2011 April - Aria MacDonald

That was the quote of the day from the Surgeon today.

Aria is going through another cycle of steroids at the moment, this time because of the results of her scope from the other day. It showed a very slight degree of rejection. This was probably caused by her anti-rejection medication level dropping a bit low. To be on the safe side some steroids have been started and Aria is doing good for being on them.

This morning all her numbers were looking better and everyone was pleased. She had no fevers and had signs of infection fighting cells. This is all good news for the moment, but we have to wait and see what happens when the steroids stop.

Aria is pretty happy at the moment and laughs many times a day and tells us how much fun she has with us. It is nice to see that hospital life doesn’t upset her too much, although it does make life super hard on the rest of us and especially on Anita and I. We are like ships in the night, passing by for a few moments each day.

Please pray that Aria’s improvements last beyond the steroid cycle and that the family ties remain strong during this prolonged hospital stay.

The good news

Oops forgot to post last night- Aria’s EBV count is 15,000!  Down from 570,000 last week.  Awesome

Aria is completely off O2!  Breathing room air.

Turns out she had rhinovirus, the common cold, last week.  This could of been a complete disaster and put her life in serious danger given her zero bone marrow function (no I am not being dramatic).  Given there is no treatment for a virus and she has no ability to fight it, the fact she is doing so well is a miracle.  Yup- I am going to use the M word- cause it is!

I am completely over the no hair thing and we are having a lot of fun with that hats.  Little crochet beanies and swapping out fun accessories.  Today it was a brown beanie with a big pink flower, this evening a black beanie with a bright pink fluffy clip.  Thanks Lindsey for the hat gifties!  Will post photos soon.

The bad news

Yesterday she cultured ‘her Pseudomonas’ in her urine.  Her nasty ABX resistant one.  Quite disappointed as it has never ever been in her urine before.  BUT it was a really low count 6,000 and it wasn’t there in the 2nd culture and it is likely not making her sick but we are going to treat it away.

Aria is still having fevers.  Yesterday as high at 40.1.

Her ANC was 300 on Sunday, then zero for the past few days and 100 today.

Until the fevers go and the ANC trends up she has to stay in hospital.  It could be weeks.  Please pray it isn’t!

Today was a better day!  Looks the likely hood of re-intubation has past and Aria is out of the woods.

Aria was pretty emotional today.  It was a little tough to manage her, I felt really bad for her.  She realises her hair has gone.  She came across a photo I took of her lock of hair and pointed to her head and said ‘all gone’.  She cried a lot for her daddy who came in a bit early for more family time.

But the evening though, she moved PICU rooms and started colouring and laughing a bit.  So that was nice.  We got one without windows in the rush and drama of Thursday so we changed to a nicer one this afternoon which we were grateful for.

On the cancer front it wasn’t such awesome news today.  So I think I am going to obsess less about the ANC number.  I think I need a lesson on all this stuff so will be chasing for one tomorrow.  Anyone know of any good reading resources beside Wikipedia?

Not sure what the plan for the week is.  Her chemo lite has been delayed so hopefully that will be tomorrow.  New team tomorrow and a new plan.

Good news (if that is possible) the reason for Aria’s crash on Thursday was most likely a big fluid shift caused by the chemo.  During the whole drama her gut dumped out about 800mls in 20 mins.  Likely the chemo (temporarily) destroyed the cells in the lining of her gut.  I am told long term her gut will be fine.  So it was not from being septic (bacteria in her blood).  I was told she would still be on the vent if that was the case.  But we just are praying hard that she does not catch anything because she would get very very sick.

A big thank you too all those who turned out to pray for Aria yesterday!  We really appreciate it!

Good news!  Aria came off the ventilator today!

But as we suspected she has had a bumpy day.  She really needs to cough but she is so so so so sleepy.  Doesn’t want to wake up and will only move if we really bug her.  Not really sure what is up with that.

Her afternoon gas came back a little worse and I was getting anxious she was heading in the wrong direction.  But after some more aggressive treatments and a lot of prayer the last two have improved.

On the cancer front her ANC came back improved again at around 300.  Would really like it to hit 500 and we could feel a touch safer about her ability to fight illness.

Her hair has pretty much all gone.  I pulled the rest of it this afternoon with tears.  Sounds nasty but it just peels off her head, no trauma at all.  I just wanted it gone so we can stop looking it falling out and just look at a bald head.  I know, not sure about my logic there, but it was awful to be in limbo with her hair.  Honestly, I feel like this is just the saddest thing ever ever ever.  Totally breaks my heart to see my daughter with no hair.  Maybe it would be easier if she was a boy.  I don’t know.  Anyway, yes I do know it will grow back, but today I am grieving for it’s loss.

Big huge thank you to the Arms family for having Asher this weekend.  He had a great time and went on some fun adventures.  Hamish and I were able to focus on the task at hand with Aria and relax knowing Asher was having fun.  Thank you!!

Aria is doing much much better today.  Everyone is very surprised.  We were warned yesterday that things were going to get worse before getting better.  Her kidney and liver numbers were going to tank and we could expect kidney failure and even dialysis.

This morning however her liver and kidney numbers are doing good.  She is peeing great.  She is maintaining her blood pressure on her own and they turned off the pressors.  There is talk of extubating her and getting rid of the ventilator and breathing tube later today.

On the cancer front, her numbers are improving.  Her ACN which was zero is now 200.  Still not flash but improvements are what we are looking for.

She opened her eyes this morning when Hamish talked to her.  She is resting mostly but stirring and asking for things with her own way of sign language.

We are so so so relieved.

Aria is a fighter!

Your prayers are working.  Please keep praying!!!

Aucklanders- please please please consider attending this prayer meeting.  Storm the heavens for us.  God is listening!

Sunday 3.30pm at Redeemer 30 Hilltop Road or FACEBOOK

These are the words that came to my head this morning when one of the staff told me, with tears in her eyes, that Aria had a bleed on her brain and was unlikely to make it.  Turns out things are not great but not that bad.

Aria lost consciousness on on the Peds floor this morning.  She had a rough night with fevers and headaches.  This morning her head was bobbling back and forth and she started to slump over and roll her eyes.  That’s when I quickly got the nurse and the people started piling in and the PICU team came up.

Her pupils became fixed to the right and dilated and she was unconscious.  They had already been in early in the morning to check her belly for an internal bleed as her platelets were low.  So a bleed on the brain was looking the most probably event.

When I got this news, I didn’t cry.  I simply said ‘We have done everything we can for her, we are not afraid, she is going to heaven’  Shaken I called Hamish and told him ‘Drive safe please but this is what is going on’  I text some of our friends to please pray.

They pushed IV fluids and Aria started to come around.  I heard her calling my name.  Ok – so this is good.  This means no bleed on the brain because it would not get better that quickly (or at all).  The team took her down to PICU and I held her hand and she looked at me and looked fine.

Later in the PICU she crashed again, they had to intubate her and put her on pressors as her blood pressure got very low.  The currently theory is she is septic or battling a virus and has NO reserves.

There is no reason to think she won’t make a full recovery.  But she is in for a bumpy ride, things are likely to be worse before they get better.  AND she still has the cancer to battle.

Aucklanders- please please please consider attending this prayer meeting.  Storm the heavens for us.  God is listening!

Sunday 3.30pm at Redeemer 30 Hilltop Road or FACEBOOK

Rewind to yesterday morning.  Epic meltdowns of giant proportions.  Ok that sounds a touch dramatic. For me, I had spent 4-5 day rationalising Aria’s PTLD.  ‘It’s not really cancer, she is only on Chemo Lite.  Finally it could not be rationlised any more and it all came crashing down.  Two transplants and now cancer!? Seriously!?

Seeds of bitterness were being sewn in my heart and I allowed it.  And at the same time it terrified me.  Finally now am I losing my faith?  Finally, will this be the thing that makes me turn my back on God and all I know to be true?

We have never blogged about life between transplant failure and Aria’s relisting.  For a variety of reasons we haven’t and might not.  But during that time I felt like a path way was opened up to me to walk down and turn my back on God.  It looked very good and it made sense and no sense all at the same time.

Frustrated and grieving I headed into hospital yesterday.  What was to happen there was even worse.   After speaking to the staff about the frustrations that had set off my meltdown things started to become clearer.

Aria’s cancer is actually much worse that we first thought.  Last night she started full blown regular chemo.  The stuff that makes you sick and causes you to lose your hair.  Her cancer is on her bone marrow and that causes organ failure.  Her liver and kidney numbers were bad and her gut is dumping more again.  Signs of organ failure?  Maybe.  Worse again home is way off.  In fact if we did take Aria home and she was to get sick it is unlikely we would be able to get her to the hospital in time even though we live 20 mins away.  Aria has ZERO bone marrow, NO ability to fight infection.  NONE.

Bad news, very bad.

Suddenly though we felt better.  What?  How could this be?  Well we had clarity now, as least we understood what we were up against and exactly what was going on.

The rest of the day I felt good.  I went home but felt like God was a million miles away.  I told my friend Steph via email and cried on the phone to Hamish.  “He hasn’t left us has He?- where is He”

Asher was up most of the night and when I got to bed there were no words to pray and I opened my bible and closed it again.  I couldn’t reach out to God yet He started to seem ‘there’.  What was this peace?  I prayed that God would not take it and then went to sleep.

The peace was still there in the morning and lasted while I battled Asher to take his antibiotics.  That child is stubborn!  We prayed and we got thru it.

Aria did really well during her chemo.  They flooded her with fluid cause that is what you do.  Everyone was worried, she was already fluid over loaded how would she cope.  Thankfully she peed HEAPS!  and her weight when down even.

Round was supposed to be full of hard questions.  How long does she have?  Etc etc.  Except they were positive.  People seemed almost pleased.  Her liver numbers and kidneys numbers are better!  Much better.  Her bone marrow is showing rumblings of improvement which is surprising after one dose of chemo.  We were told it would take weeks.  If things continue on Monday there will be a plan to *talk* about home! Wow!  AND her EBV count dropped again to 500,000, again surprising given we were pumping her with steroids.

Finally, everything we suffered and struggled with and everything we learnt about God between transplants has crystalised.  We are standing on this rock!  This rock of Jesus.  It is amazing.  Cancer isn’t the last straw.  It is just part of the plan, the big huge plan we can’t see but have faith that it exists.  Cause that is what God has told us.

Thank you to Corina and Rebecca who have sent me these verses and encouragement.  This is SO true.  I prayed that I would know this strength and I have!  I so have!

Isaiah 40:28-31 (New International Version, ©2011)

²⁸ Do you not know?
Have you not heard?
The LORD is the everlasting God,
the Creator of the ends of the earth.
He will not grow tired or weary,
and his understanding no one can fathom.
²⁹ He gives strength to the weary
and increases the power of the weak.
³⁰ Even youths grow tired and weary,
and young men stumble and fall;
³¹ but those who hope in the LORD
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.

Thank you for all the lovely comment on the previous post.  Thank for all the beautiful words.  They do make a difference for sure!

Aria had her first cycle of chemo lite on Friday.  It went really well and she was transferred back up the the regular ward the next day.  She also has 5 days of steroids and the those finish up tomorrow.  Apart from being fluid overloaded and a bit emotional at time she is doing good.  Eating eating eating!  Sent me down to the cafe this morning for bacon and eggs.  She is nibbling constantly.

Asher is finally better.  He spent almost 4 days having high fevers and pretty much down and out.  Day 4 of antibiotics for him and he is on the improve.

Right now I feel like there is so much to say but very little energy to do so.

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?”
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.  They are pretty much sitting at zero.  And have been for two week or more.

I guess alarm bells must of started ringing today.  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.  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.  We thought PTLD was off the table.  We rejoiced that it was.

Please pray for us.  Asher is also pretty sick with a double ear infection, poor boy.

We feel really downcast.  Life is tough right now.

God is still good.  Maybe some will ask ‘Where is your God’  Fair enough.  But He is still here, living and loving us.  Loving Aria.  His plans are great.  He is great.

We are crazy tired.  Tired.  Tired. TIRED.  Sleep for a week tired.

Despite the change in ABX yesterday Aria still spiked a fever in the morning to 39.4.  Her worse one yet.  Even morning without fail.  She sleeps well from 10pm to 3am and then starts to spike a fever and is unsettled from 3am onwards.  By 6am I am so tired I start to get emotional and teary at the sleep deprivation.

The plan is to give the change of ABX another 24 hours and that should do the trick.  I am not convinced at all and not excited about the plan but that isn’t a good reason to switch ABX a third time.  Hopefully I am wrong.

Last night was my night at home to get a full nights sleep.  Except Asher was sick last night and I was up and down all night.  Torture.  I was SO tired and it was hard to get up.  But what’s a mum to do when her little man is not happy?

As Aria and I were leaving the carpark and driving home after her last admission on Friday she said ‘thank you mummy and daddy for doing sleepovers with me’  It was really sweet and out of the blue.  I think she understands that sleeping on a narrow lumpy pull out couch isn’t fun for anyone.

Current plan tonight is to leave Aria in the hands of of the nurses for the night and for both Hamish and I to get some sleep.  Feels hard but there is only so much we can handle.

Did I mention that Aria has lost all her eyelashes and eyebrows?  The skin on her scalp used to be able to be flaked off, now it just peels off taking her hair with it.  She has big bald patches.  I don’t know whether to leave it or not, there are no patches of healthy scalp and it will all come out eventually.   There is something troubling about being able to peel your daughters hair off and she doesn’t make a sound.   The stares in the elevators are getting particularly hard.  My current trick is to place myself between her and people like a shield, saves the stares and the chatting.  Failing that my next idea to wear a tshirt  ‘I am a New Zealander, we don’t talk on elevators’

Yeah, today is a hard day.  Grumpy much?