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In memory of our lovely Aillidh

1439 replies

expatinscotland · 08/07/2012 11:56

At 11.25 last night, our beautiful, 9-year-old daughter died of complications from treatment for acute myeloid leukaemia, she went into respiratory failure after contracting human metapneumo virus following conditioning chemotherapy for stem cell transplant.

For many days, she lingered on a ventilator. But last night, she developed a pneumothorax and rapidly deteriorated.

She died within seconds of the ventilator being taken off.

I can't believe she's gone, or how broken her long body looked.

OP posts:
crazynanna · 29/07/2012 22:56

I cannot tell you anything to make you feel better lovely lady. I just want you to know all our hearts' are broken...but then you know that xx

Geranium3 · 29/07/2012 22:57

what a terrible shock Aillidh's diagnosis must have been for you. She looked so beautiful and vibrant in her photos with such gorgeous hair

OhDoAdmitMrsDeVere · 29/07/2012 22:57

(((Expat)))

x

Northernlurker · 29/07/2012 22:59

Expat there were some verses I referred to on the prayer threads for Aillidh a couple of times. I referenced it then because we were praying for strength for A and for you. I suppose I saw it as a reference to a short term challenge. Today it was read during our church service and I heard it differently. It's for strength life-long, in the face of things beyond endurance or understanding. Of course I thought of you and Aillidh when I heard it. You are in our hearts and our prayers.

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.
He gives strength to the weary
and increases the power of the weak.
Even youths grow tired and weary,
and young men stumble and fall;
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.

justonemorethread · 29/07/2012 23:03

I've been so angry for you on your behalf, Expat. It is so unfair, and as someone said upthread, you deserved for her to win.

I know our sadness or anger cannot help you, but I so wish we could all share some of your burden, to help ease your heartbreak.

Much love, from a stranger.

3girlies · 29/07/2012 23:06

Yes, so sorry, just been through similar. Angry too at why they were taken from us. Thanks for your lovely messages, hope I can help you too. X. Just what you said about how they look after they have gone, same here. x.

Northernlurker · 29/07/2012 23:18

3girlies - so sorry to read that Sad

IvanaNap · 29/07/2012 23:18

This reply has been withdrawn

This has been withdrawn as this poster has privacy concerns.

SolosGreatBritishOlympicGold · 30/07/2012 00:27

Expat, your Sun 29-Jul-12 02:06:59 post has me sobbing again here... your strength though! you are a lioness! and your faith; I have faith, but I envy you yours...

I was at a wedding on Saturday and Aillidh came to my thoughts again. I prayed for you all again and I hope all our prayers are helping in ome small way...

3girlies :( so sorry for you too.

God love all our beautiful children.xx

Elephantscantdothetriathlon · 30/07/2012 06:58

Your post last night made me sob. You were so lucky to have here in your lifes but it woiod be better too have her forever. X

StealthPolarBear · 30/07/2012 07:16

Still sending love expat x

WheresMyCow · 30/07/2012 08:21

Not that my words can do anything to ease the pain that you are feeling right now, but just wanted you to know expat that you, Aillidh and your family are still very much in my thoughts xx

expatinscotland · 30/07/2012 12:54

Her lovely, creamy skin was still discoloured from the Busulphan. Her beautiful eyes - the irises were all red from haemorrage and the lids heavy and dark. Her abdomen all distended. Every strand of her lovely hair gone.

OP posts:
StealthPolarBear · 30/07/2012 12:57

Awful disease and awful treatment. She absolutely shone through it all. So many of your posts showed her strength and humour.

Northernlurker · 30/07/2012 13:03

She was very ill. Illness changes people's appearence. I've seen patients that I've seen three times a week and then when they've been desperately ill, i've barely recognised them. But they are still the same person and Aillidh was still everything she was. She was ill and at the point of death and she was still your girl and she knew your love. Cancer robbed her of looking like her but it couldn't steal her heart and soul, that's always with you and with her Heavenly Father.

LurkingAndLearningLovesCats · 30/07/2012 13:04

Not a day goes by that I don't light a candle for Aillidh. My parish priest is retiring and he lit a candle for her at his final mass on Saturday and asked her to include her in our prayers.

Oh expat, there's just really nothing we can say. Words just don't help. :( We all grieve with you. :(

SolosGreatBritishOlympicGold · 30/07/2012 13:34

Expat, try to remember Aillidh at a time that she looked her absolute best. I'm sure I don't need to tell you that that is how your beautiful Aillidh will be looking now in Heaven with Our Lord. Our loved ones are in perfect health and at their most beautiful when they leave their sick and worn out earthly bodies to enter into the Kingdom of Heaven to be with God.x

Elephantscantdothetriathlon · 30/07/2012 19:11

Expat, illness robs people of there looks. She will look as beauriful as she did before this horrid illness now and she is safe with god, healthy now. She will always love you and you will never let her be forgotten. Mn will never forget her, i am still praying for you. Love x

expatinscotland · 31/07/2012 00:42

She was a child. When we saw her at the funeral directors, all the discolouration from the Busulphan was gone in her face. We didn't check out the rest of her, she was zipped up then. And you know, the overwhelming feeling I got was that she wasn't there.

She still had the hat, knitted by a breast cancer survivor, on her head, and the dress she never got to wear on her 9th birthday, being already on oxygen and feeling very ill. The psuedomonas and metapneumovirus having already done their work on lungs with damage unable to be detected by every test from 4 rounds of 7-10 days straight of chemo from 1 December 2011 to 10 May 2012.

I didn't Google too much, after her diagnosis and cytogenetics. Instead, I went to two doctor friends and other friends, particularly a genius who achieved a PhD in genetics at 25 and qualified as neurosurgeon in the US at 30.

Her FLT-3/CD135 positive abnormality was utterly damning, particularly because she did not remit of this abnormality after the induction round. She remitted of the translocation 6,9, the less-worrying, and was in morphological remission, but the other was still there. I had wanted to see someone alone, to hear the truth alone, so he met me on Skype. 'Here I am, alone in my room,' he said. Then he told me, he'd hacked them, he'd read everything, he'd consulted with others, he works in a world-renowed place. He said her bone marrow was FUBAR, no one knows why or we'd not be here, but his opinion is that she was born with it and it had a viral trigger, based on the history of her he'd collected from me, which would have happened sooner or later, and that trying to transplant her was the only way forward, as every drug known to treat AML had been used on her to obtain remission and maintain it. He concurred completely with her consultant and with the care she'd received and so did everyone he'd conferred with, but he made it clear, the risk of death from the procedure, but that the balance was greater of relapse. Far greater. Only later did I learn, persons with such a FLT3 mutation are mostly damned.

Her cancer was incurable with chemo alone, and we were SO blessed to have the consultant we did. 'It WILL come back,' was what she had said. And though I didn't want to believe her, and mostly didn't till the end, she was right, and had a vast amount of experience to draw on to make such a statement, I just didn't know her well enough then.

If she hadn't died, what would have been ahead? We'll never know.

OP posts:
SolosGreatBritishOlympicGold · 31/07/2012 01:01

No, you will never know. You only know that the suffering would not have ended completely if Aillidh had become well again and that she and you, would have had to go through all of that awful, awful pain, treatment and suffering yet again. You know that you and she would have been devastated again at its return and that both of you would have known the pain and suffering that would lie ahead of you all. You know now that she is pain free and smiling down over you from Heaven and that you will meet again when Our Lord calls for you.

Elephantscantdothetriathlon · 31/07/2012 06:47

You will never know what could have been. You only know that you and aillidh would have to suffer the pain again. You are blessed to have a daughter like her. One who has left a legacy behind her that many adults will never achive. She is no longer in pain. She is hethy with our lord and you will meet again.
X

ElephantsCanRemember · 31/07/2012 06:57

Oh Expat Sad "call me maybe" came on the radio yesterday and i thought of you, Aillidh and your family. I know you must wish we didn't all know her name, if it meant instead, that she was still here.
She was loved, so so loved. I didn't know her but only have to close my eyes to picture her smiling face. Aillidh has left a mark on thousands of people, all over the world. What a wonderful courageous young girl she was.

ChippingInNeedsCoffee · 31/07/2012 07:24

Expat :( the poor little darling really was fighting against something so huge wasn't she... so so unfair. Solo said everything I wanted to say & so much better than I could. Lots of love & strength xxx

DancesWithWoolsEnPointe · 31/07/2012 07:25

Expat - Just another stranger popping in to send my condolences and virtual hugs. I am tremendously sorry that your gorgeous little girl received this lot in life and I am sorry for you, your DP and your other DCs too that you have been given this burden to carry. It seems like Aillidh in life was such a strong little girl and so brave in the face of adversity, I am sure in the next life she is already making her presence felt :) And you are such a strong woman, in your faith and in love for your DCs. I admire you.

I was deeply moved by your posts about how Aillidh looked at the end. A friend of mine in RL life has a DD with a terminal brain tumour. She is okay (relatively speaking) at the moment, but the tumour is inoperable and aggressive, and the end in inevitable. Imagining what you wrote on my friend's DD made it so much more real to me. Cancer is an absolute bastard, and childhood cancer is just so unbelievable unfair. She just turned 9 too.

bagpuss · 31/07/2012 07:40

Expat, I'm so sorry. Thinking of you and your family xx.

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