2011 May - Aria MacDonald

Yes, that actually does make sense. Yesterday was one year since Aria had her second transplant.

Strangely enough this update is written from a PICU room, one door down from where all the drama went down this time last year. Aria had a little episode this afternoon while waiting for a CT scan where she had too many sedatives on board and got a little fuzzy. So to be on the safe side she is spending the night in PICU.

The CT was because Aria spiked a fever this morning and with her inability to mount a defense, due to her immune system issues they wanted to be aggressive in checking for issues. We can add that concern to ongoing severe headache, high outputs, a return of her terrible skin condition and a six week hospital stay with no really good answers let along an end in sight…. feeling sorry for ourselves and especially Aria much?

In some ways we are feeling very lost and struggling with where we are at, what is God doing in Aria’s and our lives? Where is all this heading, what is the purpose in all this?

Last night, a couple of verses really spoke to Anita and I as we took a rare night at home together to recharge and reconnect.

Isaiah 41:8 “But you, Israel, my servant,
Jacob, whom I have chosen,
you descendants of Abraham my friend,
9 I took you from the ends of the earth,
from its farthest corners I called you.
I said, ‘You are my servant’;
I have chosen you and have not rejected you.
10 So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand.

There is a lot in there that lifts us up out of the depths we sometimes feel ourselves falling to.

As people who quite literally have been called to Omaha, Nebraska from the other side of the world, we sometimes feel like God has rejected our pleas or forgotten us and our daughter’s journey….. but He hasn’t.

We, like Abraham, are friends of God through Christ’s blood. We are his servants in this strange, awful, amazing experience and we need not fear or be dismayed, for he is OUR God and He will strengthen, help and uphold us.

Prayers and love to the families who made the choice that gave Aria another chance at life.

Thanks and love to our prayer warriors.

May the Lord grant Aria many more transplantaversaries!

Let me start by saying that Anita is a super awesome mother. I am very proud of how she loves and cares for Aria and Asher.

Let me also say that the life of a mother in our circumstances is very hard.

The separation of the family is hard.
To not be working in conjunction with your husband is hard.
To have special occasions (like Mothers Day) impacted by illness/hospitalisation is hard.
To not be able to raise your kids as you would always like to due to circumstances is hard.
To be isolated from your support network of like-minded mothers, friends and family is hard.

There is just so much that is hard about being a mother of a sick child, especially so far away from home.

Yet Anita rises to this challenge and does an outstanding job.
To do what needs to be done, no matter how much she doesn’t ‘feel’ like doing it.
To be able to shower the kids with love and affection even when the emotion tanks are empty.

Happy Mothers Day, Anita. You’re the best mother a father could ask for.

Aria’s bone marrow is showing signs of life!  This is great.  Her ANC has been slowing creeping up.  Today is is 629!  Yay.  Over the magic 500 mark.  Still a long way off from a normal 2,500 but at least it is on the improve.

Her biopsy yesterday came back completely normal.  This is good news.  Unfortunately she is still dumping a huge amount and there are no good reasons why.  It is tough, we just have to hope and pray it recovers.

Her temps have been pretty good too.  The highest they have been have been 38.5.  Unfortunately she has been having headaches at night which made for a bad night for Hamish yesterday.  I am hoping for a better one tonight!

Today we went to the Cinco de Mayo party that the hospital put on.  A Mexican fiesta!  We ate Tacos and played games.  Aria surprised us by walking around a bit.  Then surprised me again by walking from her room to the nurses station and back twice later in the day!  She hasn’t walked in weeks so it is nice to see her on her feet.

So until her outputs are down to a more manageable level we are still stuck in hospital.  Hopefully that happens soon.

The hair or lack of is a sensitive topic.  Asher is fascinated by the fact she has no hair, he thinks it is really funny and wants to touch her head.  Aria however seems sensitive about it and doesn’t like to talk about it.   I hope it starts to grow back soon, up until now her differentness has never bothered her.  It is hard because without hair she is so obviously different and I think she understands that.  Sigh.

Last week was quite a difficult week and I am glad to leave it behind.  The only redeeming highlight was a visit from Hamish’s boss from Fisher and Paykel Finance.  It was fun to see her and hear her Kiwi accent and chat about lots of different things.

Aria had a scope last Wednesday and it turned out to be rejection.  We are getting to the point were bad news just kinda rolls off us or maybe we are simply to tired to put energy into being sad about it.  But this is the first time Aria has had rejection and it was certainly a blow.

The treatment for rejection is a three day dose of steroids.  Which of course makes all her number look artificially good.  Her ANC was 700 at one point, which is excellent, but very unlikely to be ‘real’  Her temps have gone too.  Another yay, but not really a yay because again, the steroids take temps away.

But the steroids have likely worked.  Her liver numbers are better and her eyes aren’t so yellow.  Thankfully it is easy to test for rejection in the liver with a quick blood test.  No so with her intestine, that needs to be scoped and biopsied and looked at by a pathologist.  Much more involved and risky.  That will happen again on Monday, tomorrow and we hope for improvement.

Aria transferred out of PICU and is back on the regular Peds floor.  She is pretty happy and busy which is good.

Her EBV count came back at 200.  This result was from the company who is running the drug trial and runs it’s own tests to report to the FDA.  We feel really really pleased that Aria had access to this drug, what a great provision of God.  She only had a few doses of it and it brought her EBV count right down despite being on steroids at the time which should of made her EBV worse.

Not sure what this week will hold.  Aria has to have no fevers, a climbing ANC count and for this rejection to be under control until she can go home.  The steroids stopped yesterday so we will see what her numbers do.  Would be so great to get her home this week but that is in God’s hands.

Asher and I are off to the movies this morning.  I haven’t had a day off from hospital for a long time now so I am really grateful that Hamish is holding the fort today and tonight.  We continue to battle managing the needs of our family as Aria needs us to be in hospital with her 24/7 but that conflicts with Asher needs and our needs for sleep and a healthy marriage.  Please pray for our wisdom in managing this, it is really tough, no helpful guidebooks or parenting magazines to read!

Thanks for checking in and for your prayers and encouragement, we appreciate it!