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.Day +59
Here is the promised picture. She is much puffier from the steriods and her eyebrows are dark from the cyclosporin...and this is a smile in case you were wondering.
James will be on the 5:30 or 6 CBS news this evening. They came and interviewed him at the house. I sent a few photos of Alivia too. Should be nice.
We are wrestling with whether or not to give her an experiemental treatment called Mysenchymal Stem Cells. It is a T-cell boost that would hopefully help with the GVHD which should be getting better by now but doesn't seem to be. It is so experimental that only 42 people have gotten it....2 of which are kids on this floor. I am going back and forth. James and I really need to talk about it tonight and pray about it and come up with a plan. The other options are to increase the steriods (not a good idea for her bones) or some other intense meds that I"m not too excited about. We've talked to our doctor, got another doctors opinion and talk to all of the nurses. Pray we are able to make a good decision.
posted by Alivia's Momma @ 5:07 PM
15 Comments:
i just wanted you to know i'm praying for you...
Christi
Emily and James,
Please know that we are still praying. I am at a loss of words right now but The Lord knows.
Steph from WV
I am praying for you guys especially alivia may God give you wisdom to make the best decision for your little girl
Becca
I'm sure you never imagined yourself in the place you find yourselves these days. Having to make such a decision as this is more than I can comprehend, but I've got to trust that God has gone before you in this and will be true to His promise to give you wisdom generously as you ask Him for it.
We love you so much and pray for you daily. We know that you are in God's Hands.
Emily and James,
You are doing such a great job for your baby! You are so strong.
Alivia,
What a brave, sweet, little girl you are! You too are so strong.
Praying, praying, praying for you all.
Hey Em! I don't want you to think that I don't read your blogs. I read them everyday, but I just don't blog back every time. I am thinking of you three and your families constantly. I am hoping and praying for the day that you will walk out of there and go home, at last. I noticed that you said that James will be on the news tonight. I wasn't sure if we would be able to see it on line and if there was link. If so, could you let me know. Thanks! Take care and Love you much!
Heather
Rats. I missed James on the news.
You and James pray, think it through and trust that God has guided you when you come to decide. He has not left you, neither have we.
Praying for divine wisdom and full agreement for the decisions that you and James need to make, and praying especially for Alivia.
With love,
the Fedelis
Emily & James,
We just wanted to let you know that we check your blog daily and pray for you both and Alivia regularly. May you continue to know God's amazing grace through this season of your lives. We and countless others are praying with you. May HE fill you with peace and wisdom to make the necessary decisions ahead. May the Almighty God, Prince of Peace, Lord God of everything, the Great Physician heal little Alivia. We respect you for the manner in which you both have been walking and trusting God. You are an incredible example of Godliness to those of us watching things unfold.
Grace to you - Tom(for the Eckman's)
Praying and praying some more.
Just still praying for you as you seek God's guidance for the best decision for your dear Alivia. I believe the Lord will lead you to the best possible decision. May God bless you and keep you.
Cathy S.
Emily,
You get the Mother's Day award by far.
I just can't get my brain around it, but I know God does and I will be praying for the decision to be clear about each and every next step and that the doctors have great/clear wisdom as well.
You are all so loved.
Love,
Diana B.
We're praying for her and you guys, that God would give you wisdom and heal Livvy. I'm so sorry that she isn't responding the way we want!!!! I can't imagine how hard this must be for you! So I'm praying for strength and grace for you and all your family. Every day.
we love you,
kristi
Praying for you.
hey Emily,
Do they use monoclonal antibodies there to treat GVHD? We use them on the adult populations for patients who do not respond to steroids. I'm just curious, because I've seen them work. I'm praying for you.
Kristine
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