The miracle that wasn’t
Psalm 42:3-5 (New International Version, ©2011)
3 My tears have been my food
day and night,
while people say to me all day long,
“Where is your God?â€
4 These things I remember
as I pour out my soul:
how I used to go to the house of God
under the protection of the Mighty One
with shouts of joy and praise
among the festive throng.
5 Why, my soul, are you downcast?
Why so disturbed within me?
Put your hope in God,
for I will yet praise him,
my Savior and my God.
We are shocked.
Aria does indeed have PTLD, post transplant cancer.
We knew that her EBV count had come down but her bone marrow and infection fighting cells had not bounced back. Â They are pretty much sitting at zero. Â And have been for two week or more.
I guess alarm bells must of started ringing today. Â They decided that they would re biopsy her on Monday if things didn’t improve over the weekend.
However when the surgeon came back a couple of hours after rounds and my alarm bells started to ring. Â Getting a visit ‘after hours’ from the surgeon is always bad news.
He is the chief transplant surgeon and very experienced.  He sat down the the chief pathologist and together had a meeting and read the slides.  It isn’t obvious PTLD but it does look suspicious, there are big black cells which look like cancer cells in Aria’s bone marrow.  That is a basic explanation, I was so shocked I don’t think I took it in very well.
Aria is in the PICU and had her first round of chemo lite today.  She did pretty well.  They started her on steroids.  Everything will go in a cycle, once a week.  How many cycles?  Who knows, will depend on how she responses to it.
So we are feeling shell shocked and sad. Â We thought PTLD was off the table. Â We rejoiced that it was.
Please pray for us. Â Asher is also pretty sick with a double ear infection, poor boy.
We feel really downcast. Â Life is tough right now.
God is still good. Â Maybe some will ask ‘Where is your God’ Â Fair enough. Â But He is still here, living and loving us. Â Loving Aria. Â His plans are great. Â He is great.
72 Responses to “The miracle that wasn’t”
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# 17 Apr at 4:53 am
So, so sad to hear this news. Praying for new miracles in all your lives.
# 17 Apr at 8:56 am
Where is God in all this?
Wrapping His arms tightly around you.
# 17 Apr at 2:36 pm
Oh Anita 🙁
You are all in my thoughts
Hugest hugs for you all.xxx
# 17 Apr at 3:06 pm
Love to you, Aria, and your strong, beautiful family x
# 17 Apr at 3:38 pm
I have read all the comments, the amount of love and prayers going up for you is wonderful, so many ‘friends’ you will never meet encouraging you. Be still and feel the power of all these prayers and the warmth of the love that comes with them.
I too send my love and prayers for you all, Hamish, Anita, Aria and Asher ……. and to all those who are involved with the care and treatment of Aria, and your family.
Thank you again for the encouragement you are to me, even when you get news like today’s.
God bless you.
Eve
# 17 Apr at 3:49 pm
From a person who reads your blogs every day its gutting to hear this as i (as im sure a lot of others) feel like I am going through this with you. good luck and all my thoughts are with you guys.
# 17 Apr at 4:10 pm
Very very sorry to hear this news. Praying that there will be more miracles to come and for the strength to face this new hurdle. Love to you all.
# 17 Apr at 4:29 pm
What sad news. We will continue to hold you up in prayer. You are right. God does have a plan and He can make her new again. God Bless
# 17 Apr at 4:42 pm
The LORD replied,my precious child,i love you and would never never leave you.when you see only one set of footprints,it was then that i carried you.
Thinking and praying for you all.xxxoo
# 17 Apr at 4:51 pm
Thinking of you and sending much love your way. Kia kaha. Arohanui from my family to yours.
# 17 Apr at 7:05 pm
Just this morning I was watching some clips on the TVNZ website of the documentary they did on your beautiful little girl and the miracle of her two transplants. And I managed to find your blog after this. Oh wow! I’m so incredibly incredibly sorry you are now walking the journey of cancer with her on top of everything else she has had to endure so far. We walked the leukemia journey with my daughter when she was nearly 4 and I found that to be probably the most exhausting journey I ever walked. It must be so so so much worse for you on top of all the other challenges you have faced to date. I have no words, other than to say I will keep you in my prayers and thoughts. Remember to breath, remember to just put one foot in front of the other and one day at a time. We don’t know why we are chosen to walk a particular road, but your little girl is such an incredibly brave fighter.
# 17 Apr at 7:46 pm
Hi guys, just wanted to let you know that Sarah and I are thinking of you guys at this crappy time. Best of luck for the upcoming treatments.
Love Jason, Sarah and Liv Gurney.
# 17 Apr at 8:19 pm
My heart breaks for you.
“Who shall separate us from the love of Christ? shall trouble or hardship…. No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height or depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord. Our deep love and constant prayers
# 17 Apr at 10:00 pm
Tears…No! I don’t want any of you to suffer anymore!
Trust…We will trust God with you.
Tomorrow…It is written. Every one of our days is known by the One we trust.
Tears….
# 17 Apr at 10:09 pm
Love and prayers for all of you
# 17 Apr at 11:25 pm
So very sorry to hear this news. Praying for you all.
# 17 Apr at 11:43 pm
I have followed you through your journey after watching the documentary on tvnz, reading your entries has become a ritual, at times like this words seem soooooo inadequate you have been through so much and Aria has had more than her fair share of hiccups it just doesn’t seem fair, she is so lucky to have you as her parents and Asher as her brother. Stay strong…miracles do happen.Our love and prayers are with you all. xxxxx
# 18 Apr at 1:12 am
My thoughts and prayers are with you all
# 18 Apr at 8:43 am
Lindsey shared your prayer request with me. Please know I’ve been praying since Friday for sweet Aria and your family! God is still on His thrown!!
# 18 Apr at 11:12 am
Amen to your prayers and thoughts Hamish and Anita, faith shows and I am not alarmed by the news either because I know Him who rAised up Jesus from the dead lives in us, IT IS EASTER TIME (ROMANS 8:11) AND THE MIRACLE HE BEGAN HE WILL SEE IT TO COMPLETION. “Arise my love, arise my love, etc.” Deut33:26-27 The God of Israel whom we love and serve is not like any god, he rides across the heavens to help you. And underneath you are His everlasting arms amen, amen, amen!!! Have faith in God (Matt 4:8) And the righteous shall live by faith (Heb. 10 & 11). For God so loved us all that He gave us His Son….how much more He will give us all things (John 3:16; Romans 8:31-end) God loves you so do I lol.
# 18 Apr at 6:58 pm
Praying for Aria and your family.
# 19 Apr at 3:44 am
Just read this post. I am so shocked too. God has been calling me to intensify my prayers for Aria and your whole family over these last few weeks. Now I know why. I am praying and praying for Aria to be permanantly well and for you all to be able to come home. With our love XXX