No answers but more questions
Today was suppose to be the day for answers but instead we just have more questions.
We were told 24 hours for information about the PTLD but now it is ‘later in the week’. Â Being that it is Tuesday here we will be waiting a few more days yet.
But suddenly there is a new diagnosis on the table.  Graft V Host again.  They did a blood test and simply put Aria has 80% donor cells and 20% her own.  There is a fancy word, sounds like karma, can’t remember.  So the donor cells have taken over her body and are fighting it.  Kinda the opposite of rejection where Aria’s body rejects the organ.  This is were the new organs become the boss and take over.  This might explain her ongoing skin issues and her bone marrow issues too.
The treatments for PTLD and GvH are quite the opposite. Â So we can’t do anything until we know for sure whether it is PTLD or not. Â I am told it can’t be both, fairly impossible.
Anyway, it is pretty tough going. Â And having to keep waiting is really hard.
Aria is doing pretty well in herself. Â She is back on O2 during the day but hopefully just a result of being intubated in the OR.
17 Responses to “No answers but more questions”
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# 5 Apr at 3:12 pm
praying for you all
# 5 Apr at 3:13 pm
We are thinking of you and really hope things improve, it is such a hard road for you! Best wishes, Kim (Matisse’s Aunt)
# 5 Apr at 4:44 pm
Such a hard place to be. My thoughts are with you all xxx
# 5 Apr at 4:48 pm
Oh My! Out of the fat and into the fire! Praying for much wisdom for all the medical team as they interpret results and make decisions on the best treatment plan. Ps 78 this morning reminded me of the danger of limiting God and not remembering his mighty works.(v41). The Lord has already done so much and we all have to hold in there that He will continue to do mighty works according to the good counsel of his will. “Find rest, O my soul in God alone” as you go through this most difficult path of waiting. Our love and hugs
# 5 Apr at 4:52 pm
I really don’t know what to say.
I just have this picture of God holding all four of you in a giant, gentle hug.
Love, prayers, peace, comfort and strength all coming your way from so many of us.
God bless you all as only He can.
God bless all those who are in any way connected with Aria and you as a family.
Eve
# 5 Apr at 6:16 pm
continuing to pray as you fight one battle after another. Admire you for your continued faith thru it all. God is good…. all the time….. and all the time….. God is good
# 5 Apr at 6:28 pm
Prayers and hugs for you all. This is such an incrediable journey that you are having to go on. Stay strong.
# 5 Apr at 8:23 pm
This is all so, so complicated isn’t it! And the hardest part is the waiting. Maybe it’s easier if we keep in mind that “time” isn’t important to God. He is not limited and never makes a mistake. Hugs for all four.
# 5 Apr at 8:37 pm
I think they were referring to mixed chimerism..I have only heard of that being mentioned in bone marrow transplant like our Sammi had. Sammi is mixed chimersim as well..but in BMT you much prefer 100 % donor cells..
Hugs and prayers hoping for better news as well progresses!
LeeAnne, Sammi and family
# 5 Apr at 8:58 pm
Prayers for you all.May you feel God’s love as you wait.
# 5 Apr at 9:22 pm
Sending lots of prayers and thoughts your way guys. Been thinking a lot about you lately and now I know why. Loads of love and hugs and lots of prayers… <3
# 5 Apr at 10:16 pm
Sending our love and prayers at this time. May you have answers real soon and know His love and presence in a very real way. xx
# 6 Apr at 1:10 am
praying for you guys.. please let me know if there’s anything I can do to help.
# 6 Apr at 1:41 am
Still praying for all of you and praying that you get the answers that you need really soon 🙂 God bless x
# 6 Apr at 2:58 am
hugs and prayers
# 6 Apr at 4:47 am
Papa help!!! Jesus help!!! Give us your best answers in all these waitings and testings, all courage and peace for you Hamish, Anita and children amen. Thank you Papa for all your blessings for Aria and family. Thank you Lord Jesus, we praise your holy Name amen.
# 6 Apr at 10:48 am
I’m praying the doctors can give you answers soon! I’m also praying the doctors can give Aria the proper treatment once they find out what it is. Aria is such a brave little girl. Your family is always in my prayers! God Bless!