Alivia. We're also praying for you for strength and courage and grace.
Love from your Indiana home,
Donna Cupp
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