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 +76
Yesterday Alivia need oxygen when she was sleeping. A chest x-ray showed nothing but we got back blood tests today that told us what she has. It is called PTLD (post transplant lymphoprolifrative disorder). It is a reactivation of the Epstin Bar virus (mono). So what she has is somewhere between Mono and a lymphoma (cancer). It is treated wtih Rituximab (a monoclonal antibody) which is given over 8 hours. She will get it for the first time ASAP and then again in 3 days then every Friday till she is doing better.
It affects your lymphnodes and causes breathing difficulties. Our doc said it can land patients in the ICU or it can cause death. SO this is very serious. They think they caught it very early. Pray that it is completely resolved, that she doesn't end up in the ICU, that her breathing doesnt' get worse, that she doesnt' have an allergic reaction to the rituximab (that is why it is given over such a long time)
SHe will get benedryl and tylenol as pre-meds which might make her very tired. so yet again she will sleep all day and not at night. Last night was a bit better sleep wise. She got to sleep around 2:30 and was up a few times but only till about 4. then she slept till 8. Maybe I'm just adjusting to no sleep again.
posted by Alivia's Momma @ 10:34 AM
12 Comments:
We will definitely pray that all goes smoothly with this treatment. You poor dear. I can't imagine all of the anxieties you must deal with as everyday brings a new issue. Glad they feel like they caught it early.
Praying and praying
LOve, Yoders
Emily, From reading your blog for the past months, I guess I assumed that you have already adjusted well to no sleep. I honestly don't know how you do it, except that it has to be the grace of GOd upon your life. And His grace is upon Alivia as well. And we will continue to press into Him for healing. Love you. Be encouraged in Him. Janet S.
Emily... Still praying and trusting God for all of you.
Lynn
Praying for complete healing and SOON.
Praying for healing, comfort, and strength
Just getting caught up on what has been happening this past week. Man! I don't know what to say, except we continue to pray and we ask for God's grace and mercy to be extended to you and evident to you. What's happening with her vision? Is she able to see at this point?
I love you, Emily! I'm so sorry you are going through this. XOOOO
Julie
Emily~
I am continuing to uplift you all in prayer.
Love
Audrey Drago
Emily dear, You know how earnestly and how constantly we are praying. We will not cease our cries for help. Loving always, Marmie
Thank you, Lord, that while Livi's status seems to change every day, You never change. You are the same Perfect, Holy God who created Livi and loves Livi and can heal Livi. Please do that, God.
Please help us to guard our hearts and our hope from fluctuating with each new report but to set our hopes firmly on the Rock that is you, on the One who never changes. This is no small request, God, for our hearts are so feeble, our emotions so deceiving. But, we know you are Big and you can help us. Please help us, God.
I'm praying Emily!
I cannot imagine how completely exhausted you must all be. Know that your prayer partners continue to hold you and precious Livi before the throne of God.
EMILY AND JAMES
I'M PRAYING...
GOD BLESS YOU,
AND YOUR
PRECIOUS DAUGHTER.
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