2011 April - Aria MacDonald

Yesterday we did the blood test for Aria’s EBV/Mono/G Fever.  Her count got as high as 9 million at last count and today it is………

870,000!!!!!

Wow!!!

This is a huge drop and very unexpected.  The Infectious Disease team told us we would optimistic if it dropped a bit but in reality we should be happy if at least it didn’t get higher.  So the result today is very very good.  Considering she has only had two doses of the medicine.

Also, finally, Aria’s outputs are better!  She has been able to go back up on feeds 80 tonight and goal is 100.

What is less than miraculous is that Aria has been admitted since Sunday.  We took her in for high fevers and turns out she has a pneumonia.  Not a terrible one but not a great one.  She has improved with a change to IV ABX but has plateaued the past couple of days and still spiking temps so they switched them today.

We have had friends over from NZ and to stay with us for a couple of days.  Sadly we were in hospital but Hamish and I got to spend time with them and they visited Aria in hospital.  We had a great time with them.  Asher really took to Peter and Margaret (and they to him) in a very short space of time and was quite heartbroken this morning when they left.  So Hamish is taking him to the movies today to distract him and cheer him up.

Today we are really praying that Aria will not spike a fever in the morning tomorrow and we can get home!  Having only one day at home allowed us to recharge our batteries but we need more.

Everyone is asking me today:  Did you see the Biggest Loser last night??  Apparently they were in Auckland jumping off the Sky Tower and doing all that kinda stuff.  Of course everyone is saying ‘NZ is so beautiful!’  I missed it because I was talking with our guests but maybe it is a good thing cause it would of made me homesick 😀

Psalm 31:21-22 (New International Version, ©2011)

²¹ Praise be to the LORD,
for he showed me the wonders of his love
when I was in a city under siege.
²² In my alarm I said,
“I am cut off from your sight!”
Yet you heard my cry for mercy
when I called to you for help.

We are still waiting for final confirmation but:

Aria does not have PTLD/post transplant cancer

Aria does not have Graft V Host/her organs rejecting her body.

Aria is home.

We cried to the Lord in weak feeble voices and He heard.  You cried to Him on our behalf and He heard.  He delivered her.

Aria does have a very bad case of mono/EBV/glandular fever.

Aria is at serious risk of infection because of suppressed infection fighting cells.

But despite needing O2 at night and being a bit more sleepy she is pretty well.   We continue to pray this is the extent of her illness, the new drug starts to work and she is spared from infection.

Hamish and I have had a VERY rough time.  For many reasons.  It has been a HUGE emotional rollercoaster.  Please keep praying for us for strength and relaxation.  We are going to be busy with Aria care, twice weekly visits to the hospital for a top up of platelets and blood.

THANK YOU a thousand times for your love and support.  We loved the beautiful comments and messages.  Thank you for sharing your hearts with us and encouraging us.  It does make a difference.  Your prayers make a bigger one 🙂

Today is another waiting day.  No news or diagnosis.

Power and control.  Two things humans really value.

I think that perhaps people take for granted how much power and control they have over there lives until it is taken away.  I know I did.  It is particularly felt after having a baby and suddenly your world is dictated by another tiny human with lots of needs.

Power and control is something I have very little of in hospital.  It is quite dehumanising.  I wonder how Aria feels and I wonder how adult patients feel.

There is no control over who comes into your room day and night.  No control of your own sleep.  No control over who is in your room first thing in the  morning.  No control over what you eat to some degree.  No control who you talk to or who you are forced to talk too.

Currently I am sitting in a baking hospital room, heat coming out of the furnace and the fan going.  Perhaps I don’t even have control over the temperature of my own body.  Turns out the heater is broken and we are hopefully moving rooms.

There are manners and ways of doing things that have been dictated to you since you were a child.  Speak when spoken too.  Be polite.  Use your manners.  Don’t be rude.

But what happens when you are riding the lift for the 8th time in that day and you really really don’t feel like chatting to a stranger about how fast it is going or the fact your are perfectly capable of pushing your own button to choose the floor thanks very much.

What happens when Aria’s pump beeps off for the 3rd time in the night?  You are woken for the 3rd time in the night.  You are puzzled by the fact that the nurse seems to be able to remember to hang the med yet doesn’t not seem to be able to remember to come and turn it off before a tired hospital mum is forced to get out of bed, buzz and yell at the wall for the 3rd time that night.  Puzzled isn’t the word.  Annoyed is the word.

What happens at rounds when there feels like 100 eyes staring at you when you are getting bad news?  What do you do?  Say to the 50 people in the room, please leave?  Say to the person talking what you just said broke my heart and the way you said it hurt me?

What happens when you are talking to someone in high heels and immaculate makeup and a white coat?  Or a person freshly shaved in a tie and white coat?  What happens when you are in flip flops and shorts and a tshirt with the words Tumeke Bro written on it?  Even by simple nature of dress it is clear who has the power and who doesn’t.

The strange thing is I live in a community.  A community were there is relationship but not friendship.  These people are professionals.  Perhaps we would actually be friends outside of the hospital.  But we don’t live outside the hospital we live here.

I am not alone.  I have at least two beautiful friends walking the same hospital journey.  I am not alone.  There are millions of people stripped of their power and control.  Some in this very country thru injustice.  Some in other countries thru war or famine or human evil or earthquakes.  Some in NZ.  I am not alone and more privileged than many on this list due to the fact of a roof over my head and food in my belly.

How does this make me feel about God?  I think thru the nature of my upbringing and culture I find it hard to see God as a loving safe haven who carries me in His arms.  I see Him more as a punisher, life lesson teacher and a being who withholds good things from me.  This is an unbalanced view of God and so not true of what I read in the bible.  My cousins Kathleen and Anita have really helped change this view of God for me.  To quote them “Pull the cosy blanket of God’s peace over you, and relax’   Think I might just do that.  Except today given the temp in this room I will imagine God’s peace as a crisp refreshing breeze blowing my anxious fears away.

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’.  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.  So we can’t do anything until we know for sure whether it is PTLD or not.  I am told it can’t be both, fairly impossible.

Anyway, it is pretty tough going.  And having to keep waiting is really hard.

Aria is doing pretty well in herself.  She is back on O2 during the day but hopefully just a result of being intubated in the OR.

Aria’s in the OR as I write this.  I am at home.  Hamish is floating around the hospital somewhere.  Asher is at preschool.

Aria’s having a host of tests involving three different teams so we are hoping everything goes smoothly and everyone gets their jobs done right.  They added an intestinal biopsy to the list too because she recently started dumping huge amounts again.  We have been running her immune suppression drug at low levels, which is risky, in hope that it would help her kick the norwalk virus.

Tomorrow she will start the drug trial and hopefully we will get answers from the tests today.

Truthfully I can’t see how we can walk away from this without the PTLD/ post transplant cancer diagnosis.  Everyone I talked to over the weekend is fairly certain it is.  Truthfully I don’t know how to pray either.  Do I pray for no PTLD, that seems obvious.  Do I pray for our hearts to be prepared?  Do I tell God the truth about how I feel and seem like I am doubting a possible miracle?  My friend Lindsey visited yesterday and said ‘don’t worry we will pray for you’  Great answer, God knows the cries of our heart, sometimes there are no words.

Hamish and I have gone back to 24 hour rotating shifts.  It’s a little brutal but for the best.  I was finding the days so draining and emotional.  Never a moments peace, constant demands.  I had two friends visit yesterday, Lindsey and Erika (thank you ladies for the treats and goodies!) and there were constant interruptions.  I just wanted to scream ‘please let me have a moments peace to talk to my friends- I need this!’   Put that together with broken sleep and it is a recipe for mental disaster.

Anyway, enough complaining!  Please pray for us.  The person coming off the 24 shift has to parent Asher the next day having had a crappy night sleep.  It could be very easy to be take our tiredness out on him with shortness or permissiveness.  Which he doesn’t deserve. Please pray for our parenting of both kids.  Ultimately we just want them to grow up and love Jesus and we know need to guide them with our actions and words.

Aria is doing pretty good.  Her bloods tanked again overnight and she back to being neutropenic meaning high risk for infection.  Please pray for her protection.  She is pretty happy actually, which is good.  Grumpy when she wakes up but gets into things slowly.  And she is sleeping better too.

Anyway I am planning a nap, shower and exercise this arvo 🙂  Better get to it!

Aria’s labs are a lot better today.  Because she had platelets and blood we would kinda expect that.  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!!  Yay!  Her outputs are still not normal but hanging in there.

Aria had a pretty good night’s sleep too.  Needed O2 but doing better.

Aria perked right up after the blood yesterday and was quite the hoot.  ‘I love my mummy’ she would tell me.  So cute.

Rounds came around and the famous Dr Botha is on this week.  That’s nice.  He looked at the CT and said it is more like a 85% chance of PTLD.

My heart tells me, peacefully, that it is.  It’s ok.  We will get thru it.  Aria will get thru it.  There has only been one case of full blown PTLD that turned into cancerous tumours and needed full blown chemo.  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.  Asher spent the night with our friend Brad and Steph which we are really grateful for last night.  Meant Hamish and I got to leave Aria with the nurses for a bit and step out and talk and pray.  Being able to do this during a hospital admission is quite rare.

Will post more news on Monday (Tues NZ time)  hopefully the OR trip will be smooth.

Love this Psalm!  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.

So a lot has been going on and we have been waiting for results this afternoon before we updated.

Aria has EBV/Mono/Kissing Disease/Glandular Fever.   It has been ‘cooking’ in her blood work for awhile, at low numbers.  Now it has reached 9 million.  Pretty high.

EBV causes PTLD, post transplant lymphoproliferative disorder or post transplant cancer.  She has a CT scan today and it showed enlarged lymph nodes thru out her body.  This wasn’t great news and means there is an 80% chance she has PTLD.

On Monday she will have a lumper puncture, bone marrow biopsy and lymph node biopsy in the OR under a general.  This will tell us if it is or isn’t cancer.

We are hoping and praying we have caught the EBV early and the cells haven’t switched over to PTLD.  We deeply covet your prayers for this.

If it is PTLD Aria will start Chemo Lite on Wednesday.  This is less aggressive that regular chemo and of course I asked if she would lose her hair and the answer was ‘probably not’

Right now as things stand Aria pretty much no ability to fight infection.  Her white blood cells and platelets and other markers are very low.  Today she got some blood and platelets.  She is currently at very high risk for infection or a spontaneous internal bleed.

So we are begging God for his protective hand in her life preventing her from infection and that there would be NO PTLD!  It is possible, anything is possible.  We are claiming victory!