Clouds
It was a dark stormy day in Omaha NE. Â It was almost pitch black at 3pm and Aria was assuring me it wasn’t her bedtime. Â But strangely enough the clouds had lifted in our little corner of Omaha.
Things had been pretty stormy since Saturday. Â Both in terms of Aria’s health and our ability to cope with what has turned out to be an epic 6 week hospital admission. Â Mothers Day was great though and Aria greeted me with hugs and kisses and presents. Â Brad and Steph brought cupcakes! Â It was a good day. Â Thank you for your beautiful comments and love.
Overall Aria has been tired and grumpy and dogged with headaches and bad bad peeling skin. Honestly spending a day in a hospital room with a grumpy 4 year old is a test of patience!  Not that it was her fault really.  The first hour after getting Tylenol she was happy but it soon went down hill.
Fast forward to yesterday and she had spiked a temp (38.5) and her ANC was 400. Â Chemo was off! Â Frustrating! Â Then she had her wee episode. Â It wasn’t as bad as what happen the other week but there were moments of concern and drama. Â It was not fun for her or my weary heart. Â When she came around after they gave her a med to reverse the sedatives she said to me ‘my life is not fun anymore’. Â Gutted for her.
Chemo was off again today, her ANC was 460 and it needs to be 500. Â Please pray it will happen soon, we can’t even think about discharge until that is done.
But today Aria was a lot brighter and happier.  We were quite concern this morning with her headaches and a few other things, she was just looking off.  But this afternoon she was chatting and laughing and playing!  She did a full hour of school work!  I chatted to the teacher after and she said that Aria is definitely age appropriate in terms of her school work/kindergarten work.  That was very encouraging.  At least something is going right!
We are currently trying to get a dermatologist to see her inpatient.  Long story but that needs prayer too.
Last night my heart felt really empty. Â I think I have lost that reassurance that everything is going to be ok with Aria. Â Not that we have been told that or anyone thinks that but things are so complicated and unraveling. Â Before they were easy, she either gets transplanted or she doesn’t. Â Straightforward. Â I actually asked God if He knew what He was doing last night. Â It felt good to be honest with Him. Â I think today He said ‘Yes’ and filled my heart.
Isaiah 40:13-14Â (New International Version)
13 Who can fathom the Spirit of the LORD,
or instruct the LORD as his counselor?
14 Whom did the LORD consult to enlighten him,
and who taught him the right way?
Who was it that taught him knowledge,
or showed him the path of understanding?
17 Responses to “Clouds”
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# 11 May at 10:27 pm
I am here with you to, I just know what you are going thru, I feel pretty helpless but you are not alone, keep writing and we will keep praying. Love to all
# 11 May at 10:38 pm
I read this yesterday by Elizabeth Elliot -‘Each time God gives us a hard lesson He desires also to give us Himself. If we open our hands to receive the lesson we open our hearts to receive Him,and with Himself His vision to see the glory in the surrender, whether of small things.. or bigger.. He had been over the trail first, for He surrendered His glory, His equality with the Father, His omnipotence, His omnipresence, His all when he came into our world. He stands ready today to supply us with His wisdom to understand what He wants to teach and His strength to carry through, for He never allows us to undergo anything for which he has not promised the strength to endure. His commands are always accompanied by power to obey. The Everlasting Arms are always underneath us, the everlasting love always surrounds us.” Much in prayer for you all at this very testing time.
# 11 May at 10:56 pm
Praise the Lord I like Father’s answer, He knows your every need!
Sad though for Aria and all these mountains but what did our Lord says to us, Talk to the mountain tell it to go away and by faith it will shift itself. What did David said to Goliath “who is this uncircumcised philistine who dared to speak against the army of God, you come to me with spear and chavelin and I come to you in the Name of my God.” And so in the mighty Name of Jesus We tell these mountains of illness, depression and sadness to remove themselves from the Lord’s princess Aria and by faith in our Lord almighty we all say amen, amen, amen..praise the Lord o my soul!!!
# 11 May at 11:35 pm
You most so doubt the Lord’s intentions at times Anita and rightly so. There doesn’t seem to be a positive for you that lasts for very long and the uncertainty would get to me. I cope with what I know and worry about what I don’t and it’s not a good thing. Take heart, a result will be forthcoming. Warm fuzzies to you all.
# 12 May at 1:14 am
The Lord understands how you must feel and it is good to pour out your heart to Him. I was reminded how the late Derek Prince’s wife Ruth was very, very sick and they claimed this Scripture affirming it aloud several times each day: Psalm 118:17 – “I shall not die, but live, and declare the works of the LORD.â€
and she was healed. The power of affirming Scripture is, as I’m sure you know very powerful. You can say this on Aria’s behalf. xx
# 12 May at 2:05 am
Amen to what Rod and Margaret said above. Will keep praying and speaking healing words over Aria 🙂
# 12 May at 4:58 am
Yes, I so feel for you. These ups and downs must be heart wrenching.Aria has gone through so much in her 4 years of life. I pray the Word as God Himself has created the world by His Word. Ps.29:11, The Lord will give strength to his people, the Lord will bless his people with peace. Please Lord Jesus, move powerfully in this situation. You are the God of miracles!We BELIEVE! Amen.
# 12 May at 12:02 pm
Aww…Anita I wish I could be there to encourage your whole family! God does know what He is doing, but it’s hard when you have to wait for answers. You know that more than anyone else. Praying that God will lift your heart up, & may He give you some reasurring (sp?) answers soon! God Bless!
# 12 May at 1:41 pm
We’re with you in prayer. The Holy Spirit, the Comforter, is with you and your dear family.
# 12 May at 1:42 pm
Hello MacDonald Family,
I recently heard about Aria and read her whole blog, yes the whole thing! I live in Green Bay, Wisconsin, Super Bowl Packers territory, and mostly understand what you are going through. My granddaughter, Havalah, was born with Biliary Atresia, a liver disease where bile ducts needed to drain the liver were not present. She would die without a liver transplant. At just 6 weeks of age she had the Kasai surgery which is 30% successful. The surgery involves attaching the intestine directly to the liver with the hopes of getting drainage. Her operation did not work and she was listed for transplant. Fortunately, with a lot of meds, and an NG tube for nutrition, she stayed stable for two years. Her bili kept rising, though, and two months after her 2nd birthday she received “the call.” Her transplant only took 2 and 1/2 hours, producing bile before she left the operating room. Unfortunately, the next day an ultrasound showed that she had developed an hepatic artery clot and the surgeons said that there was only a 10% chance of fixing it or she would have to be relisted with only days to live. Thank God that the surgeons hands were guided from up above! Havalah recovered and her liver was ok. Havalah had several acute rejection episodes that were resolved mostly with steroids and then she had another major surgery at Christmas, 4 months after transplant. She had been getting episodes of cholangitis, liver infections, so the surgeons undid her original Kasai surgery and fixed some bile duct constrictures.
I only tell you all this history because I understand all the bumps in road that happens after transplant. While Aria has a much more complicated case than my granddaughter has please know that the rollercoaster ride has to eventually ease! I was horrified when I read that Aria has PTLD but I also know about lots of children who have made an excellent recovery from it. Luckily, Havalah has been spared this complication.
Anyway, Havalah celebrated her 5 year transplant anniversary last August. She is 7 years old, soon to be 8 in June. She is a happy, smart, charming little girl in second grade and is doing so well. Her only meds are prograf twice a day and a baby aspirin 3 times a week! Our whole family thanks God for the miracle of her second chance at life. We pray for her donor family.
I am following Aria’s blog every day and I am praying that your precious little girl follows an easier path and that she gets well soon so you all can go back to New Zealand. God bless you!
# 12 May at 3:47 pm
Just here praying and believing in his word.
# 12 May at 10:45 pm
Isn’t Isaiah a wonderful book for lifting ones spirits! And yes! God does know what He is doing. He redeems the negative situations that are part of living in a fallen world. Hugs for all 4 of you.
# 13 May at 12:55 am
hugs for you Anita and for wee Aria. Hey not long till the big 5.0. Hope she is home for it!
# 13 May at 1:01 am
Anita, Hamish, Aria and Asher.
Loving you, cant begin to fathom the depths of your angst, but am standing with you. Praying that The God of Heaven and Earth will continue to Strengthen and uphold you in His Grace and Love. Remeber your High Priest was touched with your infirmities to the point of feeling totally rejected by his father. So he can intercede for you at the right hand og the Father and He is dear ones. Blessings
# 15 May at 7:56 pm
Praying tonight for whatever needs there are. May the Lord be very near to you and you be able to feel his presence.Lean on him.
# 16 May at 6:24 am
Big hug to you guys. Will continue to pray. You sound absolutely exhausted. I pray you get quality rest when you rest your head – more than is the norm in the short times you are allowed. I pray for Aria. Lord, please can Aria’s counts be much better when the tests are done so that this amazing family can look forward to home soon.
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