Wanna hear some good news?
Aria’s labs are a lot better today. Â Because she had platelets and blood we would kinda expect that. Â But it means she is out of the woods for bleeding and we are hoping she stays that way.
Aria is back on full feeds!! Â Yay! Â Her outputs are still not normal but hanging in there.
Aria had a pretty good night’s sleep too. Â Needed O2 but doing better.
Aria perked right up after the blood yesterday and was quite the hoot. Â ‘I love my mummy’ she would tell me. Â So cute.
Rounds came around and the famous Dr Botha is on this week. Â That’s nice. Â He looked at the CT and said it is more like a 85% chance of PTLD.
My heart tells me, peacefully, that it is. Â It’s ok. Â We will get thru it. Â Aria will get thru it. Â There has only been one case of full blown PTLD that turned into cancerous tumours and needed full blown chemo. Â Hopefully Aria has a mild case.
We start treating Aria for the EBV/Mono/Kissing Disease/Glandular Fever on Monday.  We have been able to get Aria on a drug trial with a drug that has proven successful in other patients to help bring down the number of EBV cells in the body.  The trial is FDA approved but the drug is not.  It is a controlled study and the other patients have done well.  We managed to sign and the drug will arrived on Monday.  Good news we got thru to the company, on the east coast, before they closed on Friday.  Good news it comes free along with the lab work etc, the drug company just wants Aria’s results which is fair enough.  Also good news it is taken orally only twice a week.
We are positive and staying that way. Â Asher spent the night with our friend Brad and Steph which we are really grateful for last night. Â Meant Hamish and I got to leave Aria with the nurses for a bit and step out and talk and pray. Â Being able to do this during a hospital admission is quite rare.
Will post more news on Monday (Tues NZ time) Â hopefully the OR trip will be smooth.
Love this Psalm! Â Thanks Helma for reminding us.
Psalm 103
Of David.
1 Praise the LORD, my soul;
all my inmost being, praise his holy name.
2 Praise the LORD, my soul,
and forget not all his benefits—
3 who forgives all your sins
and heals all your diseases,
4 who redeems your life from the pit
and crowns you with love and compassion,
5 who satisfies your desires with good things
so that your youth is renewed like the eagle’s.
9 Responses to “Wanna hear some good news?”
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# 2 Apr at 12:15 pm
Praying for you all at Redeemer this morning. Great to read the feeds are back to 100% and will pray that Aria will get through this latest bump quickly with God’s blessing.
In Christ
Tony
# 2 Apr at 12:34 pm
Though the mountains be shaken
and the hills be removed,
yet my unfailing love for you will not be shaken
nor my covenant of peace be removed,â€
says the LORD, who has compassion on you.
Isa 54:10
A covenant is … well a covenant, and God’s covenants are unbreakable, unshakeable and cannot be removed!
Keep reclaiming the peace He promises!
# 2 Apr at 12:37 pm
Prayed so hard last night asking for good news and
as always the Lord was taking care of things.Praying for the new drugs to get this job done and Aria will be home again soon.Glad you and Hanish had a quiet time alone. Thank God for Christian friends who are able to help out.
# 2 Apr at 8:01 pm
“I have called you by name, You are mine: When you pass through the waters, I will be with you; and through the rivers, they shall not overflow you. When you walk through the fire, you shall not be burned…Fear not for I am with you. (Is 43: 1b,2, 5a) and “fear not, for I am with you; be not dismayed for I am your God. I will strengthen you, Yes, I will help you, I will uphold you with My righteous right hand.(Is. 41:10) Whatever the waters are that you are going through now and in the future, you do have God’s promises that he is with you and will never forsake you and is there for you. He does know what is happening, even if we dont. He loves you and we do to. Much in prayer.
# 2 Apr at 9:49 pm
Thank you God our Father thru Jesus Christ your beloved Son!!! We thank Him for wonderful good news always, we praise Him halleluia, to God be all glory amen, amen, amen.
# 2 Apr at 9:50 pm
Praise God for every blessing! 🙂 We were singing ‘God is so good’ in kids church today (the other verses we sang was ‘He answers prayer’ and ‘He loves me so’). Even though it’s such a simple song, it seems appropriate for Aria 🙂 xoxo
# 3 Apr at 2:16 pm
Good to hear that Aria had a good day 🙂 Our thoughts and prayers will be with Aria on Monday (Tues NZ time) and we are praying and trusting for a positive result. God is with you, don’t give up. God bless x
# 3 Apr at 3:14 pm
That is good news. I hope Aria only hasamild case too! Aria is a brave little girl, so I know she will get through it all okay! I’m definitely praying for her! God Bless!
# 3 Apr at 6:27 pm
I am in awe of your beautiful positive outlook and I am glad you had Dr Botha to reassure you and give you confidence this week. Yes, another bump in the road, but it looks manageable thanks to the medical team and the trial drugs. You’ve really had a crazy roller coaster since first transplant haven’t you. Everyone says it will happen but you don’t get it until it happens to you. But, you all are doing so well, even tho your emotions are all over the place, you still have such strength within you and I admire you. Sending lots of love and hugs xxx