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Prayers for Aillidh.

939 replies

chipmonkey · 11/05/2012 12:24

Just wanted to start a prayer thread for expat's little girl, Ailidh, who has been very ill with leukaemia. Just wanted to show our support and pray that her treatment works and that she is back in action very, very soon!

OP posts:
EdgarAllenPimms · 11/06/2012 14:09

Trust yourself on your choice for now - you're acting from love.
You don't have to deal with what tomorrow might bring today - just one day at a time is enough.

It is very very hard to bear though. and you have done so well for much much longer than i had to.
:(

chipmonkey · 11/06/2012 14:10

Because you have to fight, love. For as long as she can fight and sometimes you have to fight for her when she's too weak to fight herself. Then you know you did your very best, no matter what. But it's horribly unfair.

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mummylin2495 · 11/06/2012 14:44

Expat.You are going through every parents worse nightmare.You have to think you are giving your daughter the best possible chance to get well.You say there is an 80% chance of a relapse,but this also means there is 20% chance of her making a full recovery.This is what you have to keep in your mind,although im sure it is difficult in your circumstances.If people could bottle up hope,bravery, belief that a recovery will be coming and anything else we would all be sending you bottle loads of it.My very best wishes to your dear dd and to you who are having to go through this terrible time too.

expatinscotland · 11/06/2012 15:30

I should never have consented to this transplant. I should have taken the 20% risk. Now she is paying the price of my foolishness. I listened to all their scare stories. I sometimes hate them for that.

She's ill beyond belief. Locked up in strict iso this is 7 weeks now. No end in sight. No sign of this graft doing FA. To put her own cells back means more fucking chemo. That will kill her. This round nearly did.

Now there's nothing we can do about it. 'The die is cast.' That's what Julius Caesar said when he crossed the Rubicon. Look where it got him.

Maryz · 11/06/2012 15:34

This reply has been deleted

Message withdrawn at poster's request.

expatinscotland · 11/06/2012 15:39

there is NO ONE to sit with her. only DH and I are allowed in. We have two other children and live 2 hours away, have only one car and now DH has a cold. the kids had stomach bugs before that.

i have been here 24/7 for 7 weeks.

i feel like stripping naked and living in the street, i'd get more peace.

did i make the right decision? no, i think i was bamboozled by her consultant, a doom monger, when i was vulnerable and then dropped in it like a cow in a market.

we all feel like cattle here. our kids are numbers.

i hate this fucking place and mostly i hate myself for not just taking her home.

this has all been for FA.

Maryz · 11/06/2012 15:45

This reply has been deleted

Message withdrawn at poster's request.

TanteRose · 11/06/2012 15:45

Holding you and Ailidh in my thoughts, expat. Can't begin to imagine the stress you must be under Sad

Stay strong for your gorgeous girl

TanteRose · 11/06/2012 15:47

I also sorry, I spelt her name wrong Blush

Thinking of Aillidh xx

Sirzy · 11/06/2012 15:47

Been trying to find the words to respond to your latest posts :( I can't imagine how your feeling but agree with 'maryz

sassytheFIRST · 11/06/2012 15:48

Expat - its so awful to read you sounding so defeated. Nothing much I can say except that we are all rooting for you and yr lovely brave girl. Really hope she turns a corner very soon x x

expatinscotland · 11/06/2012 15:52

There's no break, ever. No play specialist, they got rid of her in budget cuts, none of my mates can come and sit with her and she is too ill for schooling just now.

DH needs to be 100% better before he can even think of coming as she is such a huge infection risk.

She has taken, in the past 31 days since transplant: typhilitis (spent 5 days on a morphine pump that was making her hallucinate badly and offering her no pain relief before they put her on ketamine for another week), mucositis, a fungal infection, sinusitis, throat virus, throat virus that went into her lungs, a gram bacteria in her lungs, blepharitis.

And there's no engraftment.

She has NO immune system. If they have to hit her with more chemo to give her her own stem cells, which are known to produce a rare form of leukaemia back, it will kill her, either right after they attempt it or soon thereafter.

If I had never consented to do this, she would have a 20% chance of not relapsing.

I make the wrong wager because I was bamboozled and scared out of my wits by Dr Dementor, and now she is paying the price with her health and possibly her life.

And I have nothing but times on my hands to look over and see the result of my signature on the dotted line.

mummylin2495 · 11/06/2012 15:54

Oh Expat,we all wish we could help in some way,but sadly there is nothing we can do but try and give you our support.What a difficult position you are in.Would they not let someone come in to sit with you if they had sterilised outfits provided by the hospital ? It seems grossly unfair that just when you need all the support you can get you are denied this.Especially if dh is ill.You can only do what you think is right at the time.If there is anything at all that we could possibly do to help ,do please let us know.

Maryz · 11/06/2012 15:58

This reply has been deleted

Message withdrawn at poster's request.

chipmonkey · 11/06/2012 15:59

expat, what I went through is not the same thing as what you're going through. But honest to God, there is nothing worse than looking back and wondering if you could have done more or done things differently. When it comes to the survival of a child, of course you will do whatever give them better odds.
She is having a bad time, that's true. But that is NOT YOUR FAULT! You made a decision that any mother would have made given the same odds. She is having to put up with the worst medicine because she has the worst disease. But you did the right thing and you made the right choice.

OP posts:
expatinscotland · 11/06/2012 16:00

As of now, because she has no immune system and the graft is not working, I have effectively killed our child. The 20% is now nil. I should have gone with my gut and not done it. But I trusted, because I was scared and stupid, and now there is nothing to be done about it but watch her deteriorate even further.

She rarely sleeps. Not even on ketamine. She's up all night pooing, coughing or in pain. Or people coming in all night, every night and no respite during the day.

And she doesn't want me to leave her. I wouldn't, either.

mummylin2495 · 11/06/2012 16:01

is there any professional person that could be paid to come in and give you a break,even if only for a couple of hours a week ? I would happily help towards something like this.

wordfactory · 11/06/2012 16:03

expat no. Just no. NO, NO, NO, NO, NO.
Anyone would have made the same call. Anyone.

Any adult woul dhave made the same call for themself. Any parent for their child.

mummylin2495 · 11/06/2012 16:04

You have not killed your child,you have done all you possibly could to give her a fighting chance.And i think that all of us would of grasped at any straws that we were given.It is not your fault.

StateofConfusion · 11/06/2012 16:04

Expat do not blame yourself, I'm sure everyone one of us would have done the same. Please be gentle with your self.

I continue to pray for you, Aillidh your dh and ds and dd. Xxxx

Sirzy · 11/06/2012 16:04

But expat if you hadn't done it you would have felt guilty for not trying. At least you can hand on heart say you tried everything.

You haven't done anything wrong, that is due to the horrible disease

Maryz · 11/06/2012 16:05

This reply has been deleted

Message withdrawn at poster's request.

ShirleyKnot · 11/06/2012 16:06

Oh expat. This is not your fault.

expatinscotland · 11/06/2012 16:06

No, there's no one they'll let in.

chipmonkey · 11/06/2012 16:08

Right, well, if it's a miracle we need then we are praying for a miracle!

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