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 +113
The last few days have continued to be a roller coaster. Our doc spent the entire day friday trying to figure out what woud be the absolute best route to take in treating the lymphoma. She talked to experts across the country and they all said the same thing....get rid of the immune suppression and hopefully Alivia's T-cells will take over again and she will get better. we agreed with the her. The only reason for the immune suppression is to keep the GVHD at bay...the GVHD has been "silent" for over a month now. And we have clinical proof that there isn't any (the endoscopy and colonoscopy) so as our doc said "we can't be afraid of the thing she doesn't have (GVHD), we need to be afraid of the thing she does have"
So over the next week or so we will be completely off of immune supression. That means no more steriods or cyclosporin. THat means her dark eyebrows will go away, she will not be puffy and hopefully her little T-cells will get smart and help her get better.
She did have another dose of chemo yesterday. No rituxin (which is the 10 hour infusion) and no pherisis. Her IGM is still going up slowly but her Viscosity is coming down... doens't make a whole lot of sense but thats okay. Her marrow made platelets on its own for the first time in a long time Friday...then back down yesterday with the chemo and back up a bit today. MAking platelets is a good sign. There will be a lot of watching and waiting over the next few weeks.
Please pray the GVHD continues to stay silent (a flare at this point would be fatal). Prya that her stomach heals enough for feeds. Pray that her t-cells become EBV specific and get rid of the lymphoma. Pray for healing.
Thanks to
the Mike's for the magnet games, stickers (which she used completely already), the Starbucks and Visa cards. You guys are amazing.
Jude Garner for the card
Julie and Dan Garnder for cleaning. Hear it looks nice
Maryann Kisic for the stickers
Marmie...Livi loves the picture of you and Elmo. She looks and it and says Elmo and then points to you and we ask is that Marmie? and she says "yea"
Rick and Deb Gilgore for both of the cards
Sue Forry for the car
GIna Bryant for the stickers
Joe Capp for the gift card and stickers.
We are constantly overwhlemed by the practical love we are shown. Thanks everyone.
posted by Alivia's Momma @ 12:47 PM
23 Comments:
Great blog, Emily. Thanks
Do you have any recent pictures of Livi you could post? Would sure love to see her face!!!!! A friend
Emily, thanks for sharing all these details. It is great being able to specifically pray for Livi. May you sustain with God's grace. Love you, Beth
Dear Emily,
Just want you to know, I'm still reading your blog and checking daily for updates. You bless so many of us, myself included, by allowing us into your life. I wear my Baby Livi bracelets and pray constantly for a miracle for your Sweet Girl. You are such a wonderful mother and wife, and I'm praying for God's special blessings on you and your whole family.
Jill Piper
Always praying.
Ps. 103
There are so many positive things to pray for, we will be praying for a healing in all areas for your beautiful baby girl. May God refresh your strength and faith and grace each day, Emily, and we ask for special blessings on Alivia and you and all your family. You are in the thoughts and prayers of so many, and your litle darling is so loved, and so are you. You are teaching us all so much about the love and devotion of a mother....you are a wonderful example to all of us. Love, the Vandernecks
Love you guys! Missing y'all and praying for healing.
XOXOXO, GAL
Hello
Emily,
James,
and Darling Alivia,
You are all in my thoughts and I pray for comfort and healing..
You are in so many hearts..
God Bless and Give you comfort.
Phylis
Praying is a foregone conclusion as is all the love coming your way and missing you constantly. We are so grateful for every bit of news. Thank you for making the effort though you are surely ever weary. Praying very specifically for all things needed for healing. As ever , Marmie
Still praying for all of you. Craving some photos too. Just miss seeing her angel face. Continue to praise him in this storm that seems unending. He will prevail! Much love. In him. Mindi Breakiron
Praying for complete healing and physical restoration ... wholeness, great health and lots of laughter in the days to come. Sounds like God is pouring out wisdom upon your doctor. God bless her. Thank you for posting. Love, Janet S.
Always praying !!!!!!!!!!!
still praying for your sweetie pie and I would love to see pictures of her cute face!!!!! rest in God's grace......
I am praying for healing! God bless,
Dropping the immune suppression sounds like it could help simplify the incredible balancing act that has been going on with all the drugs and treatments that this baby has been enduring, and what a blessing to see the real Alivia again.
Of course we pray that this next step doesn't just simplify things but is a real step in true recovery by the grace of God.
oh wow, we are praying. I felt really happy when I read your post. No puffy face, no dark eyebrows...maybe a happy Livi and some really sweet times together. We are always praying for healing.
Praying Em!
Love Shannon and family
Go T-Cells Go!!
Thanks for the update. It does make sense and I love knowing there are so many in working to figure out what is the next best step. Excited that the grafting has worked.
Keeping this blog for so long admist the grueling days has really kept us focused on prayer and all of your specific needs. Thanks. Sleep well. How is Jackson doing?
Love,
Diana B.
May God continue to give grace, wisdom and perserverance to your doctor. She sounds like the kind of doc I would want in my corner! How kind of God to give her to you for Livi's care.
Still praying for a complete healing!
Mary Ann K.
I'll be praying for you guys over the week. Keep trusting God!
love,
moriah
Thinking of you lots! Just wanted to let you know.
Thinking about you, Livi! Hope the next blog from your mommy brings happy results from your treatments this week. Hopeful that you will be home soon.
Christi
How's she doing? We love her so much ... In Christ, Janet S.
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